Sunday, January 23, 2011

Siblings with disabilities: Her brother's keeper

I had a roller coaster kind of Saturday, the kind of day where you're both happy and despondent about your child.

Saturday afternoon, Max and I took a bunch of purple bandanas (there they are above) and two yards of purple terrycloth (thanks,!) over to a local sewing genius who's made curtains for me. Jaye's going to whip up some absorbent bandanas Max can wear around his neck, to catch the drool, which doesn't seem to be easing up. A few weeks ago AZ—a young woman with cp who blogs over at Life and Times Of A Teenager With Disabilities—and I were on Facebook, and she messaged me to say "No offense, but Max is too old for bibs." She'd seen one in a recent photo. I knew she was right. Max is beyond psyched to try the ur-ul bandanas. When I pulled them out of the mailer they'd arrived in, he made that happy squeal I can never get enough of.

Saturday night, the gym where Sabrina takes gymnastics had a parents night out; you drop the kids off for a few hours. Sabrina's been sick but she begged to go, and we gave in. Dave and I had dinner, then did some shopping. When we picked the kids up, Max was running around, laughing his head off. The girls in charge said they'd both had a great time.

Cut to bedtime; I'm lying down with Sabrina in her bed, because she was complaining her tummy hurt.

Me: "What did you do at the gym?"

Sabrina: "We played games and ate pizza and jumped on the trampoline and I made new friends!"

Me: "How about Max?"

Sabrina: "He was friends with ALL the kids!"

Me: "What do you mean?"

Sabrina: "He was pretending to be a monster and scare the kids and they were all running away from him."

Me: "So they liked that?" Sometimes, Max does the monster thing when he's around new kids, and they either don't like it or actually get scared if they're young. It is not his most endearing habit.

Sabrina: "Some kids were making fun of him."

Me: "Which kids?"

Sabrina: "ALL the kids."

Me: "ALL the kids?"

Sabrina: "Just kidding!"

This is where extrapolating information from a five-year-old gets really frustrating, and this is also where you start questioning whether you should be pressing your child for this sort of information. But I couldn't stop.

Me: "Sabrina, really, what happened?"

Sabrina: "There were kids making fun of him."

Me: "What were the kids saying?"

Sabrina: "They said he doesn't look like other kids!"

Me: "What were they talking about?"

Sabrina: "They said he's a droolie."

Me: "Yes, sometimes Max drools, it's something he does."

Sabrina: "And they said he eats baby food too!"

Me: "Did you stick up for him?"

Sabrina: "I telled the girl!"

Me: "That was good. You can also tell the kids your brother is a great kid!"

I really wasn't sure what she should say to kids who tease. And I was getting distressed at the thought of kids making fun of Max, but kept my tone cheerful and carried on.

Me: "Max does some things kids his age don't do, but he also does a lot of the same stuff they do! Like he loves to play. And ride a bike. And eat chocolate ice-cream!

Sabrina: "And he likes to laugh! And play with trucks! And he can roll on the floor at gym!"

Me: "Yes!"

Sabrina: "I don't want to talk about this anymore."

I knew she was processing it all. She's trying to understand her brother and how he fits in, and how she fits in when other kids say things about him. At least Max doesn't notice, for now.

I'm still trying to figure things out, too. I hope I said the right words to Sabrina, and that I didn't unnerve her by questioning her. I ache for her to stick up for him. And I so want other kids to treat him like one of them. It's painful to think of him being teased.

For years I've heard about Sibshops, a group that runs workshops for siblings of kids with special needs. It just so happens that this week, a reader emailed me to say she is working on opening up one not too far away from where we live. Sounds like something that could be great for Sabrina.

Meanwhile, I think I could use a workshop for coping with teasing...or some advice from parents who have dealt with this.


  1. I think Sabrina sounds like a wonderfully in-tune sister. The fact that she could even process and tell you about it at five is pretty amazing. In a way, I'm sure that IS her way of sticking up for him. She's a sweet girl, and you're a great mom.

