Dentistry, Mainstreaming and the Zionist Dream

Any parent of a special needs child probably has a catalogue of "Things People Have Said but Should Not Have." It was difficult, for example, for me to hear the words of a friend on Simchas Torah who, upon seeing me at the shul celebrations, shook my hand gravely and said, "everyone has to suffer" (he apparently did not see Shmuel who was bouncing off the walls, dancing with glee). Comments like that one, one comes to understand, are almost never said out of malice. But there are some remarks to which one has to pay attention--like that of the dentist: "if you want his cavity filled, we'll have to put him under."

My wife Leslie is hesitant to give Shmuel a non-organic cup of carrot juice, so the prospect of general anaesthetic and a hospital visit was not a happy one. But asking around, we heard the same conclusions: "can't treat them like normal children; there's no other option." True, we have come to learn (from Elizabeth Mueller of Cincinnati who has thought seriously about "Dentistry for Children with Down's Syndrome" http://www.mvdsa.org/JimS/DentistryforChildrenwithDowns.pdf) that a Down's child provides a special dental challenge, but it's one that does not have to end on the operating table. Fortunately we didn't have to go to Cincinnati to have Shmuel's cavity filled.

Enter Dr. Joshua Daniels of Jerusalem. He hadn't heard of Elizabeth Mueller, but he had heard of the Kolbrener children (all a joy in the dentist's office!), and he treated Shmuel as he treats the other siblings. That is, Dr. Daniels practices mainstreaming in dentistry: so for him, Shmuel may have required special attention, but in the dentist's office, not in the hospital. Such attention means that a visit to the dentist is more like a family visit, or a neighborhood visit, or even a chaotic block party--with various friends and families playing their appointed roles (holding Shmuel, caressing his hand, coaxing open his mouth). But yesterday, when Shmuel's sister Avital departed from her role, instead imploring the dentist to heed Shmuel's protests and refrain from pulling his infected tooth, Dr. Daniels responded not by silencing her empathic (and emphatic) cries, but by caressing and kissing Shmuel, and praising Avital's middos (character traits). Because Dr. Daniels is a tzaddik, as well as a great dentist, the visit ended in dental improvisation and musings on rachmonos (or mercy): "if a girl is crying for her brother as if she were crying for herself, how could I, as his dentist, ignore such cries?"

There are undoubtedly great dentists in other places, but the way in which the decayed tooth of a little boy became the focus of not only the dentist, and the boy's siblings, and the siblings' friends, and my wife, and her friend, not to mention the patients in the waiting room (who were inevitably drawn into the drama) was one of those Israeli events which resonates as much as any Independence Day celebration. Because the appointment transformed from a mere 'visit' into something like a community event, it also revealed another of the benefits of mainstreaming: like every other child, a special needs child reveals, through his difference, a particular aspect of tzelem elokim, the image of G-d. And in the process of engaging with that difference, we also come to encounter unexpected aspects of ourselves.

I do have to add that, unknown to Dr. Daniels, Avital had the upper hand all along. Sensing that the appointment might end in the pulling of Shmuel's tooth, Avital had, already that morning, davened for divine intercession, promising to donate one hundred shekels of her babysitting money if the extraction would be averted. That night, an old Yerushalmi came to our door asking for money to marry off his seventh child. The money was waiting.

Together!

I've written about Shmuel, my five year old son with Down's Syndrome, in an article that appeared in the Jewish Journal . In that article http://www.jewishjournal.com/home/preview.php?id=18896, my wife and daughters are the heroes of the story--who in their various and different ways are able to acknowledge and embrace Shmuel for his difference in ways that I was unable. I did have an insight at the time which I shared with my wife: 'if you think that individual prejudice against difference is bad, just wait until the institutional prejudice kicks in.'

In Jerusalem, such prejudice shows its face in educational institutions. True, up until now we have been blessed. In choosing between the options of shiluv (or mainstreaming) and special education, we chose the former option. Gan Tali in our Bayit Vegan neighborhood of Jerusalem has proven to be a place of warmth and support. It's true that at one of the first parent meetings some parents raised objections to the presence of our Shmuel, but Tali (who incidentally has no training in special education) silenced them sharply: "you're lucky to have a child like Shmuel in your child's gan." End of story.

