I am finally posting this long reflection I began writing the day after Mendel left to the Higashi school- more than two months ago. I thought I could post it right away, that I felt whole enough with all of it to share. I couldn't, and I didn't. Sending Mendel off to residential school was- perhaps still is- the most gut wrenching thing I've ever encountered. In the nights after he left , I'd wake up at 2 or 3 am, overwhelmed with every type of worry, and pace my bedroom floors, sleep completely eluding me. My days were a blur, almost like a newborn haze without the baby. It's been a few months. Things have settled somewhat. He does seem very happy at the school. He is clearly growing in ways he could not grow at home. He is objectively doing well. His health has significantly improved . The reports from the school are great. Our family is doing better. It was very, very hard to manage at home when he was here- harder than I'll ever want to admit. It was perhaps unfair for our other children, although-- perhaps not, he is our child too. I'll never settle that one in my mind, I think. But a tenuous peace has allowed itself into my heart and, thank Gd for small mercies, I've been able to sleep. So I feel like I can share this piece.
Mendel went off to the Boston Higashi School for autism yesterday. Here he is as a baby,
as a gorgeous three year old with his new haircut, as a beautiful ( but always silent) little boy, as a Bar Mitzvah boy that we struggled to understand, we struggled to reach, we struggled to find, as a teenager who struggled to find his way in the world. There are some souls in this world who struggle . I've come to
accept that my son is one of them, and our family along with him. His journey is not smooth; it never has been. His diagnosis didn't fit like a smoothly aligned thing, the professionals we met illuminated some of the treatment path but never all of it; seeing progress was difficult-- two steps forward, three steps back. We never quite knew: was this method/intervention/regimen/ treatment protocol/therapy right for him, and if it was, was this all he could be? Was there more, could he do more, could he be more , could we do more, there must be more. We always knew- we still know- there is more inside. At his Bar Mitzvah my husband spoke from his heart and said the words from Song of Songs "Show me your voice, your secrets ", and he said, we have always felt that Mendel is a mystery to us, we pray for his secrets to be revealed. I admit that when he shared that publicly, I felt a flash of shame at this vulnerability with everyone we knew in that crowded hall. Weren't we supposed to have this child figured out by now, at 13 years old? Or at least put up some sort of front toward that. My ego, my need as an educator to pull it all together and present a coherent picture, an organized show, an impressive accomplishment, felt taken down, humbled. I was not figuring this out on my own, on our own.
Last year Mendel began to outgrow his beloved school of many years. Notwithstanding his painstakingly slow general progress and the tremendously challenging evenings and weekends at home, school days were a bright spot for him over the past seven years in a wonderfully loving Jewish school in Brooklyn . But it was clear- from their end and ours- that he needed a new place. We began to search, exploring residential and local high schools. Local high school options were very limited, and far away, and none seemed like they could work for him. Given his excellent experiences at sleepaway camp each summer, we knew that a highly structured residential setting would be ideal for him. But the Board of Ed was a Covid-mess and at our IEP meeting they told us before we said anything: don't even bother asking for residential placement. We have orders and budget cuts. You can appeal.
We applied to Boston Higashi ( among other schools), and after lots of research and a lengthy intake process - all virtual- Mendel was accepted for September, pending Board of Ed funding. We appealed the Board of Ed; our case was set for August. The DOE had neglected to offer Mendel an appropriate placement, and for those familiar with FAPE ( the law requiring free and appropriate public education for all), that gave us a really good chance of winning a judgement with a direct placement at Higashi. Long story short: We didn't win it. We re-appealed.
In the meantime, September came and Mendel was home. His sisters started school; a busy month of holidays began. He went back to his old school for a day or two trial- it didn't work out. The process of fighting the DOE dragged on with no resolution in clear sight. The Friday after Simchat Torah, I got a call from the Higashi school that had been holding his spot; it needed to be filled and they could not wait any longer - we could either unilaterally enroll and fund him, or we needed a judgement in our favor ( which was out of our control). Oh, and since cases from NY are so backlogged at present , the minimum amount to get Mendel started at the school would be one full year's tuition, a quarter of a million dollars. If we couldn't do it, the spot would go to someone else.
Here is where I felt my need to keep it all together, to say, "we've got this, we're figuring it out", fray at the seams. A few weeks prior to that phone call , I'd shared the disappointing progress of our Board of Ed case on my family chat group. My siblings said, let's do a Go Fund Me campaign for Mendel and get him in! No way, I answered. The Board of Ed is supposed to fund him, not kind friends. It's just a long process but we'll get there. But standing there that Friday morning, I knew his chance to attend Higashi was slipping away in front of me. And I knew we needed help, we couldn't do it on our own. I hated the thought of baring our story on social media. I hated the thought of Mendel's picture on everyone's screen, our plight pulling on everyone's heartstrings. But I stood there and faced reality: we didn't have the cash reserves to lay out, our case was still pending, Mendel was about to lose his spot, he did not have any school to go to otherwise, this place could do really great things for him, and our family and community was ready to help. We could fundraise to lay the money out and use those funds once reimbursed for a different autism-related cause, as my brother had pointed out. I took a deep breath, pushed aside my ego, and texted my brother that we were ready to go ahead with the GoFundMe campaign.
