Meet The Child Behind The Special Needs

Dear Parent On The Playground/Parent At The Birthday Party/Parent At The Mall,

It’s come to my attention that you have noticed my son, mainly because you are staring. I would like to think you’ve noticed him because he is so handsome, but I have a feeling you are trying to figure out what’s up with him. He looks “normal,” you may be thinking, except for the fact that he’s drooling a bit. And, wait, he wobbles a little when he walks. And he’s not talking like the other kids, or using his hands as they do.

At this point, you might form some impressions of my child, who has cerebral palsy.

You may feel badly for him because he is not “like” other children. You may think his life is lacking, or even pathetic. You may wonder how hard things must be for him. You may think he experiences less joy than other kids do.

I might think that stuff, too, if I didn’t have a child with special needs. So many of us grow up without ever having a kid with disabilities in our lives, our opinions formed only by what we see in movies, assume or imagine. I never had a person with special needs in my life until I had my son.

And so, now that I’m a bona fide expert, I’d like to clear up a few things for you.

My son doesn’t think that he is unlike other kids. He considers himself a kid like any other who loves chocolate ice-cream, trucks and Lightning McQueen. He is quite pleased with who he is, and what his life is, as long as he is fed copious quantities of chocolate ice-cream and allowed to watch his new Cars 2 DVD. Someday, he might be aware of differences that exist between him and others. But I hope he continues to see in himself what’s more alike than different, what his abilities are rather than his dis-abilities. I hope other people see that, too.

My son’s life is no less joy-filled than another child’s. He may enjoy things in different ways but he still gets plenty of bliss out of them. Just because I help him up the sliding pond at the playground or spoon up birthday cake for him does not make them any less pleasurable.

My son may have more medical appointments than other children do, what with the therapies and various doctors who care for him. But at this point, they are a normal part of life. He takes them in stride and even has fun, since therapists who work with kids usually know how to show them a good time. Although, like his mama, he goes a little wackadoo when stuck in a waiting room for too long.

My son is not constantly frustrated by his limitations. Yes, he gets riled up when his mouth is unable to clearly articulate something in his mind. But we are lucky that he has a speech app to help him communicate. Mostly, he works around his physical challenges. It’s second nature to him.

My son is just as funny/personable/determined/crafty/imaginative/intrepid as other kids. Mischievous, even, at times. His physical challenges do not shape who he is on the inside.

My son is not pathetic because he is not like other kids. He is unique, just as your child or any child is.

My son is standing at the playground or birthday party alone because sometimes kids are hesitant to come up to him. You could keep looking at him and wondering…or you could say “hello”—and encourage your child to do the same.

He’d really like that.

 

Related posts from my other blog:

10 things I could have never, ever imagined about having a kid with special needs

A letter to Max: I do not regret your disabilities

How other kids treat kids with special needs

Add a Comment
Back To To The Max
  1. by Bethany

    On November 3, 2011 at 11:10 pm

    THANK YOU! My son has CP too and we are sick of the stares and the whispers. Get over it, my kid cannot communicate and gets frustrated; be happy their typical can talk to them.

  2. by Paul

    On November 3, 2011 at 11:53 pm

    Did you ever consider that some of the “staring parents” may be thinking; “Wow, I thought I had it rough with my kid running around like crazy. Geez, I’m sure it’s a lot tougher to do all the extra things that she must do for her son. I need to put things in perspective for my own life. I’ve got it easy compared. I sure don’t envy her for all she must do with every second of her time, but then again, I DO envy her for having the strength, patience, courage and incredible love to do all those extra things she must do and take it in stride. I wonder how I would handle a similar situation?”

    I’m sure that many do think these types of thoughts too.

  3. by Jody

    On November 4, 2011 at 12:02 am

    Wow! Amazing story! I cant say I have a child with “special” needs but she def has needs of a diff sort! My daughter is 15 months old & is allergic to any & all bug bites & dogs! So far that is all the allergies we know of! She has severe asthma(since she was born)! She cant go outside to play unless it cold enough for no bugs to be out & we live in Alabama so its a very few days in the year that r actually cold enough! She loves it outside & it breaks my heart to tell her no! I question myself all the time about it: keep her in & no bites! Or let her out & go to the hospital? But shes not old enough to understand! I see this little boy as an inspiration he has a lot to overcome in life but god will see him threw it! We cant all be the same!

  4. by Julie K. Aponte

    On November 4, 2011 at 12:14 am

    Max is GORGEOUS. Thank you for educating me. I truly appreciate what you share with us. I have worked with children with Special Needs and I know what you mean.
    Thank you. Hugs and love to you and Max and all your loved ones!

