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What I'm Afraid to Say to Other Special Needs Parents

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Dear parents of children with special needs,

I am a mother of three boys, two of whom have special needs. One has a terminal genetic rare syndrome, while the other has ADHD — and I don’t know how to talk to you.

Your child has a disability? Has Autism? Has Down syndrome? Your world is full of hope, challenges, overcoming challenges, seeing results, seeing your hard work pay off and fighting for your children to be accepting into society just like any other child (rightly so). Your world is full of love, courage, strength and heartbreak, too. It’s almost like mine but not quite.

When you tell me how well your nonverbal child can communicate using different methods and supports, I am envious. You encourage me to try the latest “app” or use a “pic board.” I’ve done all that when my son, Ethan, could retain information. And you’re right, it did work, just not anymore.

I just nod and smile. I’m really not trying to be rude.

When you talk to me about my son while we both wait to see the speech and language therapist, you tell me about the pace your child is progressing with the help of the therapist. I hope you don’t ask me; if you do, I lie.

I just nod and smile. I’m really not trying to be rude.

When you tell me about what works for your child with autism and how I could apply some of your ideas to Ethan’s schedule or how I could use your ideas to help with behavior and  sensory issue to make Ethan’s and our lives a little easier, I appreciate it, I do. I want to tell you Ethan has forgotten his name; he can’t “remember” anymore, but I don’t.

I just nod and smile. I’m really not trying to be rude.

When you tell me how you fought the “system” to get your child included with extra supports into mainstream school, you ask if I’m sure my son is in the right school. I want to tell you Ethan has changed school three times due to his decline, but I don’t.

I just nod and smile. I’m really not trying to be rude.

The truth is, I’m an outsider to your children’s needs and your struggles. Yes, I’m a parent of two children with special needs, but I don’t “fit.” I don’t know what the “right” thing is to say. If I tell you about my son, I’m afraid I will sound like “that” mommy. You know, “that” mommy who always has to have it worse… the one who can trump any experience you may have had by 100 times? Yeah, her. I’m afraid that’s exactly who I’ll sound like if I open my mouth.

If I talk about my middle son and his struggles, I feel like a fraud because having Ethan diagnosed first gave me insight and perspective. ADHD, I can handle. I’m afraid you’ll think I have no insight into your struggles.

I just nod and smile. I’m really not trying to be rude.

I can’t fight the fights you do. I simply have to choose which ones are vital and which don’t really matter as time goes on. Ethan has a progressive syndrome. As he ages, his needs grow, and he needs change. Supports that were vital a year ago may very well be pointless in the here and now.

How do I speak to you without sounding like “that” mommy?

Because I need to speak with you. We have so much in common… yet we don’t.

Follow this journey on It’s Me Ethan!

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Originally published: October 23, 2015
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