Monday, June 6, 2011

What moms of kids with special needs want other moms to know

Please, stop staring—my son is not a freak. He is just a kid, even if he has some challenges your child doesn't. He may not notice you are staring, but I do, and it makes me uncomfortable and, at times, sad. Someday, my son may very well notice the stares, and the last thing I want is for him to feel like an outsider in this world. He already has enough adversity to overcome. Treat him as you would any kid: say hello, joke with him, ask what his favorite color or food is. Do anything but stare. Please, don't stare.

That is one of the key things I'd like people to know when it comes to Max. He's 8 and has cerebral palsy, for those of you who are new here; as a result, he can sound like a deaf person when he says words, and sometimes he drools. The staring, which happens all the time, drives me BATTY. "Is something wrong?" I'll ask, and then the person will usually catch himself and look away. Parents, strangers, neighbors—I don't care who's doing the staring, I notice. Kids who stare can get to me too, but they don't know any better. They're curious; they want to know why Max doesn't talk like they do. Adults may be curious too, but they should know better than to blatantly gawk.

I've been talking about this with my friend Jill over at Scary Mommy. Like me, she's working with P&G on coverage of the Special Olympics. Given that they're the Proud Sponsor of Moms, I wanted to amp up my mom pride about Max and other kids with special needs. So Jill and I cooked up an idea: I'd ask all of you to share your thoughts on what you want you've always wanted to say to parents of so-called "typical" kids (if you ask Jill, her three non-disabled kids are anything but typical).

Meanwhile, Jill would do a post asking her readers to share questions they have about kids with special needs. She'll send her readers over here to read what you've said. We can all head over there to answer their questions. Hearts will be opened. Opinions shared. Awareness raised. Good, right?

I know you guys have a whole lot to say, so let's get the conversation started: From the bottom of your hearts, your brains, your souls: What would you like parents of typical kids to know about children with special needs?

This is the fourth in a series of posts sponsored by P&G, for whom I'm covering The Special Olympics; they're a sponsor! "Like" their Thank You, Mom Facebook page and they'll donate $1 toward Special Olympic Team USA's journey to the World Summer Olympic Games in Athens.



  1. Typical is overrated. "Typical" is not "normal." Please do not try to tell me your kid shoving quarters up his nose is "normal."

  2. You have mentioned this before, about Max sounding like a deaf person. He does not sound like a deaf person. Really, he doesn't. I have worked with deaf kids for 30 years, and deaf kids do not sound like Max. Because they can't hear themselves, they tend to have flat speech with no intonation. Why can't you just say that he has severely impaired speech? Why do you need to describe his disability with another disability? I would never describe a deaf child's speech as "he sounds like someone with CP."
    The rest of your message is great, but comparing his speech to a deaf person has got to go.

  3. I've been thinking about this a lot lately. Our oldest child is 11 and the closest we have to typical (sensory integration issues). She's involved in a lot of activities. Our other two have greater needs, Jake, 10, has been diagnosed with CP and secondary autism, 2-year-old Finn with developmental delay. Life is a challenge. :)

    What amazes me, frustrates me, and makes me want to scream is when other parents expect us to volunteer as much as or even more than others. Really?!?! And, when I push a little to see where it's coming from, I hear, "So-and-so's son has A and always was able to do this" or "But, he's so cute; he doesn't look like he has special needs."

    I guess it's the assumption that they know our lives when they have no idea. They make judgments about what we should be able to do with our family. Maybe we share the blame because when we do venture out (not that often, mind you), we can make it look easy. But that is because EVERYthing is meticulously planned, every possible outcome discussed and prepared for.

    One of my favorite friends is simply awesome. She recognizes that we can determine what we can and cannot do. She offers help when she can without offense and does not judge. I simply love her.

  4. I am not a special needs person. However, I know what it's like to be different. I have been since I was three years old due to a freak accident. It left me with years of reconstructive surgery. Many surgeries that failed. In the end, they couldn't take away the scars... or give me back my left eye.

    I know what it feels like to have someone stare at you. You feel like a freak. The double takes. The smirks. The laughs. That's something I hope your son never experiences. It's the worst pain ever. When it's kids its easier to brush off. They don't understand. However, it's the adults. They are the one's that know better. Everyone with special needs or some type of disability may not look or act everyone else. However, we still deserve to be loved and respected. They are just simple flaws. Everyone has them. Some of us, just can't hide them. :)

  5. I am very new to this game, but I want you to know your blog helped me begin the journey out of the hole I was in after Johnny's initial dianosis of CP. Is there somewhere I can email you? I have a few questions about Max's early days. Thanks for all you do. Especially from someone who is walking the trail you have helped blaze.

  6. Well said. And Brandi, that was really moving.

    Good q's are coming in over at Scary Mommy, please head on over there and share your thoughts.

    The H's: I'm at lovethatmax[at]

    Anon Y Mous: "Max will sound like a deaf person sounds" is exactly how his pediatric neurologist described his speech years ago, and it's just stuck. To me, his slow and slurred speech has sounded like that. You raise a good point, thank you.

  7. I totally agree with your post too, and think its good to be open between "typical" and "non-typical" .... I do have to agree with the previous poster with the 'sounds like a deaf person'. I know there is no malice behind it...but my son is severely hearing impaired and has CP, and autism.....soo I have no clue how to describe his speech other than "impaired" son's doesn't sound like a deaf person's, but isn't normal mom was deaf and she sounded completely normal as well. I know you didn't mean anything by it so no hard feelings by me. Just please, please try to find a different explanation.

  8. Teaching compassion and kindness and that it's perfectly okay to be different is something that should be be ongoing - not only do you need to talk about it to your kids, you need to model it yourself over and over again (and preferably believe in your heart that all people absolutely deserve respect and love and kindness regardless of their differences).

    Kids can be so very mean to other kids - especially to those that are different. I tend to believe that most of the time kids are doing it without understanding how very hurtful it is. Teach your kids beginning at a young age that it is not okay to tease, alienate, make fun of, and generally treat other kids like dirt (all for the momentary fun of feeling better than someone else - also known as bullying). Teach them to stick up for kids who are different, who are getting picked on, who are the "others" in their classroom. That kid is my kid and he needs a few more kids on his side.

  9. I would love for Mom's of "typicals" to help their children feel comfortable around other children who may be "different". Talk to your kids about other kids (and adults) differences and help them to understand that everyone is equal, regardless of their appearance. We all want to feel loved and accepted. If you are comfortable around everyone, then your kids will pick up on that.

  10. I have a question that I've been thinking about lately. I have CP and use a wheelchair, and when I see other people with disabilities, I tend to stare a little bit. Because I'm excited to see another member of the tribe, and want to check out their gear, and like to compare to myself, etc, etc. I always give a big smile, especially if there are kids and parents. Hopefully it gives them a little bit of encouragement to see a young adult dressed professionally out and about.

    Thoughts on this? Is it different when people with disabilities stare at other people with disabilities? Or equally rude?

  11. I once heard my sons 8 year old cousin say "He doesn't look sick to me." and his parents quickly shhh'd him. My son is not sick! He doesnt have a sickness!

  12. Thanks, Erica. Bravo, Ali and Lisa!

    Joy, that is such an excellent point. I don't think staring is great in general but, I hear you and I have to say, I have been really thrilled when people or other kids with disabilities have approached us. This weekend, when we were away, a teen whose speech was impaired came up to me and Max. He'd seen Max using his iPad and Proloquo2Go, and told his own speech teacher had been encouraging him to use it. It was a great interaction. I was really glad he said hello.

  13. I REALLY hate to answer this question with a link, but I did a post on this exact topic that has remained one of my favorites (and generated the most traffic, as well). It's titled "Set Apart: A Primer for the Typical Folks" and if anyone is interested in reading it, you can find it at the following link:

  14. This is a fantastic idea and wonderful opportunity. Thank you!

    I'm still pretty new to the special needs world, but my thoughts are:

    There is nothing "wrong" with my child. He learns differently and has some health challenge but he's a beautiful, amazing charismatic boy that captures the heart of everyone he meets.

    No, he won't "grow out of it." No, he won't catch up, surpass and be "ahead of his peers." And no, you should not "feel sorry" for him or me. Grrr. Those ones really get me!

  15. I'd want them to know that a "typical social invitation" would be the world to my child (with autism). It would be great if a "neurotypical child" invited my child to have lunch with him at school. Or invited her out to a movie. Or just said hello and started a conversation in the hallways. Those little things mean a lot.

