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Thursday
Sep102009

How you should treat my child with special needs

This is a guest post by Ellen, a blogger I'm so glad I had the chance to meet at BlogHer 09.


DSC02718This is my little boy, Max. He’s six.

At first glance, he may look like any other kid. And in many ways, he is like any other kid. He loves chocolate ice-cream, trucks, airplanes, his toy tractor, chocolate ice-cream, t-ball, splashing around in the pool, the movie Cars, pulling his little sister’s hair. And also, chocolate ice-cream.

Max actually has cerebral palsy. It’s a scary term, I know. Before I had him, it seemed like a terrible fate to have a kid with disabilities.

Then I had a kid with disabilities.

Max had a stroke at birth. Crazy but true: Babies can have strokes. It was a stroke that damaged both sides of his little baby brain. My husband and I were told that Max may never walk or talk, that he could be mentally retarded, that he might have vision and hearing problems. Every single one of my nightmares became a real possibility.

Except....

Max walks. He runs, too. He speaks words. He sees fine. He hears perfectly. He’s bright. He’s funny. He’s interested in the world. Yes, he has his challenges: He cannot talk fluidly, and he has trouble using his hands and chewing food. But he’s doing really well for himself. And he makes me happy, blissfully happy, every single day. Because he’s so sunny, because he’s a fighter, because he is an all-around phenomenal kid.

That might not be what you'd think if, say, you were to spot us at the playground.

  • You might feel sorry for my child. I know, Max may look a little pathetic when he drools or when he’s struggling to pick up something and he can’t. But, trust me, he is perfectly content with who he is and one very cheerful, life-loving child. Who will someday be quite the ladies' man, I know, but I’m not quite ready to worry about Max and dating. Maybe when he’s seven.



  • You might think that my child should be treated differently than other kids. Nope. Max likes it when you talk to him. He likes it when you joke around with him. He likes it when you fart (although I'm not expecting you to do that).



  • You might think that your kid and my kid don’t have much in common. It’s true Max may not be able to do some things other six-year-olds can do, or do them in quite the same way. But just like your kid he likes to play, pretend, laugh, get silly, touch dirt, roll in the dirt, get himself entirely covered in dirt, bring home dirt, track dirt all over the house. You get the picture.



  • You might feel embarrassed if your child says something “inappropriate.” You know, like “Mommy, what is wrong with that boy?” or “Mommy, why is that boy drooling?” Don’t worry, I won’t be offended; kids are curious. Kids don’t get it. I understand that. Just as long as your child doesn’t ask, “Mommy, do you think that boy’s mommy could use a little liposuction?”



  • You might think it’s rude or awkward to pull your child aside and explain that my child has special needs. Actually, I’d appreciate it if you did do that. Sometimes, kids don’t know what to make of Max or how to play with him. I can certainly jump in and explain things to your child, but it’ll be much more reassuring and encouraging coming from you. Say it however you wish–“This is a child who can’t talk like you do but who likes to play just like you do, you may just need to have a little more patience with him”—but please, say it.


Your child will learn about kids who have special needs. My child will feel included. Everyone will have fun. What could be bad? Max is just a kid. A kid with special needs but still, just a kid.

Ellen blogs daily at To The Max. She works full-time as an editor, a mom, a wife and a human being; in her spare time, she likes to procrastinate.
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Reader Comments (33)

This is such a wonderful post and I'm glad that it's being shared! Kids with disabilities or who look different need adults in their world that can help pave the way for acceptance and understanding with other children. It's our duty to teach our little ones that differences are ok.

September 10, 2009 | Unregistered CommenterJessica - This is Worthwhile

My husband's little brother aka my BIL has cerebral palsy. He too had a stroke just moments before being born. When I see my little BIL all I see is a bright bubbly 5 year old who loves Thomas the Tank Engine. His mother however, sees a disabled little boy. Right now, he doesn't get it, but as he grows and his mom tells him more and more, "You can't do that" its going to be harder on him.

September 10, 2009 | Unregistered CommenterShotgun Mary

My son Orion has special needs - he has a condition called hemiparesis (partial paralysis of one side of the body) which is coincidentally one of the things associated with cerebral palsy. He was dropped down the stairs when he was three months old, and the hemiparesis is a result of the brain damage.

