The past few posts I’ve discussed why we use standardized testing to examine communication in children with Down syndrome. Despite the various pros and cons of testing, what I want to make very clear is this –
No person can be defined by a test. We are more than our abilities and weaknesses.
As parents we know our children are so much more than a girl with Down syndrome or a boy with a learning disability. The same is true of ourselves – I’m more than a mom. More than a wife. More than a SLP. I am more than the sum of my own descriptions. That’s what makes me, me. Your child is more than a diagnostic label.
Testing has a way of adding to the stress we already feel as parents. First you have a child with (label #1), then testing potentially adds new labels. Just when you thought you had this thing called Down syndrome nailed. You read the report or you listen the words spoken by the examiner. Another diagnosis. The wheel of emotion goes around again.
I know. It sucks.
Let me tell you about our experience with diagnosis. Two years ago this week we started to notice our son Louis clearing his throat and making a funny noise. What we thought was allergies turned out to be Tourette syndrome. By the time we met with the neurologist I knew it was Tourette syndrome. After nearly 12 months and 7 different tics, I knew. But I wasn’t prepared to hear the words. No parent wants to hear the words. You tell yourself you do – to confirm that fear – but you don’t. Of course you don’t – it’s your child! So we finally got the diagnosis – Tourette syndrome. And I thought I would be sick. Even though:
- We knew the neurologist personally and he’d already informally diagnosed him
- I thought I was ready to “get the official diagnosis”
- We had more support than most other families in our situation
Despite all of this, I was still overwhelmed by the words: Tourette syndrome.
Then we asked the question, “How severe do you think it is?” In our clinic parents ask this question all the time. We give our most informed opinion based on testing, observations, and interactions with child. In Louis’ case the determination of severity was no exception. Louis had many tics which were pretty “normal” – like rapid eye blinking. And one of his tics was spitting. Yep. Spitting. It was not “normal.” He would only spit in places he deemed appropriate – outside, in a sink, or in the toilette. The trouble was – he was spitting. Like 20 times when walking 1/2 a block. At the zoo on a school field trip. After eating Oreos in our bathroom. You get the idea.
So back to severity – with the spitting, Louis was determined to be in the mild to moderate range. Moderate… as in further from normal than mild? Ugh. Again, that sick feeling came back. I thought this process was supposed to be helpful! Why was I feeling so terrible? We were the ones who’d asked the questions! I know many families who’ve said the same thing –
“The process was so overwhelming.”
I found comfort in the experiences of others. Recently I read The Happiness Project, by Gretchen Rubin and the following paragraph really resounded with me:
When people are faced with serious setbacks, a psychological mechanism kicks in to help them see the positive aspects of the situation, and I could feel myself starting to search for opportunities for “post-traumatic growth.”
Rubin also points out a common phenomenon known as the “down-ward comparison strategy” and talks about its ineffectiveness. You know the one, “It’s only DS. She can walk and talk. Some children can’t” or “He’s better off than children with (fill in random diagnosis). I should be thankful for that.” I’ve been there too – “At least it’s only spitting and a gulp noise. He could be yelling f&%# all the time. That would be horrible.” Don’t let yourself go there. It’s a waste of time.
Finding a support system can help you move from the point of diagnosis, which can be paralyzing, to a point of action (or non-action). A place to air the raw emotion. A friend who won’t criticize when you feel like nothing is fair anymore. Someone or something that helps you heal and grow.
Now – 18 months from diagnosis – that diagnostic process was helpful. Beyond helpful. I just didn’t realize it at the time. I was too overwhelmed emotionally. Pulling me up from what my friend Jen and I call “the dark and twisty place,” were words of former colleague,
“He is still the same child you walked in with. You just have more information about one part of him. That doesn’t change who he is as a person.”
It didn’t change Louis. He was still our wonderful little boy. He was still “ticking” and he still gave hugs that melted my heart. But I changed. I was able to use the diagnosis to change how I related to him – for the better! I stopped bringing attention to his tics and just let him live as a boy.
Your child is still the same beautiful person they were before testing. Uniquely their own person, ready to make their mark on the world. Find out how your child understands. Use that knowledge to help them grasp all there is to enjoy in this wild and precious life!