Monday, March 12, 2012

What I'd like you to say to my kid with special needs


You and I are at the playground with our kids. 

Perhaps we are sitting on a bench, chatting about the stuff moms talk about when they first meet—school, our ridiculous taxes, the best place to get the kids a haircut, the weather, you know.


My daughter walks up to us and I introduce her to you. Her name is Sabrina, and she's 7.

"Hi," you say. And then maybe you ask how old she is. Or where she goes to school. Or if green is her favorite color, because she's wearing a green shirt. Or what her favorite thing to do at the playground is. Or if she's doing anything special for spring break. Or if she's getting hungry for lunch. Or if she knows what a gorgeous mom she has (OK, maybe you don't really say that but this is my fantasy so bear with me).


My son walks up to us and I introduce him to you. His name is Max, and he's 9.

"Hi," I'd like you to say. And then I'd like you to ask how old he is. Or where he goes to school. Or if purple is his favorite color, because he's wearing a purple shirt. Or what his favorite thing to do at the playground is. Or if he's doing anything special for spring break. Or if he's getting hungry for lunch. Or if he knows what a gorgeous mom he has (see above).

You and I are at the playground and your kid meets my kids.

Your child greets Sabrina.

"Hi," your child says. "Would you like to play?"

Your child greets Max.

"Hi," I'd like her to say. "Would you like to play?"

Do you see?

I want you both to treat my son with special needs the same way you treat his sister, or any kid.

I know he may sound and walk differently than your child does and yes, he drools. Max will probably need me to help answer some questions. Perhaps you or your child won't understand what he's saying, and I'll translate, or he'll use the speech app on his iPad. I'll have to help him up the jungle gym.

But still, he's a kid. He is not defined by his special needs. Other than the visible differences, at heart he is not so different from your child.

Your child may ask what's up with Max when we're out of earshot. Be straight up: Tell her that his muscles and mouth don't always move the way he'd like them to, but inside he's like any other kid. My son's personality isn't disabled. His desires to play and learn and have fun and down copious amounts of chocolate ice-cream aren't disabled. 

The other day, Max's teacher asked him to share something he wished for.


This is what he came home with.

My son wants to make friends. He'd like to chat with you and your child at the playground. Of course, not all kids with special needs are like this; some are more shy, some have challenges with social interactions.

What I'm saying is, they are all still kids. And they deserve to be treated that way.

Just start with "Hi," and take it from there.

This post was inspired by a commenter on last week's video about the r-word. "What would be the best way to explain Max to my 6-year-old daughter when she takes notice and asks, 'What's going on with that kid?'" she asked. I've written about this a lot; recently, I asked other parents of kids with special needs to weigh in. How parents and kids can interact with kids who have special needs is a question that keeps coming up. And I think it's an important one to keep answering. 

31 comments:

  1. Perfect!

    Since Em is only three (and looks much younger) if she doesn't speak or answer a question ... in English, people just think she's not old enough to speak yet.But I know the day will come. She won't always be a tiny tot.
    And i do want people to treat her the same! Don't stop talking to her. She understands EVERYTHING!!! Trust me!!

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  2. I wish every preschooler got a chance to go to preschool in a classroom with both "normal" kids and "special" kids. I think that is why other people's differences barely register to my son. He has had classmates with various speech and motor issues for the last 4 years--for the first 3 years OT,PT and speech were regulars in his class ( sometimes as a sub in the class). Now he goes to speech weekly outside the class.

    We also have a man at our church who is a quadriplegic. Steven regularly brings his niece to awana to work on her bible verses, and he is a favorite partner for the little ones to work with. I am so proud and amazed that these kids are able to look past the chair!

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  3. Here, here! Well said! And Max is brilliant! What a sweetie!

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  4. I needed this post this morning! I love love love the "my child's personality is not disabled!"

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  5. Oh Ellen-this is WONDERFUL! You are so right-just say hello to my kid, don't act like he's invisible because he limps for god's sake! Love Max's "I have a dream" work!

