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April 23, 2014 / 23 Nisan, 5774
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Life Lessons From Raising An Autistic Child (Part V)

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Sibling relationships are a world of their own. By nature complex, the intricate dynamic is thrown for a giant loop when a special-needs sibling enters the picture.

The father’s story:

The issue of developing a relationship with a boy as severely autistic as Menachem is complicated, and it boils down to one question: How do you build a relationship with someone who isn’t looking for one?  We, as his parents, have learned over the years to read his signals, to understand when he’s requesting an interaction and when he wants to be left alone. But for the vast majority of the people he comes in contact with on a regular basis, the issue of relating to him completely stumps them.

This is true even for his siblings.

We have one older daughter above Menachem, and two younger daughters. Each has her own particular way of relating to Menachem, grown in a large part out of her placement in the family, and, in a smaller part out of our efforts to “spin” the relationship.

My eleven-year-old daughter tries to play with him, but, not knowing how (and, like a typical pre-teen, not interested in hearing from her parents the right way to do it), her interactions generally last all of five seconds, and go like this:

“Hi, Menachem!”

He approaches her, she takes his hands, and starts to jump around with him. Typical for him, after mere seconds he breaks away and runs off. And rather than following him, using the techniques that we have learned to sustain an interaction with him, she leaves it at that.

But she loves getting smiles from him, she enjoys being with him. She’s not turned off by his behavior, because she understands that he’s different, that he has a problem. And that, I fully believe, is the key to all children’s acceptance of a special needs sibling. According to their age, according to their cognitive level, if a child can be made to understand the reason for a sibling’s “strangeness,” then they’ll accept him and love him.

However, there’s an additional aspect to my oldest daughter’s relationship with Menachem, and that’s the responsibility of caring for him. As an eleven-year-old member of our family, I feel strongly that she is old enough to assume some responsibility for her brother’s care. She sees how hard her mother and I work to care for him, she knows (at least partially) how much it takes out of us, and I feel it is perfectly legitimate to ask her to watch Menachem at times. Watching Menachem means much more than keeping an eye on him, it means keeping a hand on him, or at least staying within arm’s length, always. We are the only family I know that keeps a lock on their kitchen door, and that’s because if Menachem gets into the kitchen unsupervised for even a moment, the entire contents of the fridge are on the floor.

My daughter knows this, too, and if it happens while he is on her watch, because she chose not to follow our instructions, chose to watch him “her way” because it’s the easier way at the time, I feel justified in getting upset, and telling her to do a better job next time. My wife feels we can’t ask too much of her, that if we push her too hard she’ll resent it and rebel, but I disagree. While, as a parent, I don’t claim to know any more or less than the next guy, as a teacher of many years I see exactly what goes on in the classroom, and how students react to responsibility, to fair discipline, to limits. Children need and thrive on responsibility, and I’ve never seen a child rebel simply because they were pushed too hard.

My next daughter, who’s almost eight, is naturally more attuned to Menachem. That’s just her personality. They’ll run around the table together having a good time. She’s able to play with him a bit longer than her older sister, she’s open to receiving direction from us about how best to play with him, and her relationship with Menachem is overall a positive one. However, Menachem is strong and rough and, what’s worse, he doesn’t know his own strength. So he might, in the middle of the play, pick her up or push her and she gets hurt. This is one of the things we’re working on with him, to learn how to deal with his strength.

Still, she loves him very much. I remember once, several years ago, after Menachem had ripped up something of hers, I made the mistake of excusing him by saying he’s not very smart. My daughter got furious at me. “Don’t call him stupid!” she yelled. “Menachem’s not stupid! He’s very, very smart.”

Then there’s my three-year-old, and the relationship here is problematic. She’s terrified of her brother; when he walks into the room, she runs into a corner, cowering.  She sees him as this massive monster, and with good reason. Menachem has learned that in a world that is so inexplicable, where so many things happen to him and he doesn’t understand how or why, this is one area where he can be in control. He knows that he can always provoke a reaction in his sister just by touching her, and he takes advantage of this power. Obviously, we protect her as much as we can, but we also try to make her understand who Menachem is. Unfortunately, I don’t think we’re doing a very good job at it. We’ll tell her, “He’s your brother and really, he loves you.” But she’s smarter than that. She responds, “No he doesn’t; he hurts me.”

I have no doubt that, as she grows older, she will understand, but this relationship concerns me because it’s starting from such a negative place.

What’s it like living in a family with a special needs child? My daughters know that they can’t bring friends over when Menachem’s home. My seven-year-old’s best friend runs away whenever she sees Menachem coming in. My older daughter knows that when Menachem’s home, she can’t ask us for help with homework. She simply has to understand that everything else in the household stops when her brother’s around. Is it fair? No, probably not. But this is what Hashem gave to our family, and I believe that our daughters understand this, and because they do they’re not resentful.

At least, I hope so.

 

The mother’s story:

Raising children, even normally developing ones, is a tricky business. As parents, we’re called upon to make so many chinuch decisions everyday – which approach is better suited for my child’s personality? Which will lead to more overall growth?

On the subject of how much to expect of my oldest, I disagree with my husband. Of course, in an ideal world, it would be wonderful if my daughter happily took care of Menachem, and also prepared dinner every night and folded the laundry. But, since we’re talking about normal children, something has to give. Personally, I feel that, if I had to choose, I’d much rather my daughter have a positive relationship with Menachem than anything else. And if she has that, the feeling of responsibility towards him will naturally kick in as she matures.

And she really does love him. One summer, when we took advantage of Menachem being at a camp to take a two-day family vacation, my daughter was very upset with us for going away without her brother. “He’s part of the family, too!” she cried indignantly.

Does she have any grasp of what it really means to take care of Menachem? Probably not. But I think that’s healthy. If a family was in a dire financial situation, would it be appropriate for the children to know all the stressful ins and outs of the family finances? My daughter sees him as her cute brother, not as a burden. True, she knows she can’t have friends over to play once he’s home, but she accepts that as part of our family life, and her friends accept it as well.

For me, my goal is that my kids feel that they’re part of a normal family life, that my children have a positive, loving relationship with their brother. And, baruch Hashem, according to those measures, I think we’ve been successful.

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