Monday, June 16, 2014

Staring at Special Needs

Today's blog was prompted by a Facebook post I read the other night. It was from a fb friend whose grand daughter has just in the last year or so, developed a condition that has caused her to lose her eyesight. The little girl is fairly young and is now having to use a white cane to get around. This I know has been hard on her and the whole family as they are having to transition into the world of special needs. The grandmothers post brought up something that I don't know that I have ever spoken about on here before....the public's reaction to those with special needs. 

Quite frankly....after five months in the NICU with David and not knowing if he would live past those first five months, I rarely worried what anyone else thought of my little guy. However, as he grew older and there was a need for orthotics, a wheelchair and a walker, people were obviously starting to take notice. Add to that...that he was absolutely adorable and very loud due to finding the world outside our house very exciting to him......and yes, there was no way people weren't going to stare. I learned early on though that some stared because he was cute and a little ball of energy and they simply just couldn't help themselves. Some stared because he was very vocal which caused them to smile at him and sometimes even giggle while others it obviously irritated. Not everyone wants to shop at Walmart with a special needs child waving and saying "hi!" all through the entire store. As he got older though and his disabilities became more pronounced with his walker, wheelchair and actions....then people did stop and stare at times. Because I had years to get used to both my childs disabilities and the reactions of others, it rarely phased me. Honestly, most of the time the reason it didn't bother me was two fold. One was that I was usually too busy paying attention to David, what I was doing and whoever else that was with me, that I didn't have time to worry about who was watching or staring at us. Second, it is human nature to stare at that which we view as different. I have done it. Strange hair, strange outfit and yes even someone with special needs, an injury or a defect....I too have stared. It is not out of rudeness....but sometimes you have to take a second or even third look for your brain to process what you see. There have also been times when people stared because David was just down right loud. I would try and quiet him and sometimes like any kid he would quiet down, but if he was excited....then he was letting me know it and where other kids could talk a mile a minute and tell you they are excited....David could only make noise and get louder as his excitement grew. What are you to do? He is an excited kid!

I learned early on that David was going to be a stare magnet. I also learned that most people, including children aren't being mean when they do it. Kids especially are honest creatures whether they are speaking or staring. A kid will tell you that your hair looks funny, your butt is big or the dinner you made is yukky. They are also just as honest when they stare at a kid that looks different than them. If we tell them "not" to stare then we are perpetuating the idea that there really is something different there and that in itself causes kids to feel like there is something wrong and uncomfortable about people who are special needs. I learned this when I started David in the Early Childhood Education program in our school district when he was just three years old. The general education kids were put in the same classroom with the special education kids and they were taught to work together, play together and understand each others differences. This was amazing because the kids learned to love David because they understood that deep down.....he was a kid just as much as they were. That has carried on through the years.

After I understood that kids were honestly more curious about Davids orthotics, his wheelchair or why he didn't talk..... much more than they were trying to be rude or insensitive, I decided to be proactive and use stares as teaching moments. Many has been the time when I see a child or even at times an adult staring at David that I will walk right up to them with David and say, "Hi! This is David. I saw you watching us and I thought you might like to meet him." Then I will go on to explain that David has Cerebral Palsy and that is why he needs his equipment and why he can't talk well. This usually opens up a dialog, especially if I am dealing with a child. They will ask "Why can't he talk?" or "Why can't he walk?" One kid even said, "His wheelchair is cool. Can I ride in it?" That is when you realize that these kids are just curious and in learning mode. To make them feel that they shouldn't stare or ask questions is the same as saying your child has something to be ashamed of because they have a disability and therefor you should politely avert your gaze, ask no questions and most of all.....make everyone in the room uncomfortable. It instantly molds a childs mind and perceptions towards disabilities and the disabled.

For those of us who have dealt with disability from the beginning of get a lot of experience with the art of dealing with it. First and foremost you get rid of your own prejudice and discomfort over disability and believe it or not....we all have them. Yes, even you at first have your moments of embarrassment that your child has a disability and is not like the other kids. That is when you find the stares and the questions intrusive, rude and even sinister. Often though you will find that this is your own prejudice and yes....embarrassment....being projected onto them. Once though you realize that this is just a part of the person you adore and that he or she is much more than their disability, then you quickly replace that embarrassment with pure pride that this is your child and he/she is amazing. That is when these uncomfortable moments easily become teaching moments so that others learn that our differences and disabilities (and again...we all have them) are only a small part of who we really are.

