All I Ask

If you read my blog and don’t have a child with a disability, you might have, at some point, wondered if there was something you could do for me. Or for other parents like me, who not only raise children, but double as nurses, therapists, teachers, and advocates. Personally, I have an incredibly hard time asking for help or even accepting help that shows up on my doorstep. I feel weak, rude, or like I’m taking resources away from someone who needs them more than I do.

That doesn’t mean that I don’t want something from others, though.  Because I do, and today I’m going to answer that age-old platitude:  “if there’s anything I can do.”

So here it is:

Try to look people with disabilities in the eye.

If you meet a child with a disability, speak directly to them. A parent or guardian will let you know if they aren’t capable of understanding or responding.

Don’t assume that a person with a disability has a poor quality of life and don’t teach that misconception to your children.

When a person with a life-long disability dies, don’t utter the phrase, “it was probably for the best.”

Don’t waste time on pity–nobody wants it.

Don’t assume I wish my child was different. Don’t assume he’s a burden.

Teach your children that different is OK and be sure to include not just those of a different color, but those who move around differently, talk or hear differently, and even those whose bodies are different.

If your child asks about someone in a wheelchair, don’t tell them to “shush.”

And teach them that looking is OK if it’s done with a smile.

If you find a child or parent or adult who is open about disability, use them and get educated.

If you don’t know about something, ask when appropriate or Google It!

Ban the words “retard” and “retarded” from your home. Even in jest, they hurt people.

If medical stuff freaks you out, imagine being a first-time mom feeding your baby through a tube, and remember that no one likes hospitals or medical equipment–some of us just don’t have a choice.

I you are interested in volunteering, do a stint with people who walk, talk, or even breathe differently than you do. Familiarity will make acceptance easier.

Don’t worry too much about how I’m handing things and ask yourself if you’re doing enough to make this world a safe place for my child and all people with a disability. Do you live like the disabled are invisible? Are you inadvertently teaching your children intolerance because of your own baggage? In your desire to be “polite” have you crossed over into “rude?” Do you make assumptions about things that you know nothing about?

I will take care of my child. I will love and nurture him. I will teach him. I will give him every advantage I can afford, so that he might one day be the person he wants to be. I ask that you help make this a safe world for him–a world where he can be who he is without apology, a world where difference isn’t a crime. God didn’t give me a special child to raise–he gave all of us the opportunity to be the best or the worst version of ourselves. I’m doing my part. All I ask is that you do yours.

child sitting in rocking char

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Comments

  1. theblondeview says:

    EXACTLY!
    It isn’t only about the challenges the person with the disability/difference has to overcome or learn to deal with in this life…it’s about how those around them and those who come into contact with them; it’s our learning experience, our challenge, our call on the carpet….will we do the right things, will we stand up for those who cannot stand up for themselves!

  2. Excellent post. I cannot agree more, especially about the assumptions on poor quality of life. I dare say Namine enjoys life much more than her peers.

    We are the change we want to see in the world.

    • My little guy has a great quality of life. He is doted on like nobody’s business, is rarely in pain, rarely sick, etc. etc. Yes, his life is different, but bad? I don’t think so.

  3. Everyone alive should read this, and that’s the first time I’ve said that about any post I’ve ever read.

  4. Wonderful post! My daughter in law to be and her 12 year old son were at my house at Easter. Using the R word about something. I informed them it was offensive and that I didn’t like the word being used. Such a cute picture of Charlie!

  5. Bravo! You are definitely doing your part to raise awareness and I love it. Before you had Charlie, I wouldn’t know how to act, either, and I have an uncle in a wheel chair. I can’t imagine being someone who didn’t grow up with a disabled person around. Thank you, once again for re-opening my eyes to those around me.

    • Sarah, I always think of you as one of those people with a built-in sense of disability because of your experiences with your uncle. I think it’s amazing how much that changes a person and it’s one of the reasons I suggested volunteering in this post. Just a little time with the disabled can really make a person so much more comfortable with them.

  6. You have to know that I agree with every word that you say, without hesitation. Every word you posted is something that I could have said. Those who teach can, and Katy, you teach. With every post and every update, you are educating so many people.
    I <3 you my friend!

    • Thank you, Becca. Such sweet words words from someone who has been there/done that with so many of the issues I face these days.

  7. Very good advice. Thanks for the thoughtful posting.

  8. AMEN!! From a dad with a special needs kid in a wheelchair THANK YOU! You have given me inspiration for a blog post. I almost punched a teenage boy for pointing and laughing at my 3yr old wheelchair bound child.

    • Josh, I’m glad you resisted! I’m not sure why the kid was laughing and pointing, but teenagers? can be a little odd. I worked with them for several years and half the time I don’t think they know what they’re doing.

  9. standing up to applaud. Bravo!

