You’re Staring At My Child: A Special Needs Reality Check

I took Max to the zoo yesterday, a celebration of his last day at school. Max loves it there—he knows it well, there’s always something interesting to see, and there’s a train ride he enjoys. I love it there because seeing him so happy makes me so happy, too.

As we walked around, I noticed kids openly staring at Max. Max is nine years old, and I’m still not used to this. Max does not notice, but I watch them watching Max, and it still hurts.

The kids are staring, I know, for the very reason a young boy articulated as we were waiting in line to get into a butterfly exhibit. “Is he young or is he old?” the kid asked. Children know that Max is a big kid, but they can tell he’s not quite like other big kids.

“He’s nine years old,” I told the boy, “and he can hear you! You can talk to him, if you’d like.” He didn’t say another word. Worse, his mom was standing there the entire time and didn’t say a peep.

At times like this, I despair about how other kids see Max—and what their parents are (and aren’t) teaching them. It’s so unfair. If they could just look past and see the kid behind the disability, they wouldn’t be fearful or judgmental. They’d find a boy who, in many ways, is just like them.

Then last night, I came across an article online about an official in Ghana calling on people there to change their perception about people with disability and consider them part of society. He actually appealed to parents of children with disabilities to not to hide them in their homes. 

Whoa.

I pondered the shame and stigma children with special needs have to deal with in other countries, especially in the developing world. Some countries struggle just to keep children alive; each day, according to the US Coalition For Child Survival, 26,000 kids under age 5 will die from preventable or treatable diseases, including pneumonia and diarrhea. Helping kids with special needs is probably not a priority in places where the mere act of survival is a feat.

And so even as I struggle with the stares Max gets, and the fact that many parents don’t educate their kids about accepting and appreciating differences, I know that we are lucky to be living in this country.

But in terms of perceptions of kids with special needs, wow, do we have a long way to go.

 

From my other blog: 

My child with special needs is not a burden to society

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  1. by Jo Ashline

    On June 20, 2012 at 12:02 am

    Ellen – your post is spot on and so true. I experience the same feelings with my son Andrew, who is 10 and developmentally delayed due to autism and a myriad of other health issues. I used to be a full time Kindergarten teacher and Andrew spent a lot of time with my students in my classroom. It was amazing to watch the kids go from “What’s wrong with him?” to “Is Andrew coming today? We miss him!” The more time they spent with my special needs son, the more they saw him as an equally valuable human being capable of joy and sadness, a child who shared their passion for glitter and glue sticks. This very topic is one I strongly advocate for because the children who are growing up with Andrew and your Max today are the same adults who will be voting on issues that are relevant to the special needs community down the road. I recently wrote a post about this that touched upon the reasons every child should experience the gift of friendship with someone with special needs. http://themomblog.ocregister.com/2012/05/17/5-reasons-your-child-should-be-friends-with-someone-who-has-special-needs/86831/ I hope you take a moment to read it; I think it will resonate with you and your own experiences with your son. Thank you again for your honesty and candidness. Hugs to you and Max.

  2. by Jacqueline

    On June 20, 2012 at 5:39 pm

    I couldn’t agree with you more, parents and especially many adults should ensure they’re teaching their children that everyone is different and just because someone is different doesn’t mean they should be treated differently. But I realize many parents and adults aren’t educated themselves, so why bother trying to teach their children about something they don’t even understand. I’m 24 years old and I have a handicapped sister who is 26, almost 27. She has cerebral palsy, autism, bipolar, and severe mental retardation. This all caused by severe brain damage, due to lack of oxygen to the brain when she was born. She doesn’t talk, nor can she do many things for herself but she’s still a person. She knows what you’re saying even if she can’t answer back, she’s much smarter than what many give her credit for. I still battle every time we’re out with all the adults starring, without enough courage to bother wanting to know why she’s different, or shrug it off if I even attempt to explain. I hate it, I really dislike they way today’s society is and the way most people view my sister and any other individual that may be different. I know its worse in many other countries, but when it comes to the US and their understanding of special needs children, there’s a very long road ahead.

  3. by Kara

    On June 20, 2012 at 8:03 pm

    I think this is where inclusion comes in. There are still a lot of families in North America that homechool their children with disabilities or place them in special classrooms and schools because that is the best option for their child in their community, sadly. If kids and parents do not have the opportunity to meet those with disabilities in their community, their reactions will demonstrate this. It is sad that parents of kids who stare or say something rude don’t speak up but a lot of times they are uneducated themselves. Writing articles like this helps educate but so does getting into the community and the schools. My son has cp and is non-verbal and non-mobile. We lived in Cairo from when he was age 3 months to two years (he was born in London UK before that and we now live in Toronto). I know what kids and people with disabilities are treated like in foreign countries. It’s odd to me that you would be so surprised that an official in Ghana is calling on parents to stop hiding their disabled children when it certainly happens here in North America, although not on such a blatant, tragic level. When my son was a baby I visited a school in our neighborhood in Cairo that was a part of the MOVE curriculum. All the children were lined up outside waiting to be picked up by their parents that were already very late. They sat in make shift wheelchairs because there are no vendors in Egypt for adaptive equipment. (another reason children are kept at home, there is no way to transport them). I asked what language they used in the classroom and the teacher responded that none of them talk. I said, yes, but you do talk to them, don’t you? She became very flustered and replied Arabic and some English. I knew that my son would never go to this school and my heart ached for the children that did because even though it was likely the best there was for them, it was certainly not good enough. Although this seems like an issue particular to a developing country, here in Toronto my son goes to an inclusive preschool, which is fabulous, but I am struggling to find a program for him that is just as inclusive once he leaves his current school.

