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I'm the BlogHer Contributing Editor on parenting children with special needs, and I'm at your service.  I am more than a parent, but with three...
 
 
 
 

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Brothers Stink, Whether They Have Autism or Not

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We don't ever leave our youngest daughter Mali alone with Leo, her ten-year-old big brother. It's not safe. Leo's intense autism may complicate his understanding in some ways, but he remembers very clearly that until he was four years old, there was no Mali and he was Mommy's baby. He has no problem showing his antipathy through yelling and pushing. Understandably, Mali is not a Leo fan, though she tends to blame Leo's autism rather than Leo himself. While I know we can keep Mali safe, I worry that these two children I love so fiercely might hate each other. And that breaks my heart.

iPad: The Great Sibling Uniter

I'm struggling with helping Mali understand that Leo isn't defined by his autism, while trying to cultivate her empathy for his significant challenges. It's not easy -- she's got a spitfire, conclusion-craving personality; she needs things explained and decided on the spot. Plus, she's six. She ends up coping through declarations: "Leo doesn't have to do clean up because of his autism, it's not fair," "Leo gets to have the iPad all the time because of his autism, it's not fair," or -- if he acts out at her -- "I hate you Leo; you are a FREAK!" Cue heartbreak, second round.

Her first two accusations are not actually autism-related, so they make for easier discussion -- Leo does a great job cleaning up after himself, plus he's not a Mali-style tornado of arts, crafts, & stuffed animals, so it only appears that he doesn't have a big chore load like hers. And the iPad? It's Leo's. She gets scheduled time on it, and that is that. But calling her brother a freak? Uncool, especially because he can't help being different from her in the ways his autism expresses itself. She is welcome to tell Leo that he can't push her, she can yell it in his face if she wants to. But she may not insult him, at home or in public.

Rational explanations only help if Mali is calm enough to listen to them. When she's mad because her brother is unpredictable and doesn't like her and does things differently and she can't even talk to him about it because he doesn't have conversations, we get lots of "I want Leo to not have autism!" alternating with "I want Leo to go AWAY." Then we have sit-downs about how he doesn't have any problem with his hearing, so while she can be mad about what he does, it is not OK for her to make him feel bad about who he is -- and why retaliatory meanness makes Leo think that being mean is acceptable.

Thankfully, Mali hasn't yet started complaining that we rarely have her friends over. Leo considers all smaller children potential status usurpers, and the extra small kids means extra Leo monitoring and an extra helping of exhaustion for this already guilt-riddled mom. I'm happy to delay that talk.

Mali's strained relationship with Leo is complicated by his lovely relationship with their big sister. Iz is twelve, only 21 months older than Leo, and has always been part of his reality. Leo loves his big sister, and she both protects and encourages him, plus she volunteers for autism sibling events and camps. Mali doesn't get any of that love from Leo. It hurts. I can't blame her for being resentful.

But even Iz can't help the occasional gripe about our how our family life is molded by Leo's needs -- our travel and outings have to be Leo-friendly or they can't happen, her parents rarely attend church together, we tend to socialize at home or in wide open spaces like beaches so Leo doesn't get overwhelmed by the loud or the unfamiliar, and much of the time my explanation for telling her "No" is "I'm too tired" -- which must of course be Leo's fault as I have to do a lot of extra things for him because of his autism. Which Iz will list, if she's in a really not-great mood. She's not wrong, but she doesn't always want to hear that I'd rearrange my life for her, too, if that's what she needed.

When nothing else works, I tell the girls that brothers can be awful whether they have autism or not. I know, I grew up with three of them. I get along with my brothers now, but the two older boys loved making me and

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AmyandJoanne 5 pts

it is difficult but as you expressed in your essay, love overcomes all. Even brothers who stink!

Amy and Joanne

www.wickedgoodthebook.blogspot.com ( http://www.wickedgoodthebook.blogspot.com )

jtawnylewis@gmail.com

aspergers2mom 5 pts

Elise http://asd2mom.blogspot.com

It was very hard when my children were smaller to get them to understand each other. Yes it breaks your heart thinking that they will not be there for each other. But words while we take them to heart, do not necessarily have the same meaning for a 6 year old that they do for adults. Also 6 year olds definitely do not understand the lifelong implications of language. They do not have the same concept of time, space and "forever" as adults do.

As they grew my boys were more open to understanding each other and quite frankly they (well actually the oldest one) requested joint counseling to learn to get along. While Leo and Mali may not be able to get joint counseling, a little sibshop for both of the girls may help.