  5. by Michelle

    On November 4, 2011 at 12:31 am

    I half way like this article. It does show people that kids with CP, or any other disability really are just like other kids but in their own way. They have their own struggles and joys just like any other child. But, what I don’t agree with is just assuming that every one who stares is thinking something negativly about your child. Do I think it’s rude to just stare yes I do but, you can’t just assume that they are thinking you’re child is to be pittied (sp) or that they are pathetic and has a life that is lacking. Some people even adults ARE rude in the sense that they may be thinking those things but some yes maybe be looking at him and saying omg he’s so cute! (because he really is soo cute!) I’ve done that at a party or somewhere I would look at a child and think or say to a friend sitting next to me that little boy/girl is so darn cute, I love that outfit!! or that bow! And maybe those parents could take the whispering as negative but was I being negative, no. Again though, it’s sad to me that people assume that if someone is looking or staring at their child who has a disability that they are thinking something negative when maybe they aren’t and shouldn’t be judged that way. It’s kind of a double sided thing since some stares or looks could be nothing more then admiring your child and thinking they’re cute and they could also be a negative thing…I may be naive and look at the better side of people but I would rather jump to the positive before the negative any day even if my child had a disability. It can also be a negative for your children socially and emotionally later on in their life if you’re always assuming people are being negative towards them that they will begin to think that and assume that everyone has some sort of negative view of them and that everyone assumes they just aren’t good enough because they have a disability which is sad to me because no child disability or not should ever feel that way. It wouldn’t be intentional but they see it too. It’s a matter of how you react as well. And on a end note people even stare at kids that have NO disability. It may be more noticable if your child has a disability I guess but it happens even with children that are not disabled in any way just something for thought.

  6. by Kim

    On November 4, 2011 at 12:33 am

    Thank you for this. My best friend has CP (very high brain function, very prominent back and leg contortions) and I don’t think the looks and stares don’t change much into adulthood. Another adult was even so bold as to ask me why I was “hanging out with a ‘tard” (I was younger then and my response was aggressive to say the least). I’m now the mother of a beautiful 18 month old boy who, as of yet, has no special needs. I think it’s important to address how people look at others, especially children. Your boy is beautiful and people are wrong. A person with special needs or different abilities, is as normal as anyone else. If you see me looking at your son, it’s only because his awesomeness is to powerful to look away from.

  7. by Kim

    On November 4, 2011 at 12:52 am

    …and Michelle you make a great point, as I’m one of those people who just thinks kids, in general, are awesome.

  8. by Tara

    On November 4, 2011 at 4:48 am

    While it is unfortunate that some people probably do stare at your son with pity sometimes it is likely just sympathy. Not sympathy that his life isn’t normal or as joyful as anyone else’s but for the fact that life may be more difficult for him in the future. When I see children with special needs I know there will be times in their life that people will be cruel, not caring or understanding that a medical condition makes them a little different and that makes me sad. This is especially the case in situations such as autism where the disability may not be as obvious. So when I stare at your son I am thinking how cute he is, how he is lucky to have good parents and how I hope his life doesn’t have many more challenges than we each face. I’m sorry if that offends you but it is coming from a caring place.

  9. by Andrea

    On November 4, 2011 at 5:15 am

    It’s lovely to learn about your son and be reminded that all kids are just that — kids — SP or not. I was surprised by how angry and hostile you seemed at “the rest of us.” You have no clue what might be going on in other people’s lives: maybe they have a sick kid, or someone got laid off at home, or they are going through a divorce. I hope as you continue on your journey of sharing with the Parents community you will know many Americans today are struggling for a variety of reasons (and that sadly, health issues impact us in many ways, too) and try not to be so “us” vs. “them.” Your son sounds like a great little guy and I am glad he feels happy with the world overall, chocolate, CARS 2, and all.

  10. by Kaitlyn E

    On November 4, 2011 at 7:29 am

    You are preaching to the choir. Your little boy is an angel; such a beautiful face! I have received comments from parents putting quotation marks around special needs. I have a slightly different problem. My child looks and usually acts like a typical child, and I get dirty looks when she does something socially awkward or has a tantrum. My daughter is 4-year-old and has a speech impairment, ADHD and is being seen by a neurologist for other issues. I constantly get the “dirty parent” stare. I shouldn’t have to explain myself, but I realize there are so many horrible parents out there that they just think I am one. My daughter IS special. She is beautiful, sweet and smart, but she can also be tempermental, destructive and odd. Special needs are so much more prevalent today and I realize not everyone has to deal with them directly, but stop looking at me with sympathy or giving me the stares that indicate I am a bad parent. I love my life and my child and if anything YOU (the woman in the grocery store/ park/ restaurant) are missing out on the wonderful experience (and rollercoaster) that is my life!

