The First of Many

A lot of raising Charlie has been speculation. In the beginning I speculated about how disabled he would be–how the damage to his brain would effect his body. Now that he’s older, I speculate about what he’ll be able to accomplish and even what’s bothering him when he cries. I also speculated a lot about what to tell people who are curious about Charlie’s disability. Adults I’m fine with, but I never knew exactly what I would say the day a child asked me why Charlie doesn’t walk or talk like everyone else.

Well, Saturday I got my first go at it.

I should back up a bit and explain that my husband discusses Charlie’s disabilities on a need-to-know basis only. He might say, “my kid has issues,” but he neither invites nor encourages open dialogue. Actually, he’s that way about everything, but I find that it’s awkward with regards to Charlie because we end up at parties where people are asking him why he won’t go run around with the other kids. Gah.

So Saturday we go to a party at the boss’s house. There were at least thirty children there–mostly ranging in age from three to nine–running this way and that in their crazy costumes

An executive decision was made by my husband to just show up in the wheelchair. From his perspective, it would save a lot of conversations–hi, we’re in a wheelchair, we’re disabled, please don’t expect me to run anywhere any time soon.

I’ve pushed Charlie a lot of places–stores, restaurants, malls, schools–none of this quite prepared me for the frenzy of bringing his bright yellow wheelchair into a crowd of over-stimulated grade-schoolers. The buzz was audible as we made our way across the yard. In particular, two tall, leggy nine-year-old girls headed straight towards the chair as if magnetized–one shouting loudly to the other, “what’s wrong with him?”

Whoa.

boy in wheelchair with mohawk

Crazy Hair Day at School

I felt myself bristle like a cat when I heard that one. Let me tell you something–any of you who read this and don’t have a kid with special needs–I honestly do not think that there is anything “wrong” with Charlie. I’m not telling you that to make you feel better, and if you pressed me, I would, of course, admit that he has several ongoing medical issues, but wrong? No. He is exactly as he should be. Really. I view these things as facets of him and not as things to be “fixed.” Like a kid with crooked teeth or allergies, I am aware of and monitor his issues, but I truly do not see them as defects–they are just part of who he is.

Anyway, I, of course, did not clobber said nine-year-old, but then her friend approached me. She was the daughter of one of Hubby’s co-workers, a sweet girl with a big heart, and she asked me “Is that your son?” and then, “umm. . .is he. . ummm. ?”

Boy sitting in wheelchair with mohawk

That’s when teacher mode kicked in. I prompted her, “are you asking about his disability?”

“yes”

“he has cerebral palsy.”

“Oh. What’s that?”

“He was very sick at birth and now his legs don’t always do what he wants them to do. His arms work pretty good, though. He can’t talk either.”

“Oh. OK. I’m sorry.”

“Don’t be. Really.”

I probably could have handled it better and I’m sure I could have handled it worse. It wasn’t a perfect answer, but it was good enough for the moment. If I’d been better prepared, I probably would have taken a moment to explain to her that you don’t need to tell someone that you’re sorry and maybe suggested a better response.

boy in wheelchair with mohawk

Children are, by nature, socially awkward–they haven’t had every lesson seared into their brains just yet. No time like the present to start teaching them about disabilities, getting them familiar with the language that surrounds them, and letting them know it’s OK to ask about strengths and weaknesses. Is it hard to deal with the bluntness of children sometimes? Absolutely, but I taught teens and pre-teens for years, so I know that their question don’t come from a place of malice–they come from curiosity. I’d rather them ask  questions and be interested than have them taught to look the other way when they see someone who is disabled–even if it is a little hard on my heart.

Few people sign up willingly to the parents of the disabled. For many of us, raising a child with disabilities is trial by fire with us figuring things out as we go along.  I’m not great at this stuff, but I’m working at it and just hoping I don’t mess up too badly in the process.

How do you handle it?

Related Posts Plugin for WordPress, Blogger...

Comments

  1. I think you handled it beautifully.

  2. It gets so much easier with time. You are doing a great job and will learn with time what feels right to you and your husband.
    Claudia is able to answer most of the questions herself now. She always has a following of young boys that are interested in wheels and machines. She was her little brothers motivation to crawl.
    You are right in that the other kids are just curious and it is nice that they don’t ignore him.