  10. Thank you.

  11. Wow, Katy! That was so well spoken. You are a fantastic writer and I always enjoy reading what you have to say.

  12. Good post. It’s very true. Having a child is a huge responsibility to that child and to society at large. What we say and do are the things that they will value and imitate. I hope my son only imitates my integrity and I hope I am ever diligent not to use racial, biased or insensitive comments around him. Everyone is equal.

    • That is so wonderful to hear! You make a great point–having a child IS a responsibility to the world and not just to our child. I think if we keep that in mind, we’ll be doing great.

  13. De-lurking to say that this made me cry. I will do my very best to remember these words in any future opportunities that arise. I am thinking of you and your twins and Charlie daily and hope that all is going well for you.

    • Thank you, Angela! I certainly didn’t want to make anyone cry! And thank you so much for thinking of us all–we are doing great these days.

  14. Oh Katy. I wish you could yell it from the rooftops for ALL to hear!!! Wonderfully written and straight from the heart. I promise to do my very best to teach my children these things and to carry them out myself. xoxo

  15. well said!

  16. Good one girl!

  17. Very well said! And looked how adorable and grown up Charlie is looking!

  18. Gail Reiner says:

    This is really well said. I have learned more about unconditional love from my daughter with Smith-Magenis syndrome than anyone can imagine unless they have a special needs person in their lives they’ve truly given the time the get to know. She’s also taught me a lot about how to find the humor in the most difficult situations (“I’ve been to hell and back mom”, “Welcome back Sonja” and we laugh) and how to accept my own times of doubt and sadness (“God’s up there somewhere mom”). Thanks for writing such a beautiful piece and representing so many of us so elegantly.

    • I know exactly what you mean. I had a house guest who was a little surprised to hear the things we chuckle about at home, in private. We don’t tip-toe around things in the privacy of our own home.

  19. I absoluetly LOVE THIS!!!

  20. I didn’t think this was pushy at all! Thanks for sharing – its nice to hear an honest assessment of how the parent of a child with special needs would like her child to be treated!

  21. Amen, bravo and YES!!!!!!!! I would also add:

    Don’t think for a second that all kids with disabilities have one personality; “sweet.” Like every other child on the planet, our kids have unique character traits. Sometimes they are even, gasp, obnoxious!

    • haha! Ellen, that’s a good one. I don’t think Charlie is obnoxious, but willful? Yes. Stubborn? Absolutely.

  22. Wonderful words needed to be spoken

  23. This is a powerful post. Well-written.

    I am a wheelchair-using second year university student and I’ve noticed that some of my lecturers simply avoid looking at me in the eye at all costs, especially this one guy. He’ll always glance at me uncomfortably but never look me in the eye. It makes me feel really uncomfortable and uneasy that he’s so uncomfortable and uneasy and I’ve even considered dropping his class because of it, but I actually can’t because it’s compulsory to my degree. Any ideas as to how to make him and myself feel less uncomfortable? I don’t even want to ask him questions as he is clearly so freaked out by me, but I feel like I should be able to, being a student of his class and all. The other problem is that he always yells to get people’s attention at the start of the class and it makes me startle every time (because of my CP) and I think he notices but chooses to ignore it and continue yelling anyhow but it does actually make me really anxious and ridiculed because people laugh when it happens, so I’m wondering how I can bring that up, too.

    Also, I know this other lecturer who frequently uses the word “retarded” (but in the correct medical sense) and although it was technically correct, it always made me feel kind of uncomfortable. I didn’t want to email her because she would have known it was me (I’m the only wheelchair-user in all of my classes and all my teachers know me by name because they have information about my CP and exam conditions etc.) but do you think I should? And if so how should I word it?

    Anyhow, sorry. I didn’t mean to make this comment all about me but your post made me think of these things.

    • Erin: I think it’s great that this post got all of these things going in your head.

      I don’t know what to say about your professor, but I think I would start by going to visit him during office hours and just let him get to know you a bit. In my (very limited) experience, many people are uncomfortable around the disabled because they don’t know how to act. If you set the tone as a regular student then he may begin to see you that way.

      I would also have no problem sending an email to your professor letting her know that the word “retarded” has been replaced by “cognitive disability.” It might take her a while to change, but we’ve all got to start somewhere, right?

  24. Absolutely AMAZING! I am posting this on my Facebook page NOW!

  25. I linked to this post on my Facebook so everyone I know could check it out and apply as needed. I find myself thinking these things and doing everything I can to set the example for my kids. My son is autistic so he “looks normal” and people get uneasy when he starts his ‘director’s commentary”‘ of talking to himself or making noises and start staring. All I can think is “Come on! He can’t help it and why can’t you figure that out?”

    Thank you for giving me words to share. ^5

    • Thank you so much for sharing this post with your Facebook friends and family! It’s been swimming around in my head for a bit and finally turned into actual words!

  26. This is fabulous!

  27. Excellent! I am printing out copies & handing them out to the people who do ask. You have given us all something to pass on.THANK YOU!

  28. I was moved by your post. I hope that I am not rude and am accepting of others. I try to be but have no idea if I accomplish it.