Also,just as an aside. The boys have accused me of not being equally tough on each other and letting the other one get away with things. Since they both have autism they couldn't blame the "unfairness"on autism, but as with most siblings just blamed it on our lack of evenhandedness. The fact that Mali may blame it on Leo's autism just shows you that you have one smart little girl on your hands.Just keep talking to her the way you do, it will get better promise...she's too smart for it not to.

Shannon Des Roches Rosa 5 pts

We are careful about not demonizing Leo's autism but the challenging behaviors that stem from his autism. Leo kicks his sisters' butts at puzzles and matching games -- that's because of his autism, too (and they hate that as well, but for very different prideful reasons).

Very important to not hate who Leo is -- especially when so many other people with autism take great pride in their identity. But they can certainly take issue with what he does. "Autism" can help them understand why.

Shannon Des Roches Rosa ThinkingAutismGuide.com ( http://www.thinkingautismguide.com ) | BlogHer.com ( http://www.blogher.com/blog/shannon-des-roches-ros... ) | Squidalicious.com ( http://www.squidalicious.com/ )

Shannon Des Roches Rosa 5 pts

Our days are mostly positive and full -- but if I don't talk about our challenges, then I'm not being honest. And we are most decidedly not alone, as you've demonstrated. :)

Shannon Des Roches Rosa ThinkingAutismGuide.com ( http://www.thinkingautismguide.com ) | BlogHer.com ( http://www.blogher.com/blog/shannon-des-roches-ros... ) | Squidalicious.com ( http://www.squidalicious.com/ )

Shannon Des Roches Rosa 5 pts

I'm glad you have people very close to your family. So glad. Community is critical.

The label can be helpful as a general explanation after the fact, but I don't think it's necessary to bring it up with folks until needed -- there's a big gap between the stereotypes people attach to a label and what it means for each person with that label, and that explanation takes time. Focusing on individual challenging behaviors is often simpler.

Shannon Des Roches Rosa ThinkingAutismGuide.com ( http://www.thinkingautismguide.com ) | BlogHer.com ( http://www.blogher.com/blog/shannon-des-roches-ros... ) | Squidalicious.com ( http://www.squidalicious.com/ )

Jfer7774 5 pts

My son is on the spectrum and his older sister feels the same way your daughter does. She got upset with herself once because she said she hated her brother. She felt she was bad for feeling that way. I told her she doesn't hate her brother, she hates autism. That made her feel better. Another thing that helped us was a book we bought for my daughter. It's called "Everybody Is Different: A Book for Young People Who Have Brothers or Sisters With Autism." Here is a link you can follow to order if off of amazon.com http://www.amazon.com/gp/product/1931282064 The book may not help with your current situation, but it did help give my daughter a better understanding of her brother's condition.

donasabina@yahoo.com 5 pts

My boys aren't aware yet of the diagnosis. X is 7, he knows he has challenges, we haven't given him the label"Asperger's" yet. His little brother is not yet 5. But I see that sometimes their sibling rivalry is hugely affected by X's Aspergers.

I can't have playdates with anyone but people very close to our family. Cause X is unpredictable, can be very aggressive. J hasn't noticed yet. But he will.

It does make me sad.

Shannon Des Roches Rosa 5 pts

We all have our bad days, but my girls are resilient and loving. And I think Leo is teaching them a lot. I'm glad you found truth and tenderness in our story.

Shannon Des Roches Rosa ThinkingAutismGuide.com ( http://www.thinkingautismguide.com ) | BlogHer.com ( http://www.blogher.com/blog/shannon-des-roches-ros... ) | Squidalicious.com ( http://www.squidalicious.com/ )

pebrodsky 5 pts

True: brothers do stink! Tender: the endless and unexpected navigational skills required in raising siblings of children with autism made even more exhausting by actually raising the child with autism. I'm so glad you take the time to offer your experience to others!

DRS_Are_Best 5 pts

I too am the parent of autistic children who have siblings. Right now my NT son is nearly 6 and, even though he doesn't know his brother and sister have autism, he knows that there's something different about them. They are VERY close in age (3 kids separated by 21 months 1 day [younger kids are twins]) and my NT son is very protective of his sister (and a typical brother to his brother). But he is starting to ask the playdate question.

It's so hard to explain "autism" to a VERY OUTGOING 6-year old without making autism out to be the enemy. They can't help it -- they see the world VERY differently. But a 6 year old just can't comprehend that. Thus far we just keep bringing up that this is what brothers (and sisters) do. And we try to have playdates when the "planets are aligned" so to speak....

I wish you all the best luck with your family. You aren't alone, but that may not feel like much of a consolation.

For my full blog, please see http://myfamilysexperiencewithautism.blogspot.com/