I am a mom of three, and my first child, Joshua, was wonderfully “typical.” He hit all his milestones at the right time, with the exception of speech, where he was rather far ahead. Accelerated, even. And on the whole (except when it came to potty training), he was just…easy. Of course, my husband and I thought we were great parents.
Then we had our second child, Sophie. She was crazy from the moment she was born. And the opposite of “easy.” But, by the time she was two, it was clear she had some developmental delays, first in speech, and then also in gross and fine motor.
Then we had a third child, Jonah. Same song, slightly different verse. In short, two out of my three kids have had developmental delays. I have a 33% success rate on popping out a “typical” child.
Both my formerly-delayed kids are doing amazingly well now, and recently I was reflecting on what was the most difficult part of the whole “delays thing” for me – it was getting others to see Sophie and Jonah for who they were, how they were, and what they could do as well as what they couldn’t do.
Sometimes advocating for your child is the hardest part of parenting.
Advocating for your child requires you to be tenacious. Sometimes it requires you to say “no.” Sometimes it makes you look ungrateful. Always it is a “hard thing” that your child needs you to do.
As an example, part of Sophie’s deal was that she was super-shy and would not perform for strangers in an evaluation. Soooooo I had to convince said evaluators of what she was really like and keep her from being mis-labeled. (Why is it so important to put a label on everything – can a child not be shy anymore? Must everything be a syndrome?) Additionally, having a “label” was not important to me. Sophie had some delays and I wanted to treat those delays – the symptoms – I didn’t need to know the “cause” (if there was one) as long as they symptoms were responding well to therapy. On the other hand, of course, if it is required that your child be “labeled” so that he or she may qualify for the services and therapies that they need, well, that’s a necessary evil at one point. For instance, for Sophie to get into the preschool she needed to be in, she had to be classified as developmentally delayed, and as a “child with a disability” (the delays being the disability). This was totally fine with me if it got her into a classroom where she could get speech and OT and have an Intervention Specialist for a teacher. But there were some diagnoses I knew Sophie simply did not have, and I wasn’t going to let someone tell the world that she did. I knew her delays were temporary and she would overcome them with the right therapies and hard work at home.
After all we went through with both Sophie and Jonah, I learned a lot about advocating for your child who isn’t quite “normal” or “typical.” It is my unchangeable and yet probably unrealistic opinion that a child should only be evaluated for delays and possible diagnoses over multiple sessions in an environment in which he or she is comfortable. I think in a large percentage of cases, asking most of these delayed little girls and boys to perform for multiple strangers at a new-to-them location in a short period of time is just asking for really inaccurate evaluation results.