  16. Oh yes, anonymous...yes, yes, yes.

  17. I came over here from Scary Mommy because I am the mother of a special needs child, but she does not have CP or autism. My child was born with a microdeletion of chromosome 22q11.2, which has caused many problems in her life, including severe heart defects, lung disease, immune deficiency, speech delay, small stature, weakness, and many other things (we are told to expect learning difficulties and emotional problems as she ages as well). My daughter has had 3 open heart surgeries and is covered in scars, including of course the zipper scar down her chest that shows with every summer outfit she wears. My daughter is 3 and we had our first anger-inducing incident last week at her end of school year special education picnic.

    What I want people to know, not only typical parents, but parents of other special needs kids, is that just because you think the child is normal, doesn't mean that they can do everything you expect. Most people see my daughter and the first thing they think is that she is an advanced toddler because she is so small, but now talks like a regular 3 year old. When they find out her age, they get quiet and don't know how to respond. I would rather people ask questions, rather than walk away. I can explain that having spent 6 months out of 3 years in a hospital, makes a child developmentally delayed. I can explain that her chromosomal abnormality leaves children much smaller. I can explain her difficulty in learning to eat (a difficulty we are still trying to overcome). I can explain that she has spent her entire life in various stages of heart failure, which causes her body to work like its running, even in sleep, using up tons of energy. But, I never get a chance to explain anything because people get uncomfortable when they realize she is not typical.

    Another thing I would like people to realize is not to stare at the scars.
    At age 3, my daughter sometimes lifts her shirt still in public and has shown the dreaded scars from many chest tubes, three slices through her ribs, and she has a large scar on her neck where the docs had to open her for her last surgery in case the shield they placed over her heart was not adequate protection, so when people see the scars, I'd rather they not stare. Instead, ask us about the scars. Even my three year old can tell you she has a special heart. (She could tell you the names of the medicines she takes daily and their rudimentary uses.) I don't mind answering questions. Usually, kids will ask. They don't stare (at least not the preschoolers). It's the parents who stare. The parents who make me feel like they're worried their child is going to catch my daughter's heart problems. If you talked to us and learned, we'd feel more welcome. And no, you can't catch 22q deletion, you can't catch the types of heart disease or lung disease my daughter has. Her legs are two different sizes and you can't catch that either. All you'll catch from her is a smile if you bothered to stop staring and talk to her. (And no, I don't mean "you" as the people on this blog who are telling the world what you want and the good people reading to try to learn, but I mean "you" as in the person who stares and does not engage.)

  18. Please don't tell me that my son doesn't look like he has autism. Autism doesn't have a look. As the saying goes...if you've met one person with autism, you've met one person with autism.

    Also, please don't brush me off with "oh, all kids do that" if I'm sharing something with you that is challenging. Children with autism take typical behaviors to the extreme. For example, your child may enjoy spinning till they fall down. This is not the same as my child spinning for 45 minutes to cope with his anxiety.

    Finally, please don't make me out to be some kind of saint or go on and on with "I don't know how you do it." We "do it" because we're parents and a parent does whatever their child needs. You'd do the same if you were in our situation.

  19. As a mom of a special needs person the thing I hate the most is "Oh he will be fine!" "He doesn't seem very delayed" "When do you think he will do 'x, y, or z'"

    No - really - he has a genetic condition that will not go away. He may not look 'different' but please stop act as though I am overplaying my childs condition. I know you think you are being encouraging but it is really just annoying.

    We take his condition (Prader Willi Syndrome) on a day by day basis. We have days that are great and we have days that are awful. We have been to the ER enough to have the nurses recognize us and to know if my son is looking better or worse than last time.

    Sorry - I am venting. I will get off my soap box now.

    Signed - a mom who loves her child.

  20. I have a son with Autism and an old friend used to compare our sorrow, the pervasive worry, and our challenges to her problems of being a step parent and not being taken seriously, my husband and I kinda wanted to pound on her a little bit.

    She also accuses us of making everything "about us" right after the diagnosis. ::blink::

    I say this: If you don't have kids, you have no idea. If you only have neuro-typical kids, you can only imagine the heartache and stress that comes when something isn't right with your child or when you know your child is going to face unforseen challenges in the world. If you choose to be petty and unsympathetic, please walk out of our lives, we don't need you and we won't miss you, just don't try to hurt us, we have enough to muddle through each day.

  21. I'd like parents of typical kids to not only be aware of kids with differences but to reach outside that even more and encourage interactions, even friendships with our kids with special needs. It takes work and patience, but I've witnessed a couple of really special friendships develop between my son (delays, vision issues, mental health issues, kidney failure/dialysis/transplant) and two kids, independent of each other. While years ago the kids showed an interest in being friends with my son, really, their parents really helped get their kids past challenging times with him (social skills, long absences, strange behavior, suicidal thoughts) to encourage the friendships to continue to grow.

    In addition to another commenter, I'd have to agree with the comment from people, "I don't know how you do it" because we all do what we have to. As far as other parents, while I certainly appreciate when our struggles aren't brushed aside, I can completely and want to talk about your challenges in parenting too...because I believe everyone's worst problem is their worst problem - don't be afraid to talk to me!

  22. When you see a child melting down in a public place, don't assume it is lack of good parenting that causes this. My son has high functioning autism, and anything can set him into one of these tantrums, lights, noise, not getting his way. When you look at me like I should know how to control my child better than that, it cuts me to the core. Remember, you are seeing this for 10 minutes. It is my life every day, sometimes all day. Smile instead.

  23. Great topic. As I read the comments, I feel lucky and a little guilty. We have never had any of this happen. All of our encounters have been very positive. People will ask about Max. And I tell them about his delays and apraxia. And they listen and encourage me. Sometimes they relay stories about a relative's child who is similar. Some strangers have told us about doctors or practitioners who have been perfect for Max. Some of my friends will say "well, you have a tougher situation", and I remind them that raising any kid (or 3 or 4) is tough. At least I only have one!

  24. Instead of just wishing that they not stare, I would LOVE for them to ask me why my daughter wears braces and uses a walker.

  25. I think sometimes moms of "typical" kids are a little scared that we will be judged by moms of special needs kids, and honestly don't want to deal with the anger or weird looks if we don't act correctly. Does this make sense? I want to do the right thing. I want to teach my kid to do the right thing- but sometimes we're met with anger and passive-aggressiveness when we try to ask questions or reach out, and that makes us nervous.

  26. I am so grateful for this sharing of information. Your readers are awesome, Ellen. Now, if only we could plan one big playdate. :)

  27. Be a role model for your child. Engage with my son, treat him like any other child and your children will learn to do the same.

  28. This is such a great post, Ellen. It's something I find myself thinking about quite often...and not just with strangers. Sometimes I find my two year old staring at his big brother. I know that Brian can tell that there's just something "off" about Gavin. I know that he will someday ask me what's wrong with his brother. I want him to be curious - and I'll want him to someday ask me about other different people in the world. I think it opens up a line of communication that is important...about acceptance and tolerance and kindness and compassion.

    Some things I wish other Mom's knew that have "typical" kids? It's this:

    I have "typical" kids, too. Gavin can misbehave just as much as Brian.

    I am not special because I have a "special needs" child. I'm just doing what I have to do - and you would do the same. Don't make me a heroine...or think I have all the answers...because I am not, and I don't.

    I WANT you to talk about your problems with your kids. Gavin's medical and development issues don't trump your potty training dilemmas. It actually hurts my feelings when you assume that your problems aren't as important as mine.

    I really get uncomfortable when people fawn over Gavin in a fake kind of "I feel sorry for him so I'll over compliment and gush". Actually, I get uncomfortable when people feel sorry for him - or us! Trust me, he has a great life and is so happy! No need for pity here.

    Finally? I want other Mom's to know that although there are extra challenges in caring for a child with extra needs... that the journey is so rewarding. Gavin was sent to me for a reason - and Brian was sent 13 months later for a reason. Gavin has changed me in ways I can't explain. I've become a better person because of his determination and mere existence. And Brian...he turned out to be Gavin's best therapist. Everything turned out just perfectly.

    Oh, and one more thing. I want other Mom's of "typical" kids to know that I feel sorry for them - their lives must be so boring. LOL!

  29. I am so loving the points here, so much so that I can't tear myself away from the screen and go to sleep. Kate, your "boring" comment just made me laugh.

    Anon: Me, I just wish that people wouldn't stare. I don't particularly want people to ask me what's up with Max, although I will answer if asked. I guess one of the bottom lines here is that, as special needs parents, we have differences in the way we'd like to be treated, as well as how we'd like our kids to be treated. But we do have some common requests—respect, playdates, no pity, no Pollyanna uberoptimism—as others are noting here.