  11. by Raquel

    On November 4, 2011 at 7:36 am

    Great article,I have a child with cerebral palsy, and have had a lot of those looks. I think that in this time, people get shocked about a child not being the same as others and still looking happy. It is a puzzle for them. But I must say that most of the time he gets sympathy from people.
    My kid is really happy, perhaps he is getting aware of his difficulties, but it is getting the strenght to sort them out. No pitty is allowed at home and we encourage others to do the same.
    We feel that after him, we know what true love is, and we have 7 kids.
    Children with CP or any other issue remind the society, that the most important thing is not to be perfect.
    Love your article

  12. by Heidi Fidanque

    On November 4, 2011 at 9:28 am

    Thank you so much for that article! I have felt that way so much and it’s so nice to have it expressed. My 4 yr old son has Down Syndrome and Autism and I’m amazed at the stares we constantly get! We were in Hawaii recently and the stares were at their worst there, you’d think he was the first person with DS to ever visit the islands! I finally couldn’t take it anymore so when this group of ladies were blatantly staring at him I couldn’t help myself and said, “I know, he is so handsome that I can’t help but stare at him too!” That got there attention and I got my point across! If you’re going to stare at my child at least acknowledge him and say “hello!”

  13. by Kimberley

    On November 4, 2011 at 3:23 pm

    I was a child with special needs – tho it was a physical handicap only, people treated me as if there was a mental handicap attached to it. As an adult, I have learned to speak up and offer the kind word to a challenged child or parent, make a suggestion, give encouragement or to simply say “hi” or “hang in there”. Those that know me long ago learned to say I wasn’t able to do something because of my disability… because my attitude (and one I encourage in children with challenges) has always been and will always be “JUST WATCH ME!!! (Sometimes I voice the MORON part and sometimes I don’t). Those of us that are categorized or written off will always surprise those that make stupid assumptions. TO Max and all others who face any type of challenge I say – DO WHAT YOU WANT, ACCOMPLISH WHAT YOU WANT, DREAM WHAT YOU WANT. You can do anything you set your mind to, and the opinions of others don’t matter – especially when they come from small minds without the ability to dream big and act big.

  14. by J.

    On November 4, 2011 at 8:00 pm

    Beyond the appearance of any differences that may seem apparent is a person who thinks, feels, dreams, and needs love just like everyone else. Never judge a book by its’ cover!

  15. by Lauri

    On November 7, 2011 at 8:44 am

    Ellen, Max is so adorable! I am sure most people are staring because he’s so darn cute. I have been in many situations with H that I’ve felt people might be staring..but I think some of that might be my issue. Maybe they are staring out of admiration..wow, that’s obviously more challenging for that kid, but look at his tenacity. Or, god, he was born to wear CrewCuts..do you see the way those cords fit? :)

    One vivid memory, was when we were in Atlanta, after being in the Language and Learning program for 3 months at The Marcus Institute, We were eating lunch, and I noticed a lady kept staring. My initial reaction was, what’s her problem? She finally came over to our table ansd said,”What a beautiful family. You’re so happy and loving ( it was obviously a good day). My children are grown now. One of my daughters is 22, she has cerebral palsy, she’s doing great. I miss those times when the kids were young. You are so lucky to have each other.” So sweet. I get teary repeating it now.
    I also catch myself staring at kids with different issues because I see my family in them, i see beauty….When H is not with me, I have thought, I wonder if they think I am staring for the wrong reason?
    II love what you say about approaching, come say hi, tell your child to say hi, which is what we should all do!

  16. by Dawn Snider

    On November 7, 2011 at 10:09 pm

    I would like to post your letter in my newsletter. I do a special needs section every week. I have been a caregiver for a little boy with CP and Autisim for 7 years. He is just learning to speak so, he yells alot. Whenever we are out in public people stare and it drives me crazy. He’s a sweet little boy. His mother is very young and get embarssed when people stare. I loved you article and hope it helps people understand or at least think twice.

  17. by Barb Shelby

    On November 14, 2011 at 7:27 pm

    Dear Ellen,
    Just want you to know that your open letter touched my heart. I’ve linked it to my face book ‘Kid Activities’ website page.

    Thank you~ What a wonderful life message you send…http://www.facebook.com/kidactivities

  18. by Amanda Tirado

    On January 8, 2012 at 8:19 pm

    I SO hope kids will come up to Sarai on the playground and just say “hi.”. Now, I know people look bc she’s little and cute, and I don’t mind. But I’m scared for when she’s older, and she notices people are looking. When I’m out with her I feel like all eyes are on me… Will she feel like that for her whole life??

  19. [...] THE FIVE Bs: a guide to talk to our kids about children with special needsJULY 8TH THE “SHUT UP ABOUT YOUR PERFECT KID” BOOK AUTHORS WILL BE ON!5-27-2012 *Karen and Mari RodriguezHolly Robinson Peete Rip 50 Cent On Twitter – DatzhottStephanie’s dayMeet The Child Behind The Special Needs [...]