  3. I think you handled it really well, Katy.
    I do have a question- the image of the 9 year old shouting “what’s wrong with him.” to her friend is very jarring, but it made me realize that I’m not sure of the right way to inquire or to tell children how to inquire about someone’s disability. As an adult, I’d probably veer on the side of not asking a stranger (and I think I learned about Charlie’s cerebral palsy through a series of conversations with you as we got each other better- but I’m seriously hoping I didn’t ever say “What’s wrong with Charley?” because I can’t remember exactly how that conversation went.) but I think that kids will ask and therefore it would be good to know what the best wording is for them to use.
    Does that make sense?

    • You make me laugh, Shelly, because I distinctly remember you handling the question very well. I think that from adults I would hope they would ask something like, “what type of special need does he have?” or “may I ask about his diagnosis?” Although you are correct, most adults wouldn’t ask a stranger. From kids, I’d be happy with, “why is he is a wheelchair?” or “what happened?” or even “is he sick?” I’m really not that picky and while I bristled at the wording, I would answer any child who showed an interest in Charlie.

  4. Oh and I love Charlie’s hair!

  5. Heather Dautrich says:

    AWESOMELY SAID! Your son is absoutly adorable. He reminds me of my son. My son is 6yrs old and has CP as result of a traumatic brain injury at the age of 13 months. I think he is an awesome kid. He continues to over come obsticles everyday, he and his brother also special needs are my world. I at times wish that they didnt have the medical problems that they but I would not trade either one of them. We try to make sure that they experience everything life has to over. If this is your first post welcome to the world of special needs blogging.

  6. sounds like you’re doing just fine when it comes to fielding the questions. We didn’t have an extended period of time with the “what’s wrong” questions, since our daughter died at 17 months, but we did have to deal with having to explain why big brother (who was 3 at the time) would metion his “little sister.” It got to the point where we had to brief teachers up to about third grade so they understood he wasn’t confusing his then-little brother and such. Now *that* got awkward, to say the least. :-)

  7. Katy,

    You used this as a teaching moment, and I loved the way that you did it. Kids are inquisitive creatures, by nature, or nurture. Next time, this child might approach a child and not be so nervous and be able to befriend them for who they are, and help pass that education along.

    I think that you have to follow your heart, be true to you. If you are comfortable sharing, great. If not, it really is no body’s business. I think that it takes strength to take those first steps into the unknown, is scary, but you did it, and it does get easier.

    And that picture of Charlie is adorable, but then again, I love them all!

  8. I think you did a great job! It’s a hard question to answer succinctly. Katie “issues” are subtle (at least looking from the outside) and I’m never sure what to say. Sometimes I end up rattling off all kinds of things and provide way too much information. I need to find an elegant answer.

    • I do the same thing–I start talking about Charlie and the next thing you know, I’ve gone on for like a week about every little thing.

  9. Great post! I look forward to more! My little sister had a disability and now I work with many people who have varying disabilities. I encourage my children to ask and talk to everyone. Often when they ask me, we talk about how everyone is different and everyone has different talents. We relate it to all the things they do differently, they usually are happy with this answer and move on.

  10. two parts. My friend’s daughter had severe CP. She could hold her head up, not roll over, not sit up. After I had met them a few times, I simply asked Joy “what is Ellie’s story?” We all have a story. I was interested in Elli’s.

    My oldest has Autism, ADHD, dypraxia, hypotonia, all caused by 22q duplication (extra genetic material on her 22nd chromosome).

    When I found out, I was expecting my 4th and my husband told my MIL her response was “Well, what are you going to do if there something wrong with this baby like there is with Lauren”

    I said “there’s nothing wrong with Lauren. However, I do believe there is something wrong with you for asking a question like that”

    My MIL do not see eye to eye and she has made several very negative comments about L.

    • Kristin-I think that is a perfect way to ask someone and thank you for sharing it.

      Your MIL? Well, sadly, I think there’s a whole generation that thinks that way. I have some super-sweet in-law and my parents are great, but many other families deal with the same thing.

  11. Charlie’s hair is AWESOME!! Love it!

    I get questions from some kids like, “why doesn’t she talk” or “why does she wear those things (braces) in her shoes?” I think questions are important because they’re louder than whispers. Plus, this way they get the real answer instead of just guessing.

