Passing

One day in my comment section, several people discussed the difficulty they face having a child that is “secretly disabled.” I made that term up, but I’m talking about child and adults who who don’t have outward signs of their disability–or those whose outward signs aren’t obvious.

For the first three years of Charlie’s life, we lived as secretly disabled. We pushed him in a regular stroller, he eats by mouth, blonde curls cover the shunt in his head and clothes cover the scars on his body.

But there were questions. Charlie could “pass” for normal, but not perfectly. His eyes have nystagmus (shake), he slumps and has trouble sitting up straight. He looks sleepy. So there were questions–lots of questions–and comments: “He’s so sleepy!” “Somebody’s sleepy!” or “Is it nap time?” It was grating. I could lie and agree or say nothing at all. I never corrected people–to do so would be uncomfortable–so I let it go, the whole time feeling like a liar and a fraud. That’s a lot to handle when you just ran to the store for some peanut butter.

For school, we ordered Charlie’s wheelchair. I take him to school in it and it’s his main mode of transportation when he’s there. Sometime we use it in restaurants or to go for a walk around the neighborhood.

With the wheelchair, we are out. No one asks if he’s sleepy. There’s no confusion if he doesn’t respond to a greeting or question. The world sees him as he is–disabled. The chair doesn’t change Charlie’s abilities. It doesn’t make him different in any way. But I love it (except for how much it weighs–I don’t love that). I love not having to explain or excuse ourselves. I love just being rather than faking something that we’re not.

I wonder about the people who don’t have wheelchairs, though. People who don’t have an option. People standing on the edges of who they really are because honesty and openness would make people uncomfortable. I wonder how many of them are out there and are they grateful they can “pass?” Or do they wish for their own version of the yellow wheelchair?

Kid playing

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Comments

  1. What a great topic! I am looking forward to getting Henry’s chair. He doesn’t hold himself up, he doesn’t make eye contact (CVI) he doesn’t respond to greetings, but he’s adorable with curly hair – everyone assumes that he’s just tired… Sometimes I wanna say, “No, he’s not tired. He has severe Cerebral Palsy!” My favorite is, “I bet you can’t wait for him to walk!” I don’t have the heart to say, “It’s not likely that he ever will!”
    I wonder what other families do when they don’t have a signal… I also wonder why people are so nosy? Oh, and why we are so protective of other people’s feelings… when our children are the ones experiencing some pretty awful stuff?

    • when someone says “i bet you can’t wait for him to walk!” instead of “not having the heart to say…” maybe you should just say “yeah. won’t that be great!” b’c you never know… maybe, one day, he will.

      • Good suggestion. I hope you’re right. There has been so much disappointment, that hope seems to be something that costs a lot. Hoping for the best outcome, while admirable, does not prepare me for the worst.

        But. I will try to keep a positive attitude….

    • Katy,

      I thoroughly enjoyed this post! So, much so, my blog today is about this post, and I just wanted you to know, I linked back to this post and your blog.

      Thanks so much for your thoughtful posts. I truly enjoy reading your blog!

  2. Great post on a very interesting subject.

    I have mild cerebral palsy. I have never needed the aid of a wheelchair and do not consider myself disabled. I am very fortunate.

    But I do have CP. It causes me issues in my life that I have to deal with, both physically and emotionally.

    When I tell people that I have cerebral palsy, the first thing out of their mouths is, “Well, you look pretty good to me.” Or maybe they will say, “You must not have it bad.”

    I just smile.

    Dream Big –

    John W. Quinn
    Senior Chief Petty Officer, United States Navy (Ret)
    Author of Someone Like Me – An Unlikely Story of Challenge and Triumph Over Cerebral Palsy

  3. oh my goodness, what a CUTE kid. I can totally see why people would lean in and make comments! (Even if they were annoying.)

    That sounds so tough. I’ve always wondered how people cope with that–watching those perceptions change and form before their eyes. That sounds so tough on you as a mom, and I could see it being difficult for your son too as he gets older.

    I have some chronic health issues, and none of them are particularly ‘visible’ (except I guess when I look like crap, haha) and sometimes I wonder how much other people around me are going through something that’s invisible to the rest of us.

    I love your blog! And thanks for this post.