  29. Katy, this post is AMAZING!

  30. So true! very well said!!

  31. Great post! Once again, you have hit the nail on the head. I shared a link to this post on Facebook. : ) Love that pic of Charlie. He really is growing up and looking as cute as ever!

  32. Thank you for informing us. This is a great post. Charlie is blessed with a talented and gifted mom who is teaching us all that there is much to be thankful for no matter what our circumstances are. To treat everyone as you would want to be treated, to listen, gently ask questions, and accept those who appear different that what we deem “normal”. Charlie is a cutie and I am quite sure he will be an awesome big brother. Keep on teaching us Katy!

    • Thank you Vonnie. I’m glad you got a positive message out of this post–that’s exactly how it was intended.

  33. Beautifully written post! Don’t we all just want our children to be accepted in the world? My youngest has a speech impairment/delay due to an undiagnosed hearing loss. She is making fantastic progres now that we have helped her hearing, but I am constantly amazed at the people who change how they talk to her or treat her once she speaks. At three and a half, my girl is starting to read and her teacher says she is easily one of the smartest children she has ever taught. However she speaks at a two year old level and people assume that she must not be intelligent. How I hate those glances of pity! It takes all I have not to shout at them. If they only knew! I would never trade my beautiful bright daughter for their child any day. Yes, there has been heartache and more than a few worries and, yes, ofcourse I wish life was easier for her. But her disability is part of what makes her exceptional and she is exceptional.

    • I think that I have felt this same way–I want my child to have things, not because I want him to be any different, but because I want life to be as easy as possible for him. Pity is completely unnecessary, though. Like you, I’m happy with what I have.

  34. Lovely post! Beautifully written…

  35. Simply great and precise.

  36. Beautiful words, so true and wonderfully expressed. Thank-you!

  37. if people so want their kids to be treated equal then act equal. Don’t think the world owes you something because your child has a disability or disorder. Some people can’t even have children so be thankful for what you have and stop this freakin pity party. And if the word retard offends you ask yourself why. Why do you assume it’s about your child, surely you don’t really think your own child is “retarded” do you? Then why do you assume that’s what I’m talking about? I’m so sick of all of these self righteogous parents. Get over yourself, I really think you love all of the attention your disabled child brings you, stop using it to your advantage. You don’t want anything more for your child than I do mine and all mothers double as nurses, therapist, and teachers. The world isn’t safe for any children but everyone should worry about making it safe for yours? Why not make it safe for all children? Do yours deserve more than mine? All kids get picked on, it doesn’t kill them it’s a part of life. This world has gotten too soft, sometimes you gotta suck it up and take it like a man. There are people that have it a lot worse than you. Be thankful for all you do have, some people would love to have what you have. If these kids are treated different it’s because the parents act like this and make them different. Have some cheese with your whine.

    • One of my coworkers at an agency for those with developmental disabilities puts it this way: Some people ‘get it’ and some people never will. I suspect you never will so I won’t waste my time responding to this comment.

    • Hi i am a first time reader but had to comment on Angie.
      Angie how dare you say such horrible things. Yes we moms do have to be all those things but the parents of a disabled child/adult have to do them to keep their child alive. Stop being a douchebag. You will never get it and for that you are lucky. Count your blessings.

    • Marcus says:

      You know what Angie, we have a child with spastic quadriplegic CP and is deaf, so I do take exception at people hurling “spastic” as an insult. Is that not what a derogatory slur is, something taken out of context and used as an insult??? Like calling things “gay”, or calling someone the “c” word… We have also a child with no particular high needs and I can tell you which one is easier to parent, nurse, apply therapy and teach.

      Our children deserve no more than yours, but how much thought do you really have to put in to which entrance you use, if the school your elder child goes to can accommodate your child, indeed what school/child care can accommodate your child, with out fear of them just being shoved in a corner looking out the window, how many times have you had to fight and argue and even yell to get your child what they need(not want) (we do it all the time…ALL the time)what about people parking in the wheelchair spot when you need one, not because it is closer but because you need the room just to get in and out of the car, and are you honestly saying that if someone pointed and laughed or just stared at you or your child (ask a blond or red haired who has travelled the world)??? REALLY???

      FYI I can not STAND the “awwww”s that often follow the revelation that our son has CP or even more so that he is deaf
      I am thankful that my community assists us with some of the really difficult needs just to help to approximate a manageable life, not a better one.

      One last question, and I hope you read these, though I assume you have had your vent…WHY did you read this blog???

