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.