    Craftwhack, not sure what sort of parents you have encountered. I am never ticked off—unless people blatantly stare. I personally don't mind questions, unless they are way too probing for someone I don't know all that well. But not every parent wants to respond to questions, and I hope you don't take that the wrong way.

    You know what I've really appreciated over the years? If I'm dealing with, say, a Max meltdown in a restaurant or something, and another parent has just looked at me and said, simply, "It's hard sometimes, isn't it?" Just that. Nothing about special needs. Just parent to parent empathy.

    Oh, and Jill: great idea! Playdate at your place?

  30. I want people to know that my daughter's special needs do not define her. She has many challenges, but she also has so many gifts ... and, guess what? This is true for everyone. We all have challenges (albeit in varying degrees and types) and we all have gifts (albeit in varying degrees and types).

    Also: When you see my child running and humming and flapping her arms, you do not need to comfort me or tell me that "all kids do that." I am already comfortable with who she is and how she acts.

  31. 1. Monkey has a physical disability, but that does not mean he is delayed in all areas. Don't be condescending when talking to him or assume that the fact that he has physical delays means he has delays in other areas as well.
    2. Do not ask us within five minutes of meeting us what is "wrong" with him. In fact, refrain from using the W - word altogether. Instead, take the time to get to know Monkey as the whole person he is before inquiring about is disability. You wouldn't want strangers coming up to ask you intrusive questions about your area(s) of weakness or medical history; my son deserves the same respect.
    3. It's OK to offer to help. Even if I turn you down, I will appreciate it.
    4. You should not feel sorry for my son or for me. In fact, your pity irks me and damages him. All it does is send him the message that there is something "wrong" with him - and there isn't.
    5. It's OK to make friends with my son, and encourage your children to do the same. He may have some differences, but he's more or less like every other little boy. At the same time, please do not act as if you're doing a noble deed by befriending the "poor little disabled boy." My son has a lot to offer, and you are just as lucky to have him as a friend as he is to have you.
    6. My son is just as perfect as yours, and yours is as imperfect as mine.

  32. It's OK to make friends with my son, and encourage your children to do the same. He may have some differences, but he's more or less like every other little boy. At the same time, please do not act as if you're doing a noble deed by befriending the "poor little disabled boy." My son has a lot to offer, and you are just as lucky to have him as a friend as he is to have you. ----second that----

  33. One more thing.. if I'm the only adult helping on the playground (because my daughter needs physical assistance) and all the other adults are standing in a circle chatting please help out. I love my kid and would love to chat with you but I need to help her physically be included and I don't especially want to help your child across the monkey bars while you chat!

  34. Don't talk to my child in a baby voice. She's not a baby, she's 2. Don't say "poor Julia, what's wrong?" and give in to her when she's crying. What's wrong is that she's 2, and you're being played.

  35. Ooh this is good! I would like to say I LOVE it when you hang out with my family even when we're unpredictable or awkward and I appreciate the friends who embrace my whole family - understanding that life is tougher for all of us, including the 'normal' siblings.

    To some friends I'd like to say that although we are coping fine and seem to have it together it doesn't mean our life isn't harder. When I say we can't manage a particular event or I'm feeling tired or struggling, don't look at me as though I'm exaggerating.

    I love hearing about your children and their successes are wonderful - don't be embarrassed to share your joy! Mainly I'd like to thank my friends for sticking with me!!!

  36. Please don't ask me what's wrong with my daughter. My answer will be nothing what's wrong with you and I'll get super defensive. I despise the "wrong" word. I much prefer what is her diagnosis or just talk to us. I'll be happy to educate you and we want to raise awarness. My daughter is a stroke survivor and yes babies and kids do have strokes.

  37. Fab Blog Ellen.
    So many good points.
    However, one thing we struggle to consider is this:
    How would I have reacted to seeing my child as he is now, when I had never encountered disability. Way back before sleepless nights, operations, hours in waiting rooms, physio, medications, seizures .... How would I have reacted?
    Would I have naturally smiled and said hello to him? Would I have talked to him? Would I have avoided asking what was "wrong" with him. Would I have avoided showing pity for his condition?
    Honestly? I think I would have failed miserably through sheer ignorance and kicked myself for my ineptitude as I walked away.
    We are steeped in years of dealing with our kids conditions and the sheer emotion and utter exhaustion of our lives and we know their true worth and how they've enhanced our lives. I'm personally honoured to have my son in my life.
    Blogs like this one are superb for closing this gap in knowledge and for that we have to thank Ellen.

  38. As a sibling I want to say to other people -
    Don't ask me about what my brother can't do. Ask me what he can do, so I can tell you about his laugh and his smile, and the way he lights up a room.
    Understand that when you ask how he is, and I say he's fine, I mean fine for HIM, not fine on anybody else's scale or standards.
    Do not compare him to other kids/people with CP and highlight what they can do, and he can't. I am happy that the boy who lives down the road that has CP can do all these things, but direct comparison is akin to salt in the wound.
    And please, don't describe him as a baby. He is a 10 year old boy trapped in a body he has no control over. He is NOT a baby.

  39. People, young and old, with severe disabilities are a metaphor for the human condition; society stripped to its bare essentials. Our children's lives tell us much about the fabric of society and its quest for the perfect relationship, the perfect home, the perfect child...all which become extensions of ourselves.
    After 13 years of care of a child with severe limitations, I believe that people of good heart embrace our kids, indifferent people do not. Unfortunately, the indifferent far outnumber the good. Unless you have a child with disabilities that you love, you will get it (the message of this blog). The price of understanding and acceptance for others is too high and does not fit into their quest for having "the perfect...." Don't get and probably never will.

  40. I would love for people to know that everyone experiences sensory input differently.

    What I would give for regular ed teachers and other parents who understand that a child bumping into my kid can feel, to him, like someone attacked him. Or that someone sharpening their pencil can make him fail a test.

    Or that my other kid who bumps your kid on the way to the slide didn't even notice you child was there, and that's why he didn't apologize for hurting him and cutting him off, even though my kid is 8 and yours is 4. he's still not a bully or mean.

  41. Phil - So sad to say that you are right about society, perfection, and the indifferent. I wrote a post just last week about the things I would tell my young mom self (i.e., when I had a newly-diagosed child), and one of the things I said was to expect your circle of friends to change. What I have found is that there are basically three types of people: (1) the ones who "get it" because they live in the world of disability/special needs; (2) the ones who don't get it but embrace you and do their best to empathize, because they are warm and caring people; and (3) the rest who are either indifferent, uncomfortable, or just plain a-holes. I hate to group those three subgroups into one set, but they're often hard to distinguish from each other; hey are the ones who either look away or look through my child.

    The expectation of perfection in our society is very disturbing. It's not hard to see why 90% of all babies diagnosed in utero with Down syndrome are aborted when you consider it in those terms.

    The good thing about this crucible of disability, from my perspective, is that the people who are really my friends are REALLY my friends - I've had fewer, but much more meaningful, friendships over the past eight years.

  42. Yes, my child has a g-tube. Yes, shoe does eat some things she does eat by mouth. No! I do not know when she will be off the g-tube. She will be off the g-tube when she can eat all of her calories and water by mouth. Quit asking me this question. Oh, I'm not a germaphobe hermit, I am a mother of a former 25 weeker who weighed 1 pound.

  43. Being the mom to a special needs child can be lonely and isolating. Don't assume that I have no sense of humor about my situation or that I'll think your problems are petty compared to mine. Just because my family is different than yours, it doesn't mean that we can't be friends!

  44. The most hurtful and ignorant comment I ever encountered was when I was pregnant with my fourth child (Baily has down's and was my 3rd)...I was asked, " What will you do if this baby is born like him?" LIKE HIM??? Seriously I could have probably committed justifiable homicide. Instead I responded love him with all my heart and walked away. I also had to stop being a part of due date message boards in my later pregnancy because people would get a positive Quad screening and act like their world was ending. I am sorry but my son isn't some horrific plague upon my life. He is my heart and my soul, and some days the only thing that makes me smile. I couldn't imagine my life without him and I wouldn't change a thing. Lastly not so much about the disability...Yes I have six children, yes they are all mine, no I am not Catholic, yes I know what causes it, and I am sorry you can't handle the 1,2,3 you have. Maybe you should have figured out what causes it because my children are my life and never a burden!

  45. Our daughter is non-verbal with Down Syndrome and Autism. When she came into our family through adoption at age 6 she was tiny and people stared. Now that she is 14 and although still small for her age, we find that we have the opposite problem it's like she is invisible. Our daughter carries a handful of her dads socks wherever she goes and often will rock from side to side and shake her head and hands, while making a growling noise ( I prefer to think of it as purring). When she starts doing it in public I will tap her to redirect her, but when people see this they usually quickly look away. She is a beautiful child with an awesome smile. I am always so grateful when someone says hello or smiles at her.

