Riding Rollercoasters

Marathon Moments--Day 2--7/2/2011

2011-07-02T11:08:00.000-07:00

A little more success this morning....Gave up two cookies (of 4..HA!), had a banana, 3 Catalyst, and a Diet Coke. :) It's a little better, I guess?!?!

Start Time: 6:55am
Distance: 6.11
Pace: 10.12
End Time: 7:56 am
Calories: 850
Ended the week: 25.48 miles (Sun-Sat)

Tomorrow will be a rest day, which will include NO running, but I will do P90X Yoga X in my garage in 99° heat...so, that would be considered Bikram style?? Yes?? (I really think I would rather run!!)

Until next time...grace, peace, hope, love and prayers!

T

Marathon Moments--Day 1--7/1/2011

2011-07-01T10:01:00.000-07:00

Well on Monday I got the news that I was in fact accepted into the Houston Marathon. I'm anticipating that as the months, weeks and days pass, I will find myself full of excitement and probably on some days full of dread! Today, I'm excited and full of hope. I've decided that I really want to have a daily record of this journey, so those of you that get my blog because you love my cute and sometimes witty stories of my kids, it's not always going to be that. However, just like my life parenting my boys and all that is autism, it's a journey and a struggle that I want to cherish and remember. So today is Day 1 of my Houston Marathon Journey....

My Marathon goal is to complete it in 4hours.
Official Training Begins Sept 12 using the 26Point2 App for iPhone

Day 1
I've been mostly running at night 8-9 PM about 5-6 miles, 5 times a week. I'm trying to log about 25-30 miles a week. I'm a terrible morning runner, my per mile pace is about 30-60 seconds slower. Today I decided I need to slowly start training my body for mornings. Got up at 6:00 am, ate 4 cookies and drank a Diet Coke (what am I, an idiot??---dont' answer that). Ran 4.18 miles, felt sluggish the whole time, but this thought kept creeping into my brain....what if I not only complete my first Marathon, what if I actually meet my goal of a 4 hour finish? That's a good enough time to qualify for Boston!! (THE Marathon!!) Today, I really think I can do it!! But I gotta start getting up early and NOT EAT COOKIES!!

Stats for today:
Distance: 4.18
Pace: 10:42 per mile
Calories Burned: 580
Total for the Week: 19.37

Thought for the Day:
Nothing is Hopeless--If you ask me today if I can go out and run 26.2 miles in under 4 hours, I would tell you NO way!! But this past week I've been studying Jeremiah 18 and I surely don't want to be like the people of Judah in verse 12 "But they will reply, 'it's no use. We will continue with our own plans; each of us will follow the stubbornness of his evil heart'" My lazy heart tells me "why oh why are you doing this silly marathon, what are you trying to prove"...well my joyful heart tells me as does Proverbs 16:3 "Commit to the Lord whatever you do, and your plans will succeed." So you can surely see where my heart lies with my Savior and Lord and I have hope that my plans will succed. And if this Marathon isn't part of His plan for me, well then so be it, but for now....I think it is!

Until next time....grace, hope, peace, love and prayers!

T

Oh yeah, he's got swag!

2011-06-24T06:34:00.000-07:00

The last two days of picking Spencer up from school, he looks over at his Therapist Kori and says "eee, gon-k-ddis". It's hilarious, he looks at her says it and starts cracking up. She told me he's saying "redonkulous" and that he will look across the room even when they aren't working together, and say it. I've been making him say it all the time, becuase it's so funny. Well, the jokes on me, cause all along what I THOUGHT was a funny little word that he and Kori made up is actually "pop culture slang". I heard it on TV last night and was like, whaaattt??? that's Spencers word, so I googled it and sure enough the Urban Dictionary has this definition....re.donk'u.lous adj. 1. significantly more absurd than ridiculous to an almost impossible extreme; without possibility of serious consideration.

Who knew, my boys got more swag than wiz kahfila.

Have a REDONKULOUS weekend y'all!!

Until next time....grace, peace, hope, love and prayers!

T

It's the Little Things

2011-06-23T10:56:00.000-07:00

It's been almost a year since I last blogged, but found myself reading those old posts and just about kicking myself for not keeping up with it. The past week I keep telling myself, I'll blog later tonight and I don't. Today I was going through my notebook..that dumping ground where I take notes from meetings. It's a total wreck with work meetings, church meetings, etc. I came across a sheet where I had given Spencer a highlighter and pen to "entertain" himself during one of these meetings. I didn't think much of it at the time, but today as I was eating my "rabbit food" at my desk, I looked up and noticed a similar drawing from Feb 2010. It probably doesn't seem like a big thing to most people that my son after 16 months has somewhat legible handwriting, but sometimes you just have to be thankful for the little things.

Drawing from Feb 2010

Drawing from June 2011

A good friend gave me a slip of paper that stays clipped to the first picture that gives me hope...

"I know that recovery lies ahead. I believe that if we were the ones chosen to endure this hardship, then God will give us the grace to endure...My hope isn't based on my circumstances. My hope is based on my decision to hope. Hope is a choice." --Brenda's Choice--the choice to focus on her future beyond the storm.

Until next time, grace, hope, peace, love and prayers!

T

Cursed is the one who trusts in man, who depends on flesh for his strength and whose heart turns away from the Lord.
But blessed is the man who trusts in the Lord, whose confidence is in him.
Jeremiah 17: 5 & 7

He Amazes Me When I Least Expect It

2010-07-21T04:55:00.000-07:00

Many of you are intimately aware that Spencer is not potty trained. Okay, well maybe he is, but only if I remember to take him. Call me lazy, forgetful, scatter brained, whatever; I'm just not very good at remembering to take him. We (okay so maybe the therapists mostly) have been working TIRELESSLY the past year on teaching Spencer to "mand". (I think I've explained this before, but "manding" is basically the skill of "asking" or "requesting" something.) This is CRITICAL to move to the next step in getting him OUT OF PULLUPS for good! (Cause let me tell you, a 9 year old poo is no fun at ALL!!). This is the one thing that makes me crazy and completely irritates me about having a kid with Autism. I mean, come on I have been changing diapers for 11 years! ENOUGH already! (You might be thinking, geez Tami, if it bothered you that much you would not be so "forgetful" in taking him, but oh contraire it is not that simple...we do really good for a few weeks, but then I give up, thinking it will NEVER happen. The only thing worse than changing a pull up is changing real clothes that have been poo'd on...YUCK!)

Well, we had a little break through at home yesterday. I got home and was a little sleepy, so decided to lie down on the couch and read a little while. Spencer was quietly playing his video game. (He loves his video game, but more than that, he really likes to watch someone else play.) So as I was reading I started to doze off a little bit. Next thing I know, I feel a little tap, tap, tap, on my arm. I think to myself, that it's probably Parker needing something, but as I open my eyes, there's sweet little Lou standing there with the Wii control in his hand looking at me. I asked, "Do you want mommy to play?" He says "ess".

Please pray that we get to see more manding, I feel like we are so close!! More than that please pray we get him out of pull ups before he turns 10!! :)

Until next time...grace, peace, hope, love and prayers

T

The Amazing Music Man

2010-07-14T09:12:00.000-07:00

Most of you know how much Spencer LOVES water, specifically water in motion, like sprinklers and splashing. You also probably know how much he likes music. Well, last night I went to pick him up from my mom’s house and she said he was making music with the water. We talked for a minute about it, but I really didn’t actually witness him doing it. We get home about 8:30 and needed to water the front plants, so I hand him the hose to help me out, his favorite job of all!!

After about 10 minutes my neighbor Bekkah pulls up with her friend Darian in the car. Both of these girls absolutely adore Spencer; Bekkah babysits for us and Darian is his caregiver at Promise Land. They hop out of the car and come over to talk to me and visit with Spencer. We start chit chatting and Spencer goes on about his way of watering the plants. Now that he realizes I’m not watching, he starts watering everything else; the house, the windows, the concrete ground, the grass, ME, the girls, everything. As he was doing so I noticed he seemed to be not only watching the water but listening to the sounds the different surfaces made when they were sprayed with water. (He especially liked the reaction he got out of us when he sprayed us!) I started thinking about what my mom had told me and realized YES, he is making music with the sounds of the water!! He would “spray, spray, spray the grass, then spray, spray the windows, then spray, spray, spray the grass again, and then spray the door, then spray, spray the windows again. I know that probably doesn’t make a lot of sense reading it and you have zero perception of the different sounds it was making. If you were there listening to it though, you could start to recognize he was making a pattern, and I like to believe he was trying to make music!! He is AMAZING….The Amazing Music Man!!! I think he may be on to some cutting edge new music movement!

Until next time, grace, peace, hope, love and prayers!

T

The Little White Rocking Chair--CBTX Part 2

2010-06-29T17:19:00.000-07:00

Last post you got to hear all about Parker’s time at Camp Blessing but the heart of that story lies with his brother. Spencer went to Camp Blessing for the first time last summer (Camp Barnabas back then) and had an amazing time. I can’t even begin to tell you how nervous I was about sending him. This is very ironic if you know me very well, I am super laid back in my parenting style and pretty much give my little birdies their wings and then gently shove them out of the nest to fly on their own. Parker was sent to a week long overnight camp at the young age of 7. But with Spencer it’s very different; he seems so “helpless” for a lack of a better word. He struggles with very basic things…showering, eating, dressing; and he is a big time wanderer. I was so worried about him getting lost, forgotten or yes, I even thought what if someone mistreats him or “takes advantage” of him and he can’t stand up for himself or defend himself. And to add to that, he can’t talk so how would I even know what happened at camp, and even worse if something bad happened!! The drop off last year, I was a complete basket case, I cried the whole way home. So worried about him!

This year was TOTALLY different!! I was so excited to send him! This due to the amazing time he had last year and the very special friendship we have since formed with his counselor, Mike. A few days before he left Mike asked if we were okay with having him be Spencer’s counselor again this year!! Of course, we said yes!! I felt so comfortable him being there, I honestly didn’t even think about it once while he was gone!! (Last year I think I emailed the camp director every day!)

When pick up day came around, I couldn’t wait to see him!! We first went by Parker’s cabin to get him, because I was most curious about his experience as a sib. We then headed over to Spencer’s cabin, we walked in the door and he got a big smile on his face and gave us all big hugs but was quickly back to being interested in looking at his camp book with Counselor Mike. Spencer can’t tell us what went on at camp, but I KNOW he had a great time. But for us to know about his time there, we have to rely on what his counselors tell us and our own feelings and impressions of the experience.

There are so many things I would love to share about my impressions and feelings, but so much of it really can’t be put into words. I could probably sum it up that the people there are probably the closest example to Christ like love that I have ever witnessed!! In the world of parenting a special needs child, we are often faced with adversity, prejudice, side ways stares, and sometimes people being down right nasty. (But then again you see that everywhere no matter if you have a disabled child or not) To see such an out pouring of genuine love for all the kids is such an amazing testament and at the same time reassuring that there is good in this world. On top of that, many of our special kids have behaviors and tantrums that aren’t for the faint of heart and as parents we deal with them in hopes of a rare smile and hug from our kid. But to see these volunteers willingly and boldly stand up to the challenge and give so much of themselves for very little in return, is truly amazing. Man, you can just feel the presence of the Holy Spirit when you are in the room during closing ceremonies.

Okay, so those are some of the things I felt, but here are a few little tidbits I got from Mike when we picked him up….

The Cross Carry
I think this is my favorite story from camp. During the last night at camp they have a Cross carry where the Cross goes from cabin to cabin and as it does each group comes out stands around the Cross and they pray over the week. Mike said they had some “challenging” kids in their cabin, so as they were going around, the counselors would say things like, "thank you for giving me patience", "thank you for giving me wisdom", etc. Mike said when it came around to him; he felt kind of bad because Spencer is such a joy, he prayed, "thank you for joyfulness, smiles and laughs." I just LOVE that!!

The Little White Rocking Chair
At the end of camp the parents come and they have a closing ceremony where we all gather in the main room, the worship band plays, they show a video and the Directors talk about the week. As we are sitting there, Mike leans over and said “see that little white chair over there with the drum? That’s Spencer’s chair. He got to sit there every night with the worship band and play his drum.” Right about that time, the band started getting into position to play and Spencer hopped right up, went on stage and sat in his chair and played along with the band. I LOVE IT!! (Wish I had a picture, but here's one of little drummer Lou)

Everyone Loves a Spencer
As we were about to leave, we were saying our goodbyes and KT, the keyboard girl from the band, came up and introduced herself and said how much she loved Spencer and wants to come hang out with him sometime. Well, about that same time a few others came up and were saying how much they enjoyed spending time with Spencer. Mike, then says to me that they have decided that he can’t be Spencer's counselor anymore, because he needs to share the Spencer love with the other counselors. I said, “they are going to have to get my approval first.” But seriously, it fills my heart with so much joy and love to know that these complete strangers have grown to love both of my kids so much in just a few short days at camp. (here's a picture of Spencer banging it out on KT's keyboard)

When I get frustrated with Spencer and his autism, I remind myself that I wouldn’t have experienced this powerful example of Christ or have these people in my life if it weren’t for autism. Man, I am humbled beyond words, because I am so far from exhibiting this kind of love. It’s a powerful message that I have A LOT of work to do….

Until next time…grace, peace, hope, love and prayers

T

Mike gave Spencer the award for Joyfulness and chose 1 John 4:7

Beloved, let us love one another, for love is from God; and everyone who loves is born of God and knows God.

Parker Sees Things in a Different Light--Thank you CBTX!!

2010-06-22T09:46:00.000-07:00

Camp Blessing was totally awesome for the boys. Last time I said one of the biggest things I wanted from Camp was an experience for Parker that would expand his views on people with special needs and more importantly Spencer. God sure did listen!! He is definitely a changed boy!!! He had such a great time!! One of the first things he said to me was that he wanted to be a “Barnstormer” when he turned 13. (And he keeps telling me over and over again that he wants to go back next year and then be a Barnstormer the next). A Barnstormer is a younger volunteer at Camp Blessing that helps during meal times and with activities. For him to serve in that role at such a young age is so incredible and I’m so very proud of him that he wants to do it, too bad he has to wait another summer.

My very favorite thing for him was that he got to see Spencer in a different light. You see we have come to realize that Spencer is probably the most “popular” kid at camp. (Those are Parker’s words.) I think P felt really special that his brother was a camp favorite and that everyone was so in love with him. Parks now realizes that Spencer is in fact “cool” and he is really proud to be his brother. Before camp, I think he just saw him as somewhat "helpless" and a "bother". Don’t get me wrong, he loves Spencer, but Parker always sees us having to do things for Spencer, make special accommodations for Spencer, and listen to Spencer scream when he doesn't get his way. He often thinks things are "unfair" when Spencer gets more time on the video game, doesn't get "in trouble" when he screams in public. But for him to see so many people pour out so much love for Spencer and be genuinely in love with him, made him stop and think “hmm, my borther is one cool dude.”

Another cool thing happened on the drive home….Parker is generally annoyed with Spencer in the car, (because Louie is usually screaming about something: driving by a car wash, water fountain in a lake or any other sort of water thing that he wants or he’s pissed that his DVD player has run out of juice). But on the way home, I had bought Peej a pack of Now n Later’s (our favorite candy) and the first thing he said was “mom can Spencer have one”. SHOCKED!! “Yes, of course he can, that’s really nice of you Parks.”

Parker is such a really cool, amazing kid and to see him grow in this way makes me so very proud of him! I can't seem to put into words how their relationship has changed, but it has, it's just different now. Maybe more love, more respect, more compassion (okat that's going out on a limb..HA!). Parker got a Facebook account after camp so he can stay in touch with his friends and there have been quiet a few pictures posted of the boys. (You can see most of them through my Facebook page). Parker commented on some pictures of Spencer.. "love u forever" "I loved camp and my brother". Here's a picture of Parker praying with his cabin during the "Cross Carry"....

We were home from Camp Blessing for less than 24hrs before the boys and I headed to Ft. Worth for the weekend. I left Parker there on Sunday to stay with his Grammy and Craw for a week at TCU Basketball camp. He had a great time and his teams came in second in the 3 on 3 and 5 on 5 tournaments. He absolutely LOVES TCU and is stoked they are in the CWS (sorry Longhorn fans)!! He spent the evenings at the golf course with his Craw where he got his first EAGLE!!! He was sooooo excited!! He came home this past Friday night, got all his clothes washed and packed back up for his next adventure. We dropped him off yesterday afternoon at Pine Cove in Columbus, TX. I can’t wait to see how God will continue to work on him this next week at camp!!

Parker comes back home on Saturday and starts the Dan Miller Basketball Camp at Seven Lakes High School next week. Then we finally head out for our family vacation on the 4th. Should be fun and relaxing visiting with Mike’s family and hanging out on the beach in North Carolina! Such a beautiful part of the country!

Spencer has somewhat settled back into his usual routine of school and back on the diet. I plan to follow up with a second post about Spencer’s time at Blessing, because it was equally amazing!!

Until next time...grace, peace, hope, love and prayers!

T

Each camper is given an award at the end of camp and a special Bible verse chosen by their counselor. He was given the "Bravery" award which totally fits him, and here's the verse that was chosen for him...

Psalm 31:3 For You are my rock and my fortress; for Your name's sake You will lead me and guide me.

They Call it Camp Blessing for a Reason

2010-06-03T13:32:00.000-07:00

I know it’s been a very long time since I last updated, but things are moving so fast these days, it’s a miracle we get anything accomplished! But summer is finally here!! The kids have so much going on and so many cool adventures in the next few months I know it’s going to be a fantastic time!! I hope to be able to give more updates over the next few weeks as we venture through the summer!

This coming Sunday we drop the boys off at Camp Blessing (formerly known as Camp Barnabas). They are both really excited about going. The last few nights we have pulled out Spencer’s camp book from last summer and go through all the pictures and journal entries. He gets such a big smile on his face every time! We ask him if he wants to go to camp and he gets a huge grin and says “ess”. I can just tell by the look on his face he actually knows what we mean when we say “camp” and he truly is looking forward to it and is very excited!!

One of the neatest things this year is that Parker gets to go with him. They have one week each summer where the siblings of the special needs child can come along and they have activities just for them. I’m not really sure what to expect and neither is Parker. I have to admit I’m a little skeptical about sending him. He is a “seasoned” summer camper and has gone to Pine Cove in Tyler, Pine Cove in Columbus for 2 summer, Camp Allen in Navasota, Second Baptist Kids Camp and Second Baptist Next Level Camp. I’m sure it’s similar but these other camps are the “big guns” and cost a small fortune to send him. That being said, they are PACKED with so many activities that an ADD kid feels right at home! Anyway, we have been trying to tee him up for it and setting the expectation a little lower than what he is used to from Summer Camp. Last night we were in the car talking about summer plans and all the different camps he will be going to and he then started asking me about Spencer. It’s funny how an 11 year old thinks, he asked me “mom, since you and dad weren’t supposed to have kids because dad had cancer, is that why Spencer has Autism?” We had a long conversation about Autism and Spencer, why he has it, how his autism is different than some other kids. As we talked I realized, that Camp Blessing CAN give him one thing that all those other camps can’t--a broader view of people with disabilities, much farther reaching than what our family experiences.

