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.
danyele @ a thorn among roses says
i am madly in love with this post!!! i have 4 girlies, 2 of them have some special needs. i love what you said…how much you’ve grown in the past years. i understand what you mean there! i am so glad i came over via twitter. adding you to my blogroll for sure!
.-= danyele @ a thorn among roses´s last blog ..not me monday =-.
admin says
Thank you Danyele! You’re on my blogroll too. It’s certainly been a journey and I would not now trade for the world…there was a time I would have. Isn’t it nice to grow up?
danyele @ a thorn among roses says
i am madly in love with this post!!! i have 4 girlies, 2 of them have some special needs. i love what you said…how much you’ve grown in the past years. i understand what you mean there! i am so glad i came over via twitter. adding you to my blogroll for sure!
.-= danyele @ a thorn among roses´s last blog ..not me monday =-.
admin says
Thank you Danyele! You’re on my blogroll too. It’s certainly been a journey and I would not now trade for the world…there was a time I would have. Isn’t it nice to grow up?
admin says
Thank you Sara! Wish I had time to teach those people, but it was mid-service, so not a chance, lol!
admin says
Thank you Sara! Wish I had time to teach those people, but it was mid-service, so not a chance, lol!
admin says
Thank you, and how awesome that you blogged about me!! I appreciate your support!
admin says
Thank you, and how awesome that you blogged about me!! I appreciate your support!
Angela Bailey says
I’m glad you posted this. It’s nice to know how to address a parent with children with special needs and that they don’t feel they have been given a bad hand and we should not feel this way for them either. I had an uncle who was classifed as “mentally retarded” and I hated that phrase. He didn’t have Down’s or autism so this is what class he fell under. However, he lived on his own with minimal help to make sure he took his medication properly, cooked for himself, cleaned for himself (although he wasn’t a very good housekeeper by choice, lol), rode a bicycle, and cut grass and bushes and shoveled snow to make extra money. He was known throughout town and loved by many. Sure, he couldn’t read and couldn’t write words but he knew his letters and he had street smarts. He recently passed away this year and you wouldn’t believe the people who paid their respect to him.
admin says
Hi Angela, you’re welcome! I hate that phrase too – a lot of people do and there’s a movement to eliminate it. I think it comes down to what people’s standards are of a valuable life. For example, I’ve heard beautiful stories of people who have had Trisomy 18 – most do not survive to one year. For me, I could not keep a baby like that, I think it would be too much suffering. But I don’t see suffering when I look at people with Down syndrome. Frankly, I see so much JOY. Your uncle may not have the standard that we’ve come to expect from someone we claim is “successful”, but that in no way does not mean he didn’t have a rich, contented, full life and from your description of his funeral, he enriched others as well. That’s a standard I can accept for any child. I’m sorry for your loss, Angela.
Angela Bailey says
I’m glad you posted this. It’s nice to know how to address a parent with children with special needs and that they don’t feel they have been given a bad hand and we should not feel this way for them either. I had an uncle who was classifed as “mentally retarded” and I hated that phrase. He didn’t have Down’s or autism so this is what class he fell under. However, he lived on his own with minimal help to make sure he took his medication properly, cooked for himself, cleaned for himself (although he wasn’t a very good housekeeper by choice, lol), rode a bicycle, and cut grass and bushes and shoveled snow to make extra money. He was known throughout town and loved by many. Sure, he couldn’t read and couldn’t write words but he knew his letters and he had street smarts. He recently passed away this year and you wouldn’t believe the people who paid their respect to him.
admin says
Hi Angela, you’re welcome! I hate that phrase too – a lot of people do and there’s a movement to eliminate it. I think it comes down to what people’s standards are of a valuable life. For example, I’ve heard beautiful stories of people who have had Trisomy 18 – most do not survive to one year. For me, I could not keep a baby like that, I think it would be too much suffering. But I don’t see suffering when I look at people with Down syndrome. Frankly, I see so much JOY. Your uncle may not have the standard that we’ve come to expect from someone we claim is “successful”, but that in no way does not mean he didn’t have a rich, contented, full life and from your description of his funeral, he enriched others as well. That’s a standard I can accept for any child. I’m sorry for your loss, Angela.