Like you, we were given a bad prognosis. At first they told us he would almost certainly die. Then they told us he might never walk or talk or see again. Now at four years old he is a perfectly 'normal' little boy, aside from the hemiparesis which mostly affects his right arm. He has a special Lycra glove to wear to try to tease the muscles into co-operation - before this he had stiff splints which restricted his movement so the glove is a real improvement on that.

Thankfully so far I have not had any of those uncomfortable moments. When people see him trying to say, climb the climbing frame one-handed, the other held stiffly up to his chest, they ask - especially children - and I have not yet heard a parent shushing their child for asking innocent questions. But of course there are still questions, and I worry that people are thinking of all the things Orion can't do rather than all the things he can.

I guess what I'm trying to say is - I could have written this little list myself, albeit probably not quite so eloquently. Thank you for writing it Ellen, and thank you for publishing it PhDinParenting, because it really spoke to me.

September 10, 2009 | Unregistered CommenterAnji

Fantastic. As the mother of two special needs children, one with spastic cerebral palsy, I appreciate Ellen taking the time to write this and help educate the world on how to treat special needs kiddos.

It's a cause that is near and dear to my heart.

September 10, 2009 | Unregistered CommenterRedneck Mommy

Redneck Mommy: You just reminded me of your fantastic post on this topic too. I should link it here in the comments for those that are interested: http://theredneckmommy.com/2009/03/10/dear-internet-im-placing-you-on-notice/

September 10, 2009 | Unregistered Commenterphdinparenting

This is lovely. Although it's not the same, my daughter used to wear an eye patch and I got tired of adults whispering and avoiding her. I welcomed the kids who asked, openly, "What's up with her eye?"

September 10, 2009 | Unregistered CommenterKayris

A friend of mine has cerebral palsy. Sure, she walks in a different way, and her voice is a little unusual, and her handwriting is total crap*, but she's no different than anyone else. She's intelligent, funny, has a successful career, and even married. She's a living example of everything that a person with cerebral palsy can accomplish. I love to see people's expectations crumble when they meet her. Because of her example, when I hear about someone with cerebral palsy, I can only think that they must be a remarkable person. I wish I could meet your Max, I bet he's a blast. He can come over to play with my sons anytime.

*I first met her because I was the hiring manager at a store, her application was the most clearly printed I'd ever seen. Later, I found out that she had a friend write it as her handwriting is difficult to decipher at first. We laugh and laugh about her misleading application to this day.

September 10, 2009 | Unregistered CommenterAzucar

Thank you thank you thank you for this! This is one of the most useful "How To" posts I've ever read.

September 10, 2009 | Unregistered CommenterMelodie

Thank you for sharing your story and for the very useful how-to.

September 10, 2009 | Unregistered CommenterCatherine

Thank you for writing this. I haven't been in that situation yet, but I'm sure I will be as my kids get older. Like Kayris mentioned, my son also wears an eye patch (6 hours a day for 6 months)... and I've had to keep kids with food away from my daughter with severe food allergies...but anyways, thinking about it from the other side is helpful. Thanks again.

September 10, 2009 | Unregistered CommenterMissy @ Marketing Mama

Thank you so much for this. I have yet to encounter this sort of situation (my son is 19 months old), but I know I would, and probably will, have trouble with it and feel very awkward (I really really hate to hurt people's feelings). This is a great reminder of how to try to act. Most of us truly have no idea. So again, thank you. Seriously.

September 10, 2009 | Unregistered CommenterMarcy

Oh, I so appreciate the thank-yous! They're heartening to hear.

September 10, 2009 | Unregistered CommenterEllen

Great post! I don't know anyone with disabilities and while I am not someone who stares at people who are different I know that children are curious so the tips on explaining it to kids will be very helpful.

September 11, 2009 | Unregistered CommenterLauren

All my kids have issues - not huge, just learning difficulties, vision, whatever... and I really think it is in their best interests to be treated as normally as possible... While I use tired and hungry as excuses, I never let them back out of a situation because of one of their problems. Other kids can be ruthless, but honest! It's the adults that are a total pain and want to go on and on and on and talk about them as if they are not even in the room. I find it frustrating that something I have made every effort to help them understand about themselves and accept that that is who they are and something they will have to deal with and get on with - other adults have a hard time accepting and working through!!! No it isn't shame! No don't fell sorry for them, they are content with their lives so why spoil it for them? They are after gloriously and wonderfully made. Fabulous post, I love it!