What I pray for now and will continue to pray for over the next several days, is that Parker leaves camp "blessed" with a better understanding and appreciation for his brother, himself, our family and what it takes from all of us to raise Spencer up to be the most that he can be.

We are blessed, we are chosen, and it takes EVERYONE in Spencer’s life to help him and each other along the way.

Until next time...grace, peace, hope, love and prayers

T

Art, School and some not so good news......

2010-02-02T13:27:00.000-08:00

Since Spencer has been going to Spectrum he has to come to work with me a few days a week before school so I can get some things done before I drop him off. Generally we get there at 7 and leave about 8:45 to be at school by 9:00. He is always so well behaved, he just sits at his desk and watches his movies. Last week one day, he reached over and grabbed my purple marker and started drawing on a pad of paper....here's what he drew....

Everything on the top of the picture he drew himself. Once I noticed the "art" he was drawing, I made some little dotted lines with the letters of his name. He then traced the dots to make his name. Now, this in and of itself is not that remarkable because he has been "writing" his name like this for a long time. What IS remarkable about this picture....if you look at the top you can see 2 "e"'s that he drew independently without dotted lines. If you look further at the picture, you can sort of tell he was trying to write his name independently!!! A HUGE task for a kid with SEVERE Apraxia, very "weak" hands and fine motor challenges. YAY little buddy!!

I am soo proud of him! We had a review of his most recent VB-MAPP a few weeks ago. (This is his assessment tool that shows his progress.) He is currently being evalutead on about 170 points, when he was evaluated in August he scored something like 57 out of 170, when he was re-evaluated in October he scored in the 70's!! That is VERY impressive in just 2 months to have mastered close to 20 skills!! He will likely be re-evaluted every 3 months or so....he is making amazing progress!! The Supervising Therapist said he moves through their programs so quickly that she is having to write new ones every week!! Her words were "he sure does keep me on my toes and makes me work!!!

On the not so good news front.....if you look back at my previous post I was soo jazzed about the results of his most recent Challenge test....well, I was totally wrong in my assumptions. The EDTA wasn't any more remarkable than the DMSA, so we won't be chelating any more. The blood draw did show low Vit D, chromium and Molybdenum. So we are adding 3 more supplements. Joyous!! :) Next steps with Thoughtful House, I'm not real sure. I've decided to keep all the Biomed stuff in a holding pattern for right now. He's doing well, progressing at school, and is generally happy and compliant. I'll probably touch base with Lucas sometime in March to evalutate how Spencer's doing and see if there's anything we need to tweak or add/change. I'm kind of tired of all the biomed right now, it's a little bit of work, fairly costly and I'm just not seeing as much as I would like. That doesn't mean I'm abandoning it, I'm just burned out and need to take a break from it.

Until next time....grace, peace, hope, love and prayers

T

I'm baaaaaaack!! And I have some news to share!!

2010-01-08T19:30:00.000-08:00

I'm venturing back into blog-o-sphere!! I have been away quiet some time and a lot has happened. We have had a great fall!! The 5th grade Sparans made it to the first round of playoffs, but sadly didn't adjust too well to playing at night on artificial turf and lost.

We spent Thanksgiving in Ft. Worth at Dad's house where we had a great time!! We did they typical feast and football on Thanksgiving day. Little (that would by my little sister) and I of course HAD to take advantage of Old Navy being open on Thanksgiving day and got some ski gear for the little boys for our trip this spring. Friday we went to see my Meecie (my Grandma) and had a nice visit with her. That evening, the "kids"--that would be the adult kids and the little kids went to Holiday in the Park at Six Flags, which was quiet fun...the weather was crisp and they had that place decked out with Christmas cheer!! Parker FINALLY got his dad to ride the Titan...by far his (and dare I say my) FAVORITE roller coaster of ALL time.....check out this pic taken at the top of the 280 foot drop...SOO COOOOOL!!!!

Saturday we saw TCU spank New Mexico!! Lots of fun, Spencer LOVED LOVED LOVED the marching band. Even Spencer has turned into a tride and true Horned Frog....you hold up the hand sign and say what is this and he'll say "go gogs!" Very cute!! It's been a lot of fun watching that little school in Ft. Worth rise to national recognition...too bad they just couldn't pull it off agains Boise State in the Fiesta bowl. Here's a pic of Lou saying "Go gogs"

Sunday after Thanksgiving we took the boys to the Texans game. This was Spencer's first and I will say, I was a little apprehensive....he has this habit of wandering and we were planning to tailgate (just imagine what I was anticipaing....me chasing after him all over the Reliant parking lot). He was awesome!!! He stayed right with us while we cooked out, then he played a little football with Mike and Parker. During the game I was prepared to spend a good majority of the game walking aroudn the concourse with him, but once again the little dude amazed me....he sat with us the whole time, cheered and clapped and was full of smiles, he loved it!! This was a GREAT day!! Here's a great one of Mike...he threw a long pass to Parker and judging by the look on Mike's face the ball was headed toward someone's car and hot stuff tightend Parker James was not going to catch it!

The following weekend, my dad got tickets for "his girls" to go see the Big XII Championship game. Now before you get all excited about how cool it was that we got to witness the "great" game, let me tell you the first 3 quarters were a total snoozer!! The ball would travel up and down the field with zero TD's and I think maybe one or two field goals. But man oh man did that last minute make up for it...what a dramatic ending!!!

The following weekend I took Spencer to Austin for his EDTA Chelation (this is the one that is done through IV so we had to go to Thoughtful House to have it done). It was actually a pretty fun day....in this journey it's not very often that you get to spend a lot of time with someone who totally understands what you are going through. My friend Stephanie was also taking her son to have EDTA so we rode together and had fun talking about everything under the sun. 3 hours to Austin, 15 minutes at Thoughtful House, a stop at Chik Fil A and then back to Katy. Yep, you travel 6 hours in a day for a 15 minute treatment. BUT....we got our test results back today and it was TOTALLY worth it!! Here's a little breakdown....

First Test we did without any chelator showed Arsenic, Beryllium, Nickel, and Thallium, all of which were in the "within range" which basically means they aren't high enough to be concerned about. Remember that this doesn't really mean anything, because his body may just be unable to rid itself of these metals.

The second test was when he took the DMSA suppository chelator at home in October. This one showed all of those above and a little bit of aluminum and lead. Again, all of them were "within range". If you remember back from this post you will recall that this pretty much meant that the DMSA didn't "pull" any metals. From that, the next step was EDTA IV Chelation....here are the results....

Elevated (meaning higher than what is acceptable)...Aluminum, Cadmium, Uranium and Thallium. A few that are on the cusp are Lead and Nickel. Now, I haven't actually talked to Lucas about these results, but from what I can tell....the EDTA WORKED!! The even more reassuring thing is that Stephanie said that her son's metals came out more and more with each treatment.

I find it somewhat surreal, that I look at these test results that show my sweet precious baby is full of toxic metals and I am exstatic!! I know why I feel that way, because I have something to grab onto, that we have found something that we can treat and pray it helps. But nonetheless who would think to feel "happy" to see that their child is full of heavy metals that his own sweet little body can't get rid of one it's own??

After a pretty typical Christmas we are finally settling back into a routine. This has been a tough week for Spencer...he took a pretty big turn for the worse behavior wise right around New Years day...lots of tantruming, not following directions, drooling and chewing on his tongue and cheek...made running errands no fun at all. Tuesday and Wednesday when I dropped him off, he cried and screamed and didn't want to get out of the car at school!! It's amazing what routine will do for him...today he was back to his old self!! Still have some residual defiance and tantruming, but 90% better than where we were a week ago. Life is hectic when the kids are back in school, but the routine is so comforting...to ALL of us (not just Spencer).

Until next time....grace, peace, hope, love and prayers!

T

I love the Lord, for he heard my voice; he heard my cry for mercy. Because he turned his ear to me, I will call on him as long as I live. Psalms 116:1-2

A December to Remember and some pocket change

2010-01-08T10:49:00.000-08:00

Ever wonder why December and Remember sort of sound the same? I wonder if someone did that on purpose? You know it's the end of the year and I always find that during this month we generally spend a good deal of effort talking about and remembering all the events of the past year. And funny how this month that rhymes with remember ends with a new year! Okay so that was a pathetic attempt to open this post sort of witty and thought provoking, but maybe not so much?!?!

So for me, as this year is coming to a close I find myself thinking about all the things that have changed over the last year and this has been a pretty eventful 2009 especially where Spencer is concerned. And I'm seriously crossing my fingers (and maybe a toe or two), wishing, hoping and mostly PRAYING that 2010 will bring about more BIG change. That seems a little weird to say out loud, most of the time I really don't like change, I like for things to plug along nice a smoothly no bumps in the road. But oh how change is soo good! I mean really life would be rather boring if we spent a lot of energy and effort getting things set to function a certain way, and then what...you just go along day in and day out with no change. That would seriously be a big ole bore! Maybe that's why so many people are so unhappy?? They just avoid change.

Until next time...grace, peace, hope, love and paryers!

T

Where do people with disabilities fit into God's Kingdom?

2009-12-02T10:39:00.000-08:00

A friend of mine shared this on Facebook. Since some of you don't "Facebook"---MOM---I feel pretty strongly about passinig it on so everyone reads it.

But when you give a banquet, invite the poor, the crippled, the lame, the blind, and you will be blessed. Although they cannot repay you, you will be repaid at the resurrection of the righteous.” — Luke 14:13-14

From what we read and what we know from the Bible, Jesus spent the majority of His ministry, caring for the sick, the hurt, the disabled. If we are to truly be like Him, if we are to truly be His hands and His feet, to put shoe leather on our faith, we need to follow that example. Sitting quietly in our comfortable pews is no longer an option. We must stop focusing on the disability a person has, stop thinking that it’s only that group over there, because we are all disabled in one way or another. We all have something about us that we know doesn’t “measure up”. Who among us would like that part of us to be highlighted, to be emphasized, to be the focus of who we are? Or do we want to be seen for the entirety of who God made us? We all have abilities that we bring to the throne of God, but we all also have brokenness that we bring to the cross. So, why are we only seeing potential in those whose brokenness we can’t see, when what we should be doing is looking at the possibilities every person has, through Jesus’ eyes? We now have a responsibility, to refocus on the part of the word disABILITY that really matters- Ability.

We are all in need of grace-not a single one of us can get there on our own. Some of us have hidden disabilities that we can more easily hide and pretend aren’t there, but they are. So, are we really that different from those of us with more outwardly apparent disabilities, just because we can see theirs, while we quietly hide our own? Do you remember that we are all part of one body-each with a purpose and each with equal meaning? The truth and beauty of God’s mercy, is that He doesn’t disqualify people from the gift of His sacrifice, based on IQ, how someone looks or how they perform in life or in society.

Why do we forget that He doesn’t call the equipped? He equips the called and we are ALL called to His service in one way or another. So, when there are families out there that want to go to church but can’t, because there is no place for them or their children, that is not ok with me. When the divorce rate for these families as hovering at 85%, that is not ok with me. When 1 in 91 children (which is the current statistic for an Autism diagnosis) are forced to watch others do, while they have to sit on the sidelines, that is not ok with me. It shouldn’t be ok with any of us. If we are going to talk about real people, real life…this is it! This is as real as it gets and we can no longer sit here and say that this part of our body is not needed. God makes that very clear….and so should we!

The eye cannot say to the hand, ‘I don’t need you!’ And the head cannot say to the feet, ‘I don’t need you!’ On the contrary, those parts of the body that seem to be weaker are indispensable, and the parts that we think are less honorable we treat with special honor….But God has combined the member of the body and has given greater honor to the parts that lacked it, so that there should be no division in the body, but that its parts should have equal concern for each other . 1 Cor. 12:21-23a, 24b-25

By Christi Armstrong

Thankful for Autism?? YOU BET!!

2009-11-20T17:26:00.000-08:00

If you are a Facebook-er, you have probably seen the viral "what you are thankful for" posts. The jest of it is that everyday until Thanksgiving you post in your status update something for which you are thankful. Well, I thought it would be sort of fun, so I joined the bandwagon and started with the normal list; Jesus, husband, kids, parents, sisters, etc. Today, I am on #9 and my "thankful list" item for today is Autism. Yep, Autism, which may seem a little strange if you haven't been following my blog, but if you have you totally understand why it appears so high up on my list. This made me stop and think about why I am thankful for it and of course it turned into a big discussion with myself (don't worry, I wasn't actually talking to myself out loud, just in my head--admit it, you do it too!) I was having such a wonderful conversation with myself that I feel compelled to let the rest of you in on why I am so thankful for Autism.

At first the conversation was about me and how it has made me grow and become a better person, but it quickly turned into me reflecting on all the people that are a part of my life because of Autism. This is pretty amazing to me because most of them I would have probably never crossed paths with, and each one of them has had an impact on our journey and our lives. Thinking about them I had to put them in little groups that make sense of who they are and what they have done for us. Here are my little groups and a few people that I find to be unique and who have had a big impact on us:

People Who Autism was Thrust Upon
These are the parents and families of children with autism. These are people who imagined life a little different than it turned out for them. Many of them watched their perfectly normal child stop talking and start to withdraw from the world. One day a doctor came in and told them the "A" word, and from that moment on, things were different for them, they live lives very similar to mine, but also very different. You see the thing about Autism is it affects every child so differently. While Spencer is sweet, laid back and easy going, but can't talk and still poops his pants, there are kids who are brilliantly smart, but who scream in fits of anger for hours, bite, hit, and kick themselves and their parents. The amazing thing about this group is that we work together, we MUST. We have learned that you can't rely on one doctor to tell you what to do to fix it, you can't rely on one treatment to fix it, and when you think something is working, it stops working. We have to work together because if we didn't share our ideas and what works for each one of us, then we wouldn't know what to do or where to begin. We fight many of the same fights, insurance companies who don't want to pay, school districts who don't want to accommodate, doctors who don't understand and think we are crazy for not vaccinating our kids or that biomedical interventions are a worthless. I have met quiet a few "Warrior Moms", each with their own story and courage, many have given me strength in this journey, but there is one mom in particular that changed our life this past year, Stephanie Sanford. I crossed paths with Stephanie on the Katy Autism Support Yahoo Group, but had never met her face to face. Her son was only 3 at the time and what I found was a mom who had a relentless pursuit to heal her son. Following her story made me stop dead in my tracks and question if I was doing everything I could do to heal Spencer. We had been on the typical treatment path, which is do nothing, stick him in a special ed. class in the public school and hope for the best. But reading her story, I knew there was more, I knew there was hope, so earlier this year we changed directions and started our journey with Thoughtful House and Spectrum of Hope. (Yep, Steph I'm a stalker, but seriously your posts on KASG sparked that little flame that now burns like wild fire to heal my son). I'm so thankful for Stephanie and that I can call her my friend.

People who Know Autism Because they Know Us
I have found the most comfort with this group of people. They know "Mike and Tami" before Autism, they know us as individuals, not as the parents of a child with autism. They are our friends and family who have been on this journey with us every step of the way. In the early days, they "gently" let us know something wasn't right, they listened to us lament over Spencer when he didn't reach milestones, they are the people that completely understand the excitement you get when your 7 year old says "mommy" for the first time or that your 8 year old went an entire day without a pee accident. They find our stories funny and heartbreaking. They laugh with us when a Spencer "quirk" may seem weird and odd to and outsider, but we find totally hilarious!! They cry with us when it gets to be just too much to bear. They help me to feel normal when being a "Special Needs" parent feels so isolating. I could make a huge list of these people there are so many of them, but to name a few.....our Cinco neighbors (the Wosel's, the Barron's and the Matus'), my parents, my sisters, Honey and Pops, my friends at work, my BFF Susan. Every one of you is a part of this journey and we wouldn't be where we are today without you!!

People Who Chose Autism
These are the people that find passion in helping children with Autism and their families. Among them you will find many who wound up doing what they do, because they themselves were in group #1. Lucas at Thoughtful House has been a God send, you can go back and read the old posts about our experiences there, but to sum it up Spencer is getting better because of what they have taught us, shown us and encouraged us to do. They never stop; they have a drive and a passion to heal our children. When many people have said there is no "cure" they say maybe not, but there is hope and there is healing, these kids can live better lives. Another are the therapists and staff at Spectrum of Hope, some have children with Autism, some have relatives with Autism and some just have a passion to make life better for kids with Autism. What you find a Spectrum of Hope is a community of people who are bent to healing our kids. Like Thoughtful House, they know there is hope and healing. But by far one of the most incredible people I have ever met is Suzette Coates. This girl (and I say girl because she's probably only 25) has devoted 100% of her energy and efforts to our kids. She not only is a YCAP teacher in KISD during the school year, she spends her summer teaching ESY (summer school for special needs) and RUNNING a camp for children with disabilities!! She single handedly is able to wrangle up a whole bunch of young energetic teenagers to take a group of 12-15 children with disabilities all over Houston/Galveston for day trips in the summer. She also has the courage and energy to take the kids on OVERNIGHT camp outs during the summer--real campouts with tents, cooking over a fire and all!! She also, after spending all day with the kids in ESY, takes them to the pool swimming, she just doesn't stop!! To top it off, she has big dreams for the autism programs in Katy, I really pray that someday a sensible administrator will hear her ideas and impalement them. She dreams of a public school just for children with Autism (hmmm...much like Spectrum of Hope??). I would venture to say that it would be the best way to service and get our kids the help they need, and guess what....it would probably be a heck of a lot cheaper for the school district and save you and me loads in tax dollars!! I'm just sayin', someone needs to fix our education system!! Suzette, we can't wait to come back to Journey for a few weeks this summer! Girl, you are AMAZING!!

God's People
This final group I like to call God's people, these are the one's he put there. These are people that autism entered their life in a really unique way. It was not thrust upon them by having a child with Autism, they didn't come to know autism because they were friends of ours, and they didn't make a conscious choice to work with children/families of autism. They became a part of our family just by sheer coincidence and timing. I know these people were specifically chosen to be a part of this journey with us because they have all openly welcomed and loved Spencer despite his Autism. Gina Ravey-I met Gina when we were at our lowest point. We had just been handed the "A" diagnosis and within a few weeks Spencer was kicked out of preschool. (I could probably sue their tails off for it, they kicked him out when they found out he was dx with Autism....discrimination...YOU BET!! ) I was heartbroken and stressed. At the time I was traveling a lot for work and Mike was working long hours. We had nowhere to take our son. Our Occupational Therapist had been working with a child in an "at home" daycare and suggested I give her a call. At the time, I was pretty much against in home daycare; my view was only what I had seen on news, crazy people who abuse the kids in their care. But, God forever changed my view after meeting Gina. She is the most loving, giving, genuine, Christian woman I know. Through the time Spencer was with her we became good friends. I looked forward to every afternoon when I picked Spencer up because it meant a good conversation with a great friend. It wasn't always about Spencer and Autism either; we shared all that was going on in our lives (sick parents, dysfunctional families and little bit of gossip). She was special in that she took the time to understand Autism, to get to know how it affected Spencer, she had the courage to take on an Autistic child, but mostly, she loved Spencer just as much as we do, and still does. There was no better place for Spencer to be and I am so thankful to God for putting her in my life. Spencer stopped going to Gina's 3 years ago and she is still one of my good friends. I am so thankful Autism brought us together and that I can call her my friend!!