  2. I wish I could remember how I handled this at her age. I only remember one incident at the grocery store when we were slightly older than Max & Sabrina. Clint was sitting in the grocery cart because he was still so tiny. Another child stared; I glared... But we made it through ok. Now we're an unstoppable team. Go, Sabrina! ;)

  3. Your heart must have been breaking with what Sabrina told you. I hope the staff were aware of what was happening and intervened.
    I got in many scuffles as a child defending my sister. I was so proud of her and I could not understand why children were so cruel. I used stand in front of her when people (children/adults) would stare at her. I found myself doing the same thing last year at Disney when a child was staring at her.
    Sabrina has a big job ahead of her but do not think of it as a burden. If you are proud of Max she will be too.

  4. You don't want to know how I deal with rude children who tease someone with special needs. It is VERY effective however. Very. I fine tuned it when I taught special needs kids. Not sure what I would do if it were Charlie being teased. Probably the same only worse.

  5. Teasing from other kids hurts the worst. I once heard a little girl say my son was stupid because he didn't talk. The very most hurtful thing to me was her mom was next to her and just got an uncomfy look and said nothing! Another mom leaned over and told me she knew he was the smartest guy there but it still hurt! I think public schools need to educate everyone better on acceptance!

  6. so glad I could help !!! can not wait to see his new do

  7. My comment got lost, so I'll try again.

    I don't know about advice, but I do know what you mean....

    My Oatie got bullied horribly in the first two months of preschool between the parents and the kids they made both our lives miserable. In the end I did a dramatically public display verbally on why he wasn't going on the field trip as the parents who don't want him at school, would be there and I didn't want him to have to experience hostility at what should be a fun place. And said out very loud how people who are anti disabled are close minded neanderthals and they should be shut away from society not the other way around. (Well after 20 of meetings in 3 weeks, with the principle, the room leader etc, and nothing got better I had enough) as one parent told the teacher that Oatie was a danger to society! A 3 year old?!?! I said he has CP he's not a psychopath!

    My daughter got bullied too, she's 5 and her k room is across the hall. She adores her baby brother and she got bullied since she kissed him in the hall in front of her class who were lining up for lunch, and in the playground later that day then said "don't let her touch you or you'll catch what her brother has!!!" (I know!!!!) well that went on for weeks till I worked out what day it started and realised it was the day that she kissed her brother...

    So, anyway I gave her a few nice verbal strategies and I told her class teacher what happened and well that seems to have stopped.

    Only the other day 3 girls were sitting in the little den in the classroom and they were laughing at Oaties CP, laughing after each nasty comment about his walking and talking etc... and I told his teacher to nip it in the bud right there and then. She said she didn't hear, I said, I did hear and it's not on and tell them it's wrong and not what you say to people or laugh at other people. I am sure Oatie heard these girls.

    My daughter, well, she is very protective of her brother and if anyone has got anything horrible to say about him, she would be first there to defend him, she was fluent in English to the point of having an argument with her at 18 months old. She will in a polite but assertive manner say to their face that it is wrong and why it's wrong. She was with me when she heard before Christmas this child from Oat's class laughing at his funny baby chair that he has to sit in, and she was like, "mummy that's outrageous!"

    We were rolling cookies the other day and I from time to time chat to them about their Brothers CP and if they have questions or want to chat about things.. and well she blew me away, she told me that the "Oatie is very smart, and the bullies are so daft, and they are so daft that that they can't see how smart he is"

    Sabrina sounds like an awesome sister and sounds like she's got a super mummy too.


    Oatie's Mummy

  8. My heart goes out you, Ellen. I dread the day when other kids begin to realize that my son is different. Since my little boy is an only child, I often wonder, will anyone "have his back" when the bullies pick on him????

  9. You're not going to like my answer. At all.

    My brother was the victim of some pretty brutal teasing, and we handled it by a combination of me beating the living sh!t out of the teasers when I could take 'em, and a "retreat" strategy--not involving ourselves in activities where it was likely there would be verbal abuse.

