You Can't Get What You Want ('Til You Know What You Want)

Last week I received an email from our synagogue's educational director, asking if I was planning to sign Bug up for the Torah for Tots program again this year. It was a simple form email, probably sent to all the parents who are too disorganized to complete the required paperwork before school starts (a group I am part of more often than not). But when you have a child with special needs, nothing is ever that simple.

When the Torah for Tots program first started two years ago, it was only held once a month, and I attended class for the whole three hours with Bug. I felt I needed to be there to help integrate him into group activities, keep him on task, and take care of any special needs he had (i.e. changing his diaper) so the classroom staff would not be overtaxed. That worked out fine - the teacher appreciated having an extra set of hands around to pass out graham crackers and bandage skinned knees, and I was gratified to see that Bug generally did pretty well, or at least was not usually the most disruptive kid there (thank heaven for small favors).

The following year they increased the class schedule to once a week, the same as all the other Sunday School kids. While I was in favor of that idea in principle, I almost didn't enroll Bug because there was no way I could commit to staying in class with him all day every week. But the teacher encouraged me to let him attend class all by himself, assuring me that she would have one of the teenage teacher's aides specifically look after him.

I was a little nervous about this. I am so used to him being sheltered in a cozy, protected special-ed bubble, with other kids just like him and a staff of specialists who understand how to tailor programming specifically to his needs. But I agreed to try because it is so important to me that Bug receive a proper Jewish education and become, as much as possible, a full participant in the synagogue community. And with the teachers and school administration so supportive and willing to work with me, it was an ideal situation to test the waters.

In many ways, it was ideal. His teacher was encouraging and positive about having him in class, and the TA he was assigned to was a wonderful, compassionate teenaged girl who forged an immediate connection with him. It is hard to describe how good it felt to join the crowds of parents dropping their kids off each week, and how thrilled I was that Bug was taking part in the completely normal, typical rite of passage of weekly Sunday School sessions. I even wrote a letter to the board, which was published in the synagogue newsletter, expressing my thanks and appreciation to the school staff for all of their help in making the whole experience possible.

By the middle of the year I had to admit that things were not quite as perfect as I had hoped. More often than not, when I went to class to pick him up he was off in the corner doing his own thing, playing with toys or writing on the chalkboard, while all of the other kids were engaged in a group activity. Now, this didn't bother me too much. Even back when I stayed in class with him I found that by the end of three heavily scheduled hours he just really needed some down time, and at that point it was useless to try to force him to sit quietly and listen to a story or whatever. But it was still always a bit of a blow, because as a parent you want so much to see your kid fitting in as part of the group, doing what all the other kids are doing. And every week I was faced with the reality that no, he is not doing what all the other kids are doing, and that maybe it was naïve to think that I could just throw him into a regular classroom and expect him to be completely, smoothly mainstreamed.

Then one day I arrived at the end of class as usual. It was a hot day and the teachers were wiped out, melted into their plastic orange chairs, the students running wild. One little boy had the idea to play Ring Around the Rosy, so all the kids joined hands and sang and spun and danced around the room. All the kids except Bug, that is. He stood there on the outside of that circle, shouting "Bug's turn! My turn! Can I play?" and pointing and wanting so badly to join in, and not one kid included him or stopped for him or even seem to notice him. It just seemed so symbolic, seeing him standing outside the circle while the rest of the class danced by, oblivious.

Honestly, it broke my heart a little. Of course I don't blame the children - they are all sweet, good kids. I don't think they were purposely trying to exclude him or be mean, and when I grabbed Bug decisively by the hand and inserted him in the game they willingly accepted him (possibly because I left them no alternative). But it still hurt to see him left behind like that, and to imagine how many other activities he was left out of during class that I wasn't around to witness.

It hurt so much I didn't send him back for a few weeks. I always had an excuse - a puppet show I wanted to take the kids to, relatives in town - but the truth was, I just couldn't bring myself to even go near the classroom after that. I know it seems like I am being overprotective - which I readily admit! - and I do realize I can't shield either of my kids from the slings and arrows of their classmates forever. But it is harder with Bug because he can't communicate as well; I have very little way of knowing if his feelings are hurt, if he is being teased, or if he is in fact completely enjoying himself and having a wonderful experience. Which actually, is what I suspect, seeing as he always ran eagerly to class, hugged his teachers, jumped up and down with excitement when he saw his friends, and was reluctant to leave when the day is over. When I finally realized that Bug was perfectly happy going to Sunday School each week, and that I was the only one with lingering issues, I started taking him again.

I wasn't sure if I wanted to sign him up for another year, though. At one point in the summer I decided the answer was no. I was afraid he was too much of a handful for the teachers and concerned that he wasn't really being integrated with the other students or even getting much out of the program. I would still keep him involved in synagogue life by taking him to children's services and family activities, but I was definitely not going to enroll him in class. Absolutely not.

A few days later, my family and I were hanging out after dinner, sitting on the floor in sort of a circle. Bug suddenly jumped up and started walking around us, tapping each person on the head in an impromptu game of "Duck, Duck, Goose." Only instead of using those words, he was saying "Shabbat, Shabbat, SHALOM!" Just like they played it in Sunday School months before! This is monumental for him - it shows that he IS participating, he IS learning and remembering things. So maybe I should send him? After all, the best way to help him assimilate into the temple community is to let him join in as many activities there as possible. And if I keep him home, how will the other kids ever have a chance to know and understand him?

And on and on and on I flip-flopped, all summer long. Part of the problem is that I notice I tend to have a phobia about asking for things. For instance, I stress for weeks when I have to ask my boss for a day off or to leave early, even though people do so all the time and she never has a problem with it. In this case, I want the school to make some accomodations, I want them to provide a designated aide just for Bug, and I want his teacher to openly address his disability with his classmates so they might show him a litttle extra patience and kindness. I want to ask for these things, but I am reluctant because I am so afraid of seeming like THAT parent, the bossy demanding one who always insists on special privleges for her kids.

But I also did not want to leave the educational director's email in my box unanswered for weeks on end, because that would be rude - and I HAD to make a decision eventually. So I took a deep breath and emailed him back with my concerns. I asked if Bug could have the same T.A. as last year, assigned only to him, and I offered to write a letter to send home with all of his classmates, introducing him and explaining why he is a bit different from them - but also emphasizing the many ways he is the same. He emailed back immediately, excited to have Bug re-enroll, agreeing to my ideas, and offering to do whatever we needed to ensure a successful experience. It was as simple as that!

There is still more to be done. I need to gather up my courage once again and talk to the teacher about ideas for fostering compassion among Bug's classmates, I need to sit down with his aide and make sure she at least tries to help Bug join in with the activities and games if he isn't able to initiate this himself. I need to actually write the letter to the parents instead of just talking about it.

But one way or another, we are going forward. I realize we are very fortunate - we have a synagogue administration and staff who are very motivated to help Bug succeed. The educational director is not only progressive and open-minded, but also a good friend who is totally committed to having Bug take part in religious school on a long-term basis. Finally, we have long-standing roots at the temple (my family joined when I was nine) with loads of people who care about our family and want to support us.

I just need to learn how to graciously accept that support, and ask for help when I need it. For Bug's sake, if not my own.