September 11, 2009 | Unregistered Commenterse7en

This entry is being featured on Five Star Friday -
http://www.fivestarfriday.com/2009/09/five-star-fridays-edition-70.html

September 11, 2009 | Unregistered Commenterschmutzie

@schmutzie: Thank you so much for helping to spread this important message.

September 11, 2009 | Unregistered Commenterphdinparenting

Thanks to Five star Friday I came across this post, Thank you for sharing your story with us. My mom also has CP. She grew up in a very different time and the doctors wanted her locked away in a "special home" however my grandparents were brave people and said that she is a person and will do things like any other normal child. She grew up, got married and had me. She has had a few set backs, but she is my mom and is as normal as can be to me!!

September 11, 2009 | Unregistered CommenterNikki

First of all, your son is just beautiful. I know the 'boy' version of the word is handsome but all I can think of when I look at his picture is beautiful.

Second, I think this is such an important message to get out. One of my best friends has OI and I find that often it is the adult who is more awkward/uncomfortable in her presence. On the other hand, kids are curious, but discouraged from asking or talking to her about it by their parents. We need to remember how much our kids learn from us and to be open!

September 12, 2009 | Unregistered CommenterGayle

I usually say "remember how we talked about gifts and challenges? You know, how everyone has gifts, and everyone has challenges? Well, challenges are different than yours, and easier to see." Somtimes followed with something to the effect of "but I bet his gifts are pretty cool too." Or "you have trouble handing in your homework, he has trouble getting his hands to do just what he'd like them to," or "you have trouble saying nice things when you're upset, he has trouble talking. But that doesn't mean he doesn't have a lot to share too. Why don't you go ask if he wants to play?"
One of my very good friends in hs didn't have arms. He had hands, but no arms. He was also invariably the first kid I'd pick to have on my team in gym class, because I knew that even if we lost, it wouldn't be his fault, but we'd have a better time playing, and that was the important part.

September 12, 2009 | Unregistered CommentersleÉ

Wonderful post! Thanks Ellen & Annie!

In no way am I comparing this to having a disability, but my husband is heavily tattooed and passing mothers will pull their kids a little closer, or he'll get the dirtiest looks when he's with our son like, "You're going to be a horrible father!" Curious kids are great, that's how they learn! But it's always the adults that attach a stigma to something, ANYTHING!

September 12, 2009 | Unregistered CommenterRosanna

Thanks, Gayle, I think Max is beautiful too. :) And, interesting that you bring it up, I am planning to do a post on my blog in the near future about how moms sometimes get uncomfortable around me. SleE, it is wonderful how you explain things to your child. And Rosanna, you are right, it's adults who stigmatize.

September 13, 2009 | Unregistered CommenterEllen

Love this posting! My son has autism and he doesn't do many things typically. I think it's great when kids just ask whatever questions they have, so then I can answer them in a very matter-of-fact manner. I'm happy to explain why he's still in pull-ups or why he doesn't seem to want to play tag when asked. And it seems that the more upfront and honest we are about his strengths and challenges, the better the community-at-large is at accepting, assisting and accommodating our son. We used to get the 'your kid must be a brat' stares, but I just say "We're having an autistic moment." and people will give us the space we need during a meltdown.

September 14, 2009 | Unregistered CommenterMelanie Harper

thanks so much for helping me know what to do. I am one of the heart-on-your-sleeve types and I thrilled to know what to tell my son. thank you for your openness and frankness.
bless you and Max! :-)

September 14, 2009 | Unregistered CommenterKaren

We have a nephew with cerebral palsy. He's 16 and still wheelchair bound (and yes, still drools a lot). But exposure to him and discussing what special needs means and what it does not has made my girls have a special heart for their special needs friends.

My oldest daughter often helps a set of twins with special needs, one of whom has CP and in a wheelchair and one of whom has other special needs but walks with difficulties. I'm grateful to say that she goes right up to them and plays with them, talks with them, and even helps them when they need something done. They seem to appreciate the kindnesses my daughter gives them.

My other daughter had her own special need for a while, which placed her for a while in a special needs preschool classroom and she had friends of varying abilities.

