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Friday, November 23, 2012

An angel named Rose and a community of Kindness

The wait is finally over, dear readers, and it's time to tell the tale of an angel named Rose..

Let me introduce you to my saving angel, Rose. She is so quiet and invisible that I often forget about her and I only remember her existence when things get really bad and I urgently need an advocate between myself and TABAC (which bh has not been necessary since June.)

Rose is actually the daughter of my community's Rebbe.  She's two years my junior and I know her well from summer camp and community events. A dignified, brilliant mother of a large family (KE"H), she is the quiet force behind the scenes for hundreds of parents in the community who deal with children with mild and major special needs. She's the go-to person between the schools, the therapy centers and the parents. Often a mother feels so overwhelmed and confused when first discovering that her child needs therapy intervention and doesn't communicate effectively with the principal or the therapy center. That's when she steps in. She listens, empathizes, and comes up with solutions.

When Chaim's preschool teacher had first told me to seek therapy for him, I was taken aback. I called up the main school office and was directed to a person-in-charge, who helped me compose a letter to the Board of Ed requesting an evaluation - and then she told me to call Rose so we could determine together what was wrong with Chaim and what he might need.  At the time I was a little put off by her, because she hinted that Chaim might be on the spectrum due to some of the symptoms I was describing. But she directed me to the behavior specialist at TABAC, who came down - as a favor - to observe Chaim at school, who told me his issues were really not that bad - and then the specialist promptly suggested that Chaim come to the ABA center to get all his therapy back-to-back.

No thanks.

Since two years had passed since then, I had totally forgotten about Rose's behind-the-scenes involvement in TABAC. I was therefore a little surprised when she called me up to touch base and check in with me on how Dovi was faring.

I froze, and gnashed my teeth in frustration at my own stupidity. WHY HADN'T IT OCCURRED TO ME TO CALL ROSE ALL THIS TIME WITH MY ISSUES WITH TABAC???

Well, the simple answer is that I wasn't aware of the extent of her involvement. At that time, when Naomi was still at the helm of TABAC, her intervention as a parent advocate was often frequently necessary because Naomi did not live within the community and it was sometimes necessary to bring in someone who was aware of the cultural nuances and community attitudes etc. that she wasn't so fluent in. I did not know all of this.

I proceeded to unload my entire story in one breath. I told her about Dovi's early years, the devastating diagnosis, and the supreme frustration at the TABAC 'system'. How I felt duped by the whole thing, how difficult it was to endure 2 hours of ABA every morning plus OT and speech in the afternoon, all in my cramped, railroad-style messy apartment. How upsetting it was that Hannah had quit. How overwhelmed and out of control my life felt.

Rose listened, tut-tutted, cluck-clucked, and probably wiped away a few tears.

Then she dropped the bombshell.

Apparently, Naomi had finally realized that continuing the ABA daily in my house was not an option. I was disturbing the therapists, Dovi did not respond well or cooperate because he knew he could always run to me when he had enough. She had tried all kinds of ways to find a location for Dovi to get his therapy out of the home but were not successful. So she recruited Rose, who has community connections, to figure something out.

Rose made a few phone calls to families on my block to see who had a basement room they would donate to the cause without charge. She hit paydirt after one or two phone calls; she had found not one, but two available rooms. Tomorrow, Naomi and Hannah would go with me to check out the two locations and see if they were feasible.

I was stunned. All I thought to myself was Mi K'amcha Yisroel - Who is like your nation, Israel? These people were strangers; they did not know who was going to be using the rooms. They had simply been asked if they had an empty basement room to use for a child who needed therapy, two hours every morning. And both of them had said yes.

Not for naught are the three simanim (signs) of the Jewish nation rachmanim, bayshanim and gomlei chasadim. (Merciful, Bashful, and Loving-Kindness) Naomi was speechless. She had never seen this display of generosity in her own community. The neighborhood I live in is known for its many charitable and volunteer organizations. This would mark the beginning of an ongoing era in my life where I would be the beneficiary of thousands of acts of kindness and generosity and volunteerism. I will use the Hebrew term chesed often to describe these acts of kindness - so if you're not familiar with the Hebrew language, the explanation is right here...

The next day Naomi, Hannah and I set out to check out the first place. We weren't immediately impressed; located two long blocks away, it was a small hachnosas orchim (lit. "greeting the guests") apartment, a small kitchen-and-1-bedroom space that was rented out free of charge for out-of-town couples or small families for weekends. There was very little space to work in, and we were nervous about leaving the apartment remain in the pristine state we found it in every day. I also asked Naomi pointedly how this setup didn't violate the 'rule' of needing an adult present during the therapy sessions for 'legal reasons'? She was stuck with no response and I felt a little bitter about all those hours I spent locked up in my apartment listening to Dovi screaming through his sessions.