    • I could have written this part:

      “I have some chronic health issues, and none of them are particularly ‘visible’ (except I guess when I look like crap, haha) and sometimes I wonder how much other people around me are going through something that’s invisible to the rest of us.”

      I pass for healthy most days, and people don’t get why I – a fit gal in her 20s – can’t do certain things. Even friends who know that I have rheumatoid arthritis and other health issues don’t always understand what that means. Sometimes I explain; sometimes I let the comments pass. It depends on the day and my mood (and by my mood, I mean I keep my mouth shut if I’m not in a good one because I know I’m not going to educate anyone well that day).

  4. I never thought of it that way. I guess I always assumed that people would want not to be in a wheelchair. I love your blog, it’s such an eye-opener.

  5. Our 110 degree summer made me keep the wheelchair inside and use the umbrella stroller out of pure laziness. Caleigh is at that in between age that she can still fit in the little light weight, mesh wonder. We get the “oh, she is so sleepy” “wish I could be sleeping right now” etc. etc. when she is in the stroller. My husband just started telling everyone “No, that’s just the way she is” and I’ve started using that saying too. The look of confusion on their faces is priceless. You can actually see the wheels turning. If they catch on quick enough they may ask more questions, but if not, then we’ve left them with something to think about. No labels, no diagnosis, just that it’s what our child does.

    Life is different with the wheelchair. The diagnosis is out there. The pity looks ensue, but that’s a whole different post :-)

  6. This reminds me of when Owen was around two, and we’d gotten him new earmolds. His first pair was bright green, and for some reason, for his second pair, we went with clear.

    The actual hearing aid being the color of his hair, and hidden by curls, and then the clear ear mold, made the hearing aids invisible. His ORL Dr. commented on how much she loved them, because they were invisible.

    That was the reason I HATED them. They made me feel dirty, like I was trying to hide this very important aspect of my child. I was ashamed of them, and went and got bright blue ones as soon as I could.

    I’m proud of everything about him. At the beach his scar riddled torso is on display for all to see. My hope is that he is as proud of all his battle scars as I am.

  7. I am one of those parents who has the child that almost appears normal, but not quite. It is so hard to put into words how I feel about it. Don’t get me wrong, I do no wish that my child could not walk or talk, that isn’t it at all. But because my child looks mostly normal she is expected to do normal things. She tries but her speech and gait are just not quite normal. People often look at her and then look at me like “Does she know there is something wrong with her kid?” If Anna were a little more disabled I feel like people might just look at her and say she is disabled and go on. Instead they look at her and then at me and then at her and then at me just trying to figure us out. I do not wish for my child to be any different but I do sometimes want to have a shirt or button made for her that says, “Yes, I am aware!”

  8. My cousin has two beautiful little boys. They are both bright and beautiful and friendly. One is already two grades above his level at 8 years old, the other struggles with autism. To see her out with them on normal outings is truly eye opening. The younger child uderstands perfectly how to act in social settings. He’s polite and funny and makes friends with adults. The older child can very easily be overwhelmed. A stranger will talk to him at the store and he’ll start screaming and fighting and acting out. My cousin doesn’t make excuses, she chastises him softly, but then holds him and comforts him and brings him back to earth. And you hear the bad parenting comments as people walk away. She’s over it now, she can let it slide. But it hurts to know how wonderful a mother she is to her boys and to have people judge her so harshly because of it.

    Luckily for him, though, he doesn’t understand the comments yet. As soon as he’s calm he’s back to smiles and inappropriate statements and touching things he shouldn’t. But you can’t lock him up at home and you certainly can’t change him. She just takes comfort in the fact that his condition isn’t as bad as others and that, for the most part, he can live a normal life.

  9. This comment really touched me – my little guy is 2.5 years old and I ALWAYS get the he’s so sleepy comments when he’s sitting supported in his (normal) stroller. I’ve felt the same angst. Do I say something? Do I correct them? They always ask him what his name is, and then comes the whole “he doesn’t talk, well, he doesn’t talk yet, well, he signs a few signs and says of a few words and he understands everything you say, but you know, he doesn’t talk talk”. ARGH! Did I just SAY THAT? It’s like I’m trying not to be a hypocrite, but putting limits on him at the same time which is NOT what my role is – it’s the opposite! I’ve never been able to figure out what quite to say without soliciting the pity looks, but still being truthful about who he is in respect for his person and all his wonderful qualities. It’s so much more just matter of fact with our friends and family. This is who he is. We love him as is.