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  6. Well written. I think the same thing could be said about any difference, actually. Cognitive, physical, religious, race... Yes, we all notice the differences but that doesn't mean that we aren't able to move onto the next step which is human interaction and friendship.

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  7. Hi Max!
    my name is David and I'm 10 years old.
    We live in Kingston Ontario Canada. If you are ever this way with your family- My mom and I would love to have a play date with you...(your family can come too!)...
    David
    (written with help from his Mom)

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  8. We are struggling with this currently. Mason is very verbal (although a bit hard to understand if you don't know him), and very social, but school frequently relays that he doesn't engage with his peers. I observe frequently and feel it is the other way around. His peers don't take the time to understand him, or would rather be running, jumping climbing (Mason cannot walk). We are also trying to stress that he needs to be part of the class, not the class, and then Mason with his 1:1 at a whole seperate table. I think folks mean well, but it is a struggle to get them to see the simple things that could be done to make a huge difference.

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  9. In the past, you have written about how it was wrong that Max wasn't allowed to open another child's birthday gifts, or how he was unkind to the children brought him Cars toys but not Cars Two toys, or how he ran off with part of another child's purple crayon from his Halloween costume. While these are things that wouldn't be acceptable from a typical kid, you feel they should be allowed (or overlooked...or even encouraged) because he has special needs. If I had been on the plane where your husband let Max kick and kick the seat in front of him, there is no way I would encourage my kids (one of whom also has special needs)to play with him. That behavior is just unacceptable from ANY kid, special needs or not. Would Max also be allowed to kick my kids' chairs? Steal their toys? Open their gifts? And would I be expected to just smile and let it happen because Max has special needs?

    You write over and over how you want people to treat him like a typical kid. But honestly? I would be afraid to approach you on the playground because I would be afraid that however I reacted to Max would be wrong. You want him to be treated like every other kid *and* you want him to have extra-special treatment because of his CP. I don't know where that line is with you - how could I expect my child to know where that line is?

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  10. This is an awesome post, Ellen! I love it. :)

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  11. Love it.

    And of course my heart did a flip -- ache then hope -- when I saw Max's dream xo

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  12. Thanks, all! Sarah, yes, I wish all kids had a chance to be in inclusionary activities... Max is in a school for kids with special needs, but this summer I'm sending him to a camp that has an inclusionary program. I think it'll be great for everyone.

    Tracey, you are so right, this could apply to all "differences." If only it were so.

    And Anony Mous: Why are you hiding behind anonymity? Is it because you make statements that aren't true? I've wrung my hands on this blog about the challenges of dealing with Max when he acts out; I have never condoned that behavior. That one time when a relative was unnecessarily rude to Max about Max's wanting to help open a birthday gift is, however, something I minded. Also, there are times when Max needs some special accommodations in public places, though I certainly do not mean letting him kick a seat on a plane. In any case, you seem to have missed the point of this post. Sorry for your confusion.

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  13. This is the final chapter in my book, "Mommy, I Wish I Could Tell You What They Did To Me In School Today". After reading this blog post, which is awesome, I thought that I would share this with you:

    IT’S ME AGAIN, NOAH
    TIME TO SAY, “GOOD-BYE”