At least for awhile. The blissful years of nursery school almost behind us, it was time to turn our attention toward primary school. There is a particular school in our neighborhood which we thought would be a promising place for Shmuel, but when my wife spoke to the school's administrator, she was told, “having a child with Down’s Syndrome will give the school a bad name.” A bad name! Besides, he continued, there are plenty of special education options; your son would be much better off in one of those.” This school principal claimed to know better, as he confided that he has a neice with Down’s Syndrome: “Placing a child in a normal context,” he went on, “will only burden the child with false expectations.” He might "come to think that he’s normal! and even entertain the dream that he might one day get married."

Well, yeah: false expectations. It's hard to get married: in fact, G-d, the midrash says, spends his time bringing couples together. So it is hard. But is it really so unreasonable to hope for Shmuel to get married? We try not to fast forward into the future (a good piece of advice for all parents), but there are assisted living facilities, and who knows? For me, it's certainly one of my greatest aspirations for Shmuel--that he get married, not so that he fulfills some idea of normalcy, but that he can connect with himself and find another with whom to connect, to build and grow together.

But we're not, for now, trying to get him married, we're trying to get him into first grade. And the school administrator's response raises issues beyond the obvious ones of derech eretz (good manners) and sensitivity, but about choosing educational approaches for special needs children. (It was satifsying to me that in a discussion of the issue at the shabbos table, my sixteen year old daughter and her friend asked: why would you want to send him to a school like that anyway?) Though in America and Europe, mainstreaming and special education are both recognized as reasonable options, in Israel, and most notably in the religious world, special education seems to be the only option (only two out of twenty-five special needs children in Israel, I'm told, are mainstreamed). It's most notable in the religious world, because it's that segment of the population that gives birth to the most children with Down's Syndrome. In a world of genetic testing, religious people are committed to the perspective opposite to the one that produces the 'designer baby.' Yet for all of these advances, the ability to fully accept and accommodate difference--on both a personal and communal level--remains limited. While years ago, special needs children were hidden away (and there are still cases where such children are given away at birth), now they are placed in special needs environments for day programs--out of the house, and sometimes off the map. Of course, I well understand that for some children and families, special education remains the pragmatic option, or even the best option. But the availablity of mainstreaming as an option entails a sensibility, a consciousness, that regrettably has yet to emerge fully in religious communities. The contrast to less observant communities is extraordinary and paradoxical. When I've given talks about Shmuel to such non-observant audiences in America, I've been struck by their sensitivities and their willingness to acknowledge and embrace difference--a far cry from the prejudice of the school administrator whom we encountered. But these are the very communities in which genetic testing is prevalent! It's an example of a principle articulated by Rav Tzaddok Ha Cohen: a person always has a weakness in the place of his greatest strength. And so a community. Which means that communities--however apparently far apart in sensibilities--have much to learn from each other.

Of course, Shmuel's current teacher--his ganenet--got it right. "Your child is blessed to be in the same gan with Shmuel." Tali was not playing lipservice to some abstract metaphysical notion, but she sees the benefits of integration in action--not only for Shmuel, but for the rest of the children in the gan. In fact, without mitigating our gratitude, it's probably they who benefit most. So I see it, every day, in our building. For Bayit Vegan, like many Jerusalem neighborhoods, is a conglomerate of cultures and neighborhoods: each building represents it's own community and specific culture. To suggest that my kids play with children from two buildings down the block would be like to suggest that they visit second cousins in Vermont. In such a world, there is no such thing as the 'playdate,' but rather children negotiating their own relationships and time. Our community--our building--is distinguished not only by the presence of Shmuel, but by his siblings and their friends--who have learned how to integrate Shmuel into their play. In this sense, even where special education is the chosen educational route, mainstreaming can still be a goal. Mainstreaming begins at home as an attitude, and can be an ideal even those who choose the educational stream of special ed.

Every morning in our house, the great debate ensues. The players are Shmuel and his younger brother Pinchos. The question is: who will accompany who to gan. The debate has predictable rhythms: Eema is usually the favorite first choice, but at some point Abba is also included in the argument. So: "Abba will take Shmuel, and Eema will take Pinchos." Or: "Eema will take Shmuel, and Abba will take Pinchos." But the result is almost always the same: the negotiation reaches its climax (sometimes heated), and then there's the agreement in unison: "Together!"

It's another one of those great insights that only our kids give us. Mainstreaming is not just an educational ideal, or at worst some forced ritual of inclusion. It's a practice, if given the opportunity, our children will live. And we adults, we just have to follow their lead.