    Some kids are little b@stards, and will go out of their way to bully and tease, notwithstanding all this "anti-bullying" stuff they're dishing out at schools these days.

    Tell Sabrina a baseball bat works well, and you can always claim it was an accident, that you were practicing your swing and those lying bullies got in the helps if you're a well-behaved kid otherwise. A yoyo makes a good bolo and you can crack someone across the face with it, too, if they get too mouthy and mean (wish I could tell you I was kidding...).

    Wish I had some cheery words here, Ellen...but I can't fake it. It'll be a very difficult path for Sabrina and Max at times. Your heart will break along the way, too. However, looking back (and it DOES look better looking back), I observe that the bullies, almost universally, are miserable, unsuccessful loser-adults, and the people who were our friends are STILL our friends, and are happy and decent people.

    This knowledge has helped me cope in my current situation--I can actually speak from experience!

    Go for that SIBSHOPS thing--wish they'd had that when I was a kid. I'm sure they'll come up with better strategies than 1) Beat the crap out of teasers; 2) Run away.

    I will not deny that I got tired of being the "constant defender" (Sabrina will, too) but that was my role--people-pleaser and defender-- and now I'm glad I didn't shirk it (at the time, though, I sometimes wished I didn't have that "burden"--if I'm to be honest, here).

    You do know that Sabrina doesn't want your feelings to be hurt, I trust? She's sensing your dismay and trying to mitigate it.

    The first time down that bully road just sucks--but you get through it. What won't kill ya makes ya stronger, I always say.

  10. I'll never, ever forget something that happened to me in college last year. My cousin (who is like my brother, I lived with him from birth -7 years old, has very severe quad CP) rolled over for the first time ever, and I went into class pumped up, telling one of my friends all about it. And a teacher just went "Hold on, isn't *name* 9?" And he is 9, so I replied "Yes, he is..." And before I could even explain, "And he's got severe quad CP, he's effectively paralysed because he has practically no control of any of his muscles, so they said he'd never be able to roll", she just retorts "Well, what is WRONG with him! My 6 month old nephew rolls all the time!"

    I was lucky... I never really had it from the other kids at school, I was 9 when he was born, I've had questions, "Why can't he sit up/eat/talk/walk when he's 4/5/6/7/8/9? Why does he jerk? How do you know what he wants when he can't talk or sign, or point?" but they were never really malicious in intent, more curious, I think maybe because he's so severely affected. And so what the teacher said hit me like a ton of bricks, I just walked out of her classroom before I gave her a mouthful of expletives.

  11. Usually little kids are curious and it is a natural curiousity because they don't have stereotypes in their mind yet. I think that kids asking questions and sometimes pointing out the obvious (like "he drools") is a good thing and explaining someones differences takes away the scariness for them.
    We have had many kids ask what my daughter's feeding tube is, and why she can't talk or walk, and they are always happy with simple honest answers.
    I think your blog, which I have been following for the last few months, helps parents know that they are not alone in this journey!
    If my daughter is ever teased I hope that I handle the conversation as well as you did!
    My son has been going to sibshops for about 6 months now and it has been a very positive, special thing for him. My last blog post was about his last visit coincidently!

  12. I'm in tears over here Ellen. Sabrina is such a sweetie; Max is so lucky to have a sister like him. My heart is breaking for you though, I know how hard it is to hear that your amazing kid (and we all know how amazing our children are)is being treated less than nicely. Max has an excellent advocate by way of Sabrina, that's for sure.

  13. Oh, I have been here and it is so hard! I have also asked myself if it is right to ask these questions of my son and if I should put him in this position.

    People, kids and adults, are going to say things. It happens and the only thing you can do is control how you handle it. It is very hard for me to handle because it always catches me off guard and I end up shocked speechless. Because of this, I try to have phrases worked out ahead of time. I teach these to Caleb so that he can be ready too.

