Neuropsychological Testing ... Yet Another Thing I Never Knew Existed

I've always thought of myself as a person who is fairly well read with a solid vocabulary, but I quickly learned there's a whole lot of words I've never fathomed that I now know well enough to use accurately. Take neuropsychological for example. It sounds like a made-up word, like someone smashed two familiar words like neurology and psychology together.

But it's a real word, and today I used it in the context of Teddy having several hours of neuropsychological testing done at Children's Hospital in Milwaukee. Essentially, it's testing to evaluate where he is from a skills standpoint done through parent questionnaires, teacher questionnaires, specific activities to complete in person under the guise of play and then evaluation of  unstructured play with familiar faces. The purpose is to help us best understand Teddy, how to support him and to advocate for additional resources at school as appropriate. If I'm being honest, the last is probably my biggest hope, although there's some behaviors and the non-existent toilet training that were also discussed.

The testing went perfectly well today, as in Teddy was agreeable, in a good mood and typical Teddy. So his scoring should be accurate and give a good snapshot of who he is. He traveled well for the 3 hours of car rides for the appointment, handled the several hours of testing like a champ and even managed to get through the waiting room without making a spectacle of us. (Trust me, my level of acceptable social behavior for Teddy is much different than that standard for AJ, so we still get looks everywhere we go.)

But it was tough. I cried as I filled out the questionnaire I had to do today because it just sucks to see in black and white all that your child cannot do that others his age can do. I know it because it's our reality every day, but we get used to our reality and ignore the stark contrast. Filling out a form and checking only 3 boxes on a list of 25 or more items that Teddy can do is demoralizing ... and that wasn't even the communication page, which is usually the area Teddy lacks the most.

This is one of the many pages of fun forms. 

Hearing that he's made progress since he was tested almost two years ago is great ... except that progress still puts him at less than a 2-year-old average across the board. My goddaughter who turns two in February will pass Teddy in every skill by her next birthday, and that just sucks. It sucks because I know how damn hard he works for every bit of that progress, the 5 years of therapy it's taken us to get to that functioning level, the things we do every day to help develop those skills and how much I wish I could make life easier for him.

I don't want it to sound as though I'm in denial because we know who Teddy is and how severely affected he is with his CDG-PIGN. At the same time, though, hearing the words intellectual disability is like a solid kick to the stomach. It takes all my willpower to keep the tears in my eyes from rolling down my cheeks .... not because it's a surprise, not because I don't know that already, not because the doctor is mean, but because that just hurts to hear as a parent.

As parents, we want the best for our children, and sometimes it's so hard to understand how this can be the best for Teddy. That's why there's others who help us see the light on these tough days without them necessarily realizing it. My aunt came to visit as we were scheduled for several hours of testing. We got a brief visit, and she entertained Teddy while the doctor and I debriefed. And when I got home, still feeling down, I read her Facebook post (and stole her photo):

"A funtastic play date with Teddy this morning when he was here for his annual evaluation. I can’t describe the joy I feel to see his face light up when I walk into the room. He is a blessing."

The smile that lights up a room.