      OH and great article Katy, I too FBed it… yay social media

      • If you don’t want to do all of this than don’t have the child. Really, you should just be thankful for what you have and not want someone to feel sorry for you or hold YOU up on a pedestal for all the hard work YOU do. This world has turned into a bunch of pansies. SUCK IT UP. Every one has things they deal with and things they go through, this is yours. Why you feel the need to turn your disabilities, problems, hardships, and obstacles into the very meaning of your life I don’t know. Why you assume every one’s comment or joke is meant to get you I don’t know. If you don’t want people to pity you then don’t act pitiful. I’m sure you love your child so why do you work so hard to convince the world what a awful chore it is? I truly believe we are treated the way we teach people to treat us. If you don’t like the way you are treated then look to how you are showing people to treat you. Stop whining and take the obstacles thrown your way as stepping stones. And as far as the blond and red head thing go, blonds makeup about 1% of the world so yes they are rare and tend to get stared at. This isn’t always a bad thing. Let a beautiful woman walk into a crowded room and watch the heads turn! When my little girl complains that her sister is starring at her I just tell her it’s because she’s beautiful. And people really do look at her because she is very beautiful. I tell her she better get used to it because it’s going to be happening her whole life.

        Maybe you should have a real problem to put things in perspective for you. Let that child die and see how you feel about all the complaining you have done. I bet you would be glad to search for a handicap entrance then. The world is full of problems and yours are no bigger than anyone else’s. So, go ahead and say I just don’t get it. You are right, I don’t. I’m glad I don’t too. Life would be so miserable if I looked at every inconvience and something to make a big show over and beg the world to treat me such and such way cause my child wasn’t born perfect. What about the child born with AIDS? Or the one born dead? What about the mother than deals with her child being murdered? Or the man with cancer? The woman with infertility? The children in other countries that won’t eat today? The people in the countries ruined by war? Or the homeless? The list could go on and on. I just think people should be grateful for what they are given, there is always someone that has it worst than you. Instead of saying what can the world do for me and my family why don’t you find someone that is in worst shape than you and do something for them. I just hate pity parties and ungrateful people and this post seems to be full of them. You people make your children sound like a CURSE and you should be ashamed of yourself.

        • Dear Katy,
          I applaud you for not deleting Angie’s comments. She certainly showed exactly who she is…
          It always amazes me what a person can think she has just heard in another person’s writing when really she is having a conversation in her own head about something entirely different.
          I certainly didn’t notice any whining, negative feelings about your child, or lack of gratitude in your blog. You specifically pointed out that you don’t want to take resources that others with higher needs might be able to take advantage of.
          Dear Angie,
          I am sorry there is so much pain in your life. Truly.

          • Angie,

            No one here is asking for special treatment or a pity party. You sure so come off as a judgmental sort. Have you walked in any of our shoes? Chances are not. Do you know the heartbreak of having to sign a DNR for your child because the next illness might just be the one that takes him to a place he cannot recover from? Do you know what it is like to have your child require 24/7 care and it is not at your hands, because, well, you are just not qualified medically to meet his needs? Chances are not. You should consider your self lucky. Maybe you should Google the poem “Welcome to Holland”.

            Here it is if you choose not to..

            I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

            When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

            After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

            “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

            But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

            The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

            So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

            It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

            But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

            And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

            But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

            • not to be rude angie… because i have no idea what you’re going through and i mean this sincerely… they didn’t see the tulips and the rembrandts but you did. they could brag all they want but they didn’t experience what you did. they missed out on what you saw.

        • Guys: I’m going to ask nicely that we let this particular comment thread end. Angie has shared her two cents (twice now). I agree with her sentiment that we should be thankful for our children and am unsure how she read something else in my words. I can only assume that she herself has experienced a significant loss and feels somehow that there’s not enough appreciation for what we do have. Message received and hopefully we can put an end to this comment thread. Further postings in this thread will be deleted.

  38. Excellent post!

  39. Standing ovation!

  40. I love this. What an incredible boy you have.

    My question to you: My 4 y/o is incredibly curious about the differences in people – he notices it all, fat/skinny, short/tall, different ethnicities, and handicaps. How do I approach the handicap issue? There have been times that he has asked me why a child is in a wheelchair and I don’t really know what to say, I’m afraid that if we show his curiosity, that the parent/guardian will be offended. I don’t know if what I see as childlike curiosity will be taken as disrespectful.

    Any tips?

    • Well, I personally, never shy away from questions about Charlie although I tend to keep them simplistic for children. You might try a quick answer like, “because he can’t walk by himself.” But if it’s a small child in a wheelchair, you might encourage your son to go over and introduce himself and say hello. Most parents want their children to be greeted and accepted so I bet that would go a long way.

      Everyone is different, but I wrote a post a while back about explaining Charlie to children and many other parents answered it as well–truth is, most of us are still figuring it out, but most are not offended by childhood curiosity. Here’s the post if you’re interested:

  41. Wonderful, thank you so much. As the mother of a young twin with CP, I myself need to know how to react to *other people* with disabilities. When I see someone walking differently, I want to walk up to them and ask “Do you have CP? My kid, too!” but I still think that might be a little weird…

    • Shasta: I was the EXACT same way when Charlie was little–I wanted to make friends with every disabled person I ran into. I resist the urge to talk to people *just* because they’re disabled, but I do go out of my way to ask them about their wheelchairs, how their travel experience was, etc. Then it’s easy to throw in the fact that my son is disabled.

