Monday, August 31, 2009

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

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

Sunday, August 23, 2009

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



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

Monday, August 17, 2009

A Change of Focus

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!!

Monday, August 10, 2009

The Reflection Pool & a Big Decision!

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

Tuesday, August 4, 2009

Decisions Decisions Decisions


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

Sunday, August 2, 2009

Things about Autism I wish the general public understood

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