  12. This article has PERFECT timing. My son took all his equipment to daycare today. It is also where I work. All the children were quite fascinated by his walker and his adaptive chairs etc. I was braced for the worst, up until now they had just considered him a “baby”. He only sat in the infant/toddler rocker, only drinks bottles and doesn’t talk. He appears younger then he is. I wasn’t sure I was strong enough handle inquisative preschoolers and toddlers asking just THAT question, “what’s WRONG with him?”. However they warmed my heart. They were so proud to see him walk. They CHEERED for him!!! The only difficult question I had to answer today was “Why are you crying?”, and there were simply no words to thank them for what they gave me today.

    • Gosh, yes, Charlie has had a similar experience at school–the children are excited when he does things. I’m not sure when people become SO worried about the disabled that they fail to see how interesting they can be.

  13. when my daughter Hannah was little, I took her to a local horse barn. There was a group of special needs pre school kids there on a tour. Hannah watched the kids for awhile-and then burst into tears. Body wracking sobs. When she could talk- she asked me “does it hurt?”
    My response was I don’t think so- but we can ask the lady…
    So we went up and said hi and Hannah asked her question….
    and the lady answered in words of one syllable…introduced the little boy-he had a trach- and Hannah was noticably relieved that it didn’t hurt- she held his hand as we looked at the rest of the horses.
    to her – he was just a kid like her.

  14. Well done for not clobbering the nine year old girl :) Who knew how much you would want to some day?!! I do hate the word “wrong” too…but really, if most adults can’t find a better way to phrase the question, children aren’t going to either. Still gets me instantly wanting to poke someone in the eye though. I do like Kristin’s “what’s her story?” though….a much more pleasant way to find out what you want to know. It is hard to know how much to attempt to explain to children when they ask though. The ones who stop and stare are still the ones who bother me the most though. I told Gabe we should teach Avery the phrase “Take a picture, it will last longer”, and he said maybe we should just give her a stack of pictures or herself to keep in the bag on her walker so that she can just walk up and give a picture to the kids who stare!! Made me laugh when he said it, but now I’m thinking it might not be such a bad idea…!!

  15. I had a gymboree instructor ask me “What’s wrong with him?” And I fought the urge to laugh in her face.

    I’m 100% with you that my kid with issues is perfect and there isn’t one thing that I consider wrong about him (ok, except maybe the stench, boys are gross man).

    I LOVE the innocent curiosity of children. Some adults should take a lesson from them.

  16. Ruby McGill says:

    Actually, I love to be asked why my child is in a wheelchair. I usually tell them that her legs don’t work like theirs do, because she has spina bifida. Then I tell them that they are lucky that they can walk and run, and will add some of the things my child loves to do, that they would like, too, so that they can see that they are more alike than dissimilar. However, last week when a child asked me why my child was ‘grumpy’ I couldn’t tell them that an encysted fourth ventricle is the cause of incredible pain, which we endeavour to control, all the while knowing that one day it will end her life.
    I think when a child asks ‘what’s wrong’ they are not passing judgement, but rather wanting to satisfy their curiosity, and I think this is a healthy thing.

    • I am, by nature, a teacher. I was actually surprised to find myself offended by the comment–after years working with teens, I thought it was impossible to offend me.

      I’m sorry to hear about your daughter’s pain–that is such a difficult thing and I cannot begin to imagine how you cope with that. I wish I had something better or wiser to say, but I don’t. . .

  17. Oh my goodness…. he is too cute! I love the pic at the end with his fro-hawk! What a gorgeous boy you have there!

    I really wish parents without special needs kids would teach there kids about ours. I had started a carnival awhile back trying to connect special needs and non special needs parents together… it flopped faster than a fish. Special Needs families participated but non-special needs families just didn’t “get it”. But I guess before I had my son I didn’t spend my time teaching my kids about others either. My have I changed. It’s truly sad it took that though.

    • We have a couple of events in our area for families of children with disabilities and regular kids as well and they are both heavily attended. I think a lot just depends on the mood of the community–ours happens to be very open and awesome with the disabled and that really helps. There’s a huge church here with a dedicated ministry to families of children with special needs–I think they help set the tone for a lot of people.