    We have just ordered his wheelchair a couple weeks ago. I’m in a weird way glad to hear that this will stop. It’s just him – this is him. He understands you and wants you to talk to him not down to him, not give him that look like he’s a “poor little soul”. He’s an empowered little soul.

    I think I’ll just start doing what Holly does .

    Thanks for posting that. I didn’t know I wasn’t the only one… it helps.

    M

  10. Max has autism. When he was younger he ‘passed’ fairly well, but the older he gets the more obvious his differences are. When we have been going out to busy places or restaurants I have been been having him wear a blaze orange that says, “I’m not ignoring you I have autism” on it. Part of the reason is it cuts down on having to give explanations.

  11. Great post! I get the “she looks sleepy” comment ALL the time. Even from people who know Emily has CP. It drives me completely crazy! With strangers, I just smile and go on. With people I know I say, “She isn’t sleepy, she cannot hold her head up very well”. The wheelchair definitely does “out” you to the world. There is no hiding the fact that your kid is different. That can be good and bad. I am not a fan of the pity stares or even worse, the GAWKING. I have had people walk into things because they are staring at Emily instead of watching where they are going. That takes some getting used to! I do like the fact that SOME people will ask good questions when we are out with the chair, rather than “is it nap time?”. I just have to come up with better answers – especially for kids that ask.

    • I can’t believe people staring instead of watching where they are walking. People do that to Sebastian too and he has a regular stroller but he has glasses. Some people make comments about him being cute but the ones that run into polls I want to run over with the stroller! I’ve contemplated putting a sign on it that says ‘if you are reading this the please smile’. He’s a kid. Smile, don’t stare.

  12. we were the same with LJ. he use to have such a hard time in unknown public places and would always be fussy. we’ve had every comment from he must be tired to hungry to someone take that boy home and feed him! those last remarks always make me want to say WELL IF I DID THAT EVERY TIME WE’D ALL BE HUNGRY!

    I think even if we used a stroller now, we’d still be “out”. but people usually see past his disabilities (so far) in favor of his adorablness. :)

  13. I am one of those moms, too. My daughter is on the autism spectrum Thanks to intense speech therapy her language is now almost completely normative – unless you ask her a why question…still working on that. Her social skills are improving, but rigid. She has gone from being so aggressive that we were asked to leave our first preschool to now having only the occasional, still shocking, tantrum. Thanks to OT and gymnastics (the poor man’s private OT) she has pretty good motor skills. It is really hard to tell that she has any issues unless you are around her for a long time. I wonder if the differences will become more apparent again as she gets older, but for now we’re glad for where she is at except for those few shocking moments when they occur in public and no one understands because, “she was just fine a moment ago.” I used to hope we could just pass. Now I pretty much out us. Not immediately because I don’t want to scare people away, but I need them to know if something happens that it didn’t come from nowhere, that we’ve been working on all of this for years, and that she’s not a bad kid. I need them to be able to help their children understand. I kind of view our family as a bridge between the normative and more severe special needs. In fact, the other day my daughter interacted with some children who are in a self-contained program that shares facilities with her school. I think it is a program specifically for children with ASD. She was telling me about one girl’s communication book, and how she liked to swing. My daughter can relate to both of those, so she was quite comfortable spending time with this girl, then she turns back to talking about her classmates and their “silly bands’ (a local fad that I’m not sure yet if I am fond of it). She “fits” both worlds to some extent, and I think it’s kind of wonderful.

    • It’s funny you would bring this up because I often think about the prevalence of autism today and how that has opened up SO many people to the disabled. There are many people who know someone with autism and that, I believe, makes it easier for them to be open to other disabilities.

      • Even though more people know about Autism… it doesn’t really make it easier to be open about it. Most people don’t really understand the disorder and when your have a child that ‘looks typical’ it is a hard subject to bring up especially if you are afraid that the person’s treatment of your child would change.
        As usual Katy thought provoking post.

