Last night we came home from Shabbos Sheva Brachos for my son and daughter-in-law. There were some difficult moments with Binyomin Dovid in the last week or two and I wanted to put things into perspective.
First of all, we are boundlessly grateful for the fact that unlike our first few weddings, we were able to travel with Binyomin Dovid without shlepping oxygen, a monitor, a nebulizer and a whole load of meds. The only thing special I brought for him more than what the rest of us brought was an extra change of underwear (which unfortunately came in handy....) and a spare Kippa (which fortunately was unnecessary). At our recent chasunas I did not have to hire someone to be with him as I had for the first few- he managed fine. He has learned when he is overloaded to go off quietly and amuse himself, which then gives him the koach to be with everyone. He danced up a storm with his brothers and came over to our side a few times - performing for the kallah and dancing in a private circle with me and my daughters. The fact that I could just let him self regulate is major. Our earlier simchas - chasunas and Bar Mitzvahs - were peppered with constant "where is Binyomin Dovid?". This time there was only a bit of stubbornness during the pictures - so he is missing from the "all of the Tavin boys" picture. Nu. Small price to pay for an otherwise wonderful simcha. The drummer, Gedalya Shofnos, even let him play a solo at the end of the evening - a credit to Mr.Shofnos, to knowingly open himself up to countless requests by other boys - and also a credit to Binyomin Dovid's ability to behave in a way that instilled enough confidence in this kind and highly professional musician to let an 11-1/2 year old boy with Down syndrome touch his precious equipment.
Further, despite his social issues, Binyomin Dovid has made great strides in that area as well. He fit in amazingly well with the myriad of unfamiliar kids running around at Shabbos Sheva Brachos - mostly younger siblings and cousins of the kallah. His own nieces and nephews were, of course, there as well - but here he was playing appropriate games with kids whom he hardly knew. He had little need to come over to me for emotional reassurance as he had in the past; in fact, I hardly saw him during the meals at all. Now that I think about it, he played beautifully with the chosson's nieces and nephews a few months ago during the aufruf, wedding and Shabbos Sheva Brachos for our daughter and son-in -law. It is to the credit of the exemplary chinuch of both of these families that the children accepted him so naturally. And it is a sign of progress that their natural acceptance corresponded so beautifully to Binyomin Dovid's ability to be "one of the gang".
It was touching when one of the kallah’s sisters, who is probably about Binyomin Dovid's age, offered to babysit for him this Shabbos afternoon so that we could rest. We didn't take her up on it, and we went to rest anyway, leaving him to read quietly in an unfamiliar apartment - again- something that would have been unthinkable a few years back.
What was most touching of all occurred during the lunch seuda. The kallah's father introduced Binyomin Dovid - the same way he introduced all of the other darshanim. Binyomin Dovid stood up to give a drasha. He announced that he was not going to say what we had learned together and proceeded to ramble - there were definitely Divrei Torah in what he said, but he jumped from topic to topic. He did remember to thank the appropriate people and bless the chasson and kallah with all of the appropriate expressions, but focused it wasn't. What was most touching was that despite the rambling, the kallah's grandfather, a well known rabbinic figure here in Israel, pulled up his chair and sat right in front of the shtender, looking the whole time at Binyomin Dovid as if he was riveted by the most fascinating Dvar Torah he had ever heard. Following his cue, several of the men did the same. The women from the kallah's extended family all crowded by the mechitza and listened - not as if they were listening to a cute kid babbling, but as if they were listening to a real drasha. When Binyomin Dovid finished, the Rav stood up and shook his hand with a hearty yashar koach and many of the men followed suit. That, as my mother commented, is the sign of a truly great man.
My initial reaction was to think - well they are impressed because they do not know what he is capable of, but since we know that he is capable of giving a drasha that is more structured and focused, I was less than thrilled about the rambling. Don't worry. I kept that thought to myself. In retrospect, I realized that what was important was that they were not responding to an "amazing" kid with Down syndrome. They were treating him with respect, regardless of his abilities. There was something immensely positive about his not "doing his best". No one came over to me to say "wow" because it wasn't wow. They weren't respecting wow. They were respecting his Tzelem Elokim.
We have certainly come a long way in the past few years. Hints of imminent adolescence are showing me just how much of a long way there still is to go, but looking back on where we were compared to where we are now, and contemplating the endless siyata d'shamaya that has gotten us to this point, gives me hope and chizuk for the future.
This article first appeared in issue #16 of Down Syndrome Amongst Us