  18. Loooove the hair. Gel? Mousse?

    The kid’s questions are the hardest to deal with. Both because they are so blunt (even though, as you say, they spring from curiosity, not malice) but because they trigger your own hyper-awareness that your child is different than they are. I’ll admit, I have spoken to nosy kids with a bit of edge in my voice. Mostly, I wish their parents would jump in and say something too!

    • Pomade!

      I think an edge is OK–kids are pretty resilient. Parents? ahhhh, well, I think half the time they’re as curious as their children.

  19. Great things to think about for teaching my kids. I tell them we are all different but not sure how they would question in that situation. I probably have said this before but you are such a great teacher! Love the crazy hair!

    • Thanks, Nora. You know me, I’m always trying to figure out how to show and teach people–even though I’m not in a classroom any more.

  20. Probably not well. I tend to hit it straight on and offer to much info. I just want to get it out there and get it over with.

  21. Oh and then I go onto rave about how sweet, smart, etc she is. Kinda sickening. I need to pull back a little. btw…love the mohawk!!

  22. Being caught off guard always leaves me speechless. I think you did just fine. You saw their curiosity, took control and gave them answers. I always tell the kids what my daughter’s name is and that she likes it when kids say hi to her. THey usually look at her, smile, and say hi. After that, everything is fine.

    It does get easier, and you will be able to read the mood of the kids and then give them what they can handle.

  23. I think you handled the situation well. I struggle with how to explain it to kids in terms that make sense to them. Sometimes a simple answer is all that they really want so I have to fight the urge to ramble. I agree wholeheartedly that there is nothing wrong with Charlie. Whenever anyone asks what’s wrong with Emily, I usually start by saying there is nothing wrong with her and then go on to give my explanation. I would definitley rather have questions then staring and whispering.

    • YES! Questions are better than whispering and staring! I much prefer one over the other–when I see the whispering and staring I feel like I should go over and say, “what? do you have a question?” but I’m afraid they might find that offensive.

  24. We actually just ran into this a couple days ago at a Halloween party when a child asked “What is that thing in her head and why does her head have a point?” Since it came out of the mouth of a 5 year old I wasn’t bugged by it and I knew she was just being curious. Plus, like your title, I know this is just the beginning of questions. However, I sometimes feel odd because everyone seems to get quite and tries to overhear what I am going to say. Her mother had a mortified look on her face and was giving her daughter the “look”. Out of nowhere my 4 year old replies with, “We all have water in our brains but Lexie has more so the shunt (points to it) carries it down to her tummy and then she pees it out. Her head still needs to grow so that is why it looks weird. She is different but we still love her case she is cute (grabs her cheeks). Come on, lets go jump on the trampoline!” To say that I was in shock is an understatement. I have explained Lexie’s condition to him but I never thought he would of been prepared to answer other people’s question. I was grateful for him that day because he explained it easy enough for the little girl to understand and will continue to be grateful because I know in the future he will be there when I am not. Sometimes, I feel that when someone asks me a question regarding Lexie’s condition that I give way too much information and get a weird vibe, like if I crossed the line. I think people are nosy but then when you tell them, they get that pity look in their face and end up regretting asking the question.

    You handled your situation great and I know you will find even better ways on handling rude comments. I look forward to those post because it may give me a few pointers.

    • Sometimes I think that the kids are SO much better about this stuff than we are. I hear you on the too much info. Hubby and I realized early on that people want you to tell them that’s everything is going to be fine. Even if it isn’t true–for some reason they really want to hear that. I wish there was a way to say “my child is always going to be different, but we’re fine with that.”

