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What Not to Say, Part I: To the Parents of Special Needs Kids

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This is the first of a three-part series on "What Not to Say" by Alison Hodgson, who blogs at olderthanjesus.blogspot.com. --JKR

 

By Alison Hodgson

He came out of nowhere and grabbed at my baby girl. I caught his hand and held it. He looked about six or seven but the way he pushed in so close was the behavior of a much younger child.

“Do you like babies?” I asked. “This is Lydia.” She smiled and drooled.

I knew she was coming—his mother, my comrade.

A second later she tore around the corner, mouth pressed into a thin line.

“We were just visiting,” I said, upbeat, friendly, but she just sighed and dragged her boy away.

We had never met, but I knew her. I knew that she had sat in a room, too small, with medical professionals and therapists and that they stabbed her in the heart, punched her in the gut, hit her on the head, spun her in circles and then handed her a box full of rocks and told her to carry it.

At least that’s what it feels like when you receive a diagnosis for your child.

My son Christopher, though only two, wasn’t with us that day because he was in school. He was born profoundly deaf but that was just one of his multiple challenges that would take years to fully diagnose.

When we found out Christopher was deaf it was so heavy, but to admit that, I thought, would be a rejection of Christopher himself.  How do you carry sorrow? I shifted the package and tried to pretend it was light.

“In the whole scheme of things, this is a small thing.”  I would tell people and then become murderous if they agreed and despairing if they didn’t. Finally, a friend said, “There are worse things…but this is a big thing.”

I exhaled.

It was a big thing, of course it was, and acknowledging that was no betrayal.

When we talk about what not to say to the parents of a child or children with special needs, we’re coming the wrong way round. If we don’t know the person well there isn’t anything we really need to say.

What comes up again and again, when I speak to other parents, is the day in day out commentary from strangers, the intrusive questions and unsolicited advice.

  • One friend, whose older daughter has Cystic Fibrosis, was given a newspaper clipping her mother-in-law’s friend found about embryonic selection. The implication was, “If you know better; you do better.”
  • Another friend whose young son has Down Syndrome was advised that he could have plastic surgery to “get rid of” his prominent features.
  • A friend whose little boy has autism has been told, “He doesn’t look autistic,” as if she was making it up to excuse his behavior.

I’m not saying that conversation with the parents of children with special needs is simple; we’re a sensitive and varied lot. What might be supportive and helpful to one person can be insulting to another. Some of us are infuriated being told “I’m sorry,” while others would welcome it as compassion.

If you’re an acquaintance, I’ll say it again: there isn’t much you need to say. If you zip it and decide to treat a child with special needs like you would any other, you’ll be headed in the right direction and the parent will guide you the rest of the way. Advocating for our kids is what we do.

If you’re family or a close friend, it’s different because, hopefully, you’re in it for the long haul. Still, you don’t need to have any answers. You don’t have to try to make it OK; we all know you can’t.

What you can do is admit that you don’t know what to say and that you’re afraid of saying something stupid. You can tell these parents that you love them and believe in them, that you love and believe in their child. You can tell them you want to be there for them, even though you don’t know how, exactly.

In saying you don’t know what to say, you will have said more than enough. And in telling them you don’t know what to do, but that you are there, with them; that they’re not alone: you will have done so much.

The photo of a five-year-old boy with cerebral palsy is used with permission of Shutterstock.com.

Topics: Culture, Social Issues
Beliefs: Interfaith
Tags: alison hodgson, flunking sainthood, special needs children, what not to say

Comments

  1. “In saying you don’t know what to say, you will have said more than enough. And in telling them you don’t know what to do, but that you are there, with them; that they’re not alone: you will have done so much.”....Your final paragraph is so true!!  When my children were young, well meaning people would tell me “God must know you are a very strong person, to give you so much to handle” or “God will not give you more then you can handle” or the worst “God knows how strong you are to give you so much…God knew I could not handle it, therefore, my kids are healthy.”  Why could they not just give me a hug, or squeeze my hand…be silent…Or, show me, they were concerned and bring a meal? Or a sweet card?  But, no…Instead of showing solidarity, it made me want to hide.  But, I didn’t….Oh, how are my kids doing?  They are AMAZING!  Early intervention, is the key….

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