    I also give him the choice to say something or not. He loves his sister and will stick up for her but sometimes he doesn't feel right to do so. I want him to know that it is okay if he doesn't say anything.

    This is so hard, but it helps to know that we are not alone!

  14. I think taking Sabrina to a sib support group is a wonderful and timely idea. Peer pressure is an extremely powerful thing, and as hard as it is to hear, sometimes kids with disabled sibs are torn between their powerful love for their sibling and the strong urge to follow their peers and join in the teasing, especially if the child with the disability isn't necessarily aware of the teasing, and can't tell you about it, as seems to be the case with Max. Kids know this is wrong and feel guilty about it, but they are human, and might not have the tools to know how to deal with the conflict. A support group will let her talk about these feelings and will help her come up with appropriate strategies to deal with it, other than with a baseball bat.

    Also, as Max gets older, his interests and way of playing might become even more different than kids his age, and that's just something to accept. Forcing other kids to play with him or include him unfortunately doesn't work.

    Finally, and this is just an observation as a special ed teacher, dress Max in the same kinds of clothes kids his age wear. It is amazing what other kids will decide to pick on. Dressing Max in the same kinds of outfits as other kids his age will give them one less thing to pick on.


  15. I remember a particularly difficult day with our extra special kiddo at the pool. My oldest kiddo (13 at the time) helped me gather the towels, fetched shoes etc., bought the magic ice pop (which didn't work that day) and helped me get her 9-year-old sister away from the pool and up to the car. Quite a long and noisy walk with an 9-year-old temper tantrum the whole way. When we managed to get usually-smiley kiddo strapped in, I asked oldest kiddo to go let her other two sisters know that we were leaving now. Big kid shyly asked if I could tell her sisters because there was a large group of kids her age outside the pool and she didn't want to walk by them again. My heart just broke for her! Not once did she complain about helping me for what was probably close to a half an hour of getting a screaming, crying 9-year-old out of the pool and up to the car. All while she must have been acutely aware of the curious (and not always kind) eyes of a multitude of her peers. But 3 1/2 years later, I can honestly say that oldest kiddo is a calm, self-confident, empathatic teen with good friends who easily hang out with extra-special kiddo as well! And, THANKFULLY, temper tantrums seem to be a thing of the past.

  16. When a similar situation happened at our elementary school - sister (typical) in K, brother (autism) in 3rd - the K's were making nasty remarks about the brother. The issue was resolved by educating the entire class by reading a book about autism and having some open discusion (at the K-level of course).

    Sabrina is ready for ShipShop -- glad there will be one for her. The group my girls go to have been great for them.

    Great way to get info from Sabrina. Try to keep it light so you can continue to.

    The bandanas should work great. At a certain point (e.g. in a year or so) you might be able to get him to wear some that really match is clothes. Since you have a seamstress she will be able to offer suggestions as he gets older.

    Hair for 8-year-olds boys. When I take Luke to get his hair cut I always tell the gal that I want it age appropriate and for him to look good.

    Clothes for 8-year-olds boys. I am still picking out most of his clothes. I do allow him to choose between 2 or 3 items as far as color goes. By next year I'm going to have to start talking to the teachers at school to make sure he is dressed to fit in. Right now I just put him in elastic waste jeans, t-shirt and shoes.

    Just my 2cents.

  17. I worry about this situation for my own kids. I hope too I'll have the right words to say to the younger one.

    If she ever reacted the way Sabrina did, I'd be so proud.

  18. Vicki, hopefully I'll have it all figured out if and when something like this ever happens, so you'll have a handle on handling. There's such great advice here, and really nice words of support. Thank you, everyone. And, yes, Sabrina is a great big sister, but like Paula notes, peer pressure is a powerful thing.

    Debbi: Giving Sabrina some handy phrases she can choose to use is an excellent idea. I have to think of some.

    Kath: Holy crap, what was WRONG with that teacher?