  46. What I want other parents/adults to know about life with my son w/ autsim...

    ~ I am not a better mom than others. Having a child with special needs does not make me better, I just have different experiences and knowledge.

    ~ Don't tell me it is OK for my house to be a mess unless you have seen it or tried to walk through it.

    ~ I would love to try to have a friendship, but sometimes you need to do a little extra to get me started. It has been a long time since I've had the time and I need to be reminded how to be a good friend.

    ~ If you would like to help, don't say "What can I ..." it is too easy for me to say nothing. Instead say "Can I mow the lawn?"

  47. Abby is almost 5. She looks almost 5. She runs and talks and plays like an almost 2 year old. I know she bumps into you and your kids. I know she tries to grab your food and drinks. I'm sorry she cut in line for the slide. She loves to play outside, and it's our park too. If you ask me I'll tell you, but please don't judge her or my parenting. Please let her be happy and have fun.

  48. Great post and great comments. I really appreciated what @dderbydave said. I try to remind myself that I didn't always react perfectly prior to having a child with special needs (nor do I now in all honesty).

    I also relate to what @GreenGirl said about the playground situation. I avoided meeting up with friends at playgrounds for awhile because I knew they would get to chat and I would be on the chase keeping my son safe. Now I simply ask, could we take this chat on the move, meaning let's talk while I'm actively chasing my kiddo. My friends have been happy to keep up with me, but I really did have to ask.

    Finally, I think the time to talk with your children about not staring or asking "what's wrong with that child" is before the situation arises. Take opportunities to talk to your children about kindness in general, not teasing, not bullying, thinking about how you want to be treated, making efforts to be friendly to everyone, smiling and not staring.

  49. Even as the mom of a special needs child I am still so bad at innitiating contact with other parents of special needs. I so want to but I dont want to seem like I am only making friends bc we share one (extremely variable)thing in common. I saw a boy at the pediatrician's office the other day acting out and after watching him for a few minutes I thought he might have been autistic. I wanted to go over and talk to his dad since he looked like he was having a rough day but what on earth would I have said? And what if he didnt have special needs... what if he really was just acting out? So instead I sat and watched... probably stared. Probably made his dad's day worse. I have got to get better at this. Also, I know I have a tendency to observe others with special needs more than I should bc we are still searching for a diagnosis for my daughter. I'm always looking for similarities in the hopes that I can strike up a conversation (obviously not my strong suit) that might lead us in the right direction. I dont envy the parents of typical kiddos - its a tough thing to know what's ok to ask and what's not.

  50. I have a question. I am blessed with two typical stepsons and we are trying to conceive right now. I am curious if you have ever felt resentment in having a special needs child? If yes how did you handle it?

  51. To Makala - I have never felt resentment at having a child that is different from others. I cant even conceive the idea. I have so much love for her it is almost unbelievable. I think I am a better person/parent than I would have been otherwise.

    That being said,I have felt anger that my daughter's life has to be so difficult at such a young age. I have wished that things could be easier for her... notice I didnt wish away what makes her "atypical" only some of the things that no child should know of. Things like too many doctors, too many needles, too many scans. But I dont think that is the same as resentment.

  52. And "What grandparents of kids with special needs want others to know."
    Please, our daughter was not "chosen" to be the parent of a special needs child. She is a "typical" mother with all of the "typical" worries of a parent. It's been said many times here that a parent does whatever their child needs...and our daughter is that parent. Please do not give us that sympathetic look as we don't need sympathy. We have learned so much from our granddaughter so please ask questions and learn along with us.

  53. WOW What fantastic conversation you have going! I read maybe the first ten and got overwhelmed. I'll just share mine...

    Having a special needs child doesn't make me "smart enough", more patient, or "a saint". At times it makes me crazy, tired, and sad. Other times it makes me happy, proud, or scared.

    My son's disability isn't obvious, and when you notice it, please don't call him "cute" or assume that he can't understand things. He is almost 11 and "cute" is childish. He doesn't want to be "cute", he wants to grow up just like your kid. He may be delayed and immature, but he understands very well.

    My son understands a lot more about God that most kids do. He "gets" the Holy Spirit in a way most adults don't.

    If you are inviting my son to go do something that I feel he won't be comfortable with (due sensory issues) and I tell you that, please don't then ask my son if HE wants to. He will say yes, and sometimes he doesn't realize what things will be like until he's in the middle of them and can't get out.

    My son wants to have friends desperately, even though it seems like he plays by himself when he's in groups. He loves friends!

    And lastly, I am not over-reacting if my son disappears and I don't know where he is. This is a personal safety issue which we haven't yet reached a point where we are comfortable. He acts on impulse and takes off. Sometimes to people's houses we don't know. I am not over-reacting.

  54. I don't like it when people expect me to talk about my son's disability in front of my son. He may not be able to talk, but he can hear and he understands everything. Please be positive in front of him. Imagine standing with your typical child and having someone ask you to explain to them why your son can't do this, or why your daughter is so bad at doing that. Would you degrade your kids by answering such questions in front of them?

    Also, please be aware that I have to facilitate everything my son does. He cannot move or play independently, so I have to help him with every single thing. I wish I could stand with the other parents and socialize, but I can't. So maybe venture out, and join me and my son and just chat for a bit. Not about disability, but just about life.

    As a mother of a little boy with severe CP, I am a good actor. I may look like I have it all together, and I may smile and seem in control. But it is hard, and I struggle and grieve everyday. So just be kind, and try to include us. Being in this situation is the most isolating and lonely experience, and understanding friends are hard to find. A kind word or gesture goes a long way.

  55. Believe it or not but the staring doesn't bother me. My daughter will tell people 'You wanna look at me? Watch this!' and then treat them to an imprompto contortionist show that just leaves them baffled.

    What bothers me, what hurts and has a few times cause me to snap at strangers are the whispered comments. No I'm not a bad mother. No my kids don't just need a good spanking. No I'm not ashamed of the way my kids act. Jake and Chris both have FAE, FDE, OCD, ODD, ADHD, & Bipolor. They have no more control over a large portion of their behaviors the they do over the Texas heat. The flip side is don't let my children get away with whatever they want just because of their issues. It drives me insane when people say 'Oh just let them do this/that, it's ok they don't know any better.' They are 7 and 5, they know what rules are, they can cry on que and you are SO getting played and conned.

  56. I'm a lucky person, I guess. I live in a small town where everyone knows everyone. My kids are just part of the landscape, and I don't get much staring or questions, because everyone already knows everything anyway!

    Maybe this is why I don't get offended or upset by staring or stupid questions. I guess it doesn't happen to us as much as others. Anyway, when we do encounter staring, I smile and say hello, maybe introduce the kids, and simply refuse to take the blatant curiosity "the wrong way." I've made some friends that way. When I get stupid questions, I answer them without getting pissed off. I correct terminology without coming off like a superior snark. My view? Never pass up an opportunity to educate--you don't need a college degree to do that kind of teaching!

    My kids are 'not' like other kids. They are decidedly different, and that's just fine with me and their grandparents (and more importantly, them). In a perfect world, that would be fine with everyone else, too. When I get the opportunity, I make an effort to make the different a bit more familiar. It helps that my kids have good personalities (when my oldest isn't in a mood, anyway).

    The reason I took this approach is because, very early in my motherhod, before you could "tell," if you know what I mean, I was in a food court and saw a SN mom go OFF--and I mean go ***OFF***--on an old lady who did/said all the "wrong" things, many of which were mentioned by others here. Thing is, I could see from twenty feet away that the old lady meant no harm. She looked absolutely crushed after she got that "F-you, don't talk to *my* child like that, who do you think you are" dressing down. She was trying to reach out, clumsily, and got her ass handed to her. So yeah, that hyperdefensive behavior does happen; I've seen it. Not all moms of SN kids are June Cleaver, some are more Lois Griffin--we're like everyone else that way. No one canonized us that I recall!

    It's not easy raising kids who need a bit more help. However, I find it easier to just leave that shoulder chip at home. I deliberately assume that all people mean well--even when they don't--and I approach them that way. Why should I have to carry their baggage and be defensive all the time? Kill 'em with kindness (or shame them with it)--it works for me!

  57. I KNOW everyone here is not in denial about how hard it is to be a special needs mom (may I say MUCH harder?), so maybe we can extend a little grace to people who "pity" us and feel sorry for us? Maybe even, gasp, thank them for acknowledging the extra challenges we face? "Thank you for your concern. I'm an awesome mom, and you should get to know me!" Or, "Thank you. I have MANY blessings for which I am VERY grateful." And to those who ask, "What's wrong with your kid?" a benign, non-hostile "What do you mean by that?" response may actually stimulate a conversation. We can't determine or orchestrate the words/actions of people around us, only our own. Let civility reign.