There are so many other people that come to mind that have helped and encouraged us along the way and each one of them is special to us. Madalyn Lee, Ms. Becky, Ms. Lakeisha and Ms. Dakeish at WCE YCAP--I miss you girls so much!! Audrey Bivens for being an administrator that puts the kids first and doesn't get jaded or swayed by the "process". Our friends at SBC OnDemand--for being great friends and wonderful examples of Christ. Ms. Brittney in Promise Land--she let's us have a few hours to worship God without the worry of Spencer. Dwayne and Cheryl Clark, Linda Thompson and all the Challenger Baseball folks and fellow Orioles--love you all for giving us a place where Spencer can be a normal kid for an hour!!
The KASG folks who I learn so much from every day! Camp Barnabas folks--what a wonderful place and nice few nights of respite for Mike and I. Our friend from Barnabas, Mike Skinner--an amazing guy with such a mature relationship with Christ. He has a genuine love for Spencer and our family.

Wow, I could go on forever!! This was by far one of the hardest posts ever! I sat down yesterday and thought I could just whip it out, but the more I typed the more my heart felt filled with love for so many people, but yet burdensome that I would leave someone out!!

I mean just as I typed that I thought of all our bus drivers, they were all so awesome, the ladies last year thought Mike and I were FBI agents!! How freakin funny is that, we for sure had many laughs last year with them (the jokes about us being special agents and undercover operatives were hilarious!!) Man and how could I forget our friends at Creech Elementary, Mrs. Iovine, Mrs. DeCaire and Mrs. Chaka our first special ed teachers and our Life Skills teacher Mrs. Clanton and Ms. Ruth!

And then there were all the therapists from the early years, when he was 2 and we really had no idea what was wrong with him. They were there to hold our hand and guide us through the difficult process at Texas Children's and the slew of specialists we saw there. Man that seems like ages ago and doesn't even feel like it was my life!!

Oh, and then there was Elwin Sims, our speech therapist, who pushed me (sometimes not so gently) to FIGHT for Spencer to get the diagnosis we needed to get him in the autism program in KISD!! Spencer had a formal autism diagnosis from Texas Children’s and KISD chose to ignore (um, the best specialists in the state??) and gave him a diagnosis of speech delay and mental retardation. That was a very difficult and LONG year, but Elwin was so helpful and full of information. He "chewed me out" a few times, telling me NOT to let them get away with that!! I miss Elwin!! :(

Seriously I could go on FOREVER, but I really need to wrap this up! If I didn't mention you, please know that EVERY person has at one time or another touched me in a way that has shaped me into the parent I am today, I love you all and am so THANKFUL for you! Have a very blessed Thanksgiving; I pray that you take the time to reflect on all the goodness that God has given you and me; and to thank Him for the ultimate sacrifice He gave us in His son, Jesus Christ!!

Until next time....grace, peace, hope, love and prayers!!
T

"Praise the LORD! Oh, give thanks to the LORD, for He is good! For His mercy endures forever. Who can utter the mighty acts of the LORD? Who can declare all His praise?" Psalm 106:1-2

You only think you need what you need

2009-11-13T16:09:00.000-08:00

A friend of mine posted a link to an article on Facebook about Families of Chidren with Special Needs, here it is....

A Different Beat

Written By Cammie McGovern

No one thinks they'd be good at raising a child with special needs. Until a child becomes your child.

A dear friend, in her first trimester of pregnancy, called in a panic when some early screening tests came back with questionable results. "I know I'd be a terrible special needs mother," she wailed. Strange that she was having this particular panic attack with me, when my oldest son Ethan is an 11-year-old with autism, and her worst-case scenario is basically the story of my life.

I tried to bring the voice of reason: Those tests are always dicey, this baby will probably be fine. I also told her something my prescient mother said when I was having a similar flight of fear during my first pregnancy. "If your baby has problems, you'll deal with it. You'll do what you have to."

What I wanted to tell her is that no one believes they'd be good with a child who has special needs. Presumably one decides to have a baby to put a certain limit on the navel-gazing and solipsism of life before children, but for most people there's a ceiling to their desire for martyrdom. "I'm too selﬁsh," my friend wailed, exactly the sort of thing I once said myself. If I remember correctly, I think I even added, as a stab at sounding open-minded: "I guess I could deal with anything except cognitive issues."

Now that I have a child with special needs — with cognitive issues and more — I've learned that it means years of walking through a world filled with doctors and therapists and what feels for a long time like many closed doors. Everything that other mothers and babies were doing seemed like a trial: Mommy and Me groups, toddler swim lessons, baby gym classes were all an exercise in watching my son withdraw and retreat. It was a long, slow realization that brought with it a surprising measure of relief: He'll never look fine, so why bother trying. With that understanding I began to see what it took me far too long to grasp: This wasn't about what other people thought, or how we looked, or how well he managed to blend into a group of other children his age. This was about him, enriching his world, widening it as far as possible for him.

In the weeks after Ethan was diagnosed, just after his third birthday, I felt as if I'd walked through the only door that felt open at the time — into the world of other parents with special needs kids. And there I found, to my surprise, a group of parents who dwelled not on their misfortune but on the details of their children, a thousand specifics that, once you looked at them, were oddly fascinating. "My son loves drumming," one mother told me. I didn't know her son well; I only knew that he was 18 years old with "multiple issues." He was blind, deaf, and used a wheelchair, certainly a worst-case scenario for many people, but there was also this: With a drum in his lap, he could keep a steady beat, feel music through his feet, and play along accurately. Imagine the feeling his mother had discovering this. For everything he couldn't do, look at what he could.

As it turns out, music is a godsend for many of these kids, an avenue into an otherwise tangled brain. A while back, my own son, who struggles mightily with writing, was trying to spell the word face and did it first by singing, in perfect pitch, the piano notes F-A-C-E. How inefficient, of course. How convoluted. But it also has to be said: How interesting. Since then, he has discovered his own love of drumming and has joined his public elementary school's beginner band, forging a path not only to learning, but, at last, to other kids.

When I made the passing remark years ago suggesting that I could deal with anything but cognitive impairment, I suppose I thought having a child who saw the world in simple terms would quickly grow old. The reality has been the exact opposite: A child with special needs is endlessly interesting. No matter what a doctor tells you to expect, these children follow no prescribed pattern of development, making them in many ways less predictable and more compelling than their typically developing peers. If I'd had a glimpse when I was pregnant of what Ethan's life would be like — how hard it would be sometimes to be his mom, how lonely and frightening — I know I would have wept and said I could never do it, not in a million years. But then the actual child comes, with big green eyes and doughy cheeks and, even as a 3-month-old, a sensitivity to music that makes him stop wailing instantly if he hears a thread of opera. You watch his little face furrow to the music, taking it in like an adult, and you think: This child seems so different, in ways that are both hard and good. And then the face and the particulars simply take over. You couldn't do it in general, but for this child, this one, you can. And you do.

About the Author: Cammie McGovern is the mother of three sons and the author of Eye Contact, a mystery about an autistic boy who witnesses a murder. Ethan, a Bruce Springsteen fan, is planning to invite The Boss to his next birthday.

I agree with the author of this article on so many levels. From feeling like an outsider at typical mommy and me classes or birthday parties, meeting remarkable parents, dwelling on the details of my child, but what hit me the most was the admission that at one time we have all openly admitted that there is NO WAY we could be a good parent to a child with special needs. Well, I will confess I was that person. But MAN has this journey changed me!! I sit here today and can say that I NEED Spencer, so much more than he needs me. I need him to show me the joy in life, to teach me to be strong, to fight for what I believe in, to work hard, take in the "details" of every part of creation, to listen through music not just to music, to show/teach me grace and mercy. This journey has brought me to my knees weeping and asking why me, why Spencer, I can't do this any more! But more often than that, it has brought me to the highest mountain, feeling full of life and close to Christ!

Sometimes there are things we need and we just don't know we need them. I have learned to value and seek out those little things in life that have been put there (because we need them) to show us who our creator really is and that HE is in control.

Have there been or are there things that you have experienced in your life that weren't a lot of fun (or maybe just plain dreadful), but you realized in the end it was something you needed?

Update on Spencer's Treatment
Spoke to Lucas at Thoughtful House last week about our Challenge Test results. I was correct the DMSA didn't do squat. He told us there are a few reasons it didn't pull any metals....1.) he doesn't have any metals to pull, 2.) the DMSA med doesn't work for him, 3.) his body didn't absorb the DMSA suppository correctly.

We can't go with reason #1 because what if it were #2 wrong med or #3 poor absorbtion of suppository. So, we really have 2 options if we want to keep trying Chelation.

Option 1:
We can tray another medication that is also a suppository, which would take care of ruling out the possiblity that (#2) it was the wrong med. However, if we still don't pull metals then we still question whether #1 does he have metals to pull or (#3) is he just not absorbing a suppository.

Option 2:
We can do an IV challenge test using a different med, EDTA. This requires a trip to Austin and is considerably more expensive and invasive for Spencer. But, this is a good option, because we change the medication (#2) and the vehicle in which it is adminstered (#3). Also, If we go this route and there still aren't any metals pulled then we know for sure that there aren't any metals to pull (#1) and chelation isn't a good treatment for Spencer.

Option 1 is a lot easier and cheaper, but I feel like it could be a total waste of money, because if it doesn't work then we go to Option 2 anyway. So, we are going to skip that test and move right to Option 2. We should be making the trip soon. I'm waiting on the appointment and test kits to come and I'm anticipating it will be sometime after Thanksgiving. One of our friends a Spectrum of Hope started IV chelation at Thoughtful House a month ago. They also live in Katy and we have been talking about coordinating our appointments so we can travel together. Should make the trip easier and more enjoyable.

Spencer has been showing signs of yeast again, so we are going to do another round of Diflucan. I'm just praying we don't have the troubling behaviors we had last time. I take peace in knowing they are temporary and that he will feel better when we are all done.

Have to share this....
As you recall from the last entry, Spencer loves to play the drums. His new "thing" is he puts Animusic on the DVD player and gets out his drum and "plays along" with the movie. HILARIOUS!!

Until next time, grace, peace, hope, love and prayers...

T

The King will reply, "I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me."
Matthew 25:40

The Spartan and The Drummer

2009-10-25T19:46:00.000-07:00

WOW am I a total slacker or what?? I just noticed my last entry was Sept 4, and here it is Oct 25! Yipes!! So, you might conclude that we have had A LOT going on and you would be correct!! I will try to be brief and give a little update....

Parker
I can't believe I have a 5th grader...how did this happen??? As you know Parker is playing football this year and finally made the weight limit to be able to handle the ball. This is super cool for him and for us. The Spartans had a really rough start to the season, losing the first two games. But WOW have they kicked it up a notch!! Game 3 & 4 were both wins and both against fairly decent teams. Game 5 was yesterday against a tough opponent and Parker was sick!! He was so bummed about missing the game, as soon as it was over, he pestered me about emailing his coach to get the results. If you know Jeff, if they boys had lost he would NOT want to hear from one of his best players who was out sick wanting to know the score. I played it cool and posted a status comment on Facebook asking the score. Instant reply....they won!! On the second play of the game, the Spartans scored a TD and went on to hold the score 6-0!! Just a few more games and we head into the playoffs!! Some season highlights for #18....Game 2 Parker had a fumble recovery, which he was very excited about...see below holding up the prized ball....

Game 4....Parker scored his first "points", not a touchdown but a two point conversion. Here's a picture of the catch...

But this has got to be my all time favorite football picture of Parker. Didn't quiet catch it, but a cool picture....

Other than football, he's really just got a lot of school commitments....he is in 5th grade choir, which is fun. He will have a concert during the holidays and then another in the spring as the kids travel to Sea World in San Antonio. In addition to choir, he was elected for Student Council, Safety Patrol and RISE. RISE is a really cool science program where the kids create a "base" to be used on another planet and then will have an overnight stay at school in their "base" on a pretend planet. Pretty fun right??? It did sound really cool until we went to the parent meeting and were informed WE would have to volunteer to help overnight....drats, I thought it was going to be a kid free night?? It should be fun anyway! :)

Had our first teacher conference and he is doing so great, I'm pretty sure you would all suspect!! He is a talker in class (shocking), but his teacher told us that any kid that she has had in her 32 years of teaching that was a straight A student who was a talker, went on to be really successful! Well, of course!! She also said he is by far the leader of the class and all the other kids really follow what he does. We are trying to instill in him that being the leader requires a great amount of responsibility and self discipline to lead others to do the right thing. But by far the best thing to hear out of the conference was his teacher tell about how he talks about his little brother in class and to his peers. This isn't something that we see, because when we are all together Spencer is usually just irritating Parker. It makes me so proud to hear how well he is accepting of having a brother with special needs. (Althought never let him fool you, he doesn't want for anything!!)

Spencer
Last post talked about the Challenge Tests and Chelation.  We did it a few weeks ago and the test results came in, we are now just waiting on feedback from Lucas on what they mean.   I am no expert in reading tests, but based on what I can tell, the Chelation didn't do squat!!  So, I'm suspecting we will be making another trip to Austin to try the IV chelation which is stronger and will hopefully pull more metals.

We started two new supplements, so we are on a grand total of 14!! The hardest part about being on so many is not running out!! I am having to order something every week. Somehow we manage to run out of a supplement and then he goes without for a few days.  This alwasy jacks his system up a little bit....so very frustrating. I sent another order to Thoughtful House last week and ordered probably 4 bottles of all of them!! Hopefully that will tide us over for a month...my goal is to only order once a month....do I need to create some sort of spreadsheet? It would be so much easier if they were all packaged the same...some have 30 pills, some have 90, some even crazier have a random odd number like 43. Come on, can't they all just have 30??

The 2 new suppplements have done a lot of good....they are GABA and Glyconic DMG. Both of which are supposed to increase cellular activity (hoping for more energy and more brain activity). Lucas told us to watch out for decreased sleep and increased stimming. Stimming, hmm....I don't think I have talked about this before....here's a little lesson.....

Stimming is an easy way to say stimulatory behavior, things he does repetively that "feel good"...his stims come and go, and sometimes reappear. He has a few physical stims, like hand flapping, jumping and squeeling, folding his ears, and one of my favorites, "crazy eyes". He also has some that aren't physical, things like closing doors, flushing toilets, playing with light switches. If you stop and think about it, we all have "stims". Some of mine are chewing ice, picking my nails, messin with my hair, bouncing my legs. Think about it....what are yours? Stims are only bad when they are socially unaccpetable or get in the way of him learning. Well that and of course the ones that really irritate me! The toilet and light switch thing drive me crazy!! We work really hard to try and eliminate most of them, we have some success, but they often come back if we don't stay focused on them.

Okay, where were we...oh yeah, the new sups could cause a lack of sleep and increased stimming. The dosing is 4 pills of each twice a day. We have worked up to 2 pills of each twice a day, and he started sleeping less and seemed to move a little faster. Moving faster..GOOD, sleeping less....not good!! These are both great signs that they are working!!  BUT, I'm a little concerned if we move up dosing too fast, we will end up with a crazy kid who doesn't sleep! I'm thinking......we are just going to keep it as is, until he regulates.

Second cool thing....he got his communication device (ACD) and it is SOO COOL!! You may have seen them before, they are generally used for parapalegics or anyone who can't speak. They are working with him at Spectrum on how to use it and have even added his programming to it.  He seems to be doing pretty good learning how to use it at school. At home is another story, he tends to just "play" with it rather than actually use it to communicate. Maybe the problem is me....yep, that's usually the case!! :)

He's doing great at Spectrum!! Of course, everyone loves him to pieces! To me, the best part about being in private school, you get to actually celebrate HOLIDAYS!!! YAY, we had a Halloween party on Friday...lots of fun...he was a rocker...or better yet, a Drummer!! Some say he's going to be a famous drummer some day....maybe so, but he needs a drum set, and that just isn't going to happen in this house!! That is unless we convert the garage or put some soundproofing up. He did look totally cool....

This was a super busy day for us, we went straight from the party home to get ready for the Third Day concert. Parker was sick so he didn't get to go, so it was just me and little man. He was already dressed for the occasion, so he just kept sporting the hawk and wearing his black t-shirt and skinny jeans!! He LOVED LOVED LOVED the concert!! He was in awe of all the lights, sounds and of course the rockin' out! He played air guitar and air drums all night long. Very cute!! This was his first concert other than rodeo concerts, which don't really count because that little rotating stage in the center just doesn't qualify as concert-worthy! It was a good night, I love spending time with little dude!

A really cool thing happened at church today, a friend of mine who helps in Promise Land (that's his Sunday school class for special needs kids) said to me...."Wow, I can really see a change in Spencer, what have you been doing with him? He was giving great eye contact and was really engaged in class today." I just love hearing people spontaneously say they have noticed a difference, we easily get into the rut of taking all his progress for granted and start thinking that it's not working, too difficult and start getting lazy. But when you hear that....WHAM, it's like "ahh yeah, it's working!!"

Okay, I'm beat, I'm not even going to proof or spell check....so, sorry if there are mistakes. There are so many more great stories from the past 6 weeks, but I have got to wrap this thing up....another crazy week awaits!!

Until next time....grace, peace, hope, love and prayers!

T

Yet, I am always with you; you hold me by my right hand.
You guide me with your counsel, and afterward you will take me into glory.
Whom have I in heaven but you? And earth has nothing I desire besides you.
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Those who are far from you will perish; you destroy all who are unfaithful to you.
But as for me, it is good to be near God. I have made the Sovereign Lord my refuge; I will tell of all your deeds.

Psalms 73:23-28

Hubba Hubba Ding Dong--Spartans on Three!!

2009-09-04T18:45:00.000-07:00

As promised, here begins the story of our week long festivus in Ft. Worth....(things have been moving so fast around our house, that I am finally getting this wrapped up)

Saturday, August 15

Today started out like any typical Saturday morning, except for me KNOWING that I have a VERY long day ahead of me. Spencer and I headed to the YMCA at 7:00 for my 7:30 Step class followed by a little spin at RPM. (He of course was fantastic!! I think we have finally gotten over all that bad behavior at the Y--can I get a yea, yea?). Mike and Parker were able to sleep in a little and then after a big breakfast at Denny's headed to his first football scrimmage of the season. Spencer and I made it to the game about 30 minutes late, but can I say this is looking like an awesome year for the Spartans!!

