Tuesday, March 3, 2015

To Test or Not to Test?



Genetic Testing-Something many parents of kids on the spectrum are faced with. To know or not to know?

Why? Why not? Even as I write this my brain is starting to hurt. It's a simple blood test, right? No major procedure, not much pain. But why would I want to know? What will they test him for? What reasons do I have to even think about genetic testing?

Since our oldest son, Coby, is also on the spectrum but very high functioning, we had an inkling that Liam may be on the spectrum as well. We knew the signs to look for. Unfortunately we were right. Don't get me wrong-I love my kids to the moon and back; they are my heart! But I also don't want them to go through a life time of struggles. We didn't do any genetic testing with Coby. We had no reason to. But Liam is a bit more complex.

Liam has very different issues than Coby had, though they both have very high IQs and academically do very very well. But Liam had reflux as a baby and toddler, which lead to food aversion. To this day he gags at most foods and has certain foods that he'll eat and will not try anything new. He has social issues which is a regular part of autism, whatever regular is-coupled with sensory issues, stimming, etc. But then he is also having trouble toilet training and we think he just does not feel when he goes, which makes it difficult for him to successfully sit and go on the potty. He also just got glasses, which, at age four, is pretty early. Lastly, his ears stick out some, and one of his ears has an interesting fold in it. The Neurologist suggested we test for Fragile X in particular and other genetic anomalies in general. And I've resisted. For a while I just wanted to bury my head in the sand and not know.

The more I think about it, though, the more important it is for Liam to get the genetic testing. There are some conditions which later on in life carry more medical issues which would be beneficial to know about. Also, we would want to know what the chances are of both Liam and Coby of passing anything on to their own kids someday. So much to consider! But it's just a simple blood test, right? Followed by about 6 weeks of waiting. So for the benefit of my kiddos....it is time.