December 15, 2007 8:53 AM
Parenting Q & A: how to treat people with special needs
Barbara,
I love reading what you write about your kids and I've learned a lot about Down syndrome through your blog, and about valuing all sorts of people. But, when I was talking to my husband recently, we agreed that we really didn't know how to act around people who are obviously "different" in whatever way. Our public school educations addressed how to deal with "the special ed kids" in negative ways -- don't tease them, don't pick on them, don't be mean -- which begs the question, what should we do? It is the lack of an answer to this question, I think, that makes me feel uncomfortable around people obviously different from "normal" -- and I don't want to feel uncomfortable like that. So I pose the question to you, the parent and therefore the expert:
As the mother of kids with Down syndrome, how do you wish people responded to you and your sons, in public and in private? How would you want a stranger to respond to her children's questions about whatever differences they might observe?
You have my complete permission to publish this question and your answer on your blog. In fact, I hope you will; I'm sure I'm not the only one who struggles with this one.
And BTW, thanks for visiting in October! I enjoyed our time together, short as it was. My kids still remember you, and DJ has told me that she wants me to have 12 kids!
Thanks!
Newt
Hi Newt!
[for a picture of me in Chicago-land visiting Newt and her adorable kids, scroll down here]
This is a great question and I'm looking forward to hearing from a lot of readers - I hope those of you on message boards might post this so we get a wide range of responses.
The tricky thing is that parents are as individual as kids in what they prefer in this area - and a lot is based on personality, privacy issues, all kinds of things I don't pretend to understand.
I personally have always felt very proud of my sons having Down syndrome (for those new here, 4 of my 12 kids have Down syndrome because after our own, we adopted three more). When Jonny was born my response was of feeling very fortunate because I knew that through him God would greatly enhance our lives even as we would enhance his. It just seemed a perfect fit.
Because in our culture people usually grieve at this period, and because I somehow realized it was up to me to cue people how I felt - that I didn't want their pity, but wanted them to rejoice with us - I wrote a note to accompany his birth announcements explaining how I felt. My women friends had a shower for me and the most wonderful thing was seeing everyone holding him and cooing over him just as they had all my other babies.
My friend Sandy said something I'll never forget (you have to say this with the thickest Southern drawl): "We-ell Barbara, he'll never grow up to be President, but isn't that just as well?" I still laugh at her feeling comfortable enough to be humorous - to acknowledge his limitations and bless him for who he was.
When people would comment on him as a baby (because the features aren't as evident to those unfamiliar in those early months) they would generally guess the wrong age, and I would say, "Oh, he's a little small because he has Down syndrome and they tend to grow a little more slowly." I wanted to start conversations. I wanted to get people thinking. I wanted them to see that babies with Down syndrome were nothing to be afraid of.
But that's me.
I've met moms who would be greatly offended if you asked them point blank if their child had Down syndrome. Personally, I can't understand that, but I'm an educator by nature and I respect that other people don't share that characteristic. I feel the same hesitancy others feel when I see a mom with a kid with Down syndrome. On the one hand, because I feel like we are members of the same club I want to give her a hug and talk. On the other hand, I don't want to offend her.
As far as meeting older kids and adults - I think the point you made about the negative teaching - all the things you aren't supposed to do - is true. And that may even make the uncomfortable feelings worse. Harder to be natural when you've grown up in a system where you have to scrutinize your every word, every feeling. I'm old enough that kids with special needs weren't even in school when I was - they were institutionalized and so I never knew anyone with special needs.
And I must confess - as I think most parents of kids with special needs would have to confess - that until Jonny was born I was in the same boat as everyone else - feeling awkward or just avoiding eye contact. Which is why I can't understand parents who get riled up and don't have compassion when someone says or does the wrong thing. There but for the grace of God. . . .
Anyway, because we have our Downzers (our affectionate non-pc name for that group within our large family - see Why I call them the Downzers) involved in lots of activities - Special Olympics basketball, Challenger Little League, Very Special Arts (See The busy lives of my guys with Down syndrome) - I now meet people of all ages with disabilities. Do I feel entirely comfortable? No. Sometimes I don't understand their speech and have to ask them to repeat and I feel awful. Sometimes when it looks like someone needs help I'm not sure whether they might be offended if I offer.
To tell you the truth, when I am around a population of people with disabilities, I become very aware of my own disabilities ïŠ
The greatest hope for the future I see is in the kids my sons go to school with. Jonny and Justin – and hopefully very soon, Daniel – spend most of their day with typical peers. In spending 12 years together, these kids build bridges that we can barely comprehend. Which is why things like homecoming queens (and kings) with Down syndrome are a heartwarming and frequent occurrence in the United States. It is this daily exposure which helps establish a strong social network which makes the difference in the future of these individuals as productive members of our society. I fully expect my sons to have jobs tailored to their needs when they grow up. They are good learners, they love to serve, and they help others feel good about their work.
