Stumper: How to speak to other kids about your special needs kid
by admin on July 17, 2009
in autism spectrum disorder, down syndrome, learning disabilities, mosaic down syndrome, special needs
Last week, on vacation, some children around Amelia’s age had a whole host of questions about her. As usual, I was stumped on how to answer, and I thought I’d share some of my thoughts and see from you, dear readers, what you would do.
Amelia is small for her age but, as usual, kids always ask her age first, as if they can’t place it. That’s probably true. I told them the truth: she’s 6. They were completely confused by that, and then the barrage of questions started:
“Why does she still wear a diaper?”
“Why doesn’t she talk?”
“If she does talk, why won’t she answer me?”
And many more on this line. My first thought came right out of my mouth: “Amelia is special.”
Ewwwww. I hate that I even said that. Of course, I don’t mind saying my kids have “special needs” and, of course, they are special to me, but this concept that somehow having a disability makes her special in some way is not quite right to me. Then, I tried another tack: “She has a disability.”
Ok, yea, like a 6 year old is gonna understand that.
“That means she can’t do everything as soon as other kids her age, and so she’s not potty trained yet.”
Yikes. They looked at me as if I was discussing chaos theory or something.
I looked over at the mom, who was smiling at me sheepishly. At first I was upset, but then I thought: if I were in her shoes and didn’t know any special needs kids, wouldn’t I do the same thing? It wasn’t her fault. It’s not as if moms can answer every single question that might possibly pop into their kid’s brains. I smiled back. Kudos for her that she had children with curious minds and the courage to ask questions.
And shame on me for feeling, well, embarrassed. Not by Amelia, exactly, but by my inability to know what to say or how to act. For feeling like somehow this was all my fault.
And as long as we’re on the subject, I managed to squeak out a whole lot of “damn, I hate Holland” feelings this week. Maybe it’s seeing how far behind Amelia is in school, or that Zoe got a “has no concept of” report this week from her OT. This is not what I bargained for and, criminy, it was a bloody awful, horrible, difficult week. There I was in bed last night, crying my eyes out, because this is not what it was supposed to be. I wanted to really enjoy my kids school experience, and help them with it, and introduce them to culture, faith, politics. But at age 6, Amelia has not even once asked the question “why?”.
Not once.
Ok, got off on a tangent there. This will pass, too. Amelia and Zoe are beautiful and fantastic. They are still full of wonder and joy and even at 6 and a half, Amelia has not lost a bit of her innocence. (We don’t need no stinkin’ Hannah Montana!)
Still, this is the second time a child has asked me about my child and I’m clueless on what to say. If you have ideas, tips, suggestions, or any advice, or if you’re a parent of a typically developing child and have some perspective, please comment. I could use the help! peace out, g
Yeah, I just don’t know either. Adults, I have no problem with. Kids, different story. I just say “she hasn’t learned yet, it takes her longer to learn things” or something. When Kayla goes into her happy stimming mode, I just say she’s playing or dancing.
Ecki’s last blog post..SHE’S IN!!!
It’s wonderful that you shared this scenario here! Thankyou.
REMEMBER – not every question needs an answer. You get to pick and choose what you share. Just because you landed in Holland doesn’t mean you have to be tour guide.
This is actually a question about teaching a child how to interact (or socialize) with your child. Kids ask questions when they are unfamiliar with something. Just because a child asks a question, doesn’t mean you have to answer it, you have the right to set personal boundaries for Ameilia, she has her dignity too of course
and yourself. I’m thinking back to all those questions I wish my own kids hadn’t asked people in public.
First determine the boundary you want or need to set with the child asking the question (or in some cases the adult that may ask). Decide which question you want to answer for them. You have that right. Then, give the child just the information they need to apease their curiousity at the moment and move on to the more important point of being a friend with Ameilia.
For example, I picture a conversation going something like this:
“Why does she still wear a diaper?” – Perhaps your mom can answer that question for you later (using a nice tone of course and especially if mom was standing right there) or… I’d rather not answer that right now (and then redirect the conversation).
“Why doesn’t she talk?” – Not everyone does things the same way. Amelia talks by … (fill in with how she’s expressing herself that day ).
“If she does talk, why won’t she answer me?” – She’d like to answer you, but the words haven’t made it out yet. I know what she’d like to say though… (then fill in appropriately).
You have a beautiful family!
Carrie Jean
I really want to thank you for answering this question, so honestly and so clearly!! I like what you said about being the “tour guide”. You have a good point there.
