A Diagnosis is Not a Label: Accepting Your Child’s Special Needs

labelI have two children with special needs.  My youngest child was formally diagnosed a couple of weeks ago and even though I knew it was coming, I’m still having a hard time with it. And even though I’m having a hard time with it, I still think giving him the “label” was the right thing to do.

Should You Let Your Child be Labeled?

Whether or not to let your child be “labeled” is a hot button topic for many parents and it’s one that’s been written about many times.

Your child is not defined by his diagnosis. He is not his disability. He is not a collection of symptoms in a book that add up to a label.

Alina Adams wrote a thought-provoking essay for Kveller explaining her reason for not letting her son be labeled. Parenting.com ran a very balanced piece on the issues called “Special Needs Children: Should I Label My Kid?

I’ve talked to many parents who worry that once they let their child be labeled, people won’t see him as a child anymore, but as a collection of pre-assumed symptoms, issues and outcomes.

Is that true? Maybe, but that’s where being an advocate for your child by educating other people about who he really is comes in.

What’s not true, though, is that getting a diagnosis is same as letting your child be labeled.

A Diagnosis is Not a Label

Letting your child be labeled implies passivity. It says you’ve stepped back and let something happen to your child, that you’ve let other people decide who he is and what to call who he is. I cannot make this point strongly enough:

Your child is not defined by his diagnosis. He is not his disability. He is not a collection of symptoms in a book that add up to a label.

You know who your child is.  He’s  the same adorable, exasperating, bewildering and hilarious child as he was before he had a diagnosis. The things that concerned you enough to speak with his doctor or teacher and led to the diagnosis are the same things that have always concerned you.  Having a name for some of his issues doesn’t change who your child  is or what he means to you.

What changes is that having  a diagnosis can help your child get the services he needs to move beyond those pre-assumed outcomes. It provides a framework for the medical and educational systems to help you find the best ways to build on your child’s strengths and address his weaknesses.

Rejecting the  Real Label

So, if that’s the case, what is it that’s hitting me so hard about having two kids with special needs?

Frankly, it’s not their official labels that bother me. (Autism Spectrum Disorder for kiddo #1 and ADHD with a co-occurring bilateral movement disorder for kiddo #2) I’m very glad that both of my sons have diagnoses that make them eligible for special education services. Neither of them actually need academic support, but they both need related services.

Without those so-called “labels,” both of them would fall through the strange crack that twice-exceptional children so often find themselves wedged in–a place in which their academic successes are celebrated and their other needs are questioned.

It’s the label “special needs” that bothers me.  I have three children, all of whom have special needs because they’re all unique individuals. But because the boys have diagnoses that mean their needs are a  little out of the ordinary, I’m suddenly the mother of two children with special needs, a phrase that’s worthy of italics and whispers.

But that’s not my life. I’m no more defined by those words than my sons are defined by their diagnoses. Did I let my kids be labeled? Some might say I did, but I don’t see it that way.

I gave them a way to get what they need.

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