I truly feel for those who are thrown into disability suddenly. Everything they have known up to that point changes and because they and their family are not given an instruction manual on how to feel, act or even move forward with their new found way of life, I am sure it is tremendously difficult. The funny thing about disability though, is that it has brought out amazing strength, growth, empathy and achievement in many where disability was thrust upon them. A prime example is Amy Purdy who lost both of her legs from the knees down. Her life was so full of potential and promise until an illness caused her to lose her legs. Rather than let that define or defeat her though, she made it push her forward and she has become an amazing athlete and just recently a finalist on Dancing With the Stars. And I will tell you a little secret....I stared! I recorded every episode and stared as she danced on those prosthetic legs. In fact I would rewind and stare some more each time she danced. I was fascinated by how beautifully she danced on those interesting "feet". Each time, tears would come to my eyes as I could only imagine how difficult her journey had been and how in all her beauty and glory, she was single handedly putting a new face on disability and yes....special needs. She was using her disability and the worlds ability to stare as a teaching moment.....and she schooled us all!

So yes.....there will be stares, maybe even whispers and moments of awkwardness when you have a special needs child. But then can have those same reactions if you walk out of the bathroom with a piece of toilet paper on your shoe or your dress stuck in your panty hose. I speak from experience. The key is to take those moments with your child and make them count. By introducing David at these times, I am teaching others about disabilities and teaching David that by being proactive about his disability he can break down walls, avoid misconceptions and in the end....those people may still be staring, but with very different eyes.


  1. All I can say is thank you. This brought tears to my eyes and will make me stop and think the next time I stare.

  2. I too have stared once or twice at this young man. Not because he is different or by any means "weird". I stare at him because, well, for one: he's so darn cute it's hard not to feel your heart melt by just seeing his smile. Two: Because I can think of several bad days where he somehow managed to make me change my entire viewpoint of the day. And three: No matter how much things may just downright suck, he's always got a smile on his face. No, I don't stare because he's different or strange. I stare because he inspires me. I stare because at times, he's more of a man than me. And I stare because, honestly? I look up to my little brother.

  3. You put into words so much that I can't. My child was in a car accident and is now confined to a wheelchair due to a brain injury. The doctors have no idea how much he will come back to us but for now he is special needs. You talk about embarrassment and I have felt that. I would never have put that into words or even admitted that had I not read this. You made it sound like it is part of the process and that makes me feel so much better. I love my son and I will thank God he is still with me regardless of whether he never gets any better or not. Knowing that I am not a horrible parent for not knowing how to feel about stares and comments makes me feel so much better. Thank you so much for this. This gives me a new view of a whole lot.

  4. As a new parent to a child with special needs its so nice to hear your honesty. Of course we don't yet know the extent of what we are facing, only time will tell. But even with that, I have thoughts and questions sometimes that I never even dare to say out loud as I feel it would make me seem like a bad person or parent - and knowing that it's okay and its all a part of the process is comforting. As time goes on I know it will get easier. Thank you.

  5. Lisa, I was in the Derby Wal-Mart about midnight several years ago. For the most part, it was me and the employees. Suddenly I saw a lady with the child out of the Cher/Sam Elliott movie, MASK! They didn't see me and yes, I stared! (This is one of my very favorite movies of all time.) I think I actually looked for Cher and Sam!!! I thought about it later and realized that my perception had been that this disease the movie character had was fictional. But, there it was in real life only a few feet from me. I had to argue with myself about whether to go up to them and talk to them. I so badly wanted to. I actually wanted to talk to someone with this horrible "disability" and learn all I could from those people who lived with it. But some part of me warned me that they were in Wally World at midnight for a reason...PRIVACY! On a lighter note, I spent a day last week shopping. By day's end, at Gordon's I think, I had to wonder how much enjoyment Mothers get from putting up with screaming kids while they shop because I was getting NONE. One Mother has no idea how close she came to pushing me over the edge when I saw the source of the screaming/crying was not one, but 2 kids about 4 and 5 following her - no apparent disabilities that a good a** whipping wouldn't have helped (and I would gladly have enjoyed starting with "Mom").The young man at Wal-Mart that midnight was bothering no one - just shopping with whom I presume was his Mother. Somehow I got off subject: Yes, I stared but can honestly say only for an instant because I was so interested because of the movie and I had so many questions. I applaud you for sometimes stopping and introducing David to those who stare and giving a brief explanation about him. Do you read obituaries? When I read one about a teenager or a 20-30 year old, I am so anxious about the cause of their death at such a young age. Perhaps not the best analogy but with some similarity.

  6. You have hit the nail on the head here. As a special needs parent you have to swallow your pride and forget about what you view as normal. From day one you have a new normal with these kids. I love that you are not afraid to call a spade a spade. This is one of your best blogs of all time. Thank you for shedding light on this. I think it will make people on both sides of the special needs spectrum understand it all just a little bit better.