Parker is very excited this year, because he has finally made the weight limit to be able to carry the ball!! I guess to keep all those "small" kids from being trampled by bigger kids; they have to put rules in place. (Whatever! It's football for Pete's sake they're going to get hit, hurt and trampled on!!) So, if you don't know Parker, coming from a taller than average family, he's (barely) 11 and is 5'2", 120lbs and TOWERS over most of his peers. Oh yeah and my favorite fact about Peej and the one that generally gets a jaw drop, he wears a size 10 1/2 men’s shoe! Can anyone feel my impending doom of having to special order very expensive shoes for him in the not too distant future (should I start the paperwork for the second mortgage now)?? Parker is known on the team as "Manimal" and sometimes "Sasquatch". I digress.... Because of his size his coach has always had to play him at guard or tackle on offense and defensive end on defense with his strength being on defense. But this year, Coach Conley is giving him a shot at tight end and he will continue to hold defensive end on D. I tell you all this to get the picture and know how very excited we are this season and mostly at this first "game"!! I couldn’t wait to see my Peej put to work some of his mad skills!!

About half way through the scrimmage they decided to give him a shot. I generally am at the games "in spirit" as there isn't much watching going on with Spencer around. But this mamma sitting on the sidelines trying to entertain her very hot, cranky, over stimulated and over tired autistic son was not gonna let this play go by with out watching!! (Entertaining Spence at these games is not for the faint of heart and takes every ounce of energy out of me, especially after 2 hours at the gym!) So, the ball is snapped, I see Parker is wide open with arms waving in the air "I'm open" (geez Parker, keep that to yourself don't let the D notice you and block your chance!!) I see the ball go sailing through the air toward him, I cringe, saying to myself "please catch it, please catch it". I almost can't look and like manna from heaven it falls perfectly into his arms and he starts runnin!! And running, and running and running! Now I don't know for sure, since this was a scrimmage and there was no "official" score, but I think it was a TD!! Parker has his first touchdown! What a way to start out this fun filled week, he is on cloud nine!! He also wants me to mention that he also had 4 tackles--he's a defensive guy at heart and I think he was more proud of his tackles (as he should be--you can't win games without a strong D-line)! Hubba Hubba Ding Dong--Go Spartans!!

The game was over about 11, now the smart thing to do here, is load up the car and head out of town. We have a 4 hour drive ahead of us to get to my dad's in Ft. Worth. But noooooooo, Parker's buddy on his football team was having a birthday party at Laser Quest and they had rented a Hummer limo to take the boys. After some begging and pleading, I agreed and off he and Mike went to the birthday party. Gotta stop here, you are probably wondering why me sweet husband is tagging along to a kids birthday party....maybe I don't need to answer that....Hummer limo and Laser tag??? Of course he's going. (He's pretty tight with the birthday boy's Dad and I think there may have been some sort of dad smack talk goin on during the scrimmage--probably, no DEFINATELY!!)

Spence and I head home with lots to do to get ready for the trip. First off, remember Mike and I am Bible Study Directors?? Well, at the last Director's meeting (which Mike goes to solo), Brad gave an "assignment" that each Director had to set "Goals" for each area of leadership. What do I hear from my sweet husband when he came home from this meeting..."Sweetheart, WE need to come up with goals for the class." Brad had given the group some "examples" (some of which were 17 pages long) and I think when Mike first saw them was a little overwhelmed (wouldn't you be??) But me being the over committer said, "Don't worry honey, I'm all over it!", besides I do leadership training and writing for a living, so this is right up my alley. Now, little did I know that they had to be sent to Brad by THAT day, but no worries I would get it done. I was actually VERY blessed that they went to the party, because in the peace and quiet of my home office I sat for 3 hours and devised a grand plan for our class....let me tell you I was very proud of my handy work and couldn't wait to show it to my beloved!! Once done, I got to packin'. I'm a little weird, because I love to pack...I mean I even loved packing the house when we moved a few years ago---I know crazy, but that's me! =) However, packing for this trip was a feat!! This was the first time we have traveled since on the diet, smoothies, supplements and B12 shots. So this involved not only clothes, pillows, video games and an array of other road trip paraphernalia, but also a couple of coolers, bags of groceries, the Magic Bullet, a stash of supplements, and VERY carefully packaged 3 needles full of precious B12. But we got it done!

With the OnDemand Goals done, bags packed and everything loaded in the car, we wait.....about 5:00 the bigs return from the party. I very proudly show my honey the goals and he is blown away!! (At least that's what I tell myself..tee hee!!). The kids and I jump in the car, kiss daddy goodbye and are on our way....anticipated arrival time in Ft. Worth 9:00ish.

Stay tuned for the actual drive...Peej and I had some interesting conversations!!

Until next time....grace, peace, hope, love and prayers!

T

Everything we have--right thinking and right living, a clean slate and a fresh start--comes from God by way of Jesus Christ.
The Message--1 Corinthians 1:30

Thoughtful House Part 3

2009-09-03T20:06:00.000-07:00

Tuesday we had another follow up with Lucas at Thoughtful House. Let me just say, I love him so much, he is so very awesome, not only in all his knowledge about Autism, but he is loads of fun to talk to! Well of course he is at $300 an hour. Anyway, because of my very busy schedule right now, we decided to do the appointment via phone rather than drive all the way to Austin. It proved to work out just fine, but the enormous amount of information he gave me is mind boggling!! It's a big task, but I’m gonna TRY and give you all the jist of what's going on and where we are going after today's appointment....

Great Things
First we started out talking about the "Great" things that are going on. This was pretty funny because when I sent over my pre-appointment questionnaire, I left that part blank. So of course Lucas was like, "okay what's up, you filled everything out but that part." I think he was a little more than concerned. But of course it wasn't that we aren't seeing any "great" things, it's just we are seeing a lot of little things that are all pretty hard to describe. I told him to sum it up, the most noticeable thing is, he seems to be feeling better. I would have never in the past said he was in "pain", but now looking back I sort of think he was. He had a big bloated belly all the time and would lean over the arm of the couch (which duh, now I know he was trying to relieve the pressure on his tummy). I think this contributed some to his aggressive behavior, (okay, if you know little man, he doesn't have extreme aggression but comparing pre-treatment to now, he for sure had some). Of course I never thought all this "posturing" and aggressiveness was because he hurt, but looking at him now, I really think he was. The "Great" news is now both of those things are gone!

Let's Talk Poo
So on to talk about poo and boy did we talk about poo!! How often, how much, what shape, sticky or smooth, wet or dry, was there undigested food, what color, what did it smell like. You know you can sure have a lot of fun talking about poo...I should have had my 11 year old do it, as we all know boys at that age like to talk about bodily functions that involve the back side!! :)

Diet, Meds and Supplements
Next we talked about the diet and supplements and what we are seeing there. Really nothing to report, his biggest concern was with the B12 shots, I guess they can have a tendency to cause sleep issues (which he did NOT warn me of before...hmmmm, maybe he did that on purpose?!). But no sleep problems, he's always been a great sleeper (knock on wood). So good news there, we don't have to change anything just keep doing what we are doing.

We then talked about the rounds of antibiotics and diflucan and if you remember the Great Escape from the YMCA, they caused a little disruption (okay a lot of big bad aggressiveness), but all of that is gone. Lucas said that all this was evidence that the meds did their job and the issues were due to "die off" of the bugs and yeast. Yippee!! This means we are done (for now) with those things. He only suggested that if we want he can start taking a digestive enzyme to help his body further breakdown his food and aide in better digestion. But he said he really didn't think it was essential and we could skip it for now. (So we are...just so we can use the $$ on things that are more effective.)

Next Steps--Big Boy Meds
Lucas said based on everything we are doing, his "gut" is stable enough to get on with some serious "big boy" meds (his words, not mine--a little scary??) So we are moving on to the next big step and will do some "challenge tests" to determine what type of chelation will work best.

Chelation
Okay, quick lesson on chelation (feel free to Google, if you want to see all the good, bad and ugly of it). It is somewhat controversial, because of what it does. Think of it as a magnet, you take the "chelator" (magnet) and it attracts any and all heavy metals to it as it travels through and out your body. The concern is that there are some "metals" that we need (zinc, iron, magnesium etc) and the chelator can't tell which is which so it takes all of them with it; leaving a risk of mineral deficiency. To offset this you increase intake of those metals, and take them far enough outside of "chelating" so that they don't get "pulled" from his body. Spencer is currently on all three as a smoothie supplement. Why do they treat Autism this way? Well, most ASD kids have trouble ridding their bodies of heavy metals; therefore, heavy metal burden is one of the prevailing theories behind Autism. Just do some research on vaccines and Autism...theory there is the "metals" that are used (thimerisol being the biggest culprit) become too big of a burden for some kids bodies to handle and thus cause brain dysfunction. Heavy metal toxicity has been proven to cause brain disorders. Enough of all that mumbo jumbo.

Challenge Tests
Basically a challenge test is done to see if and how much "heavy metal" is being dumped from his system. To get a true read on this we have to collect every bit of urine for 6 hours. (Mind you Lucas said if he happens to have an "accident" or we "miss" any, we have to start all over again.) From there we shake it all up and take a little bit and send it in to be tested. So that's a challenge test, we get to do this several times throughout this process, so keep that in mind! :) YAY!

Testing and Treatment Plan
The testing phase goes something like this....

Step 1: First challenge test--we need 6 hours worth of urine, so Lucas suggested we do it on the weekend, yeah right! We are so busy I can't imagine having to try and do this "on the run" so needless to say, Louie and I will be holed up at home for a day. No biggie, we can do it.

From this test, they will check his metals to see if his body is riding itself of them and how much. Now, if the test comes back with zero metals, that doesn't mean he doesn't have metals, it really means his body ISN'T getting rid of them. So no metals is actually bad.

Step 2: Suppository Chelator--we will then do 3 rounds of suppository chelator. I will seriously spare you the conversation Lucas and I had about this! It was funny, embarrassing and not something I care to bring back to life here! I will say that each suppository has to "stay in" for an hour. If you know Spencer any thing that goes anywhere around "that area" and it's all over--poo city!!! So to make sure they "stay in", we have to do a "pre-suppository" suppository to clean him out. UGH!! If per chance it doesn't stay in, we have to start all over again, but have to wait a few days before we do so, because he needs to be empty of chelator before you start. This goes on for 3 days in a row.

Step 3: Challenge test post chelator--this is the same test, but this time we will hopefully be able to get a read on what metals and how much the chelator can "pull".

Step 4: We will next travel to Austin for a blood draw to test liver, kidney and blood "health" (counts & levels) to see if he can handle Chelation treatment. They will keep an eye on these throughout treatment.

Step 5: While in Austin, we will do one round of IV Chelation, followed by 2 rounds of suppository chelation and then another challenge test.

So after all that, we look at if and which treatment is most effective and will then decide how we want to move forward.

Goods and Bads
Suppository chelation is pretty inexpensive and can be done at home.
IV Chelation CAN be more effective (not always) and requires a trip to Austin twice and month and costs a little more.

Long Term Outlook for Chelation
Chelation is one of the most aggressive and effective treatments for Autism.....IF (big if) the child's symptoms stem from heavy metal toxicity. Of course we won't know about that for Spencer until we get this treatment underway. There are kids Lucas sees that chelated for 3 months and now have stopped because the child was able to start moving metals on his own and had made great progress very quickly. He also has some kids that are going on 2 years of chelation and have seen very slow but steady improvement. Lucas has seen all sorts of improvement with chelation anything from talking to improved attention and behavior.

My Expectations
What are my expectations for Spencer? I pray for the best and expect very little. I know that sounds a little less than optimistic (from someone who is an incurable optimist!), but in the world of Autism, there isn't a magic bullet, there isn't anything you can take or do that will cure it. On top of that, there are TONS of treatments that claim big things and yet just a handful of people see any change. But, I trust Thoughtful House and know they are the best and most knowledge. I'm also confident that they will lead us down the right path, are very thorough and will not keep us on a treatment that's only moderately effective. That's why we finally decided to bite the bullet and go to them for help. I figure we will give all this a shot for a year and then decide if it's worth it. It's a lot of work and isn't cheap. But for now, we are seeing good things so I am feeling pretty hopeful about it.

Please keep us in your prayers as we journey down this next road, it is going to test my patience and my will!

Until next time....grace, peace, hope, love and prayers!

T

Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight.
Proverbs 3:5-6

To Vaccinate or Not Vaccinate....that's NOT the question!

2009-08-31T14:19:00.000-07:00

Last night Matt Lauer and NBC aired an episode on Dateline titled "A Dose of Controversy". Here's the show in a nut shell....

NBC News' Matt Lauer will take an unprecedented look at the emotional debate surrounding vaccines and the suggested link to autism on Sunday, August 30 at 7 p.m. ET with "Dose of Controversy." In the one-hour Dateline, Lauer speaks exclusively with Dr. Andrew Wakefield, whose 1998 medical study was the first in the world to suggest a possible link between the MMR vaccine and autism. The British doctor has since influenced the lives and stirred the passions of millions of parents worldwide looking to solve the mystery of what causes the complex developmental disorder.

But Dr. Wakefield's theories have also raised serious questions from the media and the medical community. Lauer interviews investigative journalist Brian Deer who wrote a critical report for London's Sunday Times in 2004 detailing what he said were potential conflicts of interest that Dr. Wakefield had never revealed. Lauer also talks with Dr. Paul Offit, a pediatrician at Children's Hospital of Philadelphia and expert on vaccines who has spoken out on behalf of vaccine safety in the United States.

Now, Dr. Wakefield reacts to his harshest critics on the controversy that began over a decade ago.

Lauer also reports on Dr. Wakefield's most recent work in the United States and the medical community's continuing search for the cause of autism, including new studies from researchers working to understand the disorder that affects 1 in 150 American children.

Friends, I am not a Doctor (duh, you knew that) and I don't claim to know everything there is to know about this topic. I am a parent of a child with Autism and here are my reactions from the show....

First off, why is Mr. Deer SOOO intent on discrediting Dr. Wakefield? It just smells really fishy to me!! For pete's sake, he's a reporter, not a doctor and all Dr. Wakefield is suggesting is an alternate vaccine schedule. He's not saying "Don't Vaccinate"!! My question, who is Mr. Deer working for? And why is he so caught up in this?

Dr. Wakefield's "alleged" conflict of interest
Mr Deer claims there is a conflict of interest because Dr. W was paid $750K to be a medical witness in a class action lawsuit surrounding the vaccine controversy. Is Mr. Deer suggesting that he is being bribed and paid off to make these claims? I ask you....if you were a highly regarded physician (and I'm sure very highly compensated) would you take a bribe of $750K to falsify claims only to put your reputation on the line? I would guess not, that really isn't a large enough sum of money to "lie" about something and potentially ruin your career.

Mr Deer also claimed that Dr. W was working on an alternate "vaccine" to the MMR. Alleging that Dr. W was trying to discredit the MMR so that his "new" vaccine would take it's place. Thank you Dateline for allowing Dr. W to squash this claim. Dr. W in fact was obtaining a patent for a treatment that would HELP those whose bodies aren't able rid itself of the MMR strains. Thus helping anyone who contracts these diseases, or who I would guess have an adverse reaction to the MMR vaccine. Therefore, he is in fact NOT competing with the vaccine but making it more "safe". I don't see a conflict of interest there, what I see is someone who is trying to help make the MMR safer!!

Dr. Offit
Seriosly NBC could you not find a more credible person? This guy has such a vested interest in vaccines, it's dispicable that you would even consider interviewing him for this piece! Dr. Offit holds the patent for the Rotateq vaccine and has millions of dollars at stake personally counting on public confidence in the vaccine program! Doubly sickening is the Rotateq vaccine is to protect from the rotavirus an illness that at worse causes diarrhea! Why the hell are we vaccinating against diarhhea in the first place! Just go to El Salvador and drink the water and you'll get the D, I don't see us spending millions to help make the water safer there!

Thoughtful House
Dr. Wakefield is one of the back bone, ground breaking pyhscians who brought to us the biomedical treatment protocol that has helped thousands of children and in some cases curing children, something unthinkable 10 years ago! Since coming to the US, Dr. W founded TH and now oversees the pracitce with several other maverick doctors.  In the episode they sadly downplayed what Thoughtful House is doing and therefore discredited how many children they have helped. They even suggested that the link between Autism and GI dysfunction was a load of crap. That may be true, but what I do know is what I have seen in my own child since we started in May. Six months ago I had a child that was gradually getting worse and worse as the years went on. He screamed every time we got in the car, would hit to get his way, would lean over the couch arm to relieve the pressure on his gut, etc. Spencer had chronic constipation and would only BM about once every 4-5 days. He was in PAIN and was starting to severely act out because of it! At 8 years old enough was enough and I made the last final leap of faith to help him and it has been worth every penny, every sleepless night, every late night baking bread!! No, Spencer still doesn't talk and still wears a pull up, but he's HAPPY and enjoys life so much more!! He's finally pain free, he has a BM everyday, and is much more an engaged part of our family!! Is there a link between ASD and GI dysfuntion, maybe not, but my ASD kid had a serious GI issue and we are on our way to correcting it, thanks to Thoughtful House and Dr. Wakefield.

Research
On the topic of "research" think about this.....the Dateline show stated that $122 million was being spent to research the causes of Autism let's contrast that to the $4 billion that was recently spent on the "Cash for Clunkers" program. Think what you will about this fact. In 2006 the number of children with Autism was 1 in 250, 2 short years later, in 2008, the number was 1 in 150 and today estimates are closer to 1 in 100. They say the Swine Flu is a pandemic....that is LAUGHABLE compared to the stagering cases of children with Autism. These children will grow to be adults, then what??? I would say that $4 billion would have been better spent elsewhere?!

My take on the vaccine debate:
Many people have asked our opinion on this and my answer is....no, we do not believe Spencer's Autism was due to the MMR or any vaccine for that matter. Spencer has always been different and special. I DO believe however that our country OVER vaccinates. Did you know that veterinarians were at one time giving 6-7 vaccines to our household pets, but because of the adverse reactions they have now trimmed it down to only 3.  There ARE children out there that have been adversely affected by the MMR vaccine.  I praise God we haven't had to endure what many other parents of ASD kids have had to go through.  We have not had to experience the heart wrenching saga of walking into the doctors office with a perfectly healthy, normally developing child, allowing the child to receive a "safe" vaccine and within days watch as he retreats into the hell of Autism. To many parents, and many friends of mine, this is reality! Yes, the medical community has "tried" to replicate what many parents have seen in their children none of which have been able to do so. But I ask you, who would you believe more, the medical community (that has a vested interest in the vaccine schedule) or a parent that struggles daily with a child that was at one time "normal" with nothing to gain except to help other families avoid enduring the hell they are dealing with?

