Latest update: November 8th, 2013
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.As told to Gila Arnold
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