    Thank you so much for taking the time to read this book; it means so much to me. I hope you enjoyed me and my friends sharing our stories with you. I know some of them were a little hard to read, but thank you for getting through them.
    Before I say my final good-bye, I just want to share a couple more things with you. I am who I am. I am a child with special needs. Having the special needs that I do is nobody’s fault. It’s not Daddy’s fault. It’s not Mommy’s fault. And it’s certainly not my fault. If you’re one of those people trying to blame someone, please stop. There is no one to blame.
    Me and all my special needs friends don’t want to be treated special. We just want to be treated like any other kid. When you encounter a special needs child, such as me, who is non-verbal, that doesn’t mean he or she can’t communicate with you. You use words and language, we use other things. If you try real hard, you’ll be able to figure out what we’re “saying” and how we’re saying it. All I’m asking is that you try. We have a lot to say. Some of us may not be able to learn to talk but all of you can learn to listen, even if that involves something other than using your ears.
    When I got to the point in my life where I could no longer walk, I accepted that. I didn’t like it, but I accepted it. I didn’t expect anyone to change that. I knew that no one could. What people could change is how I felt, my mood and how my day was going to be; that was more important to me than walking anyway. It’s very simple really. Say hello to me with a smile on your face. Tell me to have a good day, and mean it; I’ll know if you don’t. Ask me how I’m doing; I’ll let you know. Tell me how you’re doing; I want to know. Find out from Mommy what I watched on TV last night. If you saw the same show, talk to me about it.
    A smile and a good morning to start my day go a very long way. Don’t pity me. Don’t feel sorry for me. If I’m thirteen years old, treat me like I’m thirteen. Talk to me like I’m thirteen. I guess what I’m trying to say is treat me like you would any other kid. Treat me like you would treat your child or a loved one of yours. Treat me like you would want someone to treat you. Treat me like a human being. Just be nice and try and make sure that everybody else is being nice too; at school, at home, everywhere. And if you see someone who is not, please speak up for me – I may not be able to speak up for myself.
    I have special needs but I’m no more or no less special than any other kid in any other school. I may do things differently, but we all do in our own ways. So, from the bottom of my heart, have a nice day. I have found peace. I hope you do as well. Thanks for listening. I love you.

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  14. Hi, I am blessed to help with care of 3 grandchildren.My 6 year old grandson Jake has special needs and for the past 4 years he has spent almost every weekday with his cousins. It has been such an amazing journey watching how these children have learned to play together, understand each other and have so much fun together.

    My 5 year old grandaughter Cristiana wants to be a doctor when she grows up so she can "help Jakey talk", although she is convinced she knows what he is saying and interprets for us!

    Her father told me when he went to speak with her preschool teacher that she told him that Cristiana has such a kind heart,she likes to help out the kids who might be sad or not having anyone to play with.. she started to tear up when my son told her that she spends alot of time with her cousin who has special needs and the teacher said "thats it..thats the difference I see in her..her compassion"... It was so wonderful to hear this..I hope it touched your heart too.
    Grandma Fanny

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  15. What a fantastic post, and a beautiful thought from Max. I think he wants friends not just for himself, but for everyone else too, which makes him quite a generous, sweet boy.

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  16. I agree with the previous comment that "Max not only wants friends but wants everyone else to have friends too." I love how Max is so thoughtful! Such a wonderfully, wise boy!

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  17. I think anonymous was rude. However there is an important question here. If you allow max the very age atypical things like " no one else can use purple at the birthday party" Does that preclude you from asking for him to be treated like a typical kid? These questions are tied together. Can max fully engage in the give and take of wants and needs 9 year olds expect of kids they play with? If not does that mean that max isn't entitled to play at alll. My feeling is that this is much more complicated than asking for max to be treated like any other kid. That society may owe max more than that. That posturing it this way may not lead to max getting his needs met.

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  18. Good stuff!

    We often tell other parents basically the same thing you said in this post. That Noah is ok, he won't break, and he likes to play like every other little boy.

    I also like to give other parents permission to ask questions about Down syndrome, what that means for him, and for us, etc.

    I've found that so many people just don't know what to say. (Much like myself before Noah was born....boy, have we learned a lot on this journey.)

    Thanks for all you do! MAX IS THE MAN!!

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  19. My son's best friend, Liam, has Aspergers. One of the things I absolutely love about my son is the size of his heart. Gus loves Liam. He frequently asks if he can be his brother. The bigger boys notice that Liam doesn't talk like they do. They've started to pick on him. Whenever it happens, Gus pipes up, "Liam just talks funny. He is still a red power ranger." For some reason, this is all that needs to be said and they all go on playing. And my heart swells.

