Reflections from Beach Retreat Leader

I spent that last week with 1,300 7th and 8th grade students from Second Baptist Church in Houston and here are my randoms thoughts, reflections and lessons learned. 

When you only have 15 precious vacation days, it's really REALLY hard to decide how to use them.  I was a bit torn about using them to go to Beach Retreat, becasue let's face it, vacation is supposed to be time off, relaxing and recharging to get back to work.  Looking back now it should have never even been a tough decision.  The Bible says we are to
 ^"Go therefore and make disciples of all nations, baptizing them in the name of the Father and of the Son and of the Holy Spirit, teaching them to observe all that I have commanded you. And behold, I am with you always, to the end of the age.”  Matt 28:19-20

Standing in the wave pool at Schlitterbahn early Thursday morning, I witnessed hundres of lives changed.  Young people who made a decision to walk with Christ.  Think about that for a minute, let it soak in....these kids are the FUTURE, we must do all we can to set them on the right path, one of wholesomeness, purity and a love for The Father, Son and Holy Spirit.  So yeah, not so tough a decision when it's put that way.  Investing in our future and more importantly following the Great Commission given by Jesus to his disciples, those that call him Master of their lives.  That's me, and that's my calling and if I'm so selfish to only want to use the gift of time off for my own selfishness, then I'm not living the life I was created to live.  Will I go next year....YOU BET!! (It's also not so hard because it was so freaking fun!!!)

A part of Beach Retreat was one on one time with each girl in my cabin.  I can't share what they each shared with me, but two things resonated in the conversation I had with them. (If your daughter was in my cabin, please know that these observations are not specific to one girl or general to all girls, they are just thoughts that I had after spending time with the girls.  Also, I think all these thoughts relate to boys and their parents as well, just flip the roles)

1.  Moms...your daughters want to spend time with you. Even if they don't act like they like you, they crave a listening ear and sound advice. Moms are so busy running the household, whether you are a SAHM or a working mom...we are the schedulers, organizers and keepers of all things to keep up with everyone and everything. I know we are busy moms, I have two sons, one with Austim and I work full time.  But you HAVE to stop what you are doing and plan time with each one of your kids one on one.  Moms, your daughters need "girl time" if they aren't getting it from you, they will seek it out from their friends.  Those friends will then be the ones giving them advice on all sorts of topics and issues.  Those friends are young and immature just like your daughters.  YOU need to be the one giving advice and being sound ear to listen.  Plan one on one time, a pedi, lunch date, shopping date, or girl time laying on the bed in their room.  If she seems closed off and uninterested, keep trying and no matter what she tells you or wants to talk about, don't judge, belittle or act superior. 

2.  Dads...your daughters adore you!  At this age, girls are looking for attention and acceptance, and as they enter puberty more and more they are looking for it from males.  Love your daughter, adore your daughter, tell her how beautiful she is, take your daughter on special "dates" just the two of you.  If your daughter feels any sort of disconnect with you, she will go looking for it elsewhere.  Even if you don't understand her, think she is from another planet, and feel like you can't relate to anything in her life.  You can "date" her, you can show her how much you love and adore her.  Buy her flowers!!  My dad did all of these things with my sisters and I, although I know at times he was overwhelmed with estrogen in our house, he adored us.  Becuase of that we all have a healthy relationship with and about men.  We know how a man should treat a woman and all three of us are strong women with men in our lives that adore us, because we were adored by our father, we sought men who do the same.

Final thought....WORSHIP at Beach Retreat

1.  Thursday evening, I was standing a little behind Parker during worship.  As the worship band rocked the house, tears welled in my eyes as I was overwhelmed with humbleness. I cannot believe how blessed I am to be given this amazing kid.  I take ZERO credit for the young man he is becoming.  If you were to witness what I saw, you would see a kid whose life is filled with the Holy Spirit.  As parents we dream a lot of dreams for our kids...we want them to be happy, we want them to be successful, we want them to find a great spouse, we want them to be smart, we want them to be great athletes, we went them to go to a great college, we want them to get a great job, we want so much for our kids.  But above all those things listed, if none of them happen the proudest I could ever be of my child is that he lives a life following Christ.  If that means he gives up everything and moves to a remote jungle in Africa, living in a mud hut, then I would be more proud of him than if he went to Duke on a Basketball scholarship, got a PHD and a well paying job with a beautiful wife and two kids and never followed the Lord.  

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

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

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!

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

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

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

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

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!!

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

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......

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!!

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

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?

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!!

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

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

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!!

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