So my suggestion is when you meet someone with a disability, smile and say hi. If there is someone who works in your grocery store, begin to build a relationship. If there is a child in your church, offer to baby-sit.
I would really like to urge anyone who cares about this – especially homeschooling/private school families whose kids lack the exposure of public school kids – to find ways to get your own family involved with the disability community. There are many places to volunteer – Special Olympics, Parks and Recreation, Easter Seals, Very Special Arts.
I think of the head coach of the Special Olympics basketball team where my sons are this very minute practicing. His name is Dan Dillon and he has been coaching for over 20 years, with his family involved – one of the most incredibly disciplined and organized and effective coaches I’ve ever met, though his work is completely volunteer.
When I met him, I asked him if he had grown up with a sibling with a disability. It’s often that kind of background that makes people aware of the need to serve. But he said no, his parents had taught their children from the get-go the importance of community service. This is an issue which anyone who’s read Reaching the Left from the Right would know I’m very concerned with – getting people out of their churches and into their communities to be salt and light in a world full of needs.
How thrilled I was – not to mention my boys – to see Coach Dillon at church and even to meet his parents who were visiting last Sunday. I felt like giving them the biggest hug. They had truly taught their children that our faith wasn’t just about reading the Bible and going to church, but about serving “the least of these.â€
Well, I’ve really gone off on a tangent, haven’t I? All you wanted to know was how to act around people who are a little – or sometimes a lot! – different. I guess all I can say is to be yourself, share yourself, and take an interest in them. Watch how your children respond because they will probably be less inclined to see the differences.
And perhaps consider, especially as your children get older - Lord knows with three children under five you’re not in a position to do much now! – some sort of family involvement which will allow you to rub elbows with people of different ability levels.
While on the outside it will appear that you are sacrificing to help those in need, I’ve found that spiritually, it is truly the other way around.
~~~~~~~~~~~~~~~~~~~~~~
Newt,
I had no idea I'd be writing such a lengthy response - and way beyond what you were asking for. Sometimes I have a hard time keeping it simple :)
But I hope readers will chime in here with more suggestions and advice. That's often the best part of what goes on here.
Posted in Disabilities, Down syndrome, Inclusion | Permalink
Comments
I have two boys, Ian is 25 months and Eric is 7 months old. Eric happens to have Down sydrome.
Right now, no one can really tell that Eric has DS unless they already know. I have the odd person when we are out in public say "He's so tiny for 7 months" or "His eyes are so cute" in which case I can tell that they *think* something about him is different but do not want to come right out and ask. I usually will say "Oh, yes, he has DS" but I do not bring it up myself. Most people just say "He's SO cute!"
I guess I'm not sure yet what to expect from others around Eric. I am hoping they will treat him the same (or close to it) as my son Ian.
I know I have some family members that will NOT talk about anything other than DS when we are around! That is frustrating. I was at my cousin's house for her daughter's 2nd birthday party the other day, and all they keep talking about was DS. My uncle even went as far to ask me if I had found out about the DS earlier (I was 23 weeks when I knew) if I would of had an abortion!! Not appropriate at all! I guess I just wish sometimes they saw Eric (a cute wonderful 7 month old baby), not just his disability.
Felecia :)
Posted by: Felecia | December 15, 2007 11:11 AM
Years ago, my son was involved in an organized sport and summer camp. On the one hand it was a positive experience, he's a big sports nut, on the other hand, it was the first time he was excluded from the larger part of the group during snack, rest and free time. The kids weren't intentionally rude, I think they were uncomfortable so they ignored. A boy about my son's age must have noticed what was going on, because from that first day he would call out to my son to sit next to him, talked to him, not at him, was patient with my son's speech, just generally was a good pal. If my son didn't understand something he would explain it to him, but in a boy to boy way. He taught my son a complicated high-five and handshake greeting! I think that friendship was the highlight of my son's camp experience. I told the young man's grandmother what I had observed, and how grateful I was for her grandson's compassion and understanding. She smiled and told me her son, the boy's uncle, was also mentally retarded. Her grandson was close to his uncle, accompanying him on shopping trips, reading books to him,helped him get dressed, etc.
The funny thing was that this boy had been labeled a troublemaker. He had been in and out of trouble in school, dad was out of the picture, mom worked long hours, and he was being raised mostly by grandma and uncle. His clothes were clean but worn, he usually needed a haircut, and he would rather settle an argument with a fist fight than words. But that young man showed more grace and kindness to my son than all of the other kids, who materially had so much more going for them. We lost touch, but I still remember him, after all these years.
He was a good kid, who treated my son like just another good kid.
Posted by: aine | December 15, 2007 11:25 AM
Gosh Aine, that story made my heart hurt it was so touching. To raise a child with that kind of compassion is my biggest goal...forget phonics!!