    Paula: I dress Max like other kids his age, so he does fit in that way. Bandanas will def. help him look less conspicuous, not dealing with this earlier was my bad. It is great to have your perspective here.

    Janet: I agree, education is a good thing, but these were a bunch of kids who'd never met Max before (it's a random parent drop-off night). Next time we do this, though, I will talk with the girls leading the group ahead of time.

    And Katy? Yeah, I DO want to know how you deal with rude children who tease!

  19. What about that medication you mention in the past, those patches that stop his drooling? Bandanas are a great idea, but kids will still notice the drool. I know he is already on a lot of meds, but it may spare him some bullying, maybe cut his hair, seems kinda long for his age. Just some ideas :-)

  20. We're in the same boat here. We've been dealing with a bully for almost 2 years now with our 5 year olds twins. One is apraxic and one is having issues going (or not going as the case it) to the bathroom. My child cries to go on the bus every day as this kid has started calling him a shithead now and he is calling my apraxic son stupid.

    I have been back and forth since this has been starting with the special ed team at their school. I talked to the principal and nothing is working. My next step is now sending a certified letter to the superintendent.

  21. I usually turn the spotlight back on the bully in a way that makes them uncomfortable. I might ask them why they're teasing or even go so far as to ask them if they're feeling insecure. Children are taught not to tease and know better--if they're doing it, then I assume something else is at play.

    I actually wrote about this about one million years ago.

    Here's here my original post on bullies

  22. Thanks, Katy. I knew you'd have something wise to say. Missy, I'm sorry you're dealing with that, I hope something that's been said here (or in Katy's post) helps.

    Kate: I am so hesitant to go with meds to stop the drooling because, yes, I don't want him on more meds. As long as this isn't bothering Max, and it's only bothering ME, I'm not going that route. Meanwhile, I don't think his hair is too long for a kid who's 8, a lot of kids now have floppy hair. But, I know, I am not the most objective person.

  23. Oh, Felicia, I neglected to respond. You're right, I don't love your response! Even if there's truth to it. I am not beyond kids physically pushing back against bullies. I was bullied by this girl when I was little, she used to hit me and pull my hair and my sweet mother was all, "Oh, just ignore her and she'll go away." One day, I pushed this girl back and then I SAT on her. And after that, if she tried anything, I'd give it right back to her. And then it stopped.

    That said, I would not feel comfortable suggesting it as a method to Sabrina. Right now, I want her to learn to use words. And we'll see how that goes.

  24. Geez Ellen, I hope you realize I wasn't seriously suggesting that Sabrina beat the living crap out of Max's tormentors (though that IS what I did). The Sibshops thing should give her the tools she needs, I think. Nowadays, too, bullying is less of a rite of passage than it was when I was a kid. What I describe, though, is absolute truth--it was a rare week when I wasn't throwing a punch or otherwise doing bodily harm to someone in response to an attack on my brother. It started getting bad around grade 7 and never stopped entirely until graduation from highschool--I'd beat up one group and before ya knew it, a new bunch of jerks would come along. Teachers never stepped up. Ever. The chickens#its AVERTED THEIR EYES, the cowards. School administrators would tell the bullies not to do it again, and they'd do it again anyway. I was the only line of defense. It wasn't fun. It needed to be done, though--there was just no other way. Hopefully nowadays, there are alternatives. I'm just pointing out that if those sorts of alternatives don't doesn't hurt to be aware of the "old school" techniques! (Only kidding, really!)

  25. It is so ridiculously hard to know exactly what to do with the siblings...I am right there with you. I just signed Gabe up for a Sibshop and even though he won't admit it...I think it's been good for him.

  26. I have a 9yr.old son with autism. His 11 yr.old brother has been to Sibshop at AHRC in Manhattan for several times. He loves it. It's been so good for him. I love that he can have time with other kids who understand what it's like. I highly recommend the program.