I left Hannah and Naomi with Dovi and went to scout out the second apartment. I was blown away at how perfect it was.

Located just five houses away from my own apartment, it was a tremendous, spacious basement. There was room for a small table-and-chairs that Naomi would send from the center, and tons of room for Dovi to run around in during his breaks. There were two large closets where we could store his toys and equipment. There was a bedroom in the back where Dovi and the therapist could retreat to when he got overwhelmed or wanted to lay down. Best of all, it had a set of stairs open to the rest of the home, which meant that a real adult would be 'present' on premises during the sessions, thereby solving the 'legal problem.' The owner of the house knew me; she was shocked to learn about Dovi's disability and was more than glad to be of help.

I was humbled by the reality of so many wonderful, warmhearted people in my own community - on my own block - who were ready to do such voluntary acts of kindness such as giving away space in their basement every morning to near-strangers, free of charge. I was truly emotional.

Naomi was thrilled with the new setup. The next day, bright and early, she brought over a child-sized table, child sized chair, teacher-sized chair, and a ton of toys and supplies. She observed Bessie's session and was thrilled. Hannah had her final session, and a day later it was time for me to meet Ellen, the new therapist, who came highly lauded by Naomi.

I was speechless with gratitude to G-d. The miserable initial months of ABA therapy were over. From here onward I would have my mornings back to myself (HALLELUKAH!!!), and I couldn't wait to meet Ellen, who would prove to be the best thing that could have happened to Dovi and me.

I took a lesson from that awful first chapter; that Salvation from G-d can come in the blink of an eye. And that the darkest hour of the night is just before dawn breaks. And all other pithy cliches and platitudes about faith and hope. Which, my dear readers, are actually true.

To be continued.


  1. As a parent of children who had therapy through EI myself, I understand that the rule of an adult always being on site can be very annoying. However, as a Speech Therapist as well, I must tell you that the rule is a very important one and one I strictly enforce with my own clients.

    It is very scary as a therapist to be working with a child when the parent is not around. What if something happens to the child? Am I the one who has to bear the responsibility of making an emergency decision - one that can potentially cause me legal problems if the parents end up suing because they didn't like my decision? I know that this is not a very common occurrence - after all, emergencies are not too frequent B"H, however even for the small likelihood that something might happen I will not risk my entire career.
    There are also issues a lot smaller, but way more frequent, that arise when I am the only adult around. Firstly, some parents are not the most responsible and won't always pick up their child on time. They can have the most valid of excuses, but meanwhile I am stuck with your kid until you arrive (you don't want me leaving your child alone obviously). This often causes me to be late to my next client, which has a snowball effect on my entire day, as I typically have a tight schedule with clients scheduled back to back.

    Another issue is toileting. I don't know if Dovi is trained or not, but either way - I don't want to be the one taking your child to the bathroom and I certainly don't want to be changing a 4-year-old's diaper. Those are the duties of a mother and not the speech therapist. As cute and charming your child is, and as loving and caring as I might be, toileting is a line I will not cross.

    It is also for my own protection that I insist on having an adult nearby. In today's day and age children can (and do) make false accusations about their teacher/therapist taht are believed. I know of cases where the child's accusation was believed over the clinician's word and the clinician lost her job and the possibility of any future jobs. If a parent or teacher is around and present for my session, a child can't falsely accuse me of something that didn't happen. So having you around is something I need to protect my back. (I know that this is not such a concern with a non-verbal child, but the rule has to be the same across the board.)

    I hope my explanations have helped to give you some perspective so that you don't view it as some stupid rule that they are implementing just to make your life more difficult. At the end of the day, the therapists are therapists - not babysitters. It's the parent's responsibility to either watch their child, or pay a babysitter or school to watch their child. But therapy is not babysitting.
    (Btw, I am glad for your sake that Naomi approved of the setup in the basement apartment, using the owner of the home as the 'adult on premises'. Unless that adult is ALWAYS home for the sessions, is easily accessible to the therapist and aware of what is happening downstairs, AND is willing to take full responsibility for your child's diapers, emergency decisions, etc. the setup would not have been OK with me.

  2. I fully understood Naomi's and TABAC's concerns, and I was always present during the short half hour sessions of the OT and Speech. However, this was extremely impractical for a daily 2-3 hour therapy session. I was especially irked since the original setup had supposed to be twice a week at the center and twice a week at home. Dovi basically had a center-like setup in my house: 2-3 hours of ABA,1/2 hour of speech and 1/2 hour of OT. That meant I HAD to be stuck in the house every single day for four hours. It was very difficult. So this was a lifesaver.


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