  58. My "favorite" comment is why did you have so many after a person hears that I have three children with different disabilities. My babies are all three a give from God. My 11 year old son had three strokes in four years. CP was the least of my worries. My son is alive, my girls are not "struggling" with their disabilities. They also have learning disabilities, but both are on the honor roll. I have to work harder to keep them there, but so would anyone else that noticed their kids struggling in any subject. I have been called a remarkable woman. Well, yes I am, but not because I live and would die for my children! I don't have a problem with people staring at my son, my youngest daughter asked me why they are staring at her, her sister, or her brother, I just tell her that they have never seen a more beautiful child and they are jealous. I may need to come up with something else at a later time, but it works for now.

  59. Hmm... I'm very late in the game and you've gotten lots of good reaction on here. But I wanted to say that I loved Andi's post (which she linked to above) called "A Primer for the Typical Folks."
    My son has CP, but I still don't know how to react when I see *other* people with disabilities. I've heard this "don't stare" thing so many times, that I act like they aren't even people, just part of the scenery.
    Andi says it's OK to stare as long as it's with a smile. I like that much better than simply telling people not to stare. People stare because they are curious, not because they are mean. If you make them feel bad for staring, they'll just have negative feelings about the interaction and the person.

  60. That he's not Breakable. Your kid isn't going to hurt him by playing with him. (Almost 3, developmentally a 6 month old so he's on the floor a lot) In fact, playing with him, and a few bumps and bruises, besides making him laugh his head off, is a really good social and developmentally "normal" thing that he desperately needs. And when I say not to worry, you can't hurt him, I REALLY mean it!

    And Joy- I've stared before too - but then I try to quickly engage them about what I was curious about. "What type of chair is that? My son will soon need something like that. Is it comfy? Easy to push?" or "That is the greatest homemade walker, was it easy to make?" I don't think it's always easy to know what to say. Recently a girl, possibly similar to my son was trying to interact with me but nonverbally. I spoke to her but I think I made her caregiver feel a little awkward but I want to say (because it's not obvious in my son yet) "We're like you, I know some of what you're going through!", I want to smile and give my love somehow! It's hard to connect, to know what to say but I want to!

  61. To answer Makala's question, Shannon put it very well. I have never once felt resentment toward Monkey or my role as his mom. Truth be told, I don't even resent his diagnosis. What I do resent, mourn, and get generally pissed off by is the pain his disability *sometimes* causes him. My son as a whole is a wonderful child who has so much to offer. I am very honored to be his mother.
    I'll add one more item to my already long list. I know people sometimes don't know what to say to a parent of a child with special needs who is having a difficult time, but the last thing I want to hear while monitoring my son for seizures and controlling a meltdown is a chipper little comment along the lines of, "God never gives you more than you can handle!" Trust me, sometimes, it feels like He does. Instead, something like, "I'm sorry you're going through that, how about I do (insert offer here) to help?" I'd really, really appreciate that.

  62. My sister had severe brain damage and couldn't walk or talk. In some ways I used to think she was lucky for all the reasons your readers have commented on. Annie never had to face ridicule.

    But then Annie never got to walk or talk or have friends or enjoy life in even the smallest of ways.

    When I see individuals, I appreciate and celebrate what they are able to do.

    The problem with children and adults today, and the making-fun or bullying that can occur is one of the darkest attributes of human nature.

    People are ostracized and ridiculed for all kinds of reasons. My son was gifted and really took an emotional beating all through grade school.

    We have to stand up and speak up when we are witnesses to bad and hurtful behavior. And we have to surround others, especially those who face more challenges through no fault of their own, with love.

  63. I just have to say one more thing. I read back through the comments and I sense a real pervasive underlying anger at times.

    People who don't have special needs kids don't understand. It's true. But we are all in this world living together and we all need to be kind and patient with each other, whether our problem is CP or lack of understanding of someone with CP.

    Let's help people understand, with kindness and patience.

  64. I'd actually like other special needs DADS to know that the work we do is recognized, and that the strong emotions that we feel are acknowledged.

  65. CMSmith, I felt the same... You know what it is? I think that we often don't have an arena to air thoughts like this and so when we put them into words, they can come out kind of sharp at times.

    I don't think most of us walk around with an underlying sense of anger that we convey to others. At last I hope I don't. Sometimes, I'm sad. Mostly, I'm just TIRED!!! What mom isn't?

  66. BRAVO ROB!! You just reminded me to email you, I'm working on a special Father's Day post.

  67. Teach your children patience with kids with disabilities.

    My son has a mild form of CP that makes him run a bit slower than the other kids and can make some sports harder for him, but he loves to play them. It breaks my heart for him to tell me that nobody will pass him the soccer ball during PE.

  68. We at the parent show think your blog post is especially well-worded and helpful to those parents who may not realize what it was like to be a mother to someone who has any type of disability. Many children have disabilities, and sometimes it is hard for other children (and their parents!) to understand why it is. The Parent Show caters to all different types of parents, and parenting issues - would an episode on interacting with children with disabilities be of an interest to you? Please let us know!

  69. The comments here are amazing. You know what is the most interesting to me is that so many moms have similar yet dissimilar thoughts and reactions to the interactions of a typical kid or parents of with their a-typical kid.
    (the language is new to me so forgive me if I screw up!)

    I have to say I'm often confused as to how to reach out or respond due to all the different reactions?

    I'm a super extrovert and tend to talk to anyone about anything. And I try hard to help my kids to branch out and reach out as well.
    So forgive us if we stare a bit while we get up the nerve to talk to you! :)

    So from one here, I'm not supposed to ask what the issue is with your kid? Really? How do I know how to interact if I dont' understand?

    From everyone here it seems I should not STARE. But the thing is, I tend to be the really interested type and have a background in the sciences so often I can understand the issues if explained to me.

    I've had extremely long conversations very recently with moms of autistic kids because SERIOUSLY I have no idea what it's like? I ask a million questions because I genuinely want to know. And I've never come across anyone who wasn't happy to unload all the small and big things that make up their kid's disability.

    Another friend's DD has mild ADD, and yet she comes across to everyone as fine, so why would they chose to medicate? I admit I was included in that. Until I really listened to what they were dealing with and how extreme it was. I learned. and understood.

    I guess what I'm saying here and tell me if I'm wrong, is that when I am genuinely interested in understanding someone's child's issues.. That person has always been happy to share with me.

    My sister's DD has CP on one side of her body from a stroke. And she works so hard to help her overcome every single small step. I DO understand these things even if my kids don't have any disabilities.

    And I've come across folks who 'assumed' stuff about me and I was equally offended. I'd think: 'Really, you are mad at me because I stopped for a minute and asked about your kid?' Because walking by feels like I'm going out of my way to ignore you?

    I'd love additional advice!

  70. Carissa, you bring up some really good points. I'd just like to address the bit about asking about the disability. In *my* opinion, it's OK to ask about my child's disability - after you've gotten to know him. It's perfectly fine to do so, and I actually appreciate friends and family asking about Monkey's needs. The ones who get to me are the strangers who march up to us at the grocery store and within two minutes of talking us ask, "So, what's wrong with him?" Sure, he may wear a brace on his leg and walk with a limp. That shouldn't affect one's ability to compliment him on his baseball hat and ask him who his favorite player is. Think of it this way: if you were making idle chitchat with an overweight adult in line at the grocery store, it wouldn't be polite or appropriate to immediately ask him why he's so fat, right? It's the same deal when it comes to my son; it's a matter of respect for him and his feelings. By all means, ask me questions - after he's wowed you with his vocabulary, told you about his plans to be a marine biologist, and has argued with you about which baseball team is the best. ;)
    I totally understand your comment about staring as well. There's a fine line between coming off as though you're ignoring or gawking. My advice is to try not to worry about offending in this case. Unless you're rubbernecking or looking at your shoes as you run from the child with special needs as if he were The Blob, most parents won't notice or care.
    Although it may not seem like it here, I suspect that most parents of children with special needs don't walk around feeling angry and defensive. I, for one, certainly do not. As Ellen said, we just don't always get the opportunity to voice our feelings on the subject, so I guess some of us are a bit outspoken when we have the chance. Cheers.

  71. @Chelsea, that is a really good point. That bugs the crap out of me too. My daughter is 28 months and can't sit without help, so at play groups with "typical" kids, she is rolling around on the floor. If any of the other kids get too close to her when they are running/jumping/etc., their moms jump all over them "watch out! Don't step on Julia!" I have another 28 month old at home - I can assure you that she is jumping ALL over her sister, and Julia loves it. Plus, a lot of times it's the only time any of the kids get close to her.

