Monday, December 15, 2008

A New Path

A year ago, in December of 2007, we received a referral from our pediatrician to have Thatcher evaluated by a Developmental Pediatrician at Texas Children's Hospital here in Houston. We sent in the paperwork and waited...and waited...and waited. After eleven months the day of our appointment arrived this past Tuesday.

We have always known he had severe ADHD and lots of what his therapists called "Spectrum Disorder tendencies." Spectum Disorder is the umbrella under which a few things fall: Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS), Asperger's and Autism are a few of the more common.

He has always had unnatural fixations on things starting with lights and then his hands when he was less than a year old. As he got older his fixations changed from keys to automatic doors and then to cars. As a two year old he could tell you the name of every single car on the road. "Mom, that's a Ford F150. Oh, there's a Lincoln Navigator and a GMC Yukon XL." Lot of kids have interests but it is the level to which they dominate a child's life that make them stand out for some kids. Thatch talked about cars from the moment he woke up until the time he fell asleep at night.

Thatcher also received speech therapy from the age of eighteen months to three because he only used language to label things, never to get his needs met or communicate wants. He never once said, "I'm hungry (or thirsty or hot or angry or sad...). In speech therapy terms it is called pragmatic use of language - using language for different purposes. He would simply tell you what something was whether it be a giraffe, chair, car, house or whatever. His vocabulary was full of nouns but no verbs!

His non-verbal skills were almost non-existent when he was younger. We could not get him to use sign language no matter how much we tried. He also never pointed nor would he take you to show you what he wanted. It was like he wasn't even aware he had needs/wants. He would just go along with whatever toys/food I set in front of him. This was true up until the age of four! Very different from his brothers who expressed desires from twelve months on.

He was also very delayed in other areas, always meeting all developmental milestones but months to years later than his peers. He had low muscle tone, refused to self-feed until the age of 18 months (even with a dietician working with him weekly) and would refuse all foods unless they were brown and crunchy. I could go on and on but I am sure I've bored you stiff by now.

All these were pieces to a puzzle but we just didn't have the big picture to put them all together yet. Our hope was that this appointment might do this for us. We would have a yes or a no in regard to whether or not his "quirks" (and we all have them!) were enough to label him with something on the autism spectrum. I went into the appointment really hoping the doctor would say something along the line of, "Yep, lots of spectrum disorder stuff but not enough to warrant a label. He'll outgrow most of this with time." That's not what we got.

Instead we heard, "Your son has Asperger's Syndrome." I even pushed back a little saying that this diagnosis can be somewhat subjective and my concerns about this being over-diagnosed as it is the "hot" label right now. She replied that we could take Thatcher to ten doctors and she was confident that all ten would have the same diagnosis. After all I've learned in the past five days, I now agree. Honestly, I have known for some time in my heart the reality that this diagnosis was coming, but it's still incredibly hard to hear.

So where do we go from here? If you asked me on Tuesday I would have said that I was filled with a strange mixture of relief (that I am not a horrible mother who couldn't control or fix her son) and great sadness, too. It was weird, to say the least, to have such contrasting emotions exist simultaneously. Today I would have to say that the dominant emotion is thankfulness. I am thankful that now at least we know what path we are on so that we may learn how to best help/support/teach our precious son. I wish I had been doing more all along to educate myself these past few years when we had suspicions but am ready for what lay ahead. Ask me tomorrow and you may get a different answer though. This is quite an emotional roller coaster for sure.

Here's to a new journey, a new path and helping our son be all that God created him to be.
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10 comments:

argsmommy said...

In our autism journey there have been plenty of times when I wished we could turn back the clock and do things a little differently. But then I realize that it is all in God's timing and His plans are perfect. Even though Thatcher's diagnosis is new, you've already been doing so many things that are going to continue to help him -- homeschooling being top of the list. You have a great attitude, and I just have a feeling God is going to do great things through your family. It is a roller coaster, but the blessings God gives are great too.

Kellie

Shannon @ Some Fine Taters said...

Praise God that you have a diagnosis at a young age! My brother is 26 and still living at home because of his limitations. I am as sure as any lay person could be that he's an Aspie. The symptoms fit to a T. Unfortunately, he's never been diagnosed. I firmly believe that an early diagnosis would have allowed his life to take a much different course and enabled him to develop his many talents.

Jenny said...

Dear Jennefer,

My 8 year old daughter is on the autistic spectrum. It has been a journey (and a struggle) at times but I came to realize that matching Ellie with me as her mom was part of his plan. If you'd like to read how I came to this acceptance, I wrote a post on it at http://lifeisnotacereal.blogspot.com/2008/11/my-open-letter-to-any-mother.html .
I will be praying for you as I read about your journey through your blog.

Hugs,
Jenny

ByHISgoodGrace said...

And, God will equip you to do so, dear sister...what a beautiful ending to your post--it must have been a difficult journey so far and I pray God's grace to be abundant. All parents need it, especially as homeschoolers and especially when our paths become new.

Brittney said...

I am so glad you shared this with us. I do not know much about it and have been curious.

I am so glad that you know the direction you need to go to get Thatcher the things he needs.

(((((Your family))))) as you continue to learn more! :o)

Brittney

Teacher/Mom said...

I have a good friend who is the Special Needs co-ordinator for MACHE (Minnesota Association of Christian Home Educators.) She has two sons who have Asperger's and she is a wonderful source of information. I would ask you to check out the following website. I think she would give you some good ideas as for what to expect, what to do next, as well as some Biblical perspective that she has gained in their family struggles with this disorder. I will say that her boys, especially her elder boy, have improved greatly over the last few years. Here is the website: http://www.machespecialneeds.org/

If you are interested, I can check with her to see if it is okay to give out her personal email to you if you desire. Just link up to my blog and leave me a comment and I can get it for you. Blessings.

Jennifer in MN

Tracy said...

Praying for your Journey...God will see you through!

mom24 said...

I truly understand the emotions that come as you travel this path. We started our journey last Jan with family counseling because we thought Rachel's (5yo) behavior was our fault. We then had her evaluated and along the way have learned SOOOOO much about her.

God has answered our prayers for wisdom. He has given us peace also about the unique way that He designed our child. And He is fiathful to do so for you as well! Be reassured in knowing that God has given Thatcher exactly the parents that he needs!
Blessings,
Andrea

Jenny in Ca said...

Jennefer,

a big hug to you.
It's hard being a parent.

I get what you are saying about at least "knowing' now.

much grace and peace to you,
and I am praying for you.

I can tell from seeing who you are on your blog, that you will do a spectacular job getting him the help he needs,and in loving and parenting him.

Stacy said...

At least you now know. Don't feel bad. You're a great mom. Wishing all of you the best.
Warmly,
Stacy :-)