She told me a little earlier today that she took some of her leftover birthday treat bags to 4 children in a special needs classroom (with a little bit more challenges than she had in the preschool class), and your advice would help me to discuss some things a little bit more to her, to explain more about what their parents would like other children to know about their wonderful kids!

Thanks for the post.

September 14, 2009 | Unregistered CommenterKC

This was such a touching and beautiful post. Your son is beautiful - look at his smile! I appreciate you writing this post.

September 14, 2009 | Unregistered CommenterLoukia

I really enjoyed reading this post - thanks to Annie for hosting it and Ellen for contributing it. It's reassuring to hear that it's okay to explain special needs and disabilities to our kids. It sounds like Max is a fun kid who'd have a blast with my boys. Terrific post!

September 15, 2009 | Unregistered CommenterDaniGirl

Thanks so much to Ellen for writing this article! It is not only one of the most frank and inspiring pieces I've seen on the subject, but also wonderfully humorous! After I read about Max I was moved to write about my own son, who is autistic. I'd love it if you would read my article, and I hope that it touches you as much as your narrative did me.

You can find the piece, "Telling All Their Stories," at Associated Content. The URL is http://www.associatedcontent.com/article/2169115/telling_all_their_stories.html?cat=25

Cheers!
Ruby

September 15, 2009 | Unregistered CommenterRuby in Montreal

Hi, My name is Cheryl andmy son KJ, who wil be 9 iOn Oct. 30th, has cerebral palsy on his rt. side. He had a blood clot on the left side of his brain when he was 4 days old as a result of lung surgery. He struggled as an infant and did not walk until 2 1/2. He is a small guy, about 5 inches shorter than his just barely 7 year old brother. but now he runs, Heelys, plays soccer, cub scouts, fishing...on and on and on!!! I am always shocked and impressed watching him create a way to do things one handed, We are working on riding a 2 wheeler. Tough, but I know he will do it. academically he is doing great. He receives therapy at school and wears a foot brace-which he hates- Sometimes I feel sorry for him (me?) when he struggles with something, but considering he disassembeled his bike the other day with a butter knife, I don't think I need to worry. His speech is a bit slurred and he drools when he tries to do something difficult, but oh well, its just slobber!! Glad my friend bellyboop pregnancy posted you on her page. Nice to meet both of you. KJ says to say Hi to Max and he says he can come stay here anytime because he has a bunkbed : ) Cheryl fiebelkorn, Tucson AZ

September 16, 2009 | Unregistered CommenterCheryl and KJ Fiebelkorn

Great post. I really want to guide my children when they meet people who are different than them, but don't always know what to say myself.

This was really well written

September 16, 2009 | Unregistered CommenterRebecca

Thank you for posting this. I have a 5 month old son who has a brain injury as a result of a lack of oxygen in utero. He has been slow in reaching his milestones, but he's working on it everyday. I have a feeling we are going to be looking at a diagnosis of CP or something similar. This was a beautiful post about a beautiful boy. It reassures me that my little man may someday be as active and mobile as Max is. Regardless of his ability, he's a wonderful little boy who will love life and accomplish all that he is capable of while his proud parents cheer him on!

September 17, 2009 | Unregistered CommenterJaime

Children are born with no prejudices. It is society, medicine, and adults that teach the chldren those prejudices about people that are "different" aka "not normal." How wonderful would it be if we lived in a society where everything was considered "normal" regarding how a person looked or acted? The spastic movements of someone with cerebral palsy would be normal. The slurred speech of someone that had a stroke be normal. An amputated limb would be normal. A wheelchair would be normal. A mobility walker would be normal. The visual cane for the blind would be normal. Sign language would be normal. I could go on and on.

September 29, 2009 | Unregistered Commentereternalcanadian

[...] than pretending that disabilities don’t exist, I see value in helping people understand how to treat people with disabilities, in helping to ensure people with disabilities are not invisible, and in fighting to ensure that [...]

Hi there,
I agree with you because my mother had that struggle with me. I have a learning disability and high functioning autism and had membrane oxgenation as a child, and was in classrooms with special education required. So I am doing this advocacy project for children with special needs. Thank you for sharing this, tell your son that I put in a prayer for him and that I am on his side. God bless you all!

November 18, 2014 | Unregistered CommenterDana Watts

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