    • Wow what a topic!
      My son passes and some days I am not sure that it is a good thing. Because unlike KDL I don’t think he is comfortable in the world that we have thrust him in ( he is mainstreamed with a shadow)… he is a lovely, strangely social ok I will say likeable instead so friends have claimed him but the pressure to play with them overwhelms him. And he wants to stay home sigh. But we work with him and his socialbilty is improving by leaps and bounds.
      KDL it is wonderful that your daughter can be ‘comfortable’ with both worlds that is a testament to you and your daughter! hugs to you.

  14. Such a great post, as usual, Katy. I find it interesting that you are on the side where you WANT people to see Charlie HOW HE IS. I feel the same way. Therapists and Doctors are always surprised when I ask “When can we get Ben a wheelchair?” In our case, we have to carefully weigh the need for him to be independent with the desire to motivate him to walk independently.

  15. I don’t have a child with special needs, but I wanted to comment anyway. I just want to thank you all for sharing your thoughts and your perspectives. You have really made me think twice about how I interact with others.

  16. My one-year-old son has epilepsy and moderate to severe developmental delays. This is definitely a “hidden” disability as it is not at all obvious when someone first sees him in his stroller or in my arms–all they see at first is an adorable little boy. But I definitely get a lot of comments like “Someone’s ready for a nap!” I usually just smile and agree. I even use sleepiness as an excuse sometimes when he is not as active as the person expects him to be or he is slumping in his stroller. It was a huge relief to me when my son had an NG tube placed through his nose because then people could tell immediately that he was a special needs child and I had no explaining to do for any of the other very different things they might see. My son has a G-tube now but he still has a plagiocephaly helmet and that also serves the purpose. If only there were some ready-made excuse I could use when he has a seizure; I just say he has epilepsy and I guess that’s just just as well. Anyway, I had no idea these feelings were so common but I am glad to have company!

  17. We pass, or at least I think we do. We passed a long time because carrying one year olds or even 18 month olds in and out of places is not a surprise, and Hannah is petite, and distractingly appealing. If her brace is tucked inside her pantleg you won’t see it, but her hand brace or kinesio tape on her hand makes other kids think she has an owie. Now though, she appears to be a new walker who likes a silly streak in her walking. I don’t know where we go from here. It has taken me the entire past year to be able to answer the owie question without tears. Later on I want her to pass, because for her long term health and well being to be at the greatest level we can achieve, I want her walk to be perfectly aligned and therefore not likely to cause pain and stress on her joints. Now I am concerned that I shouldn’t use the stroller as wheelchair pass at Disneyland because we pass too well, and all toddlers get tired, but I know she will get exercise fatique, since she comes unglued at the end of every one hour outdoor PT session.

  18. Re: “sleepy” comments.

    Please, please, please don’t be hurt or offended when a stranger makes a “Oh, looks like someone’s a little sleepy. Naptime soon!” comment. It can be annoying to hear that repeatedly, but I think it’s just one of those little chit-chat comments that strangers make to be friendly. Tiresome, but innocent.

    • I’m not hurt or offended–I’m uncomfortable. Like when someone calls you by the wrong name and you’re not sure if you should just go along with it or correct them.

  19. I guess we are those people. Not because we are trying but because that’s just how life has been. We lived in Cairo for the first two years of Sebastian’s life. He was born in London, UK where you can get equipment, but in Cairo, not a possibility. But it was ok. We found a stroller that worked for him when he decided he wanted to be in a stroller, he preferred a baby carrier until just before he turned one. I remember how liberating it was to be able to walk down the street pushing him, it felt so normal. And people still mention the tired comment. You are right it is grating, but it it’s also easier to agree. But last summer Sebastian got glasses so now he gets a lot of attention, not always positive unfortunately. His glasses make us less silent I suppose. Now we are in Canada on a waitlist for seating. He will get a new stroller or wheel chair, whatever they think he needs. Just the next step in our journey. I feel like it will be more accepted to get on a busy bus with that rather than a stroller and everyone acts annoyed. But I am already noting the non accessible places around town and on public transport.