  42. Stephen Elvis Smith says:

    Right On! You hit all the points that really bug. Spread the word baby!

  43. Wonderful post — I’m passing it along.

  44. Michelle says:

    Hi, welcome Blog. I have an daughter who is special needs and I just found your Blog spot on. I saw it on Friend’s FB Page and I have also passed it on.

    Thank You again, x.

  45. Thank you, thankyou, thankyou for this post. I have a four year old son with spastic quadriplegic CP who is also profoundly deaf. A couple of days ago as I was trying to battle government departments, I got myself into one of those states where it was all a bit much, and I had a bit of a cry. My sister happened to call at that moment, and strangely we ended up in a bit of a ‘tiff’, with her upset and frustrated at me because I don’t ask for help often enough. I felt overwhelmed to say the least, thinking not only do I have to battle bureaucrats, but I have to go against my fiercely independent nature and put my pride on the line to ask for help from others who I know lead incredibly busy lives. The little bumps in the road along this journey come from the most unexpected places at times, and I just loved what your post, it captured this so clearly. I hope you don’t mind, but I’ve re-posted it on facebook, and requested that all of my contacts do too. I think if everyone reads it the world will be that much better for our kids and others in their situations.
    Thanks once again,
    Nicky

    • Nicky: I’m glad this post gave you a feeling of camaraderie. It sounds like you have a fantastically supportive family even if sometimes they add to the problem instead of helping :)

  46. Pauline H says:

    I can echo all those sentiments My son is serverly disabled and in a wheelchair but he has the best quality of life. He loves people, is very sociable has a great sense of humour and loves life. He certainly doesent deserve or expect pity – in fact, quite the opposite. Yes – he takes a lot of my time but no – it is never a burden – I love my son very much and I love it when people talk to me and ask him questions – instead of looking to me to answer for him.
    Thanks so much for this post – everybody should read this
    Pauline

    • Pauline: I am the EXACT same way about Charlie. My husband and I will joke “poor Charlie” because he really does have a pretty great life. So much so, that I think we often forget that some people would see it a different way.

  47. Hello, Katie! :)

    I don’t think we know each other, but I have to say just how much your post resonates with me. My teenage son is autistic, and I have hydrocephalus and epilepsy. This is a very powerful piece that everyone should read! I hope you don’t mind if I share it on my Facebook page. :)

    God bless,

    LIZ :)

    • Liz! I would love it if you shared it on Facebook. I am so glad that this post resonated with you–when I hear that, it makes my day.

  48. Gretchen says:

    Well-written. Great advice for people who don’t know how to be around us. Thanks!

  49. Thank you for this post – so many wise words.

  50. LaCrisha says:

    This is an exceptional post and everyone should read it. I am a home health nurse and have learned so much from my patient and her family!!! They are so amazing and especially her!

    • Well, LaCrisha, let me thank you for the service that you do for families in need. I am sure it is not an easy job, but one that is greatly needed. I am glad that you not only do your job, but that you are able to enjoy it and the patient under your care. Again, thank you.

  51. Angie, sounds like you have had a loss, if so I am sorry. I cannot imagine otherwise why you are lashing out at other mothers this way.
    I have read Katy’s blog long before she had Charlie. She always blogs about her life with a lot of grace and honesty. While I assume this is not a choice she would have willingly made for him, she has clearly loves him wholeheartedly just the way he is. Praying you find some peace.

    • Nora: Thank you for being here through it all. Crazy how long this blogging thing has been going on!

  52. Wow, best post ever! I will remember this advice!

  53. magnificent…. thank you for posting this!

  54. Well said.

  55. Hey Katie,
    Thank you! I’ve read many parents attempt to address this topic and this is the first time I’ve felt they hit that sweet spot and satisfied the need. I like seeing eye-to-eye with others. So glad I tabbed this blog yesterday and clicked on it before I restarted the computer this morning to ‘keep from losing it’. :)

    I’ve not really been a blog reader so don’t know etiquette. I’d like to post it to my facebook page. Can I copy it with a link to the page or do i need to just post the link? I’d like to copy it so those who don’t realize they’d be interested will get a chance to see it.

    (ps: I have a child with Autism, etc. and a blind child. Been to all those conversations with the public too).

  56. okay, now I see. I posted the link on my fb page and see that it shows the opening comments. no need to copy the whole article.

  57. Caroline says:

    Thank you Katy. I would like to remind people that not all disabilities effecting our children are visible.

    • Absolutely true. For the first three years of Charlie’s life, we flew under the radar. Now days we sometimes take my son’s wheelchair just to save ourselves the discussion. Not everyone has the “luxury” of wearing their disability on the outside.