What great ways to approach a response. My biggest conflict is answering in a way that distances Amelia further (which I think I’ve unwittingly done) rather than demonstrating my view (which is, we are all “different”, no such thing as “normal”). I didn’t even realize that I was struggling with that issue until you verbalized for me. Thanks for being so sharp on picking up my distress!
Thank you for the compliment, Carrie Jean! I hope you visit more often.
Thank you… I felt alone on this. Sometimes its very hard not knowing what or how much I should say.
Hey, Trina, thanks for commenting. I know exactly how you feel!
I majored in special ed, after being profoundly affected from spending a day with a sweet 3 yr old girl named Molly who had spina bifida. I have been drawn to children with disabilities my whole life, and God blessed me with a daughter with Aspergers after I unknowingly married an aspie!! I enjoy interacting with parents and children about disability, but because it is something I am passionate about. If a young girl has a cool new-fangled-looking hot pink wheelchair, I might point it out to my kids, and ask her mom where they got it, so I can keep the info to pass on. If my kids ask me about children with obvious disabilities, I tell them that God makes people in all sorts of different ways. Grace has aspergers and sensory issues and some learning differences, and she has friends with learning differences, seizure disorders, autism, cerebral palsy.. she knows that there are all kinds of people in the world. She is 9, and my second oldest is 6, and they have a better understanding of that than my younger two.
If faced with kids questions, I might tell them just what you did.. that it takes her longer to learn things like how to talk and how to use the potty. It takes some people to read, to learn to cross the monkey bars, or ride a bike. I dont think it distances Amelia for you to tell them those things. I love what Carrie Jean says about telling children how she communicates.
When Grace has public meltdowns, her friends ask me whats going on. I tell them that she is overstimulated, that she has a hard time calming herself down, and that she needs some time to pull herself together. Mostly I need to give her my full attention to talk her down out of her meltdown. It is confusing to her friends, because she seems “normal” to them the rest of the time. They comment on her limited food preferences, and Ive told them about her texture issues with food, that it feels creepy in her mouth even if it tastes good. I feel the same way about beans that Grace feels about meat.
I might come back and talk more, and have my husband comment too. Because my child has a mild form of Aspergers, it is not something I have to deal with a LOT, but I have talked to my own children about differences and disabilities, and asked the other child’s mom questions so that my children can hear the answers, too. Thank you for sharing your heart with us, and I hope that through some good dialogue here, we can all learn how best to help our children understand that there really is no NORMAL and that we are all unique in ourselves, and that talking about it and asking about is ok to help understanding!!!
Hi Frelle, thank you so much for commenting! Please accept my apologies for the delay in approving: for some reason, my spam filter snagged your comment, even though it’s tagged from my blog (grr!)
Thanks for the great advice. Guess I’m spoiled since I’ve never had to answer kid questions! (Not yet, anyway.) And thank you for sharing your story. A lot of people say my kids are “high functioning” and to tell you the truth, I’m wondering what that even means. I feel like every one has a different place on the spectrum where they put that term.
I’m now at this point where I don’t want to make a big deal of their disabilities. Not that I want to deny them, just that I want to fold them into being kids as much as all the other kids. Know what I mean? To that end, I’m even ok with the potty training, but I – like every other parent in the world – question if I’m doing enough. I have no idea, to be frank, just doing the best I can. And some days, that means less than for other moms, even those without disabled kids.
Talking to others about my kids is important to me, though, because the more we special needs parents (and people) talk, the more we level the world for special needs people in general. And that is my truest goal.
Welcome to mom-blog, Frelle! I do hope you and your husband visit more.
Great blog entry. I feel your pain. My son is four, so the gap between him and his peers isn’t that large yet. I can still get away with saying “he’s younger”, which technically is a true explanation to the curious kids that ask.
Crystal’s last blog post..Where Am I?
Hi Crystal. I didn’t even know this till recently but with Down syndrome, the peer gap tends to grow as they do. Not sure about autism. Hm, yes, I’ve done the “she’s younger”, but I’m also passionate about opening up people’s (and kid’s) experiences with disabled peopled & kids, so I try not to do that as much.
Where are these curious kids’ PARENTS? Really, they should be the ones embarrassed that their kids are being, well, kinda rude.
Well, that was my initial response, but sitting over there, I saw a mom who was clueless and embarrassed. Personally, I’m for putting an END to the mommy wars, and that starts with me. Maybe she learned something. I sure hope so. Maybe I should have spoken out louder and clearer. I will next time. We’re all doing the best we can, well, most of us any way.
I do not have a special needs child, but I am a parent of a 4 year old, who is naturally curious and very social. He has asked questions about friends and kids and adults who he meets or sees at school, church or in the park. He asks questions to gain understanding and also because he wants to find a way to relate to/play with the children.
