On Advocating For Your Child Who Is “Not Quite Typical”

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.

The bottom line is, don’t let anyone try to tell you something is true about your child that you know is not true. You may not have an expert degree in child psychology but YOU are the expert on your child.

Sure, in all things you should check yourself for the old denial. No one wants to recognize that their perfect child is not “typically developing”. It’s not fun, trust me. So, you definitely need to have people in your life who know your child and have observed them multiple times over a long period of time in an environment in which they are comfortable that you can ask, “Please be honest with me. What do you think? Am I incapable of seeing what my child needs?” This should be a person that YOU choose to trust with this question. And you need to be prepared to trust their answer.

Be your child’s advocate. That means champion their strengths but don’t deny their weaknesses. It means being willing to say, “No, you’re wrong,” to someone with a lot more academic degrees and “experience” than you have.  Or it means being willing to say, “Ok, what’s next?” after hearing shattering news from that same person that you know in your heart is true. It means putting aside your pride and putting on your big girl panties (and distance running shoes) to dash headlong onto the path that you must take to get your child every bit of help that he or she needs to be the absolute best that he or she is capable of being.

Even as you are trucking along down therapy road, never stop advocating. If you ever feel like a therapist, teacher, or clinic isn’t the right fit for your child, don’t be afraid to make changes. Your kiddo is depending on you to steer this ship, and in the long run (and it may be a long run), it will be your privilege to do so.

Do you have experience advocating for your child who has a learning or physical disability? Or just one who doesn’t quite “fit the mold”? I’d love to hear about it in the comments.

Jenny Rapson
Jenny is a follower of Christ, a wife and mom of three from Ohio and a freelance writer and editor.

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