  58. Elizabeth says:

    This is a wonderful post that should be shared with everyone. I also think this positive outlook on life and to change the world should be read by those who have child(ren) with a disability as well. I’m a nursing student, while at the hospital, I have come across parents who neglect their child with a disability (whether from lack of education about the care of the medical condition or just the character they possess), and I find that heartbreaking. I wish for all parents to have the strength you do in adequately taking care of their children. Maybe if they thought of their child as lovingly as you do, despite of a disability or not, they would have a different approach…

    • Elizabeth, we’ve spent plenty of time in hospitals, and I’ve also seen some of these cases. It IS heartbreaking and I have always wished it were different. One of the main reasons I have maintained this blog is to let parents know that no matter how scary those early days are, raising a child with a disability isn’t nearly as impossible as it sounds.

  59. Cynthia Faucher says:

    I totally agree with your statement. My son is 21 he has C.P and Lesch-Nhyan Syndrome. I totally agree with you. I am a very shy person so it was very hard for me to ask for help. I don’ t know how it is in the U.S but in Canada you need to get all you need before they reach 18. I am very proud of my son! He loves to talk people he will just wheel over and start talking.

    • How wonderful that he has so many I actually have another reader whose son has that same syndrome–I understand it’s pretty rare? It is tough to ask for help and I am working on it–convincing my husband will be something else entirely.

  60. Helen Miko says:

    I don’t know what I like better; the no pity wanted, our kids never being a burden, or not to shush kids comments!!! SO well said!

  61. Thank you!!!!! You have basically read my mind. I will be sharing with friends and family. My son has Spastic Quad CP and will be 8 this year. I LOVE, LOVE, LOVE what you wrote and cannot wait to learn more.

    • Cricket: I am so glad this post resonated with you and thank you for sharing it with your friends and family.

  62. Love this post, Katy. I’ve spent the past 2 years working with people with disabilities and I’ve become passionate about educating people about most of the points above.

    A few months ago I met up with one of my former “campers” who is 22 and has muscular dystrophy. We went to the mall. We got into the elevator with a Dad and his curious 4 year old son. The man kindly asked my friend if it would be okay if he took a second to explain what a wheelchair is to his son. I loved that he addressed my friend directly and not me, and that he was taking the time to explain it to his son! I wish more people were like that!

    • That is a wonderful way to handle it! I think that the more we address the issue of disability with children, the better the future is for all disabled people. There’s no perfect answer, but knowledge is a great place to start.

  63. Beautifully written, excellent points. If I ever get my village, I so want you and Charlie and your hubby and the twins in it!!!!

  64. you’re the best. I’m sharing this on my facebook right NOW!!

  65. I love this! It is what every parent with a special needs child would like to say just can’t get in on paper as beautifully as you have. I can’t wait to stay update on Charlie and your growing family. I have shared on FB but would also like to post it on my sons website, would this be okay with you??
    http://www.hope4konnor.com

  66. thank you so much for this post! i linked to it on my family’s web site.

  67. I teach children with ADHD and dyslexia. They toss the r word around like it’s nothing. Instead of getting mad, I just explain to them WHY the word offends me. I say that I coach a soccer team with kids who struggle to walk and talk on their own, but they want to play soccer and make friends just like my students do. I also tell them that they’re smart enough to come up with the word they REALLY mean. I talk to them about how some of my kids use an ipad to communicate, and how one little girl got to go trick or treating with her ipad. They think that’s a pretty cool thing. I think they start to see these kids as more like them. They’re getting better about the r word. I haven’t heard it in a while. I actually overheard one kid say “dude, don’t use that word. you know Ms. C doesn’t like it!” I even had a kid ask me what autism was, and I had a really interesting chat with him about it. I was so thrilled he was able to ask that question!

    Also, I work at a camp for kids with ADHD/autism/anxiety/etc. The friendship between the kids who are ADHD/dylsexic and those with autism are amazing. I know one skinny little boy with ADHD and anger issues who is in the same group with a little boy with autism. The child with autism likes sensory input, and often times I’d see the skinny kid with ADHD trying to lift up and spin his friend with autism, because he knew how happy it made him. It was probably the cutest thing I’ve ever seen.

    One last thing (sorry, I love this post and I have a lot of thoughts on it) Last month Glamour magazine did an article on interview/workplace tips. One of those was “don’t use the r word!” I just found your blog and I am glad I did! your son is absolutely adorable.

  68. Beautiful post.
    Thank you for writing it.

  69. the heart speaks the loudest. the heart leads the body, it inspires the mind, it drives our passion. “disability” whatever it may be will never be stronger than the heart, hence we’re all the same.