We have a lady in our church who is in a wheelchair. She has muscular problems so her hands and legs are drawn up and it's difficult to understand her speech. My 4 year old son was, of course, fascinated by the wheelchair. He asked me about it so I said "Let's go talk to her." So I had him ask her and she and her companion answered his questions. Is that the right thing to do? I don't know but I don't want him to be afraid or uncomfortable to ask questions. And I want him to understand that everyone is different and we're not perfect. We talk about our own imperfections in a way that emphasizes our uniqueness not our weakness. I want him to realize that applies to everyone including those with disabilities. I don't know that I would have ever made that connection without reading this blog. Thanks again Barbara! That's like lesson 250 learned from your websites and books.
Posted by: Alison | December 15, 2007 12:00 PM
Thanks for your prompt and lengthy response, Barbara! I appreciate it. And I hope we get plenty more comments. :)
Felecia, I understand the inappropriateness of your uncle's response. Sadly, in today's culture, the idea of choice and reproductive control is so prevalent that I think we're going to run into ideas like that everywhere. I don't want to go into the full story here, but suffice to say, I have also had the experience of being in a situation where conventional wisdom would have resulted in my having one less child than I do now. Holding to my pro-life convictions in the face of hardship has turned out to be one of the strongest testimonies I could give to my non-Christian friends; it may well be that you will have some similar opportunities.
I'm looking forward to learning from more comments!
Newt
Posted by: Newt Sherwin | December 15, 2007 1:49 PM
well, i have discussed this and my own experiences before. for our family and our son i guess the way we hope and pray that daniel is treated is warmly and positively as we should treat everyone we encounter. we are all different, differently abled and special. i can't imagine this world God has created being better because of the uniqueness of us all. like barbara and many other moms of children with special needs, i have learned so much from my child: bravery, strength, determination, faith, love and acceptance. people who are differently abled want pretty much the same as we "normal" folks: acceptance and respect. perhaps if we follow Christ's greatest command we will discover how easy it is for us to know what to do or say when around people with special needs. this i have learned from my son and children (and their families) like him.
Posted by: laura | December 15, 2007 3:33 PM
Barbara--
an interesting article re: children with disabilities mainstreamed into public school classrooms.
http://online.wsj.com/article/SB119610348432004184.html?mod=todays_us_nonsub_page_one
Posted by: Emily | December 15, 2007 4:07 PM
Hi Barbara! I read this post with interest. I have 2 children with a genetic disease that is NOT downs, but due to craniofacial issues, they have faces just like those with Downs (the epicanthial fold on the eyes, if anyone is curious of the name)
We have gotten asked ALOT of we have 2 kids with Downs. I usually respond we do not, and people get very puzzled, because all outer appearances tell otherwise. Sometimes, depending on my mood and time at that particular time, I will explain, and other times I will not.
It hurt me at first, I don't know why. But then I realize people were just curious and wanted to ask questions and try to bond with you. Most people anyway. Some people are just nosy and feel privy to other people's medical info, even if they're strangers...that used to really bother me.
I've learned to let it go. I've also learned how many people with "different" (I hate the word disabled) children feel. I've tried to be more sensitive and teach my children to be sensitive as well.
Just thought I'd throw that in.
Posted by: Lindsey @ ETJ | December 15, 2007 5:47 PM
I tend to go gaga for babies and toddlers anyway, but occasionally I will end up with an uncomfortable situation. Like when I get the feeling the parents think I'm gawking because the kid has a visbile disability when I'm really just gawking at the cute baby the way I gawk at any cute baby.
I was at a museum once and the most adorable little girl was there, about 18 months old, with four prosthetic limbs. She was active and having a lot of fun and I crouched down and chatted with her and treated her as I would any other toddler, but her parents were giving me hard looks like, "Sideshow's over!" I smiled at them and said, "She's just so adorable! I love the bonnet!" (They'd bought a bonnet at the gift shop and put it on her. And it was cute.) I didn't want to stop attending to the girl because I was just enjoying her so much, but I really didn't know how to deal with the parents.
Later she fell down, as all toddlers will, and she picked herself right back up and looked like she was deciding whether to cry or not, as all toddlers will, and I said, "Did the ground up up and hit you?" just like I would to any other toddler. Her dad gave me a suspicious look and picked her up and walked away.
Maybe I should have said something about how she gets around really well or something, but really the most remarkable thing to me about her was her cuteness. Which is what I commented on.
Another time I was in a store and a mom was cuddling her blanket wrapped baby and I went through the usual greet the mom and baby routine and the mom let me see the baby and she had a large cleft lip. I was a bit startled but I talked to the baby the same as I would to any other baby, things like, "Hi there, sweetie! Welcome to the outside. How do you like it so far?" and commented on how alert she was, asked how old she was etc like for any other baby. The mom seemed really uncomfortable which made me unc so I moved on.
Posted by: Christina | December 15, 2007 7:33 PM