My advice to new parents:
Think about this....Dr. Wakefield suggests that there COULD be a link between the combo vaccine MMR and Autism. He does NOT say to not vaccinate.  He proposes instead a more conservative vaccine schedule. I agreee 100%. I would NOT subject my child, by not vaccinating him, to a life threatening illness such as the Measles or Polio and risk death.

Some facts.....Did you know that by the time a child is 6 years old, s/he has received 36 vaccines? Now you probably don't realize this because they have created combo and supercombo vaccines that contain multiple vaccines into one, so you may be thinking they only get about 10 or 12. Remember also, a vaccine is a live strain of the disease you are vaccinating against.  So, you are essential putting into a small child, with a developing immune system....36 strains of viruses. Did you also know that of the 36 vaccines 2 are for Chicken Pox, a disease that most of us got as a child and were lucky enough to stay home from school for a week, have mom wait on us hand and foot and we were fine! Another 2 are for the Rotovirus an illness that causes diarhhea, seriously last I checked that isn't a life threatening illness. Why then are we exposing our tiny babies to these 2 illnesses when neither are life threatening (in most cases)?

In closing....

New parents, find a Ped who follows an alternate vaccine schedule, but do NOT and I repeat do not NOT vaccinate!!

Everyone else....do your research on the Swine Flu. There's some really shocking and surprising information about that "new" vaccine!! I will NOT be giving it to my kids! We will wash our hands, practice good hygiene and if we get the Swine, we will treat the flu symptoms like we do any other time we have had the flu. (To see an indepth article on the Swine Flu conspiracy, email me tamieichenberger@hotmail.com and I'll send it your way. SHOCKING VERY SHOCKING!!)

As an aside, we have a follow up appointment at Thoughtful House tomorrow, so stay tuned to find out what else we get to add to our treatment protocol.

Check out Spencer's new Faux Hawk!

Until next time....grace, pleace, hope, love and prayers!

T

Saying Goodbye to Summer, Over Commitment, Nothing's Too Small and a Compass

2009-08-23T21:31:00.000-07:00

Tomorrow is August 24th and if you are a parent of a student or a student yourself, you probably fall into one of two camps....those that don't want summer to end and those that are VERY ready to get back into school. Well, me, I am totally in camp number 2. Don't get me wrong, we have had an amazing summer. Both boys have had some wonderful life changing experiences at summer camp. Parker has been to several sports camps and has really improved his skills in both basketball and golf. The bigs (that's Mike and Parker) spent a really fun week in North Carolina on the beach with Mike's grandparents. Spencer started his Bio Med stuff and spent several weeks at his awesome new school, Spectrum of Hope. And finally, the kids and I capped it off with a super fun week in Ft. Worth visiting my parents. (More to come about some crazy times last week---great stories to tell!!)

With the new school year comes a time of refocus and dedication; a time to start new so to speak. The slate is clean for most kids and as parents we can put last year behind us and look forward to this new exciting school year. Well, at our house, this is a bittersweet year for us. The big kid starts 5th grade and for some reason, it is hitting me really hard, I feel so much more emotional about it than when he started kinder. I guess I realize how much he has grown up! It’s really his last year to be a “kid”—his 11th birthday was the 21st and he made a big deal out of finally being a “pre-teen” UGH!! Really?? Already??? For Spencer, well if you've been keeping up with the blog, you know what this year brings for him! Can't wait to get him started at Spectrum. He will start tomorrow at Woodcreek (his old school) and attend there for at least two weeks. Two reasons for this, one Spectrum won't officially start until the 8th and since he is in the Special Education program in KISD, we need to have an ARD meeting to formally dismiss/withdraw him from the program. I STILL have very mixed feelings about all this. But I'm trusting God and letting him lead this journey!

For me, well I came to a BIG realization tonight on my run! I have WAY overcommitted myself in ALL areas of my life! Surprise surprise! I have this really unique quality that I think I can do anything and everything. This started way back when I was a little kid. My mom to this day still jokes that any time a teacher would ask the class for something...cookies baked, costumes sewn, carpool driven, field trip chaperon, I was the first one to raise my hand and say "my mom will do it." My 5th grade teacher Mrs. McKeller called my mom one day and said to her...."Mrs. Arledge, you do know that Tami has volunteered you to help with the school play, donate costume supplies, and a bunch of other stuff, is that okay with you?" My mom of course was probably not okay with this, but she was (and still is) the type of mother that does anything for her kids, so with a servant heart she always pulled through for us. I think maybe that's where I get it. See mom, it's all your fault! (Ha ha!!)

So back to my situation....currently at work I am a little overextended with two really big ambitious projects. I know I can get them done and both of them are really a lot of fun to work on!! I am so excited about both of them and look forward to seeing how they turn out and the impact they will have on our Managers!!

In my mom life, this BioMed stuff and managing this school transition is a lot of work. Keeping track of all the supplements and then all the logistics of withdrawing him from Woodcreek and getting him started at Spectrum. Besides all that, I still worry over it quite a bit, and it weighs heavily in my thoughts daily. But we are seeing great things, so it's totally worth it. I can't wait until this time next year; we get to look back on it all and see how far Spencer has come. With all this stuff also comes a constant insurance squabble. It's not a huge deal, but I am either on the phone or on the website daily checking on the status of our claims (for both Thoughtful House and Spectrum).

This year Mike and I also took on the role of class Director for our Bible Study class. Okay, so let me clarify this (since I know Mike is reading!!) Basically, the Married Life Pastor at our church asked Mike if he would like to be the class Director. Mike (having a little more sound judgment than me) told Brad he really didn't think we could devote the time and effort needed to make the class successful. Of course, when Mike told me about it, I said, "Come on babe, we can and should do this" and then I launched into this grandiose scheme of how we could turn our class around. The class had a rough year last year and was in need of a little overhaul. I can be very convincing, and Mike reluctantly agreed, but made it very clear to me that he would need all my help and that we would be doing this together! I was totally on board!! So, here we are the On Demand class directors. Being that I love to have a good time, I decided that I also wanted to be the Social Chairperson! So, we are pulling double duty. But, let me tell you....so far I am really enjoying these two roles! I get to see so many people getting excited about our class again. We have a really awesome core group of people and I can't wait to see what this year brings for each of us in our friendships with each other and our walks with Christ. We are gonna blow those other “30 something” classes outta the water this year. They gonna be wondering "what are those On Demand folks up to??"

So, this evening I headed out on my run. Running is a great way to have a little DQT (that's Daily Quite Time). I run about 6 miles and it takes about an hour (yes, I am a VERY slow runner). So, this is a great time to think! This evening I start going through my to-do list in my head and do a little strategy planning for each of my commitments. I can come up with some really crazy (and sometimes good) ideas on my runs. Tonight, though, all of a sudden, like being smacked by a Mack truck it hit me....Holy Crap!! I totally forgot, I volunteered to be the Campus Junior Achievement Liaison this year! Oh boy, yet another thing to add!! I do LOVE Jr. Achievement, so like all my other commitments, I'm pretty excited about this one too!!

I find it really ironic that for some reason THIS year, when we have so much going on professionally and personally, we have taken on so much more than we EVER have!! But you know what, I'm really not all that stressed out about it. It's really crazy how timing works in our favor and how just the right things come along just when you need it. A few months ago (right in the midst of all these new commitments), our new friend Mike wrote an article called Nothing's Too Small. In it, he examines how there isn't anything we do, if done for the right purpose, that will go unnoticed in the eyes of God. (Oh yeah, and he talks about our little Spencer, so it's a doubly good article!!) Here lately, seems like every time I feel a little overwhelmed, I re-think what my purpose here on earth should be. This is really the first time, I've every really thought about my commitments and why I choose them so willingly. So, tonight on my run, I came up with "My Compass" and moving forward, like an adventurer uses his compass to chart his path, I will use “My Compass” to gauge my commitments.

My Compass
First, does it show God that I love him, that he is special in my life, that he is my king and that I am a faithful follower?
Second, does is show my kids that I love them, that they are special, that God loves them and that I am an example to them of what it means to be a follower of Christ?
Third, does it show my husband that I love him, that he is special, that God loves him and that I am an example of what a God loving wife should be?
Fourth, does it show others around me that I am a Christian, that I love Jesus Christ and that I am a faithful follower?

I can pretty much answer YES to all four of those questions in all my commitments, so while I may feel overcommitted right now, I know that everything I am doing is being done for the right purpose and therefore will be used by God to advance His Kingdom! And that, my friends, is pretty darn exciting to me!!

Until next time….grace, peace, hope, love and prayers!!
T

Therefore, my dear brothers, stand firm. Let nothing move you. Always give yourselves fully to the work of the Lord, because you know that your labor in the Lord is not in vain.
NIV 1 Corinthians 15:58

I really like this translation…so gotta add it too…

With all this going for us, my dear, dear friends, stand your ground. And don’t hold back. Throw yourselves into the work of the Master, confident that nothing you do for him is a waste of time or effort.
The Message 1 Corinthians 15:58

A Change of Focus

2009-08-17T17:32:00.000-07:00

WOW! This blogging journey has turned out to be so much more than I could have every imagined! This all really started out to be just a chronology of our Bio Med Journey, but it has turned into so much more than that. We have had family and friends from all over the country emailing and encouraging us! It is by far the best part about this and makes this so much more fun!! I love it, it makes the late night stints on the computer after the hub and kids are in bed so worth it. Not only is it encouraging to hear what you all have to say, but for me, it is a blast!! I have found it to be quite fun cataloging our lives and what all is going on. It has made me stop and think about "life happenings" a little differenlty. Through this all and a little sense of humor, I have come to realize that really, nothings worth stressing over, and in the end, it’s all really quite funny (and part of a bigger master plan). Oh my life would be so boring otherwise!!! =)

It’s also been really cool when our distant friends and family tell us how much they appreciate hearing about our family and all the craziness. So, with that, I have decided to change things up a little bit, shake it all up and expand our topics. Let me tell you, between Mike, Parker, Cosmo the dog and a cast of many many more characters I have all sorts of fun stuff to write about and I am soo excited to get it going!

FAIR WARNING: family and friends don’t be too shocked if you find a little dirty laundry aired out here on the World Wide Web. Ahhh, just kidding, I would never put you out like that, well, maybe if you deserve it! Again, only joking, you all are so much a part of this story, I really can’t write about it any longer without you in it!!

Okay, so there you have it, a change of focus to our little corner of the web. Only kicker right now is, I would really like to change the title from Bio Med Madness to something else that describes our family; I just can’t think of anything clever!

So…here’s a little challenge to all our readers….leave a comment or email with your suggestions for a new title. Ryan, I really can’t wait to hear what you can come up with!! Ha ha!! (Ryan is my BIL—married to my little sister, they live down the street from us, so you will be hearing lots about them!!—Sorry C&R, that’s what happens when you live close!!)

Anyway, the kids and I are in Ft. Worth visiting my parents this week and I already have a huge note on my Blackberry memo pad of funny/interesting things that have already happened so look forward to hearing more. But for now, here’s a little tidbit: Parker's first TD, Spencer's first B12, The Imposters, Parker asking me to pretend to be his 21 yr old sister "Theresa", Thomas (C&R’s oldest and my favorite nephew) asking “What happened to Spencer’s talker?”, Parker learning to play the guitar, and Little Lou getting stuck on the water slide. All this and we’ve only been here 2 days! What, oh what, more can happen! I dunno, but I can't wait!!

Until next time…grace, peace, hope, love and prayers!

T

BTW--I promised Parker I wouldn't "Twitter" I never promised I wouldn't Blog! Ha, gotta love the loop-holes!!

The Reflection Pool & a Big Decision!

2009-08-10T18:51:00.000-07:00

Friday evening the boys and I headed up to the pool for a little evening swim. Like I've said before, I generally sit on the side of the pool and read a book or browse some trash mag, sort of my chill time. But Friday, I was drawn into watching my kids, you know REALLY watching them and the miracles that they are. I am so amazed at both of them and what all they can and have accomplished. As I sat there a while, I started thinking about all the wonderful things Spencer has been able to accomplish over the last week and felt compelled to give a little update. I like to call it Cool Happenings by the Pool, here goes....

1. The GOG!
As we were walking into the pool, Spencer started talking (unprompted) about everything he was seeing. This is so incredible, because when Spencer does talk, we usually have to prompt him with "what is that?", or "what color is that?" and he will generally respond without looking up or pointing at what we are asking. But today, as we walked in he IMMEDIATELY saw the frog slide, looked up at me, pointed and said..."gog", next he pointed to the little buckets and said and signed "ello" "een" "boo" and "ed" (that would be yellow, green, blue and red). This is so cool, not because he is talking, he has been using these words for a long time now, but he is attempting to engage in a conversation by giving eye contact, pointing at and labeling what he sees without even being asked. VERY COOL!!

2. The Deep End
Generally Spencer likes to hang out in the splash pool; they have all these really neat water sprayer things, a slide and other cool things he LOVES. Well, he was hanging out doing his own thing, but I noticed that every so often, he would stop and look over at the diving boards and watch Parker do his tricks. I think after an hour or so, he had had enough with that baby stuff!! All of a sudden he got out and sort of walk, run, hopped, over to the diving boards with me doing the mommy speed walk to try and catch up to him (not a pretty sight in a bathing suit--a little too much jiggle-ha ha!). Now, Spencer can't really swim and we keep a life jacket on him when he is in the "big pool". He has learned to get around pretty good in his jacket and we have even taken it off of him a few times to let him jump off the diving boards. But, I have always been there to help him to the side. I didn't quite get there in time and he was already on the board and ready to jump in. So, instead of breaking out into a full on sprint (again, not a pretty sight), I decided, what the heck, let's see what he can do!! Well wouldn't ya know it, he jumped in and swam to the side all by himself!! Way to go buddy!!

3. Brotherly Love
I was also amazed at watching him "play" with his brother this week. Now, I use that term very loosely. Spencer doesn’t really know how to play with other kids and will generally just ignore anyone around him. I caught him not once but twice engaging with Parker.

First was when he and Parker were going down the slide at the pool. Parker being 10 thinks its fun to try and bend the rules, you know see how much he can get away with. This time, he was going down the slide backwards. I knew he was going to get called out by the lifeguards, but before I could say anything to him, Spencer was right behind him doing the SAME thing. It was so neat to see Spencer doing everything his big brother did, even if it would eventually get them in trouble.

The second time, it was a very rushed and hectic morning as we were heading out for school on Thursday. The boys were sitting in the chairs by the back door and were SUPPOSED to be putting on their shoes, while I frantically gathered all our crap to load up the car. Instead Parker, like any 10 year old, started mocking and making funny faces at me. Well wouldn't ya know Spencer thought it was so funny he started to laugh and make some of the same faces! That stopped me dead in my tracks and before you know it we were all in full on laughter. Needless to say we were late to school and work, but it was SO worth it!! The best part of this was seeing a little glimpse of a sense of humor in Spence. Albeit at my expense, but I'll be the butt of any joke if I get to see something so priceless!! A smile, a laugh and two brothers enjoying each other!! What more could I ask for!!

4. Are You Ready for Some Football?!?!
Spencer LOVES sports. He loves all kinds of sports. What ever sport Parker is currently playing, Spencer will really get into (football, basketball, baseball, golf, whatever).

During baseball, he will get behind the back stop and squat down like the catcher, act like he is at bat and swing when the ball is pitched and will pretend to run the bases.

During basketball season, he develops an uncanny ability to find the exact spot he needs to stand on to make a basket, and can make about 90% of his shots.

But, our favorite of all sports has to be football. Football brings so many great feelings, don't ya think? And right now we are ready for some football!! Parker had his first official practice this week and as we drove up to the field, Spencer said, unprompted, "boo-ball" and kept saying it over and over again. One of Spencer's favorite things to do at practice is get in a 3-point stance and you have to get down across from him and say "down, set, hut" and he will run toward you and tackle you! It is SO fun, because he will start laughing and have this HUGE smile on his face! It also comes in very handy when you want him to move a little faster...all you have to say is "down, set, hut" and he will start running. If you are ever at the Cinco Ranch Target you will know us when you see us. We are the crazy family in the parking lot, going "down, set, hut" run, run run, "down, set, hut" run, run, run "down, set, hut" all the way into the store. Now, this only works during football season, the other 9 months of the year, doesn't work.

You can also tell he is ready for football, because on the way to school on Friday, I looked in the backseat and he had Parker's helmet on and wore it all the way to school.

5. Supplements Galore

Today marks our first day on full supplementation! Woo hoo!! We are expecting great things to start happening. Okay, okay, I gotta admit, we haven't actually started the B-12 injections. We plan to this week; I'm a little freaked out about it, so maybe I'm procrastinating just a little bit, maybe! What does full supplementation mean, here ya go: (This is kinda fun, in a weird sort of way, I feel like a mad scientist!-mua-a-aaa (evil laugh)!)

Morning Smoothie

1/2 tsp calcium powder

1 scoop buffered C powder

1/2 tsp Vita Spectrum

1 probiotic capsule

1 P5P capsule

Evening Smoothie
1/2 tsp Vita Spectrum
1 tsp. Fish oil
1 capsule Zinc
1 capsule Magnesium citrate
1 5MTHF capsule

6. No More Pull Ups
I can officially say Spencer is about 90% potty trained. He has been able to stay accident free from the time he gets up in the morning until we get home from school. Now, that's pretty darn cool!! What about the other 10% of the time, weeeeelllll, we get really lazy when we are at home! Here's why....now when I say he stays accident free, I mean, IF we take him every 45 min or so, he will go every time and will stay dry (that's what they do at school, and I'm pretty good at doing in the morning). He is NOT yet trained to go on his own, but they are working on that at school. This is all fine and good and all, IF you remember to take him. Evenings are when we hit the wall....we are so exhausted and he really just wants to chill out. Okay, okay, I really have no excuse! So, alas, we will get better at this, I know he can do it, and honestly, I know we can too!! I also know that it will get easier at night when he begins to start initiating to go potty. We are on our way, again WAY TO GO LOU!!

7. The Big Decision
And last but not least, we have decided, made the leap of faith, are heading into unchartered waters and are going to send him to Spectrum of Hope full time in the fall. I am so very excited about our decision!! I keep thinking of all the really cool things the school can do for us, things that would not even be considered in the public school system.

Take for example all the supplements he is on. First off the school will not administer "supplements". Very soon, Spencer will need to have supplements during lunch time. There are currently several families in KISD that are struggling with the school nurses on giving supplements. It is really ridiculous and so full of political red tape! It is sickening that they can't give these kids what they need to function throughtout the day. Oh, but if it were a DRUG they would be all okay with that! Sorry, bout that soap box, it's just makes no sense at all!!

Second, we currently have to put Spencer’s sups in his smoothie. This is not ideal, because he is probably not getting the entire dose. There's concern that you lose a little bit of what is left in the capsule and any that might be stuck to the sides of the cup. It would be so much easier if he could just swallow them. I also think we will at some point have to give him something outside of a meal, on an empty stomach and you can't very well put it in a smoothie. So guess what, I am going to have SoH work on teaching him to swallow a pill!! And guess what, they will!!