  4. by Lori

    On June 20, 2012 at 8:14 pm

    My son, Lucien, is 10 with CP. He uses a wheelchair. People of all ages stare at him. He does notice. It bothers him and it bothers me too. I encourage him to say “hi” when someone is staring (while I resist the urge to flip them off). Typically, that is enough to at the very least stop the staring. But, the fact is, for their entire lives people are going to look at our children and make assumptions.
    On a recent trip to the grocery store Lucien was using his gait trainer. A woman walking by put her hand on his shoulder and gave him a little squeeze and said, “awww, baby” like he was some sort of pathetic creature. I guess it’s a good thing that I was initially stunned and that she was gone before I really processed what she’d done and said.
    Unfortunately, kids are not learning in school how to interact with other kids who are different from themselves. Their parents didn’t either. So it is up to you and I and every other parent of a child with special needs to educate them whenever we get the chance.

  5. by Elaine Hime

    On June 21, 2012 at 1:41 pm

    My youngest son Rutherford has multiple disabilities including cerebral palsy and is medically fragile. Rutherford also uses a wheelchair and has significant delays. Through the years my husband and I have had many times when children would stare at Rutherford. We learn to use it as an opportunity to educate, Rutherford is quite the biology lesson. We would encourage the children to approach Rutherford in his wheelchair, touch the wheelchair and ask any questions they wanted and answer in terms a child could understand such as ” his brain doesn’t work right sometimes”. We found that our attitude set the tone for the exchange with the child and the child’s parent. I found that my attitude towards Rutherford and how I react to him defines how most people react to him. To me, when a person is staring at Rutherford, they are trying to figure out what is wrong or different and that interest or curiosity is what I want to capitalize on because at least they are paying attention. Its actually the people that ignore Rutherford that I have more of a problem with.

  6. by katie

    On June 21, 2012 at 2:00 pm

    So many children are never taught compassion. That is the problem. My children were taught from the beginning that EVERYONE is DIFFERENT and EVERYONE deserves to be loved and respected regardless of race, religion,or disability,or age. They were encouraged to introduce themselves to special needs children and adults from an early age. It melts my heart and makes my heart smile now, to see my children who are mostly all grown, to still smile and approach an elderly person and offer to assist them, or interact with a spec needs child in public and at dr offices,etc….that’s what happens when we teach our children compassion and they are raised to not fear difference, but to embrace it. I care for a spec needs child and I worked with spec needs children for years,and I’ve seen and witnessed the cruel stares and comments and it is so uncalled for. All it takes is teaching our children compassion and indifference…

  7. by Kathryn

    On June 21, 2012 at 4:43 pm

    I know right Ellen
    Just today at my moving up practice the guiadance consuler who has a son with autism had to give a speech about how we all are differently and not to treat those different than us rudly.There are 4 kids from the Gateway class(the special ed class)and 3 from the inergration class moving up.People laughed as one boy made animal sounds,a girl ran across the stage and another boy attemped to jump off the stage and they all went first not in abc order. Also alot of kids rolled their eyes when the Best Buddies went up to our inclusion presintion and say the pledge. Cross your fingers for tomorrow that everything goes good and I dont mess up my speech.(I am a CSL delegate [student council]next year)

  8. by Steph

    On June 22, 2012 at 3:15 am

    I have to say that children probably learn off adults in how they respong to disability. My 3 year old niece is disabled and I am a physiotherapist working in the rehab setting. I get so frustrated just taking my niece out on the odd occasion at the adults staring at her and whispering to other adults, and I also agree about parents not teaching their children probably when they have questions. I can’t imagine how my sister/ other mothers manage it on a day to day basis, it must be so frustrating, I feel for you.

  9. by M

    On June 24, 2012 at 1:47 am

    I would just like to add a note of hope to all of this discussion about kids with CP being accepted by their peers. I went to school for six years with a guy who had CP, and it’s amazing how accepting other kids can be. The whole ‘shock and staring’ at the different person wore off pretty fast, I have to say. He was just one of the guys- we’re all clutzes anyway, and we joked that the only difference was that if he tripped or fell, he had an excuse! We forgot sometimes that new people couldn’t understand what he’s saying, because we totally could. Also, he was rollin’ in the ladies at grad- not because they pitied him, but because he’s a gentleman.

  10. by pedalpusher

    On June 26, 2012 at 6:31 am

    I really like how you presented what is still a reality for me – the fact that people stare – and my daughter is 19. It’s human nature to notice anything different. I would probably stare too, if we were not on this side of the track. But…it gets tiring. And I have never been the kind of person to use those moments as a teaching lesson. I admire parents who can. And I need to remind myself to keep my perspective in check because most of the time – yes, really – people are genuinely kind and do not intend to offend.