Latest update: November 8th, 2013
The uncle’s story:
When Menachem was a baby, he seemed like any other normally developing kid. Videos from that time show him laughing and reacting to other people; you’d never guess how he would turn out. I don’t know, maybe a professional might have seen the signs, but I certainly didn’t.
Later, as the months passed, his father, Dan, who’s my older brother, started telling us about issues that were coming up with Menachem, and evaluations he was undergoing. By the time he got the actual diagnosis of autism, I can’t say I was shocked; it was too obvious by then that something was wrong.
To me, the word autism conjured up images I’d seen on T.V., of high-functioning individuals like Dustin Hoffman’s character in “Rain Man,” who may not have been normal, but were able to do some extraordinary things. At worst, I pictured an autistic child as someone existing in a catatonic-like state, curled up and in his own world. What I never imagined was Menachem, who never stops moving and takes all your wits and energy just to care for him.
I can’t say I have much of a relationship with my nephew. I’ve tried, but it’s difficult. How do you relate to someone who can’t relate back? Dan tells me that when he comes to sit next to me, that’s his way of initiating communication, but without my brother serving as interpreter, how am I supposed to know how to read his actions? It would be different if he were, say, mentally handicapped. If a forty-year-old is functioning at the level of a five-year-old, you can at least sit down and talk to him the way you would to a five-year-old. Even with a baby, you get a smile, some kind of reaction that encourages you to keep on trying. But with Menachem, there’s no response at all. I’ll say, “Hey, Menachem, how’re you doing?” And the interaction comes to a dead end.
So when I get together with my brother’s family, it’s the other children that I focus on. Still, having Menachem around is frustrating nonetheless, because he impacts on my ability to have a normal relationship with my nieces. We can’t go as a family for a picnic in the park, because my brother will spend the entire time shadowing Menachem, and I, feeling bad for him, end up following my brother around. When Menachem is with us, every bit of planning and focus is centered on him. As a result, we try to schedule activities for when Menachem’s at school. I grew up in a family where cousins got together frequently, and I want my own children to do the same with their cousins. Getting Menachem out of the picture is the only way to do it.
Sometimes I wonder if by arranging family get-togethers for when he’s not around, or by avoiding interacting with him, we’re running away from him. Maybe I’m wrong, but my answer is always ‘no’ – because, honestly, I don’t believe he cares.
I know I might get hit over the head for saying this, but I feel that Menachem should be in an institution. The care that my brother and sister-in-law give him is more than above and beyond – and I’m not just saying this because they’re my family. Their absolute dedication to him is superhuman. But it takes a toll, and for me, as their brother who loves them, it’s a painful toll to watch.
They say that couples raising an autistic child have an 80% divorce rate. Think about that statistic. All normal, healthy marriages have some stress, whether for financial reasons or others. Consider the parents of an autistic child: they have the same stresses that all of us have, plus a huge, ever-present, all-consuming additional one. How can this not take its toll on the relationship?
And then there are the other children. I don’t know whether my nieces resent all the disruption to their lives that Menachem causes – after all, in their eyes, this is their model of normal family environment – but I resent it for them. They can’t keep candy or regular kid food in the house – all food must be regulated depending on Menachem’s special diet of the moment. They can’t have friends over. Not because they’re embarrassed of him; if it were simply that, then I’d say, well, it’s good for your friends to learn that there are different kinds of people in the world. But with Menachem’s frenetic activity and tendency towards outbursts, they really can’t have friends over. What kind of childhood is that?
Sure, we all know about the blessings that a special needs child brings to a family, but, frankly, those stories are talking about Down’s syndrome children, or mentally handicapped ones – not someone like Menachem. It’s because I care so much about my brother and his family that I feel this way. My brother does not have a normal life. He wakes up to change a nine-year-old’s diaper. He must lock doors as he goes from room to room in his house, so that Menachem doesn’t get into something he shouldn’t. In the sum total, Menachem has more of a negative impact on the family than a positive one.
The biggest favor we can do for my brother and sister-in-law is to give them some time to themselves, so every now and then we offer to watch the kids for Shabbos. After twenty-six hours of caring for Menachem, I’m going out of my mind. I can’t imagine how they handle it day in and out, 365 days a year. It just goes to show that Hashem only gives nisyonos to those who can handle them. I couldn’t handle this, nor could most people I know. But my brother and sister-in-law handle it magnificently.
I’m not saying to throw him to the wolves. This isn’t the 1800s. There are plenty of good institutions out there, where he would be cared for and treated decently. Sure, it wouldn’t be at the level of care that his parents give him…but at what price?
The father responds:
If Menachem were to reach the point where he’s a danger at home to himself or others, then I would agree to the need to put him in an institution. But, thank G-d, we are not at that point, and, in my mind, there is absolutely no other excuse for us to send him away.
Yes, our life with him is not easy. Who said parenthood is supposed to be easy? Hashem gives you a child, and he is yours to raise, for better or for worse. Would you consider sending away one of your children to be raised by someone else, even if, theoretically, this person is better qualified to raise him?
Yes, my children are not able to keep candy in the house because of Menachem’s diet. If we had a child who had Crohn’s disease, or a severe peanut allergy, we would also have to regulate what food comes into the house. In terms of bringing friends over, Menachem doesn’t get home from school until 5:30; my girls can feel comfortable bringing friends home until then. Is it ideal? No; but if this is what Hashem gave us then obviously it’s ideal for our family.
My brother brings up the issue of marital stress. It’s certainly an issue, and that’s why the divorce statistic is so high. However, on a personal level, I feel that raising Menachem has brought me and my wife closer. I don’t know anyone who comes near my wife’s level of mesirus nefesh, and I tell her all the time how much I appreciate her. If not for Menachem, I probably would never have known what a special person I married. In addition, I like knowing that I have a clear purpose in our family structure. My job is to take care of Menachem in the afternoons and evenings while my wife takes care of the rest of the family. When the roles are clear, there’s no resentment or arguments.
While it’s true that institutions have improved greatly from their condition a century ago, the level of care there is still not what he would get at home. This past Friday night, for example, Menachem couldn’t sleep, and so I took him for a walk in the early morning hours. Would some minimum-wage night shift worker in an institution do this? When you relinquish your child’s care to others, there’s always a risk involved.
Finally, my brother questions whether Menachem even cares if we interact with him. The answer is a resounding yes. While he may not react with a facial expression – and this is partly due to his dyspraxia, which makes it difficult for him to voluntarily move his facial muscles – I know based on other reactions how much he enjoys when we spend time with him. He is not mentally handicapped; for all I know, his IQ could be higher than mine. It’s just locked inside.
Being a parent is a mission. Who knows? Maybe the reason I was put on this world is to take care of Menachem. Do I dare hand my mission over to someone else?As told to Gila Arnold
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