  25. Hannah can pretty well pass for problem free unless her braces show, other wise you might think she is doing a silly walk and is left handed. We are currently doing constraint therapy, and I was feeling incredibly stressed before it began, partly because many families drop out because it can be really hard on a frustrated toddler who can’t express themselves well, and partly my stress was about a million reasons I didn’t really understand. Now that we are in the thick of it I realize one part was the questions. I have literally now answered thirty five people, some who know us well, some who know us vaguely such as the other parents at our day care, and some from total strangers, like trick or treating tonight. Mostly the question is “did she break her arm.” I am bursting with pride that I never once cried to anyone except those who are closest to me, and then I am crying because I am so proud. I’ve been answering “it’s a constraint cast – we constrain her stronger arm to make her do more with her weaker arm. It is like eye patching, with kids who need their good eye patched so their weaker eye learns to step up.” I think everyone has known someone at some time in their lives with an eye patch, and almost no one goes on to ask why she had a weaker arm, although some do. But, I can now tell a stranger I have a duaghter with CP without crying. But if if whip out my camera to show a video of her walk, or her grasp, or just her cuteness, then I do cry, and I really hate that. So here I am all enlightened and shit, but once my stepson was mimicking her butt scoot before she could crawl or walk, and I had to leave the house for a few minutes because I was so angry. If and when I hear mockery I will likely commit a criminal offense. Stupidity I can deal wih but cruelty I will punish, and my tongue lashings are pretty well able to reduce a person to tears. I am kind of afraid of me, and I hope I can do this . . .

    • Ginger-I can be pretty tough on kids who are cruel as well–especially if they’re old enough to know better. You can definitely do this–and along the way you will be teaching Hannah all about herself and her own strengths and weaknesses. Parenting is way harder than teaching and for me, it’s because as a teacher I could be objective and detached, but with Charlie I’m over-the-top emotional. Nothing you can do about that!

  26. I have had several parents whose children are in Elisabeth’s sunday school class at church tell me how grateful they are that their children are growing up knowing Elisabeth. Because Elisabeth is just Elisabeth to them. They accept her and love her. She is not just the girl in the wheelchair who can’t do anything…she is their friend and they all treat her with such love and adoration. I am so grateful for that!

    As fas as getting the “‘I’m sorry’ comment…we get that all the time. And we always tell people…’don’t be sorry…we feel so lucky!’

    • Lisa-when I describe Charlie’s school situation to people, I usually mention the fact that he will start attending some class with “regular” kids next year. I always add that this is so he can be exposed to typical children and how they behave. Many, many times, people have finished up with, “and so they can be exposed to him,” which I think is fantastic. I expect people to be fearful of the disabled and then they express something like that and it warms my heart.

  27. I don’t mind questions about Luke (8, 2nd grade, autism, non-verbal). Usually when I need to answer/educate is when I can’t becuase autism is rearing its ugly head in the form of a royal meltdown. I really have a hard time explaining to little kids — how do you explain autism?! The non-verbal isn’t near as hard. To kids I just tell them he can’t and then explain how he uses his hand (ASL) or pictures.

    Now that he is in 2nd grade the other kids are really starting to understand Luke. They cheered for him and chanted his name in the Halloween races (results in big smiles by Luke). They also love learning some sign language so they can be like him.

    What really gets to me (and I can’t do much about) are all of the “you are a terriable parent”, “what a spoiled child” looks I get when he does have a melt down. I’m not (at least most of the time) and he isn’t — but that isn’t the picture.

    • It shocks me that people still behave this way and yet I see it–even on the Internet. If I see a kid having a melt down, or even if I just deal with an odd adult, I remind myself that I have no idea what a person’s story is. In this day in age I have no idea how people can be completely unaware of Autism and Asperger’s.

  28. When children ask me about Luke (3 1/2 with a white matter disorder) I try to keep it simple and tell them that Luke has a boo boo on his brain that makes his body work a little differently than theirs but that he still likes to play and “talk” to other kids. It’s simple and usually is enough for small kids. It’s so very difficult and you’re not alone…we’re all trying to figure out how to navigate this road.

    • Cheryl–I’ve heard that description before (boo boo in the brain) and thought it was perfect for small children. I also like that you mention some of the things your son likes to do–I really think that helps.

  29. Aweomse – amazing – brilliant. And I’m a kindergarten teacher… I know. :)

  30. I think you handled it beautifully. I believe if we let children be curious about individuals with disabilities and honestly answer their questions they will grow to be adults who are not embarrassed or awkward around someone with a disability. I am the mother of a perfect 23-year-old daughter who also just happens to have autism and be non-verbal. When I’m not Annie’s mom, I teach preschool.

