I wrote this little piece for my daughter's preschool newsletter. The editor asked me to share something of my life, a personal narrative. I asked her: which part of me: Chabad emissary? Preschool person? Mom of a girl pack? Author of my little book? Parent of a special son? Of course, she chose the latter. It's what everyone is most interested in, I guess. And I've come to see that this role- Mendel's mom- is the linchpin of who I am. Nothing else is as central. For years I thought of this a something of a sentence for our family; for myself: "You are only as happy as your least happy child" was my core belief; and seeing as Mendel was not reaching the happiness I wanted for him, the implications were obvious. I also extended that belief: You are only as free as your free-est child. And Mendel was not free; his words and deepest self were not finding expression. He could not string together a sentence and could barely write his name. Thus my own self-expression, my lifelong love of writing, of seeing the words and paragraphs form themselves on the paper in front of me, articulating feelings I knew of but could not speak of, remained mostly within. If he was not free, went my unexpressed logic (I would have had to write it to understand it), neither could I be. Gradually, and inspired by a quote to this effect from Dr. Brad Reedy, I came to be aware that being only as happy as my least happy child was placing far too great a burden on my children. I could grieve for the things my son did not have, and cherish the gifts I was given too. I could be happy because I exist; because I am a valued and cherished soul; because my life is full of blessings. I could be sad for what Mendel doesn't have, and cherish his existence, all at the same time. Mendel's journey is central to who I am and who we are, and it will always be that way. And we wish for more, and cherish life, and find happiness, all at the same time. That nuance is what I tried to convey in this little piece.
We are so blessed that our youngest child, Leah, is having the most wonderful preschool experience
in Morah Leba’s Pre-Nursery class at Chabad ELC. She’s our youngest of six (BH) and her oldest sister Mushka attended Chabad too, in 2006-7, back on 92nd Street. In the interim, we opened our own
Chabad Preschool (now called Manhattan Jewish Montessori) on the East Side where most of our
other children attended. Over the years, we’ve been lucky to be guided by Morah Pearl’s {the director}
wisdom and experience, which she so generously shares (where and how does she have the time? I
will never know!)
One “pearl” from Morah Pearl came when I had to meet with the parents of a child in our 18 month classwho needed additional classroom support. I was terrified of the meeting, and called Morah Pearl for
guidance. She told me (I’m paraphrasing), “Just remember that you are shattering these parents’ dreams. Until a child goes to preschool, parents may not realize something is wrong, or they may be hoping
everything is ok- you are the first person to shatter their dreams.”
This was very valuable wisdom, and helped me gain perspective through a difficult meeting (it’s never
easy) and maintain a warm relationship with these parents throughout their time in our preschool and
beyond.
What also helped, of course, is that I’ve been (and still am) on both sides of the chair, as a preschool educator and a parent of a child with severe autism.
Parenting children who are typically developing, alongside and together with a very severely disabled
child (my son Mendel has autism, and is mostly non-speaking), has been a journey, to say the least.
I look back at my very innocent mid-twenties self, bringing my oldest child to preschool, totally unaware
of what was to come in our lives, and compare it to my current reality, bringing my youngest to Chabad
each day, and think about everything I’ve learned in between.
So it’s true, as Morah Pearl told me, at some point if you’re a parent of a child with special needs,
your dreams really do shatter. In our case, our son was two and a half when diagnosed and appeared
typical until then, so it was a rather dramatic shatter and took many years to process.
I try to wrap up what Mendel has taught us and our family, but it’s not easy- we are in the thick of it still.
Parenting a special needs child- particularly one on the severe end of the spectrum- means you don’t
have an issue, resolve it, and move on. It’s your life; the issue evolves and fluctuates, your response
changes, your whole identitychanges. For the better, in many ways. I have no doubt, for example, that my typically developing kids
are kinder, more empathetic people as a result of their disabled brother. I know that they will always be
able to see the humanity in every person, view others with understanding and compassion, and accept
challenges from a deeper place than most people ever could.
Beyond that, I think the greatest lesson we have learned is the co-existence of dichotomous realities. Bear with me, here. Nuance is not easy to relay, but that’s the beauty of it. We have learned that someone can be deserving of compassion and impossible to deal with, that a situation can be overwhelming and reveal a deeper, richer dimension to life; that we can accept and love our children and go crazy from them (to use a very basic parenting term)--- that it all can exist together. Somehow having a child with extreme needs has made me comfortable with all the extremes in life; I find myself able to sit with them better. I used to think it was a matter of perspective; as in, most challenges pale in comparison to dealing with a lifelong disability, but I’ve come to see that it’s not that. It’s just being able to sit with all parts of life; the bitter and the sweet. The mundane and the monumental. Neither negates the other; they can exist alongside each other and both are true.
I think that perhaps of all the things I’d want to tell someone just starting on a special needs journey, or
wondering about a friend or relative in those circumstances, it would be this point: You will be OK- you
will be very OK. Sometimes, of course, you won’t be OK at all. And both are true.