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  20. Wonderfully inspiring post with a very strong message to remind us to behave the same with all of our kids, those that are just special to us and those that have special needs. BUT Anonymous does bring up something that I know I am guilty of and she challenges you on it. Playing the disability card and sometimes using it as a get out of jail free card but then wanting to be treated the same as everyone else, is like wanting to have our cake and eating it too. As far as I am concerned you should be able to have both. The challenge is to make sure you do not try to eat cake every day - if you play the treat me normal /make allowances game to much then you will exhaust the compassion, understanding and patience of your audience. I tell my daughter who worries that she will never have a boyfriend that I absolutely know that there is a special someone out there who will have the understanding, patience and downright good taste to fall in love with her and be her best friend for ever and Max will too.

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  21. Well said! That is exactly what I hope of anyone who sees me and my sweet kiddos at the park.
    Thank you!

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  22. Richard, that is one awesome chapter. Bravo. Thank you for sharing it here.

    Grandma Fanny, I love hearing how Cristiana likes to help other kids! Max has helped another child in his class learn to use the iPad. It's so great. Those kids are lucky to have you.

    Lauren, as always, you speak the beautiful truth.

    Noah's Dad, I agree, I like when other parents ask questions about what it means to have CP. Oh, and yes, Max IS the man! So is Noah! All our kids are THE men! And THE girls!

    Annie and MomOnTheSide, I hear you. I know it seems like I'm talking out of both sides of my mouth. It's complicated. What I said here is what I really want: for other kids to approach and interact with Max like other kids. At times, I make allowances for him. At the birthday party, mostly comprised of kids from his class, I thought it would be OK to let him only be the purple-using kid. When he's interacting with other kids who don't have special needs, I try not to make as many allowances. This is a tough balance. What I do is purely driven by the fact that it is very, very hard for both adults and kids to see past disabilities. Hmmm. OK, I'm going to write a post about this and open it up to discussion.

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  23. Seeing the child not his disability - great discussion to have. For me Chelsea's wheelchair is the huge elephant in the room that blocks her from view, so I am hoping for ideas and insight on how to manage my own reaction when people ignore her and assume that she has cognitive as well as physical challenges (which she doesn't). Thanks Ellen have a great day, Sandra (aka Momontheside)

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  24. This post reminds me of a conversation I overheard my then-7-year-old sister having with her friends about my then-5-year-old sister (with special needs).
    Kids: What does she have?
    My sister: Special needs.
    Kids: What is that?
    My sister: It means that she's special, but she needs extra help with stuff.
    Kids: Oh. Ok.

    And that was that.

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  25. I saw this forum post that said autism is a sin. It certainly is not! Jesus never said anyone's disabilities were a sin!He just loved them like everyone else, unconditionally.

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  26. I would definitely want to meet Max. :) :)

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  27. Wow what a great blog. I am a teacher of special children. Not children with Special Needs. My children have some much to offer the world, their families and their peers at school. I am a much better person for knowing these very special children.

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  28. thanks so much for this post. I was just trying to sort out how to explain things to my daughter (5) when she has her first close and extended interaction with a special needs child. I *think* I generally hit the right messages - he is really sweet and loves to play; he has some struggles with talking and understanding that are really tough for him, so her certainly didn't mean to keep taking your toy. he just didn't understand. But really, I realized how ignorant i am about how to get my kid to treat him with the same compassion (but maybe a bit of extra patience) as any other kid. I try to just lead by example, but boy would it be nice to have more concrete suggestions.

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  29. I have taught children with multiple needs for about 20 years now. One thing I have found that helps is to integrate my students into the reg. ed classes as young as possible. I usually go to the classroom first and introduce my student and let the students know about the similarities between them and my student and how cool some of the differences are. I have also found that many of my students don't know how to socialize with their peers. They usually look to adults, because they are used to it and because adults are more likely to listen to them and help them out. I think you need to teach your child how to socialize, how to meet and greet and how to ask others to play, even how to play and deal with interactions both good ones and bad one.
    Lisa

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  30. I just stumbled upon your blog, and its made me weep approximately 72 times already! Okay not really, but I AM weepy, and totally moved by your writing, and your story. Thanks.

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Thanks for sharing!



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