  70. Kandice says:

    Hi Kati,
    As an adult w/ a lifelong disability (I have spastic diplegia cp) I’ve been in all levels of ability as my life has progressed. I agree so much with your post .. and honestly also agree to a point w/ the other woman (Angie) on some of what she said as well. Being 36 I was one of the first few in the ‘inclusion’ parade. Difficult to say the least. Gave me an inner stregth that has saved my life and my children’s more than once. All that difficulty really was used to my benefit later. I really appreciated the ‘looking in the eye’ comment .. YES MA’AM!! And I don’t mind AT ALL questions .. I don’t even mind staring as long as it’s with a SMILE and if I speak then ANSWER! I actually love it when kids ask questions and my answer is usually something along the lines of ‘god made me walk this way and you that way.. the same way he gave you blonde hair and me brown. b/c he likes us all to be different and special in our own way.. what do you think makes you special? It always starts a really neat conversation. The adults are a bit more difficult just b/c they are afraid to ask. I did have a mom who used my disability to ‘benefit’ her on a large scale o I guess that’s what makes me understand the negative remarks earlier but I so appreciate your willingness to share your experience with your child :) Thanks for sharing!

  71. Our differences are what make us worth knowing! However, for children & adults who have differences that make life a bit (& sometimes a great deal) more challenging, has an awesome impact on their lives.
    When I FB posted this I said that the minute you spend reading this blog post may change your own quality of life!
    Thanks & God Bless you!

  72. I meant to say that: However, for chiildren & adults who have differences that make life a bit ( and sometimes a great deal) more challenging, HOW THEY ARE TREATED has an awesome impact on their lives! Sorry for the poor proofing!

  73. A friend shared this link on facebook and I really like what you have written. I totally agree that we need to teach these things to our children and that they not only respond to what we tell them but also what we show them. So if we are speaking of acceptance and equality but we are not demonstrating that our children DO notice.

    I do have a question, as a mom who does not have experience with a disabled child. I find that it is difficult to know the right thing to say or do. When I see a child (or even an adult) with a disability I face an internal struggle. As mom, massage therapist, and future health care professional I am curious – what is the disability, what are the struggles, what are the treatments and therapies (if any) available to this person, etc. As a person who does not want to offend anyone, make them uncomfortable, or be rude, I find it hard to know if it’s okay to ask questions but I also don’t want someone to feel as if I am ignoring them due to a disability.

    In your post you write: If you find a child or parent or adult who is open about disability, use them and get educated.

    Do you have any suggestions for asking questions or finding out if someone is open to talking about it with out being rude?

  74. <3

    Can I just stand up and applaud and shout and bow to you, my friend.
    <3

    http://asouthernfairytale.com/2011/05/11/all-i-ask-of-you/ because of you.

  75. I came to your post because of Rachel at A Southern Fairy Tale and a tweet she sent. This is one of the wisest and most insightful posts I’ve read since I started blogging.
    Those who are of able body and mind yet refuse to be inclusive, tolerant and compassionate of others suffer from their own disability…that of just plain ignorance.

  76. Beautiful post! My son’s kindergarten class had a program about a disabled veteran (he had a prosthetic leg), and I was so pleased that the materials that came home were very matter-of-fact. The guy lost his leg, and now he has a different way of getting around. I think they called it a “robot leg,” which, to a 5yo, is a very cool thing. I also recall being on a bus, next to a man on a wheelchair. When I saw my son looking, I used it as an opportunity to talk about how everyone’s body is different, and people do different things to manage. I think the normal instinct for anyone is to shy from situations they don’t understand or make them uncomfortable — notice I say instinct… a primitive way of interacting with the world. Thankfully, getting to know people in different circumstances (whether it be race, weight, sexual preference or disability) goes such a long way toward overcoming the baser parts of humanity.

  77. all I can say is …. AMEN! Thank you for writing it. It says EXACTLY what I feel and have been feeling since October 1998, when my daughter was first diagnosed.

    My oldest is a special needs child, er no special needs teen. I can’t tell you the number of times people have thought badly of her because of her disability. In my daughter’s case, she has a disability that you can’t readily see. She has a brain injury stemming from delivery when she was born and the incompetence of my then OBGYN.

    It saddens me that people don’t take the time to get to know her for she’s an amazing and sweet person. It saddens me to think that they won’t get the experience I have had learning from her. Yes she has taught us all some very important lessons.

    I’m thankful everyday that God choose me to be the mother of this young lady.

    XO from another special needs mom ..

  78. Two words: Thank you!

  79. Fantatic! You knocked this out of the park.

  80. Well said, and nice to “meet” you – thanks to Maya for putting me on to your blog!

    I have been trying to write a guest post for another blogger about helping kids understand how to deal with people with vision loss (my mother in law is blind so kids in our family have been privy to her world forever), and I have struggled with some of the things you discuss in your post.

    One of the things she particularly dislikes is the response “I’m so sorry” when she tells people (or people observe/learn) that she’s blind. Her rationale? It’s not their fault!

    Thank you again for sharing your expertise/wisdom.