I have to admit though; I had a little bit of a panic attack today when I had to notify KISD about withdrawing him from public school. It just feels so final, like there's no turning back (now I know that if it doesn't work out that they do have to take him back, but still it's a little scary). Today, when I picked him up and spoke to his afternoon therapist, I was once again affirmed that this is the right thing. Good things to come!

We have a pretty exciting week in store, tomorrow he is being evaluated for an ACD-that's an Assistive Communication Device. It's like a computer that he can touch a series of icons to form a sentence and it will give a verbal output of what he selected. There's a really cool program in Texas where if you have difficulty speaking you can get one for free. It's some how connected to the 911 service, so that everyone can have access to communicating in the even of an emergency, or something like that. I get it all confused, but hey, it's free, he needs it, and SoH will teach him how to use it!!

His brother is away at camp so he gets a ton of mom and dad time this week. We will be playing loads of "Wa-Luigi"--that's Mario Party 8 for the Wii--pretty cute whenever you say "Wa-Luigi" Spencer will imitate the sound he makes and say "eeeeeeeee" and give you a funny face! It's quite hilarious!!

His buddy from Barnabas is coming over to spend some time with him on Thursday. I don't really know for sure, but I think he's pretty excited about it. We have been asking him if we wants Mike to come over and he says "essss" and gets a big smile on his face!! So, yea, I think he's excited! I know they'll have a great time and we will too!! My honey and I are going on a date! Pappas peeps close your eyes; don't read any further....we are going to Perry's for a nice steak dinner! YUM!

Saturday night, the kids and I are heading up to Ft. Worth to visit my folks for a few days. We have lots of fun stuff planned...Hawaiian Falls, Six Flags, maybe a little golf. I'm sure there will be lots of fun stuff to blog about when we return!

Until next time....grace, peace, hope, love and prayers!

T

Be joyful in hope, patient in affliction, faithful in prayer.
Romans 12:12

Decisions Decisions Decisions

2009-08-04T19:41:00.000-07:00

Ever have something you pray for as hard as you can, garner all your family and friends to do the same, stick with it steadfastly for YEARS and all of a sudden WHAM....answered!! And then, not only answered, but the answer is so much greater than what you could POSSIBLY have prayed for? Sounds like a good place to be in, right? One would think so! But, guess what? Big fat NOPE, not so! Not a fun place to be in, not today, not yesterday, not all this past weekend!! Got you wondering huh? Well sometimes when a prayer is answered it opens up a whole new series of things to think and pray over! I have lost so much sleep the last 5 days with my mind reeling on the possibility of sending Spencer to Spectrum full time during the school year. Why is it such a hard decision? I have so many fears, worries and questions....(I know, I know, turn it over to God, trust in Him, let all your worries fall on Him. But remember I am a wee bit stubborn and I'm just not quiet ready...I'm getting there, SLOOOOOWLY!) Basically we have 2 choices and we welcome anyone to comment or email me on what your thoughts are....

Choice 1:
Stay in the comfort of routine and of knowing what is in store the coming year. It means keeping a routine that has worked beautifully for the past 3 years. My kids have not had to be in day care despite having two parents with pretty demanding full time jobs. What this means for Spencer....good programming from the top school district in Texas for providing services to children with Autism. KISD has been awesome to us; Spencer has grown in amazing ways over the past few years. I feel confident in the services they offer and the skill level of his teachers. This means familiarity, comfort, predictability! I can put education on the back burner for a while and focus our attention on all that we are doing with diet and BioMed intervention. Which, honestly, is starting to take a toll on me....it’s getting a little overwhelming. (Guess I need to update on that pretty soon.)

Choice 2:
Jump into the scary unknown!! This would mean a whole lot of running around town and quiet a bit of negotiating and working our schedule and routine!! What this means for Spencer....where KISD is good, Spectrum is Great! He has made such amazing progress the last 4 weeks!! What he has been able to accomplish would have taken KISD about 6-8 weeks to get to the same point. Instead of a few one on one sessions each day, it means one on one therapy ALL day. It means if there is something specific I want them to work on, they will. No more school bureaucracy, no more ARD meetings, no more IEP's, no more feet dragging to get ANYTHING done. What I get in return is a constant battle with Insurance and the fear that someday they will stop paying (we have been burned in the past). BUT, I have an advocate to help me through the process. It is Kimberly's mission to have insurance reimburse therapy for EVERY kid at SoH. She told me today that 90% of the kids are funded by insurance (boy have we come a LONG way in advocating for our kids—keep calling your legislators there is still much work to be done) She also said that most of those kids are BCBS clients-which we are also. Advocacy is not something we have in our disputes with the school system. (Well you can always hire an attorney--big $$$) So, basically, we have been on our own to fend for ourselves and as rookies navigate a systems of pros who have done it for years years with many many families. At one of our ARD's we were out numbered 15 to 2. Not good odds when you have to fight for something! It can be a losing battle, but somehow over the years, I have managed to develop a good rapport with them. Something I fear might become strained if we pull him out. We will probably have him back in the public school system at some point.

To each of you reading this, I hope the choice seems obvious to you and you can pass along a little wisdom to me!

There are a few things I do know....

I won't be able to sleep well if I can't honestly say I have tried my hardest and done everything within my means to help him.

I am a little afraid of the future. No matter the choice I make their will be good and there will be not so good. But I do know that it will all turn out okay, I have faith that it will. That doesn't mean I can't have a little fear and worry. ;)

Until next time….peace, love, hope, prayers and a little less fear and worry! ;)

T

Come to me all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your soul. For my yoke is easy and my burden is light.

Matthew 11:28-30

Things about Autism I wish the general public understood

2009-08-02T19:42:00.000-07:00

Hello My Friends!!

So, I had an experience today that really brought out the worst in me!! But more importantly it reminded me of something I started about a year ago and have been adding to ever since. It was sort of a "Pre-Blogging" journal if you will to help me express some things that really frustrate and/or have encouraged me as a parent of a special needs child.

You're probably wondering what happened today, (if not, just skip down to the end to read the list)....we had been at church all morning, had lunch and Mike wanted to workout, so I said, "Let's go to the Y and I'll swim with Spencer while you work out." FYI--the pool is one of Spencer's GREATEST joys in life.

The Y pool has this really cool water jungle gym, for a lack of a better word. You've probably seen what I'm talking about, they have all these wheels you can turn that make the water spray in different ways. Well, there is this one "wheel" in particular that Spencer LOVES to play with. So, he's there minding his own business, turning the water on, turning it off, turning it on, turning it off. I really enjoy this time, because it allows me to relax for a few minutes and read, one of my greatest joys. (Right now, I'm reading First Things First, the book by Kurt and Brenda Warner...LOVE it and highly recommend.)

Anyway, Spencer's having a blast; I'm soaking up some sun and enjoying my read. I look up from my book to check on Spencer and this mean lady was right in his face, shaking her finger at him!! I jumped out of my chair and flew over there and wasn't very nice....but said to the lady (which I always get a kick out of saying this, cause it sort of puts them in their place) ”He doesn't understand what you are saying to him, he can't talk, he has Autism." She was stunned, (I think she probably had a paradigm shift) and I was pissed! I mean I was HOT, I don't normally let these encounters get the best of me (they happen often enough), but today it just hit me wrong. You can mess with me all you want, but don't you dare mess with my kids, especially my child that can't speak up for himself!! This got me thinking about my "list", a list I started because I realized there were some things that I wish the general public knew about Autism. As you read it, my hope is that #1 you enjoy reading it and #2 you read it with a touch of humor....because if we take this journey too seriously, we wouldn't see the joy we have been blessed with in Spencer!!

Since 2003 we have been down a road I never imagined. Our youngest son, Spencer, has Autism, Global Apraxia, and severe Speech Delay (essentially non-verbal). As we have been traveling this road I have found there are just some things I wish everyone would understand about Autism and/or the families and children that are affected. This is our story.....

1. Riding the "short bus" ain't a bad gig....it picks you up at your door and it has air conditioning. Don't knock it til you try it!! Think about the 100+ temps in Texas in September!!

2. Be careful when you use the word retard, retarded, etc.....we all act like a bunch of idiots and we don't have an excuse. Spencer does and you know what, he really doesn't care what other people think of him.

3. In my opinion, Autism is WAY over diagnosed. That's my opinion.

4. If you know someone with a child with autism, OFFER TO BABYSIT!! This is the hardest part, finding time to spend with my spouse.

5. If you are in a store and you see a child meltdown, don't STARE or make judgments on their parenting----OFFER TO HELP!! It may be a distraught mother/father trying to deal with their over stimulated ASD child who needs your help.

6. Vaccines and Autism...I think there's something there. New Parents, do your homework and don't just take the opinion of your Ped....But on the contrary, do not NOT vaccinate just because you are scared that your precious baby will get Autism. There are alternate ways to vaccinate safely!!

7. Therapy costs $40K+ per year and isn't covered by most insurance companies. If you have a few bucks to spare, donate it to one of the many schools for children with Autism, you may just make a huge difference in the life of a child who can't afford therapy on his own. (Spectrum of Hope is our place!)

8. KISD is the BEST School district if you have a child with autism!! Audrey Bivens is an angel sent from heaven and has done so much for our district and services for children with Autism! You are the BOMB!!

9. When you receive the DX, you walk out of the office with a pat on the back and a good luck. Most Dr.'s offer you very little hope or information on what to do. Parents are left fending for themselves to treat their children.

10. If you are blessed enough to have a child with Autism you will "grow up" to be a better person.

11. I think Spencer (and children with Autism) is closer to God than anyone I know.

12. I wish I could have Autism for a day.....for many reasons....

13. You realize how important it is for parents to teach their children about special needs, disabilities and treating everyone with courtesy and respect.

14. You realize there are parents/adults out there that need to learn a little courtesy and respect.

15. Our wonderful new president just signed a bill to provide medical coverage to illegal children. Hmmm.....maybe if I were an illegal immigrant or better yet, quit my job and live on welfare I can be on Medicaid and my son's therapy will be paid for by the government. Oh yeah, I want to be a productive member of society and because of that I can't afford therapy for him because it's not covered by our ERISA health plan.

16. Don't know what an ERISA plan is???? Well, if you live in Texas your insurance provider is required (by state law) to pay for therapies for children with Autism. IF you have an ERISA health plan, they don't have to follow state laws.

17. MOST insurance plans are ERISA plans.

18. Giving exemptions to ERISA plans is a load of crap!! Why the heck do they get a free pass to not follow a law that has been passed in a state in which they are insuring folks? CRAP!!!

19. Camp Barnabas has got to be the greatest place on earth!! (Again, if you have a few bucks to spare, this is another great place!!) It's an OVERNIGHT (can I get a woo hoo!!) camp for children/young adults with special needs. Spencer went this summer and we have been forever blessed to have met Chuck, Jodi, Erik, and Mike!!

20. Suzette Steward has got to be one of the most energetic, passionate, and dedicated teachers in KISD. She not only devotes her time to our kids during the school year, she has also started Camp Journey, she has week long Day Camps, overnight weekend camps, and Swim Clubs for ESY kids. She is 100% dedicated to our kids!! Suzette, you ROCK!!

To be continued....anyone who is living with Autism and wants to offer your input....leave a comment...I would love everyone's perspective. This includes you....Aunts, Uncles, Grandparents, Friends, Teachers, Counselors, Babysitters, and Fellow Mommy Warriors.

Until next time....peace, love, hope and prayers!

T

With regard to the lady in my story, I pray that she seeks wisdom first, before she speaks, and for myself, I pray the same prayer. My reaction was no better than hers.

Brothers, do not slander one another. Anyone who speaks against his brother or judges him speaks against the law and judges it. When you judge the law, you are not keeping it, but sitting in judgment on it. James 4:11

The Money Tree Part II

2009-07-30T12:21:00.000-07:00

Hello Friends....

I don't have much time to post (I'm at work and really should be working--Leslie this will only take 5 minutes-I PROMISE!! =) ) BUT, we just got the BEST news and I really need to share it!!

So, Spectrum of Hope (the ABA school) costs about $1,150 a week. (In the past this has NOT been covered by insurance.) See the email string below....insurance has decided to pay this year! BOY DOES GOD ANSWER PRAYERS!!!! Thank you EVERYONE who have been faithfully praying for us!!

As a side note, I am cautiously optimistic about this, insurance has a way of finding loop holes and all of a sudden stop paying and in some cases we have even been asked to pay them back!!! But, this really does look hopeful!!

From: Kimberly Wallace
Sent: Thursday, July 30, 2009 1:28 PM
To: Tami Eichenberger
Subject: Insurance Benefits for Spencer for Spectrum of Hope

Tami,
Below are the benefits quoted by BCBS for our services at SoH. You will be receiving an invoice (if you haven't alread) indicating $0 is due. It appears after the first two weeks of service with us, you will have met your deductible. If you have any amounts not covered by insurance, we will invoice you for those, but it looks you will not pay anything more! Yea!

$150.00 deductible payable at 80% up to 1500 OOP, then 100% (max OOP per cal year for in network provider is $1,650.00)

This is not a guarantee of payment, this is an explanation of benefits, quoted by the insurance company. Deductible has been met and the OOP should be met shortly. (Do not know for sure, how much has been applied to OOP).

Thanks,
Kay
Kimberly Wallace-Nenson
Founder of Spectrum of Hope

From: Tami Eichenberger
To: Kimberly Wallace
Sent: Thursday, July 30, 2009 1:35 PM
Subject: RE: Insurance Benefits for Spencer for Spectrum of Hope

Kay,

SERIOUSLY??? HOLY COW!!! When will we know FOR SURE that they are paying? I have had the experience in the past where they quoted coverage, but then it came back that they didn't pay for one reason or another!

Also, what about what we have already paid ($3,450)? It what is being quoted is correct, they we possibly overpaid for the session we are just finishing up?

Thank you so much for helping us with this!! I am very excited and hopeful, but also cautiously optimistic. We have been burned in the past to the tune of $15,000 that we had to pay (scratch that, we are still paying :))

Tami E.

From: Kimberly Wallace
Sent: Thursday, July 30, 2009 1:39 PM
To: Tami Eichenberger
Subject: RE: Insurance Benefits for Spencer for Spectrum of Hope

They have already issued a check for the week of July 7 for $729.60...which is 80% of the weekly charges...see...below

Eichenberger--07/07/09 to 07/10/09 Paid $729.60

As soon as we receive the EOB's from BCBS, I will be able to tell you for sure what monies should be returned or God forbid, charged...Are you available to come in next MONDAY and sign some paperwork for me? and we can go over this together?

Kimberly Wallace-Henson
Founder Spectrum of Hope

Keep those prayers coming, if this really does become reality, the Eichenberger's have a BIG decision to make in the next month!!!

Until next time....peace, love, hope and prayers!!

T

The Great Escape at the YMCA

2009-07-26T12:28:00.000-07:00

Anyone who knows me knows that a part of my "therapy" in dealing with Autism, being a working mom and life in general is that I work out EVERY day. I LOVE going to the YMCA, it has been a great source of escape, friendship and fellowship with some really fantastic people. I know there are people who have children with Autism who have not had a good experience with the Katy Y, but we have and we love it there!! We have been members for several years and have had the priveledge of knowing a lot of people there most of whom are fantastic. They have always been very welcoming and accepting of us, Spencer and his differences.

The girls in the Child Watch are the best, and they L-O-V-E Spencer! They always greet him with a huge smile and a hug! He can be challenging at times and I have worked very hard to educate them on Autism and how to "deal" with Spencer while he is there. To successfully have a child with special needs included in a community program you, the parent, has to be willing to partner with them and work toward acceptance and tolerance. Most days Spencer loves it, he actually looks forward to it!! He has this cute little routine where he jumps over all the "cracks" in the pavement on the way in, holds my card to have it scanned at the front desk and then runs to the far windows so he can look at the pool. We stay there for just a quick minute, then I say "Spencer let's go play with our friends and then maybe we can go swim afterwards." On the way to Child Watch, he pushes the buttons on the 2 water fountains, taps the Coke machine and then taps the candy machine (not the Powerade machine, just these 2--I dunno). (It's a weird little OCD thing...but hey it's the simple things in life!!) Then he walks into Child Watch without a fuss, gets his sticker and goes to his room. I get to workout for about 2 hours and then we either go swim or pick up a treat for the way home. Easy as pie!!

Well, during our 2 weeks of antibiotics, that all changed for the worse!! I didn't realize it at the time, but when I finally put it all together it made sense. It started out with him acting really aggressive towards the staff, screaming, crying and hitting. They would come get me, I would go down to his room and tell him "Spencer we need to be nice and not scream, if you are good you will get your treat." He would calm down and I would go back to my class. This kept escalating each day until finally one day after going down there to "calm him down" several times, I had to leave after only 30 minutes of workout. If you know me, I get a little (okay, a LOT) bit cranky if I don't get at least an hour a day. I'm sort of pouty like that, I get in a funk all night, just because I didn't work out.....some say I am obsessed, I say, it's how I deal! Prayer and meditation for the mind and exercise for the body! A well rounded approach I say! (At least I don't have to take meds, drink or spend hours in therapy. ) I digress....

Well, like I said Spencer loves the pool at the Y, he could sit and stare at it for hours!! About a week ago we were at the Y and I had just got started on my workout...RPM--an awesome Spin Class--it's a new one and I am LOVING it. This was only the 3rd time I had been able to go, so I was really looking forward to this class. About 10 minutes in the Child Watch girl came down and asked that I go “talk” to Spencer. Well talking hadn't really been working the last few days, so I asked her if it would be okay if he went into the Kids Zone. (It's for the older kids and they get to play video games--he LOVES the Wii and PS2, so I figure it would entertain him for the rest of my class.) The room also has windows that overlook the pool, so he happily went in and sat on the couch by the windows and seemed so much happier and content. I'm thinkin..."Cool, this will for sure be his thing and will help with his aggression, maybe he was just bored in the other room?" So back to RPM I go. I actually got through the rest of the workout, but when I went back to Child Watch to pick him up the girls all had this VERY worried and concerned look on their faces.

One of them said "Tami, I am so sorry, Spencer got out, we are calling our supervisor right now! I don't know how this happened, I am so sorry, this is very scarey!!" I mean she was terrified!!

I was like "what happened?" I wasn't really all that alarmed, Spencer has this way of "wandering". While it can be scary at times, I really am pretty calm about it, because it happens pretty often and I always know where to find him, anywhere there is water or a lawn mower!

She said "He somehow slipped out and went down the hall (btw-this is a REALLY long hall) and went out the doors to the pool, had his shoes off and was taking his shirt off! He was about to get in the pool!"

I'm sorry, but I just had to laugh, that is so typical of Spencer. You see he is actually a LOT smarter than we all give him credit for. I know him.......he sat on that couch all quiet and content (looking sweet and innocent), but all the while watching the staff, plotting and planning his escape. He knew EXACTLY what he was doing! He wanted to go swimming and that was that!