  31. Thanks for sharing your experience with us. I think it was truly helpful. My daughter is the type that would run up to you and ask a lot of detailed questions because she is truly interested. I am the type of parent that would be standing there awkwardly not knowing what to say or do in this situation. I think you handled it beautifully.

    I think when people ask questions like `what is wrong with him?` bc they would like advice on how to interact with your child. It sounds like they are interested and curious in a really good way. The disability is kind of like an ice breaker. Sometimes they may sound rude or too forthcoming. My take is that people talk like that because they dont want to make the disability a pity thing. They want to be casual about it. I would not take offensive to it. People do it to visual minorities all the time. I get people just coming up to me without a hello, totally out of the blue and asking me whats my ethnic background or people telling me how much they love Chinese food. Im not Chinese. LOL.

    I love his hair! He is really c u t e . Reminds me of Tin Tin.

    • That’s pretty hilarious about the Chinese food.

      You are right, I would so much rather talk about it than not–I’m still just trying to figure out what to say! But I am grateful whenever people try–even if it’s crazy awkward.

  32. I feel the same way. No one has asked me this but I know my response will be “There is nothing wrong with him, he was injured as a baby” tweaking it according to the audience.

  33. Katy, I love your blog and I love your honesty. Charlie is gorgeous. We too get the ‘out there’ questions people ask when you aren’t ready with an answer and I always think of great answers in retrospect but at the time I am less than clever putting something together, on the hop as it were. I have a 5 year old in a wheel chair, and on alot of levels he is just how you describe Charlie. I have a profoundly deaf husband who doesn’t accept Timothy as he is – would prefer he was deaf that having CP as if you are given a list of preferables to choose from. But thats a whole nother story. Needless to say I am the one left to answer the questions of folk. The other day I had to take him to the ED – popped him up on the bed and the doc says “he’s skinny, does he have something else wrong with him?” duh. I had an answer for that one – it wasn’t complimentary with regards his skill as a doc either. Oops.

    • Doctors can be some of the worst! I’m like, “read the chart!” I think my husband loves Charlie just as he is–he just doesn’t know how to talk about him. He’s kind of typical man–a little disconnect between his mind and his mouth.

  34. Katy, I think you handled the situation very well. Kids are good at questions because they do not understand that children can have disabilities and when they become older they can have a better grasp of what is going on. I think the explanation you gave the child was at a level she could understand for a nine year old.

    I really enjoy your posts as it is the first time reading it and love the stories you have told about the thematic units. It seems it can be difficult at times to teach Charlie but I think the activities you are choosing for him are very neat. I look forward to reading more post on the blog.

  35. Thanks for sharing! I see how difficult it can be to decide how to explain things especially when not knowing individuals level of understanding with disabilities. Me personally I use to work a lot with cerebal palsy patients for a group of athletes called the Hurricanes so I would never personally ask the question but seems like something hard to understand.

    Keep up the great work!

  36. We are still learning the INS and outs of this very thing. We recently adopted our daughter. She is Deaf, non-verbal and due to her past is very behind in most every way. She gets a lot of looks, remarks etc. We are still learning how best to handle it all. I can handle most children – in their innocence. The adults are what gets me.

    • Ah, adults. I’m sure you get some “well-meaning” questions since you chose to adopt. We’re lucky in that Charlie is still pretty young, so most people are able to just pinch his cheeks and get on with it.

      I suspect you will see some amazing things with your daughter–I wish you the best of luck and hope you are able to enjoy her despite the annoying comments!

      • Yes, you are so right. we get many questions as to why we would “choose” this. People are also very judgmental. The general thought is that since we chose this, we can’t have a hard day or say anything about hard decisions etc. We know the adoption was what we were suppose to do, but a little support from others would be nice. Sigh!

        • Gosh, if anything the community should be rushing to help you out! It’s so amazing when people answer the call to adopt someone with special needs–if anything we should be supporting that and not taking away from it.

  37. Someone recently had a very similar conversation with me.

    They said, “I’m so sorry this happened.”

    I replied, “You shouldn’t be. I’m not. In fact, Sadie is one of the greatest gifts I’ve ever been given.”

    Beacuse, Katy, she is. And so is Charlie.

    I’m so glad I know you….. you’re a gift too!

    I have a post this week {Tuesday}, on the exact same topic! :) Great minds think alike.