I don’t know a “right” way to explain, but I usually tell him that everyone has different challenges. To help him understand, we talk about how there are things he does well and things that he finds more difficult or challenging. And a task or activity that is a challenge to my son (like learning to ride his bike or getting his face wet in the pool so that he can learn to swim) may come more easily for friends of his. I then explain as simply as possible the challenges of the person he has asked about. When the child is one I know, I also talk to my son about the things that child can do or likes to play – particularly those activities my son likes to do or can do with that child – to help my son find common ground. I also try to help him identify ways to be sensitive to the other child – giving them space if they are frustrated, showing patience to give them extra time to learn or leniency if the other child is not following all of the rules of a game. I give examples of when we give my son the same courtesy so that he can learn as well.
It is a goal of mine, as a parent, to help my children develop empathy and understanding. I know that sometimes “teaching moments” arise in awkward and even sometimes embarrassing ways. I do want to teach my sons appropriate times and ways to ask questions, but I also want to take advantage of real life moments to help them become caring individuals. I appreciate you raising this topic – as is evident from your post and the comments received – this is a situation that even adults find themselves unsure in handling, so I think it takes understanding on all sides. We have so much to learn from other moms – and from our kids – and giving each other the room and grace to learn and make mistakes is so important.
Hi and welcome to mom blog! Thanks for sharing your comments. I love the approach you are taking, kudos to you! Isn’t it weird we find these situation so uncomfortable as adults? What a shame, it makes it easier to lose the teachability of the moment.
I really like your blog (i think your link was wrong). It’s this, right?
http://spiritualmartini.wordpress.com
Hi. I was reading everyone’s comments and was warmed by the thought of not being alone. I have a four year old son who has had test after test, blood, chromosomes, an MRI, everything and everything’s coming up normal, which is great. But he doesn’t speak. I would love a diagnosis so I have somewhere to start but as he gets older and people become more rude about staring at him when he shouts and screams, it’s becoming more difficult. His traits are as follows, non verbal, but says about four words very well (mama, dada, car, truck) the rest we are learning in signlanguage. He spins around with his eyes shut, he has episodes where he draws inward and you can’t get his attention, he has been diagnosed by a specialist as NOT having autism, he has poor balance but not really bad, just every now and then he’ll wipe out for no reason. I don’t know where else to turn for advice but I’m not getting answers here, so I thought I’d put it out there and see what comes back.
Thanks.
Hi Rebecca, thank you for commenting and welcome! First of all, you are NOT alone. Parents, I believe, need to stick together and support each other, and special needs parents even more so. I hope I can support and encourage you.
Have you sought a second opinion, by chance? Have you considered conditions that affect balance, vertigo, hearing, brain centers, etc? How about a special diagnostic center? (I know they are costly, just throwing it out there.)
Don’t give up. Keep reading, asking, speaking to moms. A really valuable resource is talking to therapists. (Mine have been wonderful!) Go ahead and talk with them. An experienced provider or special ed teacher has dealt more intimately with kids of all kinds of disabilities and may be able to direct you, especially if they keep up with their education.
Good luck! I’ll keep your family in my prayers, Rebecca.
HI,
I’m a little late reading your blog so forgive me if you’ve already moved on. I have been a special ed teacher for many years and I also have 2 daughters, 7 and 12. They both have been raised around kids with disabilities and they’ve had lots of questions. I tell them honestly what I can about each child i.e Down Syndrome, I would tell them that she was born with Down Syndrome (always name it for them so they can learn it and stand up for your kid when someone else calls her a different name) Her brain is different than yours and it takes her longer to learn things sometimes. She doesn’t talk alot but she loves to play with friends. If they ask about the potty trainig, just say that she still has accidents sometimes. 6 year olds totally understand about that. I understand the part about not wanting to have to educate everyone every time but, remember, if you don’t give them the information they need to know, they will likely get the wrong information from someone else.
I encourage my kids to ask questions straight to the person they are curious about. It bothers me a whole lot more when kids (and adults) point and stare instead of trying to educate themselves. The more my kids know and have been around other kids with disabilities, the more they have become advocates and made friends and the more they have educated others.
Hi Julia, thank you for your input! No worries, I am always looking for tips and advice on this issue. You make a good point – who else will educate them? There are groups out there that educate on diversity and differences. I have a dear friend in NYC who’s sons just did a summer program like this
I thank you for sharing about how you’ve informed your kids to ask questions. I’ve never considered it from that perspective and I appreciate it. I will now.