  20. I love the T-shirt idea “I can’t talk, but I understand you!” (So watch what you say!) Cj also got the sleepy responses. Drove me nuts too! We would have had a wheel chair a while ago if we had the right people helping us. We finallly found a great rep and Cj is waiting for his new wheels! It is taking forever to get and I can not wait! He is seven now and he really needs this chair for school, the bus and at home! We have a SN Pixi stroller that has worked great until now. Also my husband has finally accepted the need of a wheelchair! He has always had a problem with this. Now we are looking for a van with rear entry and manual ramp.

  21. I have given you the Versatile Blogger Award I would love for you to come pick it up when you have time.

    http://ishouldnthavetosay.blogspot.com/2010/09/i-got-award.html

  22. my 23 yr old son has adhd. I didn’t want to medicate him early on. Ritalin seemed to be the catch all drug. Chemical discipline or vitamin T (teacher). I also didn’t want him to think he had to take drugs ‘for people to like him’. We opted instead for diet and karate. Until he was a junior in HS it was manageable-frustrating- but manageable. Then he made a comment that set that one brain cell off in my head that thought he might hurt himself. so I took him to a psychiatrist- not an internist- and made him sign a contract to try this med for 30 days. At first he was really mad at me- but at the end of the 30 days he gave me ahug and said thanks. He is very smart. to talk to him you wouldn’t realize he CANNOT keep track of time if you paid him. it makes people think he is careless- sloppy. We’ve worked out a system where if there is a deadline, and he calls me, that is permission for me to be involved and call and remind him his paper is due or whatever. It will take him 5.5 years to get his BA. He pulled his gpa up from 1.2 to a 3.2 …but he experiences success at 3 classes a semester working part time and no ritalin. Ritalin makes him fell awful as it wears off and has negative effects on his appetite and sleep.
    so to the outside looking in- he looks like a bum.

  23. I don’t think we pass. On a weekend trip to Kansas City every OT, PT, SPED teacher and family member at the hotel figured out that Luke had autism. It was very refreshing to have the SPED teacher ask if she could help when he was having a total melt-down. It was also great to hear the “doing a good job” comments.

    We also get attention because all three of my kids were adopted from China and I am caucasion, “old”, and single to boot. I don’t notice the difference any more, I have no idea how many folks do. The same with Luke (almost 8) being non-verbal — I don’t know if other notice or not. If they do, it would seem to be a huge clue that there is something going on.

    I know people think it is cute when he walks behind me, hugging my waist with his head in my back. I’m guessing this helps him deal w/ light & sound. When folks comment I just tell them it is my weight bearing exercise.

  24. The sleepy comment is sooooo prevalent in our life. My daughter Sylvie has hypotonic CP, vision impairment and global developmental delay– and is 13 months old. I felt like I was not doing her justice by going along with the comment…even people who know about her brain injury make the nap time statement. Now, I say “no, she has a disability…” Matter of factly…just say it like I was telling someone where I bought my sunglasses. Some kinda look awkward and walk off, some look really sad, and others suprise me by entering into a conversation (one lady asked me if she could pray for Sylvie..I am not one to believe in the laying on of hands but hey, it couldn’t hurt). I kind of feel that I can’t complain about how clueless people are (and boy I do love to complain about that) unless I am willing to educate those who care enough to stay and talk to us. Word to the wise, if you are going to comment on someones baby..just stick with the basic “oh what a beautiful child” statement. No one will mind that!!!

  25. I have a bad shoulder and as a result, I can’t lift very much weight. I feel very embarrassed when I can’t so something relatively simple and watch my 86 year old friend do what I can’t do. I am sure a stranger must “tsk tsk” when they see her working and me slacking and yet she is far more capable than I. You just can’t see that.

  26. I’m going partially anon here, just because I don’t write about this EVER on my own blog, for the sake of my family.

    This is such an interesting and difficult question. I know it is not the same, but I have a mentally ill (schizophrenic) sister and grew up until I was 12 with a schizophrenic mother (my birth mother, who is different from my adoptive step-mother). There are times when my sister will “slip.” And it is so difficult to go any place, to live a semi-normal life with her because you want to explain why she act this way or says certain things.

    Have you ever seen a young child with a pin on their shirt that says something like, “I dressed myself today!”? It’s cute and also explains why they’re wearing some mis-matched clothes. I’ve frequently longed for a similar pin for my sister (and when I was younger, for my own mother) that says, “I’m schizo!” It sounds AWFUL, I realize this. But it is very difficult. And sometimes I think outwardly defining it would help.

