I remember the day like it was yesterday. Amelia was 3 years old and I had to pick her up from special needs preschool with my car. I saw another mom there and asked her where to wait. After assuring me I was in the right place, she mentioned she was picking up her kid too and then she started talking really fast. “But there’s nothing wrong with him! He just has a speech delay.”
Inside, my blood boiled. I resisted the urge to retort, “There’s nothing wrong my daughter either, she just has Down syndrome.” I was so angry, I just nodded and avoided her during my wait. I greeted that experienced with pure anger but today, I feel like this is an opportunity to teach others how to act in this uncomfortable (for them) situation.
Here are 6 things you should never to say to the parent of a child with special needs:
1. “What’s wrong with him?”
Sort of the flip side of what the mom at the preschool said, this is often asked with a smile that says, “I’m just asking to know how to treat him,” but there may a motive of unhealthy curiosity here. Never say this, NOR any variation of this statement, such as, “Is he OKAY??” (when “okay” is shouted) “Does he always do that?” “How you handle his, his..ya know.” And yes, I have heard them all. If you want to know how to treat a child with special needs, I can sum it up in one word: RESPECT. Realize that the negative reaction you’re seeing may not be something he can control in any manner, or that the things you don’t understand about him are none of your business. The same is true of how I raise my children with special needs: what my husband and I do as parents works for our family and is not your business. Instead, turn around your curiosity and be friendly, kind and, if you see us on vacation, maybe offer to buy us a drink, ok? (Nothing better than a pina colada by the pool, even if it’s virgin!)
2. “I’m sorry” (for your child)
Five years ago, I checked out a new church. A couple asked about my childrens’ special needs so I shared with them. In response, the couple said they were “sorry.” I was caught off guard – what was there to be sorry about? They seemed mature, well-educated and very Christian and yet they reacted as if I’d “lost” my children. I have’t “lost” anything, although, perhaps my expectations of parenthood had changed. Honestly? I don’t know any parent that can’t say that. And yea, perhaps I was stressed out when I met those people. Five years ago, bringing a 7 and 4 year old with special needs to church IN THE MORNING after DATE NIGHT was a hair raising experience so perhaps I was a little too honest. That said, “I’m sorry” is STILL not the right reaction. Church goer, take a moment or two to consider how Jesus would respond.
3. “She’s a bad parent.”
My husband overheard this said of me in a restaurant once when my daughter was making noise – joyful noises, actually, and in a loud restaurant too. They were sounds that you would associate with a child with an intellectual disability and yes, she still makes those happy noises. I haven’t bothered to tell her it’s “wrong” – and I won’t be doing that any time soon! Even if my child is loud, interrupting, upset or whatever, that is no illustration of my parenting. This is her disability – and guess what? they knew it, you know, we all know it. This response is prompted by their “discomfort” from being around a person with a disability. Everyone is aware of autism and other disabilities that cause children to act inappropriately at times. But guess what? They are still children and they are still learning appropriate behavior. For some kids with special needs, this takes a long, long time; others won’t learn it at all. Try a little compassion and learn to grow up and get over your discomfort; it will serve you well in life to treat other kindly.
4. “Oh she’s so sweet!”
I’m going to tell you right now that this is a common condescension towards kids and people with Down syndrome. People have used it on Zoe too, but it’s more common with Amelia. “Isn’t she sweet” often means this: “Oh my gosh, I’m so sorry she has Down syndrome, but aren’t they just the sweetest kids and that’s something good about it, right?” GAG. She can be sweet. She can also be fierce, tough, laid back, determined, affectionate, overly athletic, strong, resistant, stubborn, angry and man, she has a mean streak! Like ANY OTHER KID, she has a range of emotions, like ANY OTHER KID, she gets all, “AWWWW” when she sees babies and puppies and owlets, like ANY OTHER KID she can be a handful that turns my hair gray when she wants. “Sweet” is only one of a host of adjectives that describe my child, so start looking at my whole child and not just a stereotype.
5. “How does she communicate?”
Kids without speech are frequently talked about as if they are not in the room and it’s annoying as all get out. Now, I’m going to confess: sometimes hubby and I talk about the kids around the kids, but it’s not one kid or the other, it’s the kids. It’s a terrible failing and I’m calling myself out – but there it is. Part of the reason is that there is very little time that we are NOT around the kids. (Hello, babysitters, we need you!) Even so, it bothers the snot out of me when people specifically point (yes, actually using their finger) at my child and say, “How does she communicate?” It hasn’t happened in a while, so perhaps the next time, Zoe will come up to the offending party and smack them. (She’s done it to me, with this little mischievous grin, a light tap, that says, “I’m ON TO YOU.”) She communicates just fine, don’t ask for a demonstration or you might get one you wouldn’t like.
6. “They are such a blessing.”
This is also kind of condescending, notice the way “they” is used to reference a specific group. It’s one of those things that sounds good coming out of your mouth, but what you may mean is, “Kids are blessings, but special needs kids, well, they are all kinds of extra work and difficulties and God blessed you and, thank God, not me!” The fact is all children are blessings. All children are challenges. All of them teach you as much as they learn from you, and all children make you smile, break your heart, make you pull your hair out and make you puff up with pride. It’s the nature of a child that you love to do this to you. My kids are as a much a blessing to me as any other child is to any other loving parent. I love them as unconditionally as you love yours. Period, end of story.
I could make this list much longer, but I think you get the gist. In short, treat us like you would any other parents. If you have questions, you can ask them but do it respectfully and not as if my kids are objects that can’t hear or understand. And don’t ask just for curiosity sake – ask to really learn. I welcome the opportunity to teach other parents how they can support parents like us or just be a friend for the parents of special needs children around them. And one bonus tip? If your kid sees my kid and asks why they do or don’t do this or that, don’t hush them up. We can answer that question just fine and hopefully your child will learn something good and maybe even make a friend. I DO happen to have kids who make friends fast – and keep them.
For additional reading, check out “What to Say When Your Friend’s Baby has Down Syndrome“, should you come across this situation for a new baby.
This blog was originally posted in 2010.