Jayewalking says
Thanks for this great post!
admin says
You’re welcome!
admin says
You’re welcome!
Nina Tidwell says
THANK YOU! This article will greatly help as we share with our volunteers who will be helping in our up and coming ministry to Families and their Children with special needs. I will definitely continue to read your articles…so helpful!
Pastor Nina Tidwell
Ponce Church
Ponce Inlet, Florida
poncechurch.com
admin says
Thanks Nina! Feel free to share, any time I can help 🙂 Saw your message on FB, will get back to you later, gotta run. Have a blessed day!
Nina Tidwell says
THANK YOU! This article will greatly help as we share with our volunteers who will be helping in our up and coming ministry to Families and their Children with special needs. I will definitely continue to read your articles…so helpful!
Pastor Nina Tidwell
Ponce Church
Ponce Inlet, Florida
poncechurch.com
admin says
Thanks Nina! Feel free to share, any time I can help 🙂 Saw your message on FB, will get back to you later, gotta run. Have a blessed day!
Patti says
Thanks so much for posting this. I have a 28 year old special needs guy with severe scoliosis, cerebral palsy and epilepsy. He’s in a wheelchair. He is beautiful and he means the world to me. I was out walking with him and a little boy who was out riding his bike stopped and said to me “I’m sure glad I’m not like him!” Maybe I shouldn’t have, but I said right back “He’s probably glad he’s not like you, either.” I don’t know if he heard me. He may have already started riding away. That is the only truly awful reaction to my son I’ve gotten. People usually warm up to Derek right away. He is a handsome young man. I also have a 20 year old who isn’t special needs. I love both my kids, special needs or not.
admin says
Patti, kids say what they think and feel, which is more often then not, a reflection of what they’ve been taught by those around him. Who knows? Maybe his parents were not necessarily negative, but have taught to thank God that he’s typical or not disabled or what have you. Before I had special needs kids, I felt uncomfortable around disabled people. My parents are good, loving, decent Christian people, but they were from a time when disabilities were not even discussed and special needs people were viewed with pity.
I personally believe that is only the special needs community that can change this – and possibly teachers, aides, advocates, and health care professionals who can change this. Look at all the commotion we’ve caused about the “r” word, and how it’s honestly being eliminated. But it won’t be gone forever until we embrace special needs people and kids as just differently abled as a SOCIETY, starting with preschool (don’t even ask where I stand on THAT ugly battlefield!).
And FWIW, your response was funny, I’m betting it hit home with that child. Peace to you and your family, Patti!
Patti says
Thanks so much for posting this. I have a 28 year old special needs guy with severe scoliosis, cerebral palsy and epilepsy. He’s in a wheelchair. He is beautiful and he means the world to me. I was out walking with him and a little boy who was out riding his bike stopped and said to me “I’m sure glad I’m not like him!” Maybe I shouldn’t have, but I said right back “He’s probably glad he’s not like you, either.” I don’t know if he heard me. He may have already started riding away. That is the only truly awful reaction to my son I’ve gotten. People usually warm up to Derek right away. He is a handsome young man. I also have a 20 year old who isn’t special needs. I love both my kids, special needs or not.
admin says
Patti, kids say what they think and feel, which is more often then not, a reflection of what they’ve been taught by those around him. Who knows? Maybe his parents were not necessarily negative, but have taught to thank God that he’s typical or not disabled or what have you. Before I had special needs kids, I felt uncomfortable around disabled people. My parents are good, loving, decent Christian people, but they were from a time when disabilities were not even discussed and special needs people were viewed with pity.
I personally believe that is only the special needs community that can change this – and possibly teachers, aides, advocates, and health care professionals who can change this. Look at all the commotion we’ve caused about the “r” word, and how it’s honestly being eliminated. But it won’t be gone forever until we embrace special needs people and kids as just differently abled as a SOCIETY, starting with preschool (don’t even ask where I stand on THAT ugly battlefield!).
And FWIW, your response was funny, I’m betting it hit home with that child. Peace to you and your family, Patti!
Marci says
It is horrifying the things people say. I love this post because it’s important for parents to know they are not in this alone. Going to share with my twins club.
Gina says
Thank you Marci! I appreciate you sharing this, hope I didn’t come off too harsh.