    Of course, there are plenty of times when the complete opposite is true, too.

  27. I connected with your term “secretly disabled”. Cayman feels like my “secretly disabled” child. She appears almost normal – but not quite.

    At the grocery store Cayman sits in the shopping cart and most would never know that she is 2 1/2 years old and does not talk. She does not walk. She does not run.

    The cashier smiles at Cayman and she smiles back. Cayman’s tiny frame makes her appear younger and her ability to socialize with a wave or a smile makes people completely unaware of her deeper story.

    Then someone asks, “How old is she?”

    “Two” I will say. And on some days when I am feeling a little braver I’ll even add in the extra half. “She’s two and a half.”

    Because you see, sometimes when I mention her age her differences start to surface. But not always. Once a lady marveled over Cayman’s “good” behavior, “Wow, my two year would never sit that still. She would be climbing out of the cart to get down and have me chasing her all over the store. What’s your secret?”

    Oh what an ice breaker answer that one is. :)

    These things don’t hurt me to hear or the questions. Sometimes stares still bother me. But the part that I think about the most is my response. Honesty and openness sometimes makes people uncomfortable and it’s that uncomfortableness that I do not like encountering. So I feel the need for two goals to be met in such situations: 1.) To help bridge the gap of my child’s differences and a person’s understanding of her in a gentle way so they do not feel awkward or plainly weirded-out by her. For example when Cayman’s eye is patched for 3 hours of each day and we happen to be at the grocery store during that time and someone asks about it I use simple, common terminology to answer them by saying “She has a ‘lazy eye’ and by patching her strong eye gives the weaker one a chance to catch up.” That sounds way less scary and uncomfortable to hear than the medical explanation of lazy eye which involves the words “vision loss”. And 2.) If my Cayman does ever learn to talk and communicate with people I want her to learn through my example how to handle questions about her differences. Confidence and a kind response are such key elements in a happy life with differences. And I know that well because I sort of see myself as that “secretly disabled”. It’s something I don’t talk about much on my blog but when I was 12 years old i was in a car accident. The impact broke my spine and my spinal cord was permanently bruised. It left me with an inability to fully use my lower legs. I walk, I run, I do most things that others can do except skiing or ice skating, such things that require a lot of ankle and calf strength I am incapable of doing. You will not find a pair of high heels in my closet. :) But most would never know how much work it takes for me to hold my little Cayman and walk at the same time. It takes a lot of concentration, requiring my brain to cue other muscles to work harder to over compensate for those that can’t fire. In high school my class mates had a hard time understanding why some gym activities were so difficult for me and medically necessary I could not participate. They viewed me so “normally”. And while that seems positive it left for some awkward explanations as I found myself in situations trying to recoup my reputation of being a slacker and lazy. But the more I tried to defend and change their perspectives of me, the deeper their negative views of me went. I learned it was better to be more sensitive and affirm their point of view than to let my insecurity rule. If I was confident of me others usually came to be too. And that is what I want to teach Cayman how to do in her life. It holds the key ingredient to “fitting-in” and finding a place for yourself among people.

  28. I am reading this at Jill’s recommendation, found via her blog. Wow. On the post, on the comments. Harmony is totally “secretly disabled”, as she is 15 months, so still in a stroller, has not much for hair, so looks young still. People think she’s a really big younger baby. Until they ask her age, then there’s the “Oh…” factor. The #1 comment we get is the sleepy comment, and I admit, it drives me bonkers. I realize it’s meant as an innocent observation, an icebreaker, a bonding experience in some way. We have gone back and forth with not replying, replying that “she’s actually pretty awake right now”, or saying she can’t hold her head up. I struggle with not appearing ashamed of Harmony, because I am not, but also not feeling like I owe a stranger an explination about my beautiful daughter. She is tube fed, so when we feed her in public, then people get that something is off. But “she looks normal”. Well, except for her lack of social interaction, no smiles, no playing with a toy. Just sitting in her stroller, relaxed back, an spacing off. I understand the idea of being “outed” by being in a wheelchair, and I actually think I look forward to it. I want the “I’m aware!” shirt also :)