At this point, I felt like all our work to get Mendel to where we had gotten him- the search for the school, the research, the application- all of it was now taken out of our hands, birthed into being by the pro-activity of our family, the generosity, goodwill and tangible caring of close to 500 friends, relatives and some perfect strangers. Within two weeks, we raised over $100,000 on the platform; a group of deeply generous souls saw the campaign and committed to lending the shortfall. Within just a few days I was able to call the Higashi school and commit to the funds. We sent the full quarter-million dollars in a short while later and Mendel's spot was confirmed, with a start date of October 25.
And--- just a few days after that, we won the case with the Board of Ed. Within a few weeks, our full tuition will be refunded and forwarded to charity.
So it all works out, and Mendel started on Monday. He went off with some anxiety, but we got good pictures from the staff and he seems to be really comfortable there and he always loved camp and we think he'll really love it and do well. Here's why we think so:
Twelve years ago, when Mendel was four, we faced a decision, to keep him in a home ABA program or send him to a center based program in Brooklyn that we'd applied to. Tough call. I went to the Ohel late one night to pray for guidance.
Walking away from the Rebbe's resting place I saw Rabbi Krinsky, his longtime aide, who I had worked for years before. I said hello and then on impulse, said: Rabbi Krinsky, I came to daven for my son who has autism. What did the Rebbe ever say about autism, do you remember? Rabbi Krinsky said he was sorry to hear that, and he couldn't remember instances where the Rebbe had advised people on autism (I was not at all surprised , seeing as its such a new phenomenon) and then just before he said goodbye, he stopped and said, "Boston. I think the Rebbe would often tell people to go to places in Boston with issues like these."
I said goodnight, thanked him and thought, well, what am I supposed to do with that? We had no lines out anywhere in Boston, no doctors we had heard of out there, no programs, no methods-- nothing. Until now. Until, out of all the many places we explored, and despite seemingly insurmountable obstacles on the path to get here- this is the place that worked out, the Boston Higashi School.
Something else happened, this past summer when Mendel was away at Camp Hasc. It was a Friday morning, and I had a conversation with the Higashi school, finalizing his acceptance and start date ( pending the success of his board of Ed case, which proved to be a lot harder than anticipated , but we didn't know that yet.) I felt the import of the decision we had just agreed to with every nerve in my body. How had we agreed to this? We had never even seen the place! Every tour and interview was virtual due to covid. We had researched, it all checked out well, but I was in a nervous daze. It was a long quiet Friday; most of the kids were away. My husband called at some point; a woman named Marilyn from Queens called to ask if she could sleep over so she could visit her mom in the hospital over Shabbos. Not a problem. The day went by; I had guests to prepare for, a welcome distraction: my nerves were on edge. After I lit the candles, Marilyn and I got to talking. Your son is in Hasc? she said, I have a special needs son too. And my husband actually supervises group homes for young men with autism; if you ever come to need that, he can help you with that. Well, I told her. I'm not sure we'll be needing that... Mendel was just this morning accepted into a residential school. Which one, she asked. I told her. "Boston Higashi?!" Her eyes grew wide. "That's the best school in the entire country!!! How did you get him in there?? My husband was just there this week to observe their best practices . He will do so well there!"
I almost burst into tears. All my tightly coiled nerves of the day, held together so I could prepare for Shabbat, cook and host a table full of guests- unspooled .
I don't know how we got him in there, and we had no idea it was the best school in the country but- Marilyn, I said, I think Hashem dropped you in my house , today of all days , of all places, to tell me exactly this.
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We got many congratulations for Mendel's next step. We acknowledge them all gratefully. We are eternally grateful for the generous, loving, open hearted support that enabled us to get Mendel into his new school. It has been, overall, a good move for him. He seems settled, happy, calm. Life at home for our other children is peaceful; we can give them what they need, we are not pulled in impossible directions, all the time. We are grateful.
And yet there is a part of me that still says- there is more. My son has more inside. You see part of him, you see an adorable disabled child turned sweet disabled teenager. I see a powerful soul. I see his words . It is not easy to send him away, to pray that his precious heart and precious Jewish soul are cherished and nurtured when we're far away and can't see. I don't know if others see his words, when after all he can't say them.
And in many ways, Mendel's journey is only beginning. Long before finding this school , we began to explore spelling methods, a long process which revealed his intelligence in ways we could not see beforehand. It's a journey we'll continue to be on, even as Mendels day to day life needs more structure than we can provide at home.
It's taken me days to write this out. It's intense and long and winding- but then, so is our journey. Thank you for reading.
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