  72. I don't have a problem with someone asking about my kids issues and the causes of said issues. What Ii have a problem with is being asked 'What's WRONG with them?' There is nothing WRONG with my kids. This is simply the way they are. Instead of asking 'What's WRONG with her?' ask 'What causes her to chew her lip until it bleeds?'

    Also, I've seen a few other refer to the fact that their kids are adopted. Have any of you ever gotten the question 'Did you know what was WRONG with them when you adopted them?'

  73. @Carissa(GoodNCrazy)I don't mind staring at all. I don't mind you asking what is wrong with my son. I would probably answer there is nothing wrong with my son, or that he is angry that I won't buy him a toy, etc. I am not sure how exactly to bring up questions about his disability, to be honest. Most days I am happy and after I said that there is nothing wrong with my son I would smile and tell you he has had three strokes. I don't mind "what happened to his hand" too much. But, like every other person on the planet I have bad days. Days where my son is throwing a fit and I just want to get out of the store as soon as I can. I don't think there is one way to handle children with disabilities and their parents that will not make someone angry. I am like every other mother, ask me about my kids. I do have one thing that irritates me more than anything: My girls have bipolar disorder, there are people in the psychiatric profession (nurses, etc) that come up to me and say: "I am a psych. nurse can I help you, with anything? Did she take her meds?" Really? I have been doing this for 14 years, do you really think you can handle her better than I can? and did she take her meds? Am I so incompetent that I can't remember her meds or do you expect me to say, "or yeah, you are right I didn't give her her medications! That is why she is laying in the floor screaming cause she isn't getting her way, Thank you so much!!" You know I do kinda sound angry, but I am not. I love my life and am thankful for the job our good Lord has entrusted me with. I have only "attacked" one person and it was regarding my son's disability. We were in the local Wal-Mart, my son had an accident and his pull up didn't hold. My mother was helping me clean him up. We were using the handicapped bathroom. The cleaning lady verbally abused us because an older lady wanted to use that bathroom. Long story short, she no longer works there.

  74. People need to know that my son is an individual. They need to see past the label - autism - and see him for what he is: an incredible human being with feelings and a lot of love to give. My son is smart, funny, caring - help him reach all of his potential don't put him aside. Don't think he can't do stuff, don't assume, don't base your idea or opinion of what autism is.

  75. DDMom, you hit the nail right on the head. Our children are people, first and foremost; they are not walking billboards for their diagnoses.

  76. I'm going to have to disagree with a few people here regarding the "whats wrong with him?" question. When your son is obviously disabled and someone comes over to talk with you, it's kind of the elephant in the room no one wants to mention. However if they just comes right out and ask, then it gets it out of the way and they can then actually get to know your kid as a person. Also, how should they ask? "What is his diagnosis?" Really, who is going to think of asking that way? I don't take it as offensive, just (hopefully) true curiosity and a desire to know. Not that they think your kid is actually less of a person. I believe most people have good intentions and if you can get past the first awkward moments you can meet some great people and educate them as well.

  77. @Kevin,
    Maybe parents' experience with the whole "What's wrong with him?" issue varies a bit depending on the situation, but in my son's case, I stand my ground when I say that it's inappropriate. My son has a glaringly obvious physical disability, but he's also a bright kid who is aware of everything around him. The "wrong with him" comments and dwelling on his disability instead of simply acknowledging it as one of the many things that makes him who he is hurts him, and justifiably so. Have you ever had to answer a very upset child after he asked you why people only care about what he can't do and not what he can do? I can say from experience that it's heartbreaking all around.

  78. Just because my daughter is the size of a baby does not make her baby! Please don't treat her or touch her like one. She's 4 1/2 even though she is the size of a 1 1/2 year old. Also remind your child not to pick up children on the playground because you think they are a baby! It's not cute and it can be dangerous to pick up another child that you don't know.

  79. t's going to take me some time to catch up on all of the comments. I am amazed and awed. But I just read Kevin and Jo's exchange, and I wanted to chime in.

    I think it is AWFUL when people say "What's wrong with him?" Like Jo says, it focuses on the disability. It is doubly worse if Max is standing there—how dare you talk about my child as if he isn't there! I also just think that question itself seems prurient.

    But if someone I've already been in conversation with asks about Max, I will discuss his CP and, sometimes, his stroke. I do want to raise awareness about CP, stroke, being differently-abled—and I also want to help people see that Max is a GREAT KID, not just A KID WITH CP.

  80. 1. Don't assume that I did something wrong during my pregnancy to cause my child's Emanuel Syndrome. It's Genetic and No I did not know while I was pregnant and no I have no prognosis of what his life will be like in 10 years. He is not a crack baby, I was not anorexic, no I do not wish that I never had him. That is not a conversation for a first meeting I assure you.

    2. Please come up to me at the park and say Hi to him, or to me. It's been a long time since I've made friends and have maybe 2 other special needs parents as friends. It would be great to make some friends, even if it's just for the hour we are at the park.

    3. Don't ask what's wrong with him, but ask what his diagnosis is. I would get extremely defensive when someone would ask what is wrong with Seby, I would immediately say nothing is Wrong with him, what's wrong with your perception? and of course well that's not very welcoming is it?

    4. Don't assume that if he's having a fit or screeching in the store that I'm a bad parent. Just because he "looks normal" for a 21 month old, obviously doesn't mean that he is. Trust me, if I'm at my wits end in the store and you have an idea on how to help without assuming that it's just crappy parenting, SAY SOMETHING! I'll never forget my brother who has NO CHILDREN and no experience with them pulled out his phone and downloaded an app called "Hypnotoad" this made my son completely quiet looking at it for 30 mins. It was amazing and gave me a moment to just breathe. So please with no judgements, if you have an idea I would more than likely hug you instead of bite your head off. Or just stand in shock that someone would be nice enough to help.

  81. I want parents of typical kids to know that I love Ruby unconditionally. I wouldn't change a single hair on her head, even if I were given the opportunity. So don't feel sorry for us. And if you and your children get to know her and other kids with special needs, your lives will be enriched beyond your expectations.

  82. @Jo and Ellen. Actually I think you both make some excellent points and since I commented I have also been discussing this with my wife. Our son Zac with CP is only 2 1/2 years old. But, when you talk about our kids being older and hearing these comments made in front of them, it makes me realize that it really isn't ok. I guess I didn't think it through all the way. I also like Ellen's comment on educating people about CP and talking about it after you already know them a bit. More appropriate.

    It still makes me wonder how I would act around kids with disabilities if I didn't have one myself. It isn't easy to know how to approach or talk to someone and everyone doesn't have super social skills. I guess what I am trying to say is that I would like to give people the benefit of the doubt on their intentions, until proven otherwise. Maybe I just haven't had enough experiences yet on people asking about Zac. In any case, I recant my previous "it's ok" post. See... education for all in this blog :)

  83. Great discussion!!! I am new to this world, as my son w SN just turned three in April. You can add me to the "I Remember How My Perspective Was Before I Was Unwillingly Thrown Into The SN World" group. I don't mind the stares, the pity, or the questions. I just love to share my son with others, and so *far* I've never encountered anyone rude, just curious. I'm still processing it all myself.

  84. My daughter is 3.5, undiagnosed, some rare genetic thing, lots of developmental delay in all areas. I'd like parents of 100%-ers (which is how I think of typical kids) to imagine having the following thoughts on a daily basis: I wonder if my child will ever read, ever be able to get lost in a book like I did as a kid. I wonder what becomes of children like mine when they are adults. I wonder if my child will ever have a romantic relationship, I can pretty well guess she won't ever have a child, or do her taxes, or go to college, or drive a car. I wonder when her daycare will kick her out for not being potty-trained. I wonder what it's like to watch your kid playing in a park while you casually chat with another parent, at ease with your world and with your child, swapping stories of all the things your kids can do. I wonder if I ever won't wonder what you are thinking about my child. I wonder what's lurking in my daughter's undiagnosed condition, still to come, maybe cancer, maybe a stroke. I wonder what age my child will stop learning. I wonder what it would be like to just relax with my child in a public place. Just relax with my child anywhere, actually. I wonder if there will come a time when I can just not think about my child's differences every single minute of the day.

  85. Dining out one evening with my 2 sons- a stranger came up to our table and said" I work with his kind, where does he go to school" she was referring to my son with severe CP. It took every bit of strength to not make a scene."His Kind?" her words still make me crazy.. I knew for the well being of my other older son, the best thing I could do was to answer with a witty comeback.
    I want others to ask questions... But please remember to at least say hi to my son, don't talk about him, in front of him, as if he's not there.
    Thank you for opening up this question... I feel honored to be one of the "special" parents who were given a Beautiful child to raise.