I guess in the end I can say this little stint of antibiotics gave us our share for grief. I'm sure they did their job and I am so thankful for that, but I am ultra happy we are DONE!! We have been back to the Y the last week and EVERY day I have gone to pick him up, the girls all say how great he was. And, I haven't had to leave class and I have even pulled a few doubles (that's 2 cardio-classes back to back)!! What a treat!!

Look forward to the next post, we just got results from out consult with Spectrum of Hope and it was GREAT!!!

Took this last night, found him in Parker's room with the helmet on and football in hand! My little Sporto!! Can you tell he's ready for for some football? Countdown...isn't it like 3 weeks until pre-season starts? Go Texans!!

Until next time...peace, love, hope and prayers!

T

Consider it a pure joy, my brothers, whenever you face trails of many kinds. Because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything.

James 1:2-4

Oh what a fun 2 weeks we have had!!

2009-07-20T18:36:00.000-07:00

Just a little quick update! It's been a BUSY 2 weeks!!

We have had some BIG stuff going on with Spencer the last two weeks.

On the BioMed front, we are FINALLY done with the antibiotics. I say FINALLY because they were causing all sorts of bad behavior. Increased stimming, hitting, crying, screaming, running away, etc. (I'll have to blog about the Great Escape at the YMCA--that was fun!!) These behaviors are apparently a result of a yeast overgrowth. Seems kind of wierd that yeast would cause all this, and I was skeptical at first, but boy am I a believer now!! To see the shift from sweet litte Spence, to gradually turning into demon child, and now after a few days of yeast treatment, back to himself! I TOTALLLY buy into it!!

Here's how it happened....we blogged a while back about the "bacteria" we all have in our gut. Well if you recall Spence had 4 really bad ones and only 2 good ones. So, for the past 17 days we have given him 2 VERY strong antibiotics that are supposed to kill off the bad bugs. Well, while the meds are killing off the bad bacteria, they are also killing off the good, and since he now has zero bacteria (good or bad) to eat up and help digest his food, he had a strong overgrowth of yeast. (Lucas told us this might happend). Well, ding dong me didn't clue into this until about 10 days of banging my head against the wall with his troubling behavior. Needless to say Spencer and I weren't seeing "eye to eye" until I had my "aha" moment. Once I put 2 and 2 together I figured it out. THANKFULLY that is over. We are now on Diflucan for 21 days to kill off the yeast and a ProBiotic to help boost the good bacteria. We've been on it for 3 days and already he's back to his sweet self. I think the pharmacists thinks we are crazy, generally if you are put on Diflucan for a yeast overgrowth/infection, you only get 1 pill. We have 21, does that tell you anything about how aggressive we are treating this??

Second big thing for our little Lou is he started at Spectrum of Hope, an ABA school in Cypress 2 weeks ago. ABA is Applied Behavior Analysis, which is a process of reinforcing appropriate behavior and redirecting inappropriate behavior. It’s VERY intense/intricate, they first determine a target behavior or skill. Then using those targets, they reward the desired behavior/skill every 20-30 seconds with a reinforcer (candy, tickles, a toy or activity). They work up to extending that time and then eventually eliminating the reinforcer altogether. The goal being he begins to exhibit the behavior/skill without prompting/reinforcement. So what is it that he will be working on? Well, it's pretty cool because we give them his IEP's from school and they will work on them while he is there. (An IEP is an Individual Education Plan, it's sort of like a lesson plan that is customized for Spencer. When we get back into regular school, I'll be sure to bring this topic back up and explain more, but for now this should suffice.) They also did an assessment called the VBMAPP (not sure what that stands for...all these acronyms get very confusing), I'll see the results to that probably later this week. They do the assessment to see what his learning style is and what they need to add to his targets that will help him progress even further. Our biggest target is increasing his expressive communication via signing, vocalization and/or word approximations and using picture icons. The emphasis being on manding (requesting/asking for) this should help us in decreasing his tantrum behavior because he will gain confidence in his ability to obtain a desired item or activity and not be so frustrated. It should also help with potty training, which I am SO READY to be done with.

So far he is doing okay. He had sort of a rough start, but seems to be getting better each day. He works with 4 different therapists throughout the day and each one writes on his daily report what they worked on. He seems to be settling in with most of them, except for one. She writes that he is having a "difficult" time EVERY day. I'm thinking it's her. (It couldn't possibly be Spencer! he he he!) The others always say he had an "awesome" session. Who knows, I plan to bring it up in our consultation later this week. He went to Spectrum last summer and we found that it was just the boost he needed to get ready for the start of school. We are hoping for the same thing this summer! It's so intense for him and it's really a challenge for us (being working parents!) He and I HAVE been enjoying some fun time together though. School is 9-3, so you can see working 6 hours a day isn't going to fly. So he's been coming to work with me before and after school. He has been beyond AWESOME! He walks so nicely into the office (his favorite thing is using the FOB access card to get into the doors, he likes to put it up to the sensor, see the light turn green and hear the little beep...it's the small things in life!!) He eats his breakfast and sits quietly at “his” desk for a good hour and a half. At 8:40 we leave for school, I get back around 9:15, then head back at 2:45 to get him. We come back to the office and finish up our "work" until 4 or 5. We get to do it for the next 4 weeks!! I am seriously burning through some gas!! Here are some cute pictures of him "at work".

I really like this one, it's like he's saying, "excuse me, but do you need something? Can't you see I'm trying to work here!"

Until next time...peace, love, hope and prayers!

T

And we know that in all things God works for the good of those who love him, who have been called according to his purspose.

Romans 8:28

The Marathon

2009-07-13T18:12:00.000-07:00

I have often considered running a marathon, I mean I’m physically fit enough, I’m (fairly) young, and I have the tenacity to get it done. I have many friends who run the Houston Marathon and some who even run several a year. It intrigues me, it’s one of those accomplishments that you wear like a badge of honor. Do you ever notice the cars on the freeway that have the 13.1 sticker or the really cool people who have the 26.2? That’s why they put them there to say “I ran a marathon” and prove to the world they did it. Do you ever wonder about the training that goes into it? The pain and agony of the actual race? For most it’s a BRUTAL 2-3 hour ordeal, I mean really, that doesn’t sound like much fun?? As I ponder this task I seek out advice from my marathon friends and they begin to paint a picture for me of what training for and running a marathon is like. I mean you can’t just go out and run 26.2 miles, well I know one person who does, but he’s a little wacky like that! I also find out that MANY people who “run” a marathon don’t actually run the whole thing. This surprises me a little, because I think if you are going to say you “ran a marathon”, you should actually have to RUN the marathon, the whole thing. Anyway, so what does this have to do with our journey with autism?

Well, as I said, I have often contemplated the idea of running one, but recently I have come to realize that I don’t actually have to run a marathon, I run one everyday. You see, having a child with autism is like running marathon. You train for it every day, you read, study, blog, discuss, ask, seek, pray and find as much as you can, you arm yourself with the training to run the race. And when it’s race time you start off in a sprint, full speed, hopped up on adrenaline and the confidence that you have “trained” enough for the task at hand. As the race continues you slow down to a steady jog, and find yourself saying "hey, this isn't so bad, I can SO do this!". You find your happy place, your rhythm, your inner peace that it's going to be just fine. Then, you hit it, you hit a wall. Your legs just can’t seem to move anymore, they start feeling like lead, you just can’t seem to go on, it’s too hard, the finish line too far in the distance. So, you start walking, slowly, slowly, slowly. Then something happens, thoughts of your training creep back into your mind. You begin to realize again what you are there for, what your purpose is: to finish the race, at all costs. You begin to feel a slight tailwind; you feel the presence of God breathing life back into your spirit. Your steps begin to pick up and you find yourself jogging again, slow and steady, your legs are still tired, you feel beaten down, but you must forge ahead. You again find your happy place only to run smack into another wall. Again, you walk, and the race continues just like that for 26.2 miles.

In my marathon, some days I can see the finish line, I can taste the sweet victory, I can see the flags waving and hear the crowds cheer!! There is hope, I have faith, and we will overcome this race. But on other day’s it’s too far off to comprehend, I begin to doubt all the evidence of recovery. I can’t seem to picture a recovered child. And that is when I dig, dig deep and find the courage and faith to move because I know it is there! I know that I can not quit, this is our journey and we must follow the path. Whether it is a smooth rolling hill or a treacherous mountain, I have the courage and faith to know that we will be carried through the rough spots. I pray that someday I can look back at this race and see it as a small challenge that was put in our path. Will I have a recovered child? I can’t really answer that, it is not my question to answer. I can only give him my best and pray that the direction we must follow be revealed with clarity. All I hope for myself is that I can leave the race with the peace of mind and heart that we did our best.

Until next time...peace, love, hope and prayers!

T

Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go. Joshua 1:9

The New Not So Super Smoothie

2009-07-10T04:41:00.000-07:00

We blogged a while back about the Spencer Super Smoothie. Well, the crazy hippie lady at Thoughtful House told us to start “rotating” his food. Seriously, I’m happy enough we are getting him to eat smoothies and some meats. Now I have to think about “rotating”…who has time for that? Do I need to make a chart? Oh, I’m really good at charts…just ask Parker about his chore charts! HA!! I don’t have a chart yet, but I can see it in my not too distant future. Anyway, so to get some sort of rotation, we started changing up the smoothies a little bit, experimenting with adding in different fruits and veggies.

Well, Mike was going by the HEB on Monday and asked if I needed anything for Lou. I said, “sure get some cantaloupe, flax seed, and any other fresh fruit and veggie you see that he might like and see if they have any hemp or chia seed.” We both get pretty excited because he actually found some hemp seed.

Now before you all go calling CPS cause I got my kid on some hippie lettuce/wacky tobacy, let me clarify. This is not marijuana hemp, it is from the hemp plant (the seeds are really good for you—check it out http://www.smartbomb.com/nw15455.html !!) they grind up the seeds into a powder that is jam packed with protein and many vitamins that Spencer needs (tryptophan being one). Tryptophan is essential in healthy brain function. You may know it for it's popularity during Thanksgiving. You know it's found in turkey and everyone blames it on why they sleep all day on the couch after their Thanksgiving feast. FYI—it ain’t the tryptophan that’s makin you sleepy it’s all the yummy treats and a little over eating! Don’t you just love thanksgiving!! Mmm….turkey, gravy, rolls, pie…I’m getting hungry! Ooops, Sorry…..I was dreamin….back to the HEB story…he gets the hemp, some spinach, carrots, and asparagus.

The next evening we set out to make some new smoothies…for the base of the smoothie, we pretty much stick to the basics: berries, carrots, and either broccoli or spinach but this time we decide to throw in a few stalks of asparagus and a scoop of Hemp powder. We make the smoothies in a batch of 5 at a time, that way we are only making them every 3rd day. We have a Magic Bullet that makes some really awesome smoothies—it ROCKS!! It comes with 5 cups, thus the reason we make 5 at a time. We get all 5 prepped and then one at a time we blend them up. The blending is somewhat of an art you need to have just the right amount of liquid to get it blended…if you don’t have enough it won’t blend, if you have too much, it will be too runny and impossible to feed Spencer. It’s a process of put the lid on, blend until it seems stuck, take it off, shake it up, put it back, take it off, shake it up, put it back, etc. until it’s all blended up smoothly. We get them all done and they actually blended up pretty nicely, except for the lovely green coloring.

So Tuesday evening I sit down to give him his first “new” smoothie, he takes it okay but with every bite he gives me a really weird look and seems to “roll” it around in his mouth before swallowing. I think to myself, well, he’s just not that hungry. Wednesday morning comes and Mike experiences the same thing and it takes him FOREVER to eat it. Wednesday night, same thing, so I smell it, it smells AWEFUL, like asparagus. After about 3 or 4 bites, he starts gagging and coughing, I quickly put the cup under his mouth to catch anything he decides to give back to me. Wouldn’t that be lovely, green puréed spinach and asparagus all over the place! I manage to get it all down him, but I think I may throw the last 2 out. They are just too nasty. What did we learn today, adding asparagus makes for a NOT so Super Smoothie!! YUCK!

Until next time...peace, love, hope and prayers!

T

Do not let your hearts be troubled. Trust in God; trust also in me. John 14:1

Playground games

2009-07-06T19:43:00.000-07:00

Playground games....ahh remember the days when you were younger and you would be at school all hum ho about the day only to look forward to the one event of the day that was so much fun you just couldn't stand it. RECESS!! Think back to all the fun games you would play, red rover, dodge ball, keep away, 2-hand touch, etc. Most of the time it required teams to be formed and the process of choosing teams included a first round of rock paper scissors to see who would be the team captains. Then the "captains" would set off choosing sides. Today, some would say this process isn't fair to the kids, that it hurts their self esteem. HA! No, I say it's a right of passage, teaches a kid to be kind, make friends, try hard and always do your best. Because frankly if you don't do those things no one will ever want you on their team. I digress.....Remember the thrill and pride you would feel if your name was one of the first called? Usually that meant your were either "BFF's" or you were a great player. So I think my journey with autism is a lot like those play ground games. We'll get back to that....

My wonderful mother has shared our blog with many of her friends. She has the BEST friends! Her college roommate Barbara is the one who got us hooked in to Camp Barnabas, for which I am forever grateful. Her friend, Jan, was there with her when she was dealing with raising three teenage girls, without Jan, I'm not sure my mother would have come through that with sanity. We were typical teenage girls, catch my drift?? And her neighbors, they are awesome!! They have been there for her through so much! Each one of them is so special to her and to us (her daughters) because they have been her rock and salvation during the last 10 years. One of those neighbors, JoNelle, is the most kind, sweet, compassionate and loving Christian women I have ever met. Her faith and spirit were such an important part of my mom's battle with cancer last year, which I am forever indebted to her. Over the weekend, my mom forwarded an email from JoNelle with her thoughts on our blog...the following is a little excerpt from her email that really had a profound impact on me and re-confirmed some things in me that I have thought of all along, but have also compelled me to write about it in this edition.

To begin with..."this is one of the most emotional...heartfelt...sometimes funny...but always...containing the Spirit of Christ...in scriptures and stories...I have ever read...What a fabulous "writer". Tami is...but MORE than that what a Christ centered Mom she is...I can't begin to imagine what her life is like even after reading these Blogs...I can't put another person that I know in this "framework"...of being a working Mom, a wife...and having these two wonderful children...I have always heard and believe to a certain extent...that God gives "special children" to families that He personally chooses...AND I DO believe that your sweet family is a "God chosen one"...

Back to the playground....so yeah, I believe we were chosen to be Spencer's parents, to play on God's team. I actually believe that most of life is chosen by God. Life isn't happenstance. We all have trials and tribulations and I could spend a good deal of time validating why I believe that based on scripture and teachings that I have been witness to by our wonderful Pastor, Dr. Ed Young. But that's not what this blog is about. No doubt I have had my moments of saying, I DON'T WANT to be chosen, why can't I just have a "normal" child (I really don't like that reference, cause I don't know a kid out there that is "normal"). Why can't life be easy, I admit I envy those that appear to have the rosey colored life. (But you can always look deeper and find it isn't as rosey as it seems on the outside). Seriously though, I think I'm a pretty good person, I try to stay positive about this journey. But I have my pity parties, who doesn't? We all want life to be easy. We want the streets to be paved in gold and to live a carefree life. In this game, like on the playground, I am chosen. And you know what? It isn't so bad, I want to play on God's team. God chose us to raise Spencer, and for that I feel honored!! What better a compliment can a person receive to know that God, hand selected you, entrusted you, to raise one of His special children. I received this from another Mommy Warrior and it pretty much sums it all up...

Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth. As he observes, he instructs his angels to make notes.

"Armstrong, Beth; son; patron saint, Matthew. Forrest, Marjorie; daughter; patron saint, Cecilia. Finally he passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one, God? She's so happy."

"Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter?"

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it. I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make it live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you."

God smiles, "No matter. I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps, "Selfishness?

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, there is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider a 'step' ordinary. When her child says 'Mama' for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations. I will permit her to see clearly the things I see - ignorance, cruelty, prejudice - and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life."

"And what about her patron saint?" asks the angel.

God smiles. "A mirror will suffice."

I am not a saint, when I look in the mirror I see, Tami, mom, wife, sister, daughter, friend. I am nothing more and nothing less. God put us on this path and it's our job to stick with it until the end and for that I feel honored.

Tomorrow, Spencer will start 6 weeks of daily 1 on 1 therapy for 6 hours a day. I am so thankful for the people in my life who have made it possible to send Spencer to this wonderful place. At therapy they will focus on teaching him to "mand" (think of demand or ask for) his wants and needs. This is a HUGE step he needs to overcome in order to FINALLY be potty trained. (It sure ain't fun cleaning up after an 8 year old and I have been changing diapers for 10 years and I am SOOO ready to be done with that!) So, say a little prayer that God give these wonderful therapists wisdom and strength to teach Spencer what he needs to overcome this obstacle. It will give us all so much more independence!!

On the Biomed front, we are plugging along on the diet, we are sort of at a stand still developmentally. He is half way through his first antibiotic (which tastes horrible, so we are SOOO looking forward to being done with this one...5 more days to go). We will then start the second, Bactrim. It will be a little easier to give him, it's liquid and is grape flavored, so it should be a piece of cake. We do that one for 7 days. Then on to the Diflucan. I can't say I have noticed any difference with the meds. But I know it takes time.

Until next time....peace, love, hope and prayers!

T

I can do all things through Christ who strengthens me. Phillipians 4:13

The Money Tree

2009-06-30T18:13:00.000-07:00

I wish I had a money tree. Remember when you were a kid and you would talk and dream of a "money tree"? It would grow in your back yard and you could snip a little off and buy WHATEVER you wanted without having to hound mom and dad for a few bucks. Or remember when you wanted that really "sweet bike with shocks, pegs, lucky" (famous line from Napoleon Dynamite) your mom and dad would sweetly say to you "baby I would love to get that for you, but money doesn't grow on trees now does it?"

Well, Sometimes I think I AM a money tree! Well, most of us who are recovering our children would feel that way. A tree that is barren most days but you can sometimes see these tiny little buds growing. Wanna know what the first thing is that pops into our minds when we see those little tiny buds?? "Awesome, I can get those really sweet Jimmy Choos", or "I can FINALLY go upgrade my old computer", or "I really AM going to be able to pay my bills this month" or "Cool, I can have a Girls Night Out!!" NOPE, none of that!! What we think of is "Thank you Lord for providing and coming through for me on this journey!!! I can finally afford to send my son to ABA Therapy" "I can try Chelation, HBOT, TCM, MB12, Valtrex, PILL CAM, etc." "I can start setting aside trust money for when he gets older and I am no longer alive." That's what we think about.