  81. Katy,

    You couldn’t have said it any better! My (elementary age)daughter helps at her school with different children each with different disabilities. I taught her from a young age that your child should not be treated or looked at any different than mine…other than to give your child a little more attention and help when needed because not everyone has the same compassion and mentality we do. And help those with the same mentality as a certain person who commented above to understand how you should treat a person with or without special needs! This has nothing to do with the world getting soft or pansies. It has to do with respect, respect for others as well as respect for yourself. It has to do with compassion, and teaching your children to be compassionate towards others. I can’t tell you how many times my daughter comes home upset regarding the special need children she sits with and how others treat them. I explain to her that those children who pick on them their parents did not teach them the same things I have taught her. It wasn’t until last year that my child learned of the difference in race only because someone kept asking her about it….her response was American and she is peach! She was not brought up to associate people with a color (and if she had to she would pick one out of the Crayola box), race, financial status, ability to see/hear/walk. She was taught to treat people equally, to be kind, helpful, and understanding because everyone has a story and it’s not always a happy book.

    We can’t change the bullies of today which obviously some don’t ever grow out of…cough cough (certain person above). But we can only hope that mothers of bullies and mothers who are bullies will read this and take it to heart.

    I am a mother who was told wouldn’t be able to have children and was blessed with my daughter, but have struggled since her to conceive again. I do not feel at all that you don’t appreciate the gift you have been given or that you are complaining. It takes a strong, loving, patient mother to wear your shoes. Rock those heels or boots or whatever shoes you fancy!!!! They fit you well mama!!!

  82. Oh and my reference to “everyone has a story and it’s not always a happy book” was not in reference to yours or anyone elses situation. Before I get backlash for that comment. It is in reference to the fact that we all have a story some more vivid and entertaining than others, some with hardships, and some with a cinderella ending. We can’t all be bestsellers! Lol!

  83. I wrote a very similar post not too long ago, not sure if you saw it or not. I put it on my blog on April 15 (http://www.bringingthesunshine.com/2011/04/set-apart-a-primer-for-the-typical-folks-2/) but it was originally a guest post that I did for Beth at Our Typical Life.

    Different words, same thoughts.

  84. DIStherapy says:

    Thank you for your message to “normals”. Please see your blog referenced at :
    http://paper.li/_DISCOT
    Blessings @DIStherapy

  85. That was well written and beautiful.

  86. Shannon says:

    I cried as I read this entry. My little one has some delays, speech being the big one…and people make me feel like she is just “stupid” or doesn’t get interaction at home. We have therapists, specialists, and I talk to her (and sign) all day long. It is really hard to have any kind of disability in this world, and adults can be worse than kids. Thank you for your wonderful insight, and your kind words.

    • I too have found that I get more negative feedback from adults then other kids. Hugs to you…don’t let people make you feel bad about your special child. I certainly don’t. He is my blessing from God! I love the saying “God gives special needs to special parents for a reason”. <3

  87. Linda Johnson says:

    They say you learn something new everyday. Today I did.

    When I was a child and my siblings and I would pass a handicapped person my mom would immediately say “Don’t stare.” Sometimes this was accompanied by a pinch. Because of that I grew up turning my head away so I wouldn’t be rude.

    Now that I am 58 I have lived and learned we all are different. We all live in this world and deserve notice…a real smile and Good Morning! In that we are all the same. There are times, though, when I catch myself automatically turning my head away. I don’t think I ever will again, thanks to you.

    Bless you and yours.

  88. Hi Katy,
    I just loved your words here! I’m 19 and I work in a bakery part-time and when, for example, I serve a mother and her young child who is in a wheelchair, I have to honestly say that I don’t know how to appropriately act.
    I had a bad experience once where I served a little girl in a wheelchair with special needs. I said to her, “Hi sweetie! Would you like a mini-cupcake today?” (which is what I say to every adorable kid that comes in, and this girl had the biggest smile!) Her mother got really annoyed and yelled at me in front of all the other customers. Her basic message was, “Don’t treat my daughter like everybody else. Talk to me and not to her”.
    I felt so awful for doing the wrong thing in that mother’s view, and I would just love some advice from you or the other wonderful parents here on how YOU would like someone like ME to best serve you and your children.
    Thanks so much!!

    • You acted like MOST parents of special needs kids would like. I get frustrated when people act like my 8 year old son is invisible. They will ask me what he wants for instance and I will look at them and say “I don’t know let’s ask him”. I actually had to put it in my son’s IEP that his therapist, etc. not just take him places without first getting down on his level and looking him in the face and telling him where they would be taking him so he didn’t feel like he was being just dragged all over the school. I say you did an excellent job and I would have very politely thanked you for including him had I been the parent that day. Don’t let some bitter people sway your kindness.

  89. Beautifuly written….you put a voice to what so many of us feel…thank you and God bless.

  90. I am the mother a special needs child and this post is AMAZING! I have come face to face with so many ignorant people when it comes to children with disabilities. By ignorant I mean uneducated on how to react to them. I have had people in restaurants actually say to me (on 2 different occasions) that I should not bring my son out in public because he used to have screaming outbursts that lasted only a few seconds. Then I had a boss one time tell me that she did not think it was “fair” of me to take my son out to eat and to public areas because people go out to relax and don’t want to be “subjected” to the stress of seeing a child like mine. Seriously? Pure ignorance.

  91. Great post, im going to keep reading some more.