Each week I have the privilege of working with a number of groups of parents who have children with addition needs. As time goes on, these groups become supportive and inclusive, with a sharing of information and trust that is immeasurable. These groups frequently provide a safe environment for families to share their challenges and successes with honesty. These experiences are both acknowledged and celebrated by others that understand and just “get it”.
There are times when tough topics are discussed which can be confronting and overwhelming. But there are also times when stories and experiences will have us in fits of laughter. There is one topic which is often brought up for discussion and is met with irritation, eye-rolling, contempt and at times much laughter. I thought I would share this article by Michele C. Hollow in www.yourcareeverywhere.com. She describes so many of the feelings I have heard discussed in the parent groups.
10 Things You Should Never Say to a Special Needs Parent
By Michele C. Hollow @michelechollow
1. Topping the list of what not to say to a parent of a child with special needs is “I’m sorry.”
Instead of being negative, always be positive.
Most people mean well. However, they don’t always say the appropriate thing to parents of children with special needs. Allie Simons hates it when strangers apologise to her when they see her child.
Her child has Down syndrome, and she feels like strangers often pity her. “People don’t need to express regret over my child because she’s different,” Simons said. “They don’t see the fun interactions, her accomplishments, and her charm.”
“I don’t apologise to parents because their children behave a certain way,” she said. Her friend, Maura Shah, agrees. “My child’s on the autism spectrum. I’ve had people apologise to me because my kid is different.”
So rule one of the 10 things you should never say to a parent of a child with special needs is don’t apologise. That should be followed by:
2. He wouldn’t behave that way if you discipline him.
Many parents of children with special needs have heard this one too many times. It grates on our nerves. (My son has Asperger syndrome.) When a child with special needs has a meltdown it’s in a totally different arena from a child with a temper tantrum. According to the Centers for Disease Control and Prevention, meltdowns can be caused by sensory overload, difficulty in expressing oneself, and other sources. A tantrum is an outburst of anger that often occurs when a child doesn’t get his way.
3. Why is he acting that way? He looks normal.
Yes. Some disabilities don’t have visible markings. Just because you can’t see it, doesn’t mean it doesn’t exist. Parents of children with special needs shouldn’t have to prove their children have a disability to strangers.
“If I’m feeling charitable, I give them a short explanation,” said one parent of a child with special needs. Another parent said she takes the time to educate others about her son’s disability.
4. Have you tried (fill in the blank)?
Strangers will recommend vitamin therapy and exercise. Tell us to avoid certain medicines or medical procedures. The amount of advice from non-professionals is unbelievable. Every parent wants the best for their child. That’s why we speak to specialists who know about our child’s special needs. We also talk to special education teachers and parents of children with special needs.
5. Be happy that your child isn’t talking.
I really did hear this one. My child didn’t talk until he was almost five. I was told to be happy because when he starts talking I won’t want him to. (Oh, the things strangers say!)
That’s followed by “how do you know what he wants?” When he was younger, he didn’t have words, but he communicated through actions. It’s a lot like when toddlers start to speak and only their moms can understand them. Just because he didn’t use words, didn’t mean he couldn’t communicate his wants or needs.
6. You’re amazing. I don’t know how you do it.
No, it’s not a compliment. All children have issues. “Telling a parent that they’re amazing reinforces that my kid is hard to handle,” Simons said.
7. Maybe your child will outgrow his disability.
This implies that there is something wrong with your child. Some high-functioning children will obviously manage their lives better than children with more severe disabilities. My kid will always be autistic.
8. What about his future?
Honestly, before my child was born, I envisioned him going to college. I’m not so sure. I’m also not sure if college is right for everyone. My brother spent a year at college and left to become a cabinet maker. He loves his job and is good at it.
Most parents worry about their child’s future. Sharing stories about adults with special needs who can’t manage on their own should be kept to yourself.
9. Don’t stare.
We’ve all been taught it’s not polite. It makes us and our kids comfortable.
10. Don’t question my child’s intelligence.
He may approach a problem differently. That doesn’t make him wrong or slow.
So what should you say to parents of special needs children? Ask us how we are and if we need any help. You can also inquire about our children’s accomplishments.
We’re proud of our kids and like talking about them.
For parents of children with special needs, Leigh Kolodny-Kraft, LCADC, CSAT-C, suggests that if you’re feeling generous, you can explain to strangers and family members who make off-handed comments that your child is not neurotypical, broken, or damaged. “They’re neurodiverse and live in the world with differences that need to be respected.