Well I tell this story, because sometimes I feel like my tree has "just enough". We can do most of what we need to do, but the tree is still barren. Those tiny little buds when they start growing are quickly snapped up and the dream of that "new" treatment is gone. Today is one of those sorts of days. You know like when IKE hit Houston last year and tore the gentle flowers from our trees. Well, some of my little buds were snipped off today. Now let me stop and clarify again, I don't blog about money because we a looking for a handout or for you to feel pity for us. If you know The Eichenberger's, we are your average American family with a nice home, a nice car, and a little bit extra to go on a few vacations a year. But there are days on this journey when I feel like the sap is draining from the tree! And, like I have said before you gotta know the journey to appreciate the outcome. Two big blows in the "treatment budget" happened today.

First off, remember the fun pee story?? Well when we sent that off to the LAB we sent $99 and our insurance information. Awesome news, when I picked up the mail yesterday, there was a $500 check and an EOB from BCBS (insurance)! I'm thinking SWEET they covered it!! Woo hoo!! Now all I have to do is send the check to the LAB and that will be that. Well I picked the mail up today and there was a bill from that same LAB for $1,018. (To analyze pee?? You have GOT to be kidding me!!) Now we have paid $99 and have a $500 check to send them. So that leaves me with still owing????? Yep, about another $400!! What the heck!! I am an optimist, so I say to myself, well at least they covered $500, it could be worse, and I could be sending them another $900. But still, I had NO IDEA this was coming. So, snip snip snip from the money tree!!

Second, we got our follow up "notes" from our visit last week. I don't really know why they call them "notes" it's more like a "document" or "manual". It must have been 100 pages!! I sit down with my highlighter and a note pad to take "notes" (Yes, REAL notes that I can use and understand!!) As I get to the bottom of the page the VERY last line, says "please be sure to contact Anissa Webb to schedule your 6 week follow up." Holy COW!! ALREADY??? This guy costs $300/hr. I thought the follow up would be something like 3 months. You know long enough to work through all the "instructions" we were given. But it's all good, the bright side is we will have a chance to talk through everything and catch up on how the treatment is going. So it's a good thing, but snip, snip, snip again!

I leave you with one last note from the money tree....we sent off the claims to BCBS today and we need some fertilizer for our tree!! I like to think of prayers as fertilizer for our soul, helps us grow mentally and spiritually!! Plus it gives life, without it seeds wouldn't grow and flowers wouldn't bloom. So, tonight, tomorrow, Sunday whenever you say a little prayer, help us with some fertilizer and please PRAY PRAY PRAY that these get covered! If they do, we should get back around $600!! That would almost break even for the day!! Between the $400 to the LAB and another $300 to TH, that's $700, if we get $600 back we are only down about $100. That's not too shabby!!

Until next time.... peace, love, hope and prayers!

T

But seek first his kingdom and his righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

Matthew 6:33-34

Fowl isn't so Foul Anymore!!

2009-06-29T05:34:00.000-07:00

Quick update....

In a previous post we talked about TH telling us we need more protein in his diet. HA! Have I not said the kid ONLY eats PBJ, Fruit, and bread products. There is NO WAY he is going to eat MEAT!! But, again, I love a good challenge, so here we go.

Friday 6/26-I decide I'll scramble up some eggs and just see if we will eat them. 2 eggs=about 14g protein! That's pretty darn good since he needs 50g and only gets about 6 from a PBJ and 6 from the Spencer Super Smoothie, and about 13 from an ANDI bar. So I REALLY needed this to work. I crack 2 eggs, scramble them up with a little almond milk and salt, then back to the Spongebob game we go....I offer a bite and get a funny face and a big fat "no" in return. (Well, Spencer has this really cute way of saying no, it's more like a "neow".) TV off, "Spencer take a bite and you can play your game" mouth open, eggs in, funny face, and success!! He took the rest of the eggs without a single complaint! He MAY have even liked them, I'm not sure about that, but maybe? (that's me being hopeful)

Saturday 6/27--eggs for dinner again....no problem, Spongebob is my friend!!

Sunday 6/28--for dinner tonight I made Mike and Parker homemade Chicken Quesadillas. I decided to bake an extra chicken breast and see if we would be lucky enough to have the same success as we did with eggs. 4oz chicken has about 22g of protein, so you can imagine how much I REALLY wanted him to eat the chicken. I'm a little (okay A LOT) controlling when it comes to this intervention with Spencer. As I am flitting about in the kitchen, preparing myself for the great chicken debut, Mike says to me "I'm going to give him his chicken." Oh....okay, I'm thinking! This makes me a little nervous, because I REALLY want him to eat the chicken and I have a hard time handing over the reigns!! But I do have faith in my man, so I cut the chicken up on a plate and hand it off. (Well, the controlling me decided I had to be in there too "just in case") Wouldn't you know it, success!! He ate it, and Mike was the one who gave it to him!!

What did I learn today....gotta work on my control issues! and Spencer doesn't think Fowl is so Foul anymore!

Until next time.....peace, love, hope and prayers!

T

Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him. James 1:12

Cooking with Grammy

2009-06-27T17:52:00.000-07:00

Let's back up a bit shall we....

So when we first were told to start the diet, I was VERY overwhelmed with what to offer Spencer. His diet basically consisted of waffles, bread, pancakes, oatmeal square, poptarts, ice cream, yogurt, PBJ sandwich, grilled cheese, milk and fruit. THAT'S IT! As you can tell, it was all ridden with the things he can no longer have. What in the world and I going to feed this boy!? Well, being the forever optimist that I am, I think to myself, YEA he LOVES fruit, I can just give him fruit. Okay, after a few days of a fruit diet, I started to get concerned that ALL he was eating is fruit. Well, fruit is good for you and all, but can a kid live on fruit alone? I say no.

So I do what any daughter would do....I say with a BIG smile on my face (and the Sullivan nod)...."Mom, I have a project for you!!" If you know my mother, you know that she LOVES, THRIVES OFF OF and LIVES for projects! For Pete's sake she remodeled her entire kitchen in the middle of some really brutal Chemo! She is also a bit stubborn and loves a good challenge. You can't tell my mom something isn't possible, because she WILL find a way! She's really AWESOME like that. (LOVE YOU MOM!!)

I give her the run down of the diet and ask her if she wouldn't mind, in her spare time, trying some recipes for me. Oh LORD, did she try some recipes!! Within 2 days she made him a wonderful "wheat" looking bread, choked full of grains and stuff. It smelled awesome and he loved it. She also sent us home with some homemade GFCF chocolate chip cookies. They tasted a little "off" to me, but he loved them! The next day my older sister was coming to her house to "hang out" with her. Rather than having a girls day and truly hanging out, they spent the afternoon experimenting with a white bread recipe in a bread machine. I really should let her tell these stories, because I'm not real sure what all went down. By the next time I saw her, she had gone out and purchased a bread machine (the first one she used was borrowed from a neighbor), tried three different recipes, returned the bread machine and said, they weren't "fit to eat". But alas, she did have for me the most wonderful white bread, made the "old fashioned" way, in the oven. It looked awesome, and tasted pretty good. If you have ever tasted GFCF stuff, it all has a very slight "off" flavor, but little Lou (that's what we call Spencer sometimes) doesn't mind it a bit! At this point, I'm starting to feel very hopefully that we CAN have "bread" again!!

Today, I sit with freezer FULL of GFCF treats for Spencer made by the loving hands of Grammy. They include:
Strawberry Bread
Zucchini Bread (sounds weird, but is DELICIOUS, sort of like a spice bread)
Orange Cranberry Muffins
Chocolate Brownies
Chocolate Chip Cookies (Version 2)

All these are very tasty and if anyone reading this is GFCF, email me I will be happy to send the recipe your way.

This post really is a tribute to my awesome mom!! Without her helping hand (and a little push now and then) I would have given up a LONG time ago! Mom, thanks so much for all you have been to me growing up. You have the spirit of a fighter and I do to thanks to you! You and Dad have always made us feel we could do anything and to NEVER give up! Spencer is 8 and I know many people may think he is too old to recover, but I will not give up!

Until next time, peace, love, hope and prayers!

T

So do not fear, for I am with you;do not be dismayed, for I am your God.I will strengthen you and help you;I will uphold you with my righteous right hand. Isaiah 41:10

Thoughtful House Part 2

2009-06-26T07:50:00.001-07:00

The story continues....

Wednesday, June 24th we had our first face to face appointment with TH. Dropped Parker off at Basketball camp at 8:15 and headed to Austin. Easy drive. Anyone who knows Spencer very well can attest that he is LAID back and content, as long as he has his "toys". (Any sort of video game or DVD player and movies.)

After a quick lunch at Panera we were there for our first appointment at 11:30 with our nutritionist, Dierdre. She's a little bit of a "earth mother", but what do you expect? Austin, nutrition, biomed....you get the point. Anyway, we ran through what's been going on with the diet and she was VERY HAPPY with us. So, feeling all pumped up and confident we left. Not much else to work on there, well except for going all natural and organic and removing food coloring, adding more water into his diet and trying to get him to eat more proteins. What? I thought we were doing good? So, back to the Spongebob game we go. We plan to start with scrambled eggs and use the same bribery we used with the smoothie. Time spent with Dierdre-90 minutes, Total cost of visit-$292.

Next Appt, Lucas Ramirez, he's a Nurse Practitioner that works with Dr. Jepsen the BioMed Dr. at TH. You can't get in to see Jepsen, he has too many patients. So we get the next best thing. I was a little disappointed at first that we don't get to see "The Man". But all my disappointment was put to bed once we met Lucas, he's a pretty cool dude. He has a son on the spectrum who is recovered (for the most part) from doing all this biomed stuff. We went through a parent interview, reviewed his test results. Okay gotta stop here and tell you about the tests.

So after our first phone consult, these 2 boxes came in the mail one was for a urine test one for a stool test. I am so dreading this that I put it off for about 3 weeks, then I HAVE to get it done to get the results back in time for our appointments on the 24th. Once I mustered up the energy and mindset to get it done, I get started!

First, the pee test, okay, we have done this in the hospital before. They give you a big bowl thing to put in the potty to catch the pee then transfer it to a cup. NOT THIS TIME!! We have this little bitty cup with an opening the size of a golf ball that I have to "catch" the pee in and then transfer it into this tiny itty bitty test tube with out spilling any and you have to do it fast because (the box says) light will ruin the specimen. Now it also has to be the first pee of the day. Oh lordy me, the pressure!! I do NOT want to have to start all over again. Now Spencer isn't potty trained, so you can imagine how this went down. I drug the poor baby out of bed at 6:30 am while we was good and asleep so he wouldn't have gone in his pull up. Still sleepy, sucking his finger, with his blankey love I put him on the potty at the ready with my little cup! Waiting, waiting waiting, here comes, he starts going, looks down and sees the little cup and stops the flow, I have only about a thimble full....CRAP!! "Come on buddy, it's okay, go potty." I say and he tentatively starts going again. We have success, I managed to catch enough pee to fill the tubes and get it sent off.

Now, maybe I should spare you the details of the poop test, but you gotta know the journey to appreciate the outcomes! LOL!! So, here we go....I'm thinking, this will be a piece of cake. Spencer has good poop consistency and he does it in his pull up, so no biggie right? WRONG!! First off, these tests have to be taken and sent to the LAB within 24 hours, via FedEx and they don't pay for weekend service. So, it's Wed, I think alright here we go....WRONG!! Wouldn't you know (well some of you know Spencer well enough that this isn't a surprise) he didn't poop for 2 days! AGH!! So, now we have to wait over the weekend and try again on Monday. Well, he pooped like a CHAMP over the weekend! I'm thinking he's all pooped out and we are going to have to wait days to get poop again!! Will I get this test out and results back in time? Damn me for procrastinating! I was wrong, Monday comes and we have poop! Yea! Now they give you this little bitty tiny scoopy thing to scoop it into 2 little itty bitty test tubes and they want you to take "several" samples within the poop. YUCK!! Through much disgust and gagging on my part I got it done and sent to the LAB.

So that's the testing story, I look back on it and laugh, but more importantly, after our visit on Wed, I am SO GLAD I made it through. You wouldn't believe how much you can tell about a person from their Poop! Testing Cost-Urine-$99, Stool-$219

So we review the test results. There are 4 good bacteria and 4 bad bacteria that they tested for in his gut. Spencer has only 2 of the good bacteria and 4 bad ones, and they are THROUGH the ROOF!! Think of it as he has 4 infections in his tummy. They also test for yeast overgrowth. It showed up as non existent "in" his poop test, but it did show up "on" his poop. What's the difference?? I dunno, but whatever. So, we have to take 2 prescriptions to rid his body of the bad bacteria, for 3 weeks. Bactrim and Flagyl. Well just like anytime you take an antibiotic you risk a yeast infection. There's a 90% chance the yeast will start to take over in his gut and cause all sorts of problems. So once we finish the the other 2 then we start diflucan for 3 weeks. On top of these three we have to start a Priobiotic that will help boost the good bacteria so they can fight off the bad bacteria once we get rid of them. Once all of that is done, we have to add in another 4 supplements, Magnesium Citrate, Zinc Citrate, Fish Oil, and Vitamin C. That's a grand total of 7 supplements that are added to the Spencer Super Smoothie everyday. Technically he explained what all these do, but I have no idea how to explain how they all work, so we won't go there. We will just pray they do what they are supposed to do.

Once we went over all that he tells us he needs a daily injection of B12 in the rump! WHAT!! I have to give him a shot EVERYday!! So then he shows us this power point on how to give a shot, and tells us "be sure not to go to deep and get it into his muscle tissue, because it will move through his body faster and he will be a crazy wild maniac!" Oh, you can bet I won't make that mistake!! I'm thinking to myself, okay, at least I have about 6 weeks before we have to start that! Look for a future post the day we have our first injection, I'm sure it will be a blast!

After we are done with Lucas, we check out. The lady at the desk says, that will be $532. Ouch! Time spent with Lucas 90 minutes. We stop off in the nutrition store and pick up 20 ANDI bars (these are super protein bars that he LOVES and gives him lots of good stuff!!) and a bottle of ProBiotics. Total cost $90.

Total Cost of visit=$913
Total Cost of Testing=$318
Previous Phone Consults=$342 (Intake $50, Nutrition Consult $292)
Grand Total Spent So Far=$1,573
Amount Covered by Insurance=ZERO!
Possible Recovery= PRICELESS!!

(Costs aren't put here to offend or ask for help, I think it's important to raise awareness about the lack of insurance support for treating autism. Autism is an epidemic and families are having to sell off everything they own to recover their children. We are lucky we have the means to pay and have much support from family!! Look for a running total with my posts, keeps they eye on the prize, recovery is priceless!!)

Until next time...peace, love, hope and prayers!

T

Because he is at my right hand, I will not be shaken. Psalms 16:8

Thoughtful House Journey Part 1

2009-06-25T07:48:00.000-07:00

Since we are starting to blog in the middle of the story, let me just give a brief history lesson....

Spencer was dx with Autism January 2004, he was 2 years 10 months at the time. He's 8 years old now. We have tried all sorts of interventions but we were always leery of biomed. You know witch doctor, crazy hippies, herbs and potions is what always popped into my mind. But since we are still non-verbal, not potty trained and seem to be getting no where fast, I am at a point that I will let those crazy hippies and witch doctors do their thing with my child to get him well. (BTW-I really don't think they are crazy witchdoctor hippies anymore.) So, we are going down that road, we called Thoughtful House in Austin and started the process in early April, 2009.

April 29th, 2009 we had a phone consult with the nutritionist and were put on the GFCF diet. I won't bore you with all the details and all the reasons why it works. In a nutshell it is a Gluten Free, Casein Free diet, which basically means Spencer can no longer have anything that is made with, from, or derived from Wheat and Milk. Imagine almost everything in your diet has one if not both of these ingredients!!

So off we went....and I gotta say I was not too thrilled about it. I had heard about the diet in the past and thought, there is NO WAY I could pull this off. But, we made the concious decision to give this a try so here we go.

May 2, we removed dairy from his diet. Pretty easy, just started giving him Almond Milk and stopped giving him cheese, yogurt, ice cream etc. He didn't seem to miss it and we saw great improvement in his big bloated tummy. For once in his life he almost looked like he had 6 pack abs!

Over the next few weeks, it was all about research! Finding how I could replace all the wheat products he loves so much. Found great information on the TACA website (that's Jenny McCarthy's group).

May 11, we went gluten free! Saw changes almost immediately. Some people don't notice it too much, it's very subtle, but it is there and you NOTICE if you live with him daily. For one, he "looks" at us more. I caught him one day when I was riding in the back seat with him staring at me. It was really kind of creepy and shocking, he has never looked at me that way before. Second, he follows directions a lot better. We used to have a heck of a time getting him away from the PS2 in the morning and on to the bus. Just days after starting the diet, I could say "Spencer your bus is here, please turn off your game, and get your backpack." And he WOULD DO IT!! He would even go as far as letting himself out the front door and walk to the bus by himself! WHOA!! (I am in noway impling he is some super compliant kid, he is 8 years old and kids will do what kids want to do 90% of the time, he is no exception.)

Part of this step in the journey, it was suggested that we start giving him a smoothie. YEA RIGHT!! The kid who ONLY drinks milk or water! You have got to be kidding me, there is NO WAY he will drink a smoothie. But alas, I was challenged and I love a good challenge. Using his Spongebob PS2 game I sat in the floor with a smoothie (just strawberries, banana and blueberries) and proceeded to feed it to him. I got a big fat NO when I tried to give him the first bite. So, I turned off the TV..."Spencer take a bite and you can play your game" He took a bite! and it went like that for the first smoothie, tv off, bite, tv back on, tv off, bite, tv back on. Well, I am proud to say that today, I say "Spencer do you want a smoothie?" "Ess" (That's yes in Spencer talk) We proceed to the kitchen sit at the island and eat the entire smoothie (No bribery needed). Go SPENCER! Now the gross part, the smoothie today is a far cry from that first yummy smoothie! Who doesn't love a strawberry/banana smoother! We refer to it now as Spencer's Super Smoothie (he has 2 each day):
5 baby carrots
5 frozen strawberries
1/4 c blueberries
1/4c chopped frozen broccoli
1 scoop garbanzon bean powder (protein)-GROSS!
1/2t calcium
1/4t vitaspectrum (this stuff tastes NASTY)
1 probiotic pill
Sounds yummy huh?? :) Can you believe he eats this stuff willingly and actually prefers it over other regular food! Good thing, it's the easiest way to get in all those supplements.

Today, I can say the diet isn't really that hard if you have a Whole Foods, HEB, Central Market or other big chain grocer that carries organic products, you can pretty much find anything you need. It is time consuming...every Sunday I spend about 3 hours in the kitchen preparing food for the upcoming week for him. (Making bread, waffles, cookies, cutting fruit and veggies, etc.) It's a small price to pay for him to be healthy, plus I am learning so much about cooking/baking. (I don't cook and I never really even liked to cook.)

We went back to Thoughtful House yesterday and will blog about it tomorrow, too tired right now and lots to think about.