By G. Greenstein
I recently went to be menachem avel a couple who lost their child. The conversation was focused on the special neshamos of these holy children. Then someone mentioned that I had once conversed with my special needs son via FC. The couple eagerly asked me for details and I told them whatever I could remember. I promised, though, to send them the word for word transcript I had written back in 2011 when the conversation had taken place. Yesterday, I searched for the document on my computer, and when I found it, I had an urge to read it again after all these years.
I sat, stared at the screen, and cried.
What is FC?
Facilitated Communication is a way of communicating with people with autism or other communication disabilities who are non-verbal. The facilitator guides the disabled person’s arm or hand and attempts to help them type on an alphabet chart, keyboard or some other device. A cousin of my wife, who was an expert facilitator, was visiting from Eretz Yisroel and offered to help us communicate with our then 7-year-old son. We took her up on the offer and were blown away by the results.
Whether you believe in FC or not (a hotly debated topic), we all agree that we are totally and completely clueless about these hidden souls. They live inside tormented, and often disfigured, bodies, yet they possess the most elevated and exalted souls.
My son described how, “In the previous world, I was a neshomah of a very great tzaddik and a big posek and they wanted to send me to Gan Eden. But I asked that they should give me an opportunity to return to this world, because I loved politics very much, and for such a high neshomah like mine, I wasn’t able to reach the place I needed to reach. After so many tefillos, I wanted you. I knew that you were involved in chinuch and you have an opportunity to influence so many people, and you will be able to influence people in shmiras halashon.”
Do we really know how great they are? Do we have any idea? They live amongst us, we see them in the stores and shuls, and yet we have no idea who they are…
More than these exalted souls are the people who help care for them; the people who, when you pass them on the street, you hardly notice them. They are truly great!
We are in the midst of the coronavirus and all our kids are home from school. We are trying our best to make it work. We scramble to buy new cell phones. We don masks and gloves before going out to buy essentials. And we struggle to create a happy, upbeat atmosphere when there is an overabundance of sad news – about people our kids themselves knew or know. Now imagine that you also have a child with special needs at home, as their schools are closed too. Maybe he has Down’s syndrome, maybe he has autism, maybe he is wheelchair-bound, maybe he needs a feeding tube, or maybe he has a debilitating disease…
Who will help you? Coronavirus is spreading fast. Simple contact with the wrong person can infect you in mere seconds. Who will be willing to help? How will you manage?
Let me tell you about the real heroes.
Let me tell you about the morah who taught our son last year in Ohr V’Daas, a married woman with small children who takes our son to her house for two hours every morning and works with him.
How about the chassidishe bochur who plays with our son between his first-seder phone conference and his second-seder phone chavrusah?
I wish we can properly express our gratitude to the family who gives our son chulent and kugel every Shabbos morning, and to the two families who help take care of him on Shabbos afternoon, and the seminary/post-seminary girls and mesivta bochur who offer to walk him.
How about his amazing school, Ohr V’Daas, which arranged a sophisticated phone system for their special needs students, who are of limited intelligence, and the once-a-week dinner delivery, sponsored by their devoted board members just to show they care?
How about the morah who comes to our house every afternoon wearing a mask to work with our son, a teenager who would never allow others to put a mask on him?
How about the homeroom teacher who sends double of everything for the morah who works with “her student” and the OT who drops off an extra bag of supplies?
Then there is Yedei Chesed, an organization of the highest caliber, which, amidst all the hustle and bustle, cut through the red tape to ensure that our com-hab workers get paid even though they don’t have on-line access.
How about the care packages they send to our families, loaded with games and toys for the siblings of special needs children?
How about the surprise delivery of delightful dairy muffins and chocolates for the holy mothers of these holy children?
These are the real heroes! My heroes! Our heroes!
I remember how the facilitator sat on a bed in our basement with our son next to her and he pointed, letter by letter, the following inspiring words: “You should know that you are taking the very best care of me and I will be zoche (merit) for my true tikkun (rectification) and for a high spiritual level that I will reach in your zechus. That is why I appreciate you very much for all your efforts. I love you very much and admire you very much. I’m happy that you understand me a little and it hurts me that you are having a hard time raising me. I am very happy to speak to you, because I wanted to do it for a long time. I very much admire you. You have many zechuyos (merits). And for all that you do for me, you will get Olam Haba she’ain kamohu (unmatched eternal reward), because I am an adam gadol (a great individual) who you will find out about, not in this world. But when you will find out about it, you won’t believe what a great zechus (merit) fell into your cheilek (portion)!”
To all of you out there helping others, especially the special needs community, my message is this: The soul of that boy or girl you are helping knows. They may be unable to express it, but they know. They may be unable to tell you, but they can feel your special warmth and they appreciate that which you do for them, especially since they can’t do for themselves.
Kids across the globe are listening to phone conferences and recorded classes. Yet, families are looking for things to do. Our family is no different. Aside from camping in tents in our backyard, singing around campfires, and waking up at 4:30 in the morning to daven vosikin atop a mountain in Harriman State Park, we are also fixing stuff around the house, painting and cleaning out old files.
The other day, my wife was sorting through a box of old test results, letters, IEPs, and who knows what else that gathered over years of caring for a special needs child. Most of the box was heartache, old memories of agony and struggle that every family with a special needs child goes through but wishes they could just delete. And there, among the papers, was a ray of sunshine in the form of a few cards that therapists had sent us when they moved on.
Most moving to me was the impression their work had on them. “Thank you very much for your touching card and gift,” writes one therapist named Leah. “In reality, though, I should be thanking you. Spending time working with your son gave me much joy. From his simchas hachahim to his unmatched determination, I learned so much from him daily.”
“I feel so lucky to have been given the opportunity to work with your son over the past two years,” writes Penina, who had become a kallah and was moving out of town. “It was a real zechus working for such an incredible and special family. Working with your son and all the time spent in your home has left a lasting impression on me.”
Then there was a card from Tzippy: “I would like to take this opportunity to tell you how lucky I feel to be a part of your son’s team. When I got the call about working with him, I felt so excited to be getting the privilege. More than that, though, I felt honored to be working with such an amazing family!”
Indeed, every family with a special needs child is amazing. And every person who helps these special souls is super amazing. You are the real heroes!