We see a parent dealing with a special needs child out on the street, or in a store, and we might think to ourselves, nebach, that must be so hard. But as with any life challenge, people on the outside – even sympathetic ones – have no idea what life is really like for those involved in the daily struggle.
The father’s story:
A typical day with Menachem? The first thing you have to understand is that “day” is a relative term. With Menachem, day starts when it’s still night. Partially as a result of all his medications, Menachem rarely sleeps. A typical day with him starts somewhere between two and three a.m., and due to his hyperactivity, he needs constant, careful supervision, so that he doesn’t wreck the house. My wife and I take turns getting up with him. We can’t keep him in his room – he’s too restless – but we also don’t want him waking the rest of the family. So we close the doors to our other children’s bedrooms so he won’t run in and wake them up. Menachem proceeds to run around the house for the next several hours, while we do our best to contain him. We give him food, let him watch a bit of Uncle Moishy – this usually occupies him for a few blessed minutes, giving us a reprieve. He may fall back asleep somewhere between 4:30 and 5:30 a.m., but we have to wake him soon after to get him ready for school. His bus comes at 6:45, and we need to leave ourselves a lot of time for preparation. Unfortunately, Menachem isn’t toilet trained, and he tends to dirty himself a lot, so he always needs a shower. Getting him dressed is a chore in itself.
He gets home around 5:00 p.m., and the bus drops him off right outside of our house. Still, getting him from the curb to the building is no easy feat. He doesn’t always want to go inside, and my wife isn’t physically able to carry him in; he’s too strong. I always make sure to be home for his drop off, so that I can get him in the house. In fact, one of the reasons I chose to work in the school system was so that my schedule would coordinate with my son’s, and while I’m always careful that my home demands don’t interfere with my work responsibilities, I’m currently transitioning to a work-at-home job, so that I can be around more to help out. I know that as Menachem grows bigger and stronger, more of his care is going to have to fall on my shoulders.
Usually Menachem is very hungry when he gets home, and we have food prepared for him. Though logically, he should sit down happily and eat, when he is in such a hungry state logic flies out the window, and, out of frustration, Menachem will knock over and spill the food. So meal time with him involves a lot of cleaning and coaxing. And always, always, vigilance.
After he eats, we bring him up to his special playroom in the attic for his therapeutic play time, but this can be difficult. Since he can’t self-regulate, it’s very hard to engage him, often making the play time a frustrating, unproductive experience – and that’s aside from the fact that we have other children to care for, and that just making sure Menachem has his basic needs wipes us out. But we try, whenever we’re able. After this, Menachem settles down with a video, until it’s time to go to sleep. Because watching videos is the only thing that can keep him in place for more than thirty seconds, we tend to rely on this a lot. We even got a heter to have our Fillipino aide, who comes every Shabbos, turn on the video for him. Admittedly, it doesn’t do much for the Shabbos atmosphere that we try to create in our home, but, like so many other things involved in raising Menachem, our children have come to think of this as normal.
Shabbos is the hardest day of the week for us. Compared to caring for Menachem for an entire day without a break, going to work is a cinch. And we’re lucky that we live in Israel, where, aside from the phenomenal services in general that the government provides, the children have school six days a week.
My wife insists on my going to shul on Shabbos morning, even though I feel that, in our situation, I’m probably not obligated to daven with a minyan. When Menachem is home, we need all hands on deck. My wife tries different strategies to manage while I’m gone, but what generally ends up happening is that he spends the entire time running up and down the house, and she follows him. As soon as I get home I take over, giving her a chance to daven and get ready.
My Shabbos involves hours and hours of walking with Menachem. I take him for a walk Friday night, Shabbos morning, and again in the afternoon. I follow him around the neighborhood. It’s easier to walk with him on Shabbos, since in our neighborhood there are no cars in the street. Menachem does not distinguish between the street and the sidewalk, making a walk during the week tricky and dangerous. Still, even on Shabbos it’s not so simple. My son enjoys pushing any stroller he encounters, opening other people’s car doors, and picking flowers from neighbors’ gardens – not exactly activities that endear him to the people whose property he’s invading. And what’s particularly frustrating to me is that, even after spending so many hours with Menachem, I don’t feel like he gains anything from these walks. Walking around, randomly picking leaves off trees is, for him, like another kid playing video games for hours straight. It’s a mindless activity, and I feel like all we’re doing is killing time, but – well, welcome to his life.
Shabbos family meals are almost nonexistent. We try to get Menachem to sit at least through Kiddush and Hamotzi, but right afterwards I take him out of the room and run around with him while my wife serves the rest of the meal to our other children. If I’m really lucky, I can get him to sleep Friday night, and then join the family for the meal. Now that we have an aide on Shabbos mornings, things have gotten a bit easier. Still, I must admit that when I make havdallah, it’s with a sense of relief that we’ve gotten through the day, and that Sunday morning, he’ll be back in school. And so he is, after his usual hours of nocturnal activity.
Welcome to our life.