  86. Julie Clee- I think you've hit the nail on the head there. When folk talk to Ashley first I know they "get it". They may have worked with disabled kids or be blessed with one in the family or maybe they're just one of the few who don't see his condition as "wrong" or a "problem".
    Yes our kids have challenges but they don't define the child, they are just one aspect of their lives.
    See my child.
    See me as a parent.
    THEN see the disability.

  87. Well said, I find the stares so rude too to my Oatie. What I find totally annoying is when other peoples "perfect" 3-4 year old is doing soothing that is not very smart at all, demonstrating how intellectually unbright this "perfect" kid is... (perfect=physically fine), and then they shake their head or pity me for Oatie, and I'm like, Oatie is way smarter than your child who is trying to sniff up glue. Why do people attribute intellect with able bodiedness? Why do people think that to be physically sound is = perfect? Who is perfect anyway, I've yet to see a perfect person...



  88. @Ellen - I adore your writing style, obvious love for your family amd passion for educating others! But sometimes i feel like you and other commentors might be preaching to the choir. Articles like this are fabulous beyond measure, but how many of the people who need to read are doing so?

    We need to get the word out by not reacting with anger but but grasping and utilizing teachable moments. As difficult as it can be, turn the irritation (read:negative energy! Yuck!) into a chance to spark positive conversation. Obviously some people will be more resistant to conversation, but if every once in a while, we can educate one person in the "real world", won't that help?

    I am a special needs teacher and even other teachers sometimes drive me nuts with comments that include "oh, *your kids*..." But if one of my students is convinced that a quarter is worth five cents, I'm going to take the time to teach them the true value of the coin... Why wouldn't I do that with an adult as well? We need to teach them that all kids have value! Some will be receptive, some may not... But a little goes a long way.

    We also need to remember that human nature is to try to relate to others. Parents of "typical" kids who try to compare their sleepless night with yours, or her child's love of Dora with your child's obsession with trains are likely just trying to share their experience and try to relate. It's infinitely difficult to keep a conversation going by saying "wow, that's gotta be rough sometimes but you are a great parent." Every parenting experience is different and I love to talk about my child's struggles and celebrations even if they are "typical".

  89. Fantastic post and comments (still have to read through too so I don't know if this has already been brought up). I also wish other moms would understand that when a kid is acting really really "bad", that it's possible that not only is it NOT a "bad kid" (or bad parenting), but also may be pediatric mental illness (such as oppositional defiant disorder, bipolar disorder, etc.). These too are "invisible" disabilities. People don't see anything else obviously "wrong" with your kid, but in fact there may be something significantly wrong with brain wiring/biochemistry/etc. Through my own experiences I have learned NEVER to judge (or stare) no mater how bad the "behavior" is. You just don't know what is causing it. Don't make the parents feel even worse with your sighs, eye-rolling, and smirks.

  90. Sara - Wow - you really got it right. What you describe is what I call the "shadow of our lives". It is the one thing that I wish other parents could see. The empathy and compassion would automatically fall into place if they could feel that for one day. I hope that when someone says that they are sorry for us that they mean they are sorry we have to live under such a shadow and not so much sorry that our children have special needs.

  91. Do not tell me how terribly sad it is that my kid has medical issues, when he's running around the playground laughing hysterically with other kids. Clearly, he's not sad at all.

    Don't correct your kids for staring by telling them "there's something wrong with him, don't talk to them" - I don't mind questions, I *do* mind your rude behavior.

  92. My son has Aspergers.
    My kid may not be so hot on the social skills - but he really wants to make friends -and he tries so hard. Please include us and accept him for who he is, not how he acts. When we are excluded and shunned from social groups, it hurts both of our feelings.

  93. I don't know if this has been shared already. But I really hate it when people say "I'm sorry" or give me the "poor mom/kid" look. There is nothing sorry, sad or pitiful about my son or my life with him. He is a kid just like other kids he just has special needs. But he plays,laughs, and wants the same things other kids do. Honestly, I am so grateful for the experience of raising my child with special needs and I would not change it for the world. Secondly, do not tell me I am a super mom or that you don't know how I do it. I am raising the child I was given just like parents who have children w/o disabilities are raising their kids. My kid just needs a little extra care. I did not choose this or apply for it. I just got lucky and am doing the same thing 99% of parents would do. Finally, can you try to understand that my child is not a typical 6 year old and I can't just let him play at the park or swim with floaties while I sit and watch. He is really like a toddler and it is hard to do camping weekends or be at other people's houses because it is just more work for us as his parents and not relaxing at all which is what some parts of camping or weekends away with family is supposed to be.

  94. My daughter is no more or less 'brave' than any other kid. When a mom says, 'Oh, she is so brave!' That one bugs me. I want to reply, "really? what did she do just now that was brave?" How is a child living with a disability brave? They go out there every day and do what they do. Bravery is a decision -- a choice to be extra fearless or strong. My daughter may or may not be brave but it's not b/c of her disability. She just goes about her day like everyone else. The comment is sympathy and pity cloaked in a pseudo-compliment. I'll grant that it's often well-intentioned, but ugh!

  95. One of the major things I didn't know was how time consuming having a child with special needs can be. My daughter has mild CP and she has 5 therapy appointments a week as well as art and dance classes and doctor appointments. My husband and I both work full time so squeezing in play dates is tricky but we love to do it. So please don't stop asking just because most of the time we have to say no. We really want to and we will make the time!

  96. I wish I could tell most other moms that we need friends just as badly as they do. That we have lots in common with them and to just give us a chance. I find it hard to make friends in general and now well almost impossible. I'm in a few moms groups including the special needs one on my area but still feel like an outsider. So much for southern hospitality.

  97. AS a teen with a disablity I will put my two cents in for parents of teenagers

    i have social skills problems and act in inappropriate ways i know but I am a 19 year old. I want to get out of the house without my parents. I want to do fun things I want to make connections with others I want to have a normal life because i only have one chance at this life nothing is wrong with me I have CP NVLD and OCD but nothing is wrong things are harder yes but not wrong.

  98. I'm not a parent, nor am I disabled; I'm a support worker with special needs children and adults. The staring in the playground never bothers me, beecause it's usually from one SEN child to another; perhaps it should bother me even so, and perhaps that's excusing the behaviour that I would never normally excuse in others. But on field trips, or when I'm outside with the children I work with and other adults come up and ask what's 'wrong' with them, I can get as defensive as any parent. You are quite right in saying there's nothing wrong with Max; why should there be?

    For me the most frustrating thing is when people look pityingly at the people I work with; that, I have to admit, gets to me more than the outright gawking, because I don't believe that the people I work with need to be pitied. They have come to terms with their disabilities (at least, most of them have; some of the children have some way to go) and they love their lives. They don't feel they need to be pitied by able-bodied persons - and they don't pity themselves, which is an amazing thing to see.

  99. My husband has a rather hilarious way of handling "the stare" that has proven to be quite effective. Check it out here

    and see if you might want to give it a try.

  100. Every time I come back here, I read something else that makes me think OH, YEAH. Obviously, we all have different push buttons. Some of you don't seem to mind the staring, but it totally gets to me.

    Jo's made some really great points here. And I agree, it's much more natural to talk about our kids once you know the person...or have at least been engaged in some conversation with them already.

    DDMom: YES, I wish people saw beyond the disability. Do not assume my son is like every other kid with CP or like every other kid with a disability. They have their own unique personalities, like any kid, like any human being.

    Jennihenn, people treated Max like a baby for the longest time. That got to me too.

    Lia: I also feel that other moms forget I have plenty of mom stuff in common with them. I want to be included in those conversations too.

    Mama Emmy: Someone once told me Max had a stroke because I ate too much tuna during my pregnancy.

    Angela: YES. I can't imagine any other Max. I wouldn't want any other Max.

    Sara: There will come a time when you will not constantly think about your child's differences. I promise. It. Just. Takes. Time.

    Julie: "His kind"?! UGH.

    Dderbydave: BRAVO.

    Oatie: Right on, no kid is perfect!!!

    Karen: Plenty of people who don't have kids with special needs read this blog, although I haven't taken a poll.

    mymomshops: Yes, other people have brought up the invisible disability thing, on Jill's blog too. I don't feel "lucky" that Max has visible disabilities but it does make things easier...but then, there are the stares. !

    The Monkey: I SO want Max to have more friends. It's something I am trying to work on. And yes,

    Stacy and Ali: So many people have brought up The Pity Stare. It's hard to take.