  27. Hi, Ellen! I haven't visited in way too long and really appreciate this post. As you know, I have two typical boys who are now aged nine and twelve and, like your daughter, are younger than their sibling with a disability. The conflicts that you are describing are probably ongoing, and it sounds like Sabrina already feels comfortable expressing herself. I don't know if anyone else has said so (I haven't read all the comments, yet), but I really think it's important that the sibling expresses both positive and negative emotions related to their sibling and that the parents affirm both of these and acknowledge how difficult it is. Just last week both of my boys were involved in a school project called No Name Calling Week -- what my nine year old did for the first time was astounding.Now I feel as if I'm hijacking your blog and think we should talk offline.

  28. My brother is slightly autistic, and he got made fun of a lot! One day I over heard people making fun of him and throwing rocks at him, so I ran over to the and picked one kid up and told him if he ever did anything against my brother, he would get a mouthful of dirt!
    Haha, I was 7 or 8 at the time [: Oh, my brother's name is also Max! You seem like a wonderful mother, keep it up! <3333

  29. Oh--I forgot to mention something! My mother saw how my brother, MAx, was being bullied at school and how no one stopped it, so she enrolled me and my brother in Self Defense. One day, my brother sent 3 HUGE boys to the nurse. My brother is now 19 and is a joy to be around. Not to mention he is great with comebacks!

  30. I don't know if you'll like my comment but...

    It's not your daughters job to defend her brother. I know you want it to be, you want her to be out there fighting for max every step of the way. But she may not be. ( I am not speaking out of ignorance my younger brother is high special needs).

    I defended my brother as much as I could. but at the end of the day I was still a kid.

    Send her to Sibshops ( this post was an older one, so I hope you did!). It's important for her to have place to feel special and know that she isn't alone in having a special needs sibling.

  31. I just saw this post from your link from today. My brother is five years older and is moderately disabled with Down Syndrome. Growing up, I was his biggest defender, even today I am his guardian and take care of him! And I love every second of it.

    It is a siblings job to look out for each other, whether they are normal or special. I expect my kids to look out for each other. If they cannot handle the situation, I expect them to find an adult who can. That’s what siblings are for. They will learn that and they will forge a special bond, one that the parents cannot teach and sometimes one that parents don’t even get.

    The more challenging part of growing up with a special needs older sibling, is that it takes years for the younger one to really understand the special needs. I knew my brother needed other things then I did, I knew he needed special care, learned thing slower, needed more supervision, but I didn’t understand he had special needs or was “different” – after all, he had always been how he was my entire life. To this day, I am probably the only one who never looked at Drew and thought about what he could have been or should have been–because Drew has always been Drew in my eyes. Sabrina will learn that. As a kid, I didn’t understand why the other kids were teasing him, didn’t they see what a totally great kid he was?

    Sabrina sounds totally awesome –as does Max – and they will learn together how to deal with the world. Its great there are programs out there now to help siblings navigate these issues– forty years ago there were not.

    I know lots of parents don’t want to “burden” the siblings to stick up for their siblings or, eventually, help care for their siblings. Even my own parents didn’t want Drew to be a “burden” to me and my family. Siblings can do what they want – but my brother has never once been a burden to me, is a huge part of my life, and even now my four children are his biggest defenders and not one has ever hesitated to step up to Uncle Drew’s aid or defense if its needed – or for that matter any other special needs child’s defense.

    There will always (sadly) be bullys -- how we handle those people say so much about us.

  32. I can relate to this. I have two sibs with special needs, my brother with severe ones. I am his keeper, he looks to me to fix his computer, we have these inside jokes, he may be brain damaged, but that doesn't make him dumb. He may be blind, but that doesn't mean he can't see love. He may be epileptic, but his seizures don't interfere with his happiness. I could go on and on, but n the long run it is simple: He is my brother. He is mine, and I couldn't ask for anything more.

    This blog, I love reading it, touches me. Tell Max hi, from a fan, and maybe tell Sabrina there's a girl who understands what it's like to have a brother who's special.


Thanks for sharing!

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