    Linda: I also get that "He's so brave" thing. Like your daughter, Max is who he is!

    Elizabeth: I used to feel like an outsider when Max was younger, but now I don't. I think it was mostly me who was projecting that, rather than other moms feeling that... Do you know what I mean?

    AZ: Thanks for jumping in here!!! I know I owe you those questions!


  101. I've not read all the comments yet. working on it. BTW @Tenille - I tell people typical is overrated all the time. It's like my slogan. My response got long too so I decided to post it on my blog.

  102. All I can say is how I feel. When I quit work I lost contact with my co-workers and now have been trying to make friends via moms groups. One moms group (not special needs) I can't get a word in edgewise. The special needs group I haven't made any connections really with anyone, I've been friendly but it just hasn't happened. I guess I feel like it's one more thing in my way, I need friends and this is just one more way it's even harder.

  103. My message to Ellen and all the other moms out there who have kids with special needs 'Day 269'

  104. Elizabeth, If you can manage it, go back to work--even if you only work part time for a few days a week. I work (two jobs, which is one too many but it's for a good cause) but my work is my sanity. I am a widow and me and my boys (both w/SN) live with my parents now--they are a huge help and it is an arrangement that just works really well for us--but if you have a husband or a mom who can take the load off you one or two nights a week, even, go get a job, any job, even a mindless one--it will get you out of the house, talking to adults, and open your outlook so you don't get too insular and start feeling trapped. I don't think I could stand being home all day, especially now since they're older and in school. I was never able to get into the "mom" club routine either--I guess because I am older (way older--I get mistaken for grandma sometimes, used to hurt my feelings but I'm over it now, ha ha) than most moms w/kids who are the age of mine, and I just don't have the patience for a lot of the gossip and crap and petty alliances and finger pointing that sometimes goes with those sorts of gatherings. I just never fit in, I did give it a go for awhile there. I fit in great at work, though, have "work friends" who are a nice outlet, and when I get home after a hard or easy day, I just love-love-love being there.

  105. I have thought about it and think that a part time job would stress me out more. Right now it's really just I need some friends, you know? I guess I just have to hope I connect with someone soon. And I'm not home all day, not by a long shot. We have a couple of down days (Wed & Fri) but he goes to preschool 2 days a week and we drive over an hour each way to his OT on Mondays.

  106. Elizabeth, yeah, I do know. It hasn't been my fate to have "pals" either, which is why I enjoy working so much. My jobs are not stressful (not now, anyway since I totally know the ropes--I wait table and work in a nursing home) but they are paychecks, "exercise" and they get me thinking about someone other than myself, which is good. Plus, I get to interact with all sorts of different people, some nice, some jerks, most interesting.

    I hope you find a solution. That feeling of loneliness/isolation sucks.

  107. Thanks, Felicia. I hope we're not taking over here but it's nice to have people to "talk" to. My mom is probably my best friend and I know that won't last forever so I need new people, she is the one I confide in about everything and am petrified of what will happen when she's gone. When my son is in school full time I plan to go back to work but until then (2-3 years from now) I'd just like a real friend or two.

  108. Elizabeth, Maybe you could think about volunteering somewhere? I know it seems counter-intuitive when you have very full days, but if you volunteered even a couple of hours a month it might take you out of your own head and provide a way to start building a network of acquaintances that might later blossom into friends. Where I work at the nursing home (I do weekends and occasionally fill in for people who are vacationing--it's menial work I do, I am not a nurse of any sort), they have volunteers who come in and do all sorts of stuff with the residents. A lot of people bring their pets by for visits and that's hugely popular, others do things like help people write letters or read to them. Some do this through church (I am not a churchy type--that would never work for me, personally) and some just do it on their own because they have or had a loved one in the facility. You might want to tailor your volunteering to something that YOU like, of course, or something related to your line of work in your career-on-hiatus (it will help when you go back). Maybe your town needs volunteers to help with some events, like, say, 4th of July? Call around and see if you can find a little something that doesn't involve too much commitment and fits for you. In the early years when my life was total chaos, keeping busy was my sanity, even though I had days when I was stressed and exhausted. I can tell you from experience that "this too will pass." You'll get through this rough patch and it will get easier. You probably won't realize it until you're already through it, but one day you'll wake up and realize that things are way better--that's what happened to me, anyway. I went from not being able to pay the heat bill in the dead of winter after my husband died to having a reasonably comfortable life and enough income and health insurance to see to my family. We still have to be frugal and I still have to work a lot of hours but we're doing OK, and a few years ago I didn't think I'd ever get to this point. Just keep focused and keep your eyes on the prize--you'll get through this.

  109. Thank you for the reminder and thank you commenters for your thoughts on the topic.

    As a parent of "normal" children, I often wonder if the children are being rude or annoying if they ask questions, so I will take the easy way out by just avoiding the situation.

    In the future I will remember this and do better.

  110. My twins, in fancy expensive electric wheelchairs, are very young--just three years old--but I don't mind comments from the public. In our case, our chairs are crazy cutting edge looking, and they are brightly colored, and I have TWO of them, so it would more weird if nobody noticed us.

    I try my best to appear approachable and friendly to other adults, and I love when other kids or their parents come up to talk to us. Witnessing three year olds in pink and blue wheelchairs racing all over Walmart really is a teachable moment, as far as I'm concerned. And they're so young, all this stuff is almost as new to me as it is to the strangers who come across us. And everyone is different and reacts differently, but for me, ignoring us or pretending like we don't exist is exactly what I don't want. Asking questions is what I DO want. Speaking to my wheelchair-bound children directly is what I DO want you to do. They are smart and social and hilarious--not only do I want to show off those talents of theirs, but I want them to interact with the public just as they would if they were running amok through Walmart instead of driving amok through Walmart, if that makes any sense.

    As long as the comments we overhear are not derogatory or snide, I'm all for the attention. I LOVE the comments from other kids when they sound jealous of the twins' chairs, and so far, other parents have been totally respectful and considerate in those situations.

    Joy: I, too, do my best not to stare at others in wheelchairs. But it's so HARD to resist checking out their setup, the brand, the accessories, etc. I'm lucky enough that I have such young kids who are so social and outgoing that I can cover up my staring by letting THEM approach others in wheelchairs and start up a conversation. Their charm covers up my nosiness. ;)

  111. You can't tell there is anything wrong with my son by looking at him, but he has quiet a few things going on. Don't judge him or us and dont compare him to other "normal" (I hate that word) kids. We can see that your child that is the same age or younger is doing things that our child is not, you don't have to keep going on about it or rub it in....this isn't easy for us either.
    Dont get all high and mighty either when you see a child screaming or crying for apparently no reason as you never know what is son is legally blind so little noises like the clink of a belt, something you can barely hear can set him off because it has hurt his ears!! Be a little more understanding that it is going to take us a little longer to do and get things...these children aren't freaks or sideshows that need to be stared at...they are human and have feelings and emotions too, but they just tend to show them a little differently then you do

  112. After reading the comments on here I feel the need to share my own thoughts. Being the mom to a wonderful adorible almost 10yr old with spastic quad cp (for those who don't know what spast quad is its the worst form of cp u can be given, its cp that affects every aspect of ones body. Chase has no meaningful control of his legs, arms, head, chest ect. He has also had more surgeries than any 90 yr old I no, we stopped counting at 38 and and this isn't counting procedures. Chase has severe mental delays also (or at least he is diagnosed with them since they could never do a proper eval on him). over the last 10 yrs we have seen and heard it al, drs who tells us "when we did our residency we didn't even try to save bebies like urs" to parents who grab their typical child and say "we don't talk to ppl like that" the last was the worst I responded with "it only takes 1.5 seconds for it to be ur child then walked away. That's been several yrs ago. Today I believe in educating the ignorant, not to be rude but to really educate. I have came to the conclusion that one day someone close to them could walk a mile in my shoes and what they learn from my son and me today may help them then. This attitude has really helped me deal with the staring or the dumb questions. However there will always be one question that gets to me "what's his life expectancy". Honestly I don't no., no one knows cause he has out lived all of the early guesses. I now tell ppl I really hope he out lives me cause I couldn't imagine life without him.
    This is me, this is the me that chase has created. Before he was born I was a lot different, I was the one starring, the one asking dumb questions and I really wish someone would have took the time to have told me or shown me what it is like. Back then things like this was a taboo of sorts. Ppl didn't talk about it in fear of it happening to them. Today its a lot more open so why not educate the next genaration of parents like us instead of being angry at them for their stares or questions? One day that lady with the little boy may become a grandparent to a special child. Its took me a long time to get were I am today but I'm glad I got there


Thanks for sharing!

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