HOME-BASED ABA IS WORSE THAN CHINESE WATER TORTURE

We last left you off in the latest installment of our serial story (which should be aptly titled "Never A Dull Moment") with our arrival back home from what can be loosely termed "summer vacation", although it had been anything but. I immediately fell onto an endless treadmill of stuff. My husband's second-to-youngest sister was getting married a week later and I did not yet have a dress to wear for the occasion.

So off we the very next morning, boxes still unpacked, to register Chaim for day camp for the one remaining week of the summer (we had come home early due to the selfsame wedding) and then to the underthings store and to the fancy dress store. Thankfully I snagged a pretty black suit - that's what the ladies wear nowadays to weddings around here - and the boxes got unpacked,the house got cleaned up,and I braced myself for the crazy schedule to come.

It didn't happen all at once. Within the first week Dovi slowly started 'related services' in the form of two new speech therapists, Malia and Debbie (Vivian would be coming home from the Catskills a week later) and Lynn the occupational therapist. Dovi cried with all of them. Debbie was "ABA trained" and tried to implement ABA-style methods, which Dovi, of course, hated. Malia, a sweet, 'regular' speech therapist, was at a total loss on how to reach Dovi. Fortunately she had some exciting toys with her, such as the gears toy Vivian used, and Dovi cried the least when she came, viewing it as play time. Lynn immediately zeroed in on Dovi's varied sensory issues and we devised techniques together to get him calm and cooperative. We created a swing out of bedsheets and swung him vigorously together before every session. She initiated a "brushing" program to give him deep sensory input on his skin, and she often created a tent out of  bedsheets and dining room chairs, creating a quiet, soothing, enclosed environment for him to work in. The first month he cried straight through his sessions, but gradually he got used to her techniques and found them soothing and began cooperating with her.

The wedding came and went. Dovi looked gorgeous in a little silver suit and matching cap and socks, although he had to be restrained in a stroller during the entire pre-ceremony reception, as he was running up and down the stairs and in and out of the kitchen. Immediately after the ceremony I took him to a babysitter so I could actually, you know, sit down at the wedding. We managed to snap a few beautiful pictures though.

I could hardly enjoy the post-wedding seven-day festivities. I was extremely anxious to get ABA started. Today, as a veteran of the E.I. and C.P.S.E. systems I understand a little better how it works, with starting dates and school dates and just how much therapists today don't like working for E.I. New York Early Intervention is getting tougher on both parents and therapists; the 'free ride' of the heyday is over. They cut salaries for therapists, slashed sessions greatly, and piled loads of paperwork on the therapists. It was the first time the local branch of TABAC was working with E.I. and it was a learning curve for both Naomi and myself.

But I was stymied; I couldn't schedule the related services therapists without knowing the ABA therapists's schedules. After getting the usual frustrating runaround from Naomi and Becca, Naomi finally called me.... with not-such-good-news. News that would throw me in a turmoil - a seething, angry, life-isnt-fair turmoil.

It turned out that Paula the EIOD had been right. Unlike the other 2 branches of TABAC, my local branch did not have an E.I. charter. Which meant that all five weekly sessions of ABA would take place in my house. And I wasn't allowed to leave the house for the duration of those sessions "for legal reasons."

I thought I would faint.

I was going to be a virtual prisoner in my own home. It would be the equivalent of watching your child get stitches in the ER but be forbidden from soothing him.

I knew Dovi hated ABA. In the Catskills, at least, I didn't have to be present for any of the sessions. But back home in the city, straighter-than-a-ruler Naomi played exactly by the rules and there was no way to bend them.

I begged, I pleaded,I cajoled. I promised I would never sue if something happened while I was off premises. Nothing doing. Naomi told me truthfully that I could register Dovi in a playgroup and have the therapists take him into a side room to do the therapy there. But that wouldn't work; playgroups in my neighborhood are located in tight quarters with no extra rooms. Besides, I wasn't going to  pay $350 a month for a playgroup my son wasn't going to attend.

This was a nightmare.

In despair I called up Annie from EEC, begging her to get the principal of EEC to reconsider accepting Dovi. "I'm going to lose my mind from being locked into my house every day and listening to the screaming," I told her through my tears. I bitterly regretted my involvement with TABAC; this was exactly what I had been afraid of. Their modus operandi - albeit unintentional - of making promises they couldn't fulfill was continuing. Annie was sympathetic - and furious. She told me that Paula had been stunned when Becca had insisted that TABAC is an EI center when Paula clearly knew it wasn't. Becca had made an honest mistake and I don't fault her for that. I probably would have stayed with TABAC even had I known from the start that all sessions had to take place in my home. But for the moment I was in shock and felt duped and blindsided.

I didn't have much of a choice. I did try half-heartedly to find another solution; I called a few other EI agencies serving my area to find out if they did ABA E.I. in their center. I found a reputable place with an open slot. They even provided transportation. It sounded like a dream. But the timing was terrible; it was right before the High Holy Days, and TABAC was already setting up Dovi's schedule. I didn't have the time to travel to that other center for an interview before TABAC's schedule would start. I also didn't want those therapists to be minus one case if I chickened out at the last minute. And I didn't want to risk Naomi's ire, since I did want Dovi to attend the Center the following year. (The Center is incredible. Dovi has made massive strides in the 1 1/2 years that he actually attends the center. Ironically as I mentioned before, Naomi left this branch of TABAC last September,so all my 'fears' of upsetting her were for naught.) Naomi promised me that this was only a six month problem; in April Dovi would be able to attend the center full time since he was turning 3 in July. This would turn out to be another 'promise she couldn't keep' - she hadn't done her homework and didn't realize that he was aging out in July, not in January.

Now in hindsight I know I was foolish; had I decided to yank Dovi out of the program and switch him to that other center, TABAC would have found work for the 2 therapists very easily. I did not yet know how things work at TABAC and at many such centers; new cases come and go all the time, therapists get switched around all the time. New therapists are hired, kids age out, and changes happen constantly. I could have started with TABAC for a week and changed my mind and his therapists would find other clients. But at the time I did not know that,and I was a little fearful of change and being out on my own again. What if that other place wouldn't work out? Then I wouldn't have room at TABAC.

So I stuck it out.

Naomi told me she had two incredible therapists lined up for Dovi: Hannah and Bessie. (Not their real names, of course, though if you're shrewd enough you'll realize by now that every assigned name is the closest equivalent of the individual's real names).I must give her credit for that; they are indeed incredible therapists and were perfect matches for Dovi. When they worked with Dovi on their own, I found I could tolerate the kvetching and wailing. I set up shop in the far bedroom so I could not hear them, and often they took Dovi out to the park or down the block for a stroll to give him some space to air out. They didn't do serious work with him that first months; it was a getting-to-know-you period.

The trouble was, it wasn't that straightforward.

First to arrive was Hannah. Dark-skinned and well coiffed, expertly put together, I felt frumpy and self-conscious in her presence. My house is not museum-clean on a daily basis, and I felt anxious and pressured to keep it clean.  I spent too much time chatting with her, pouring out my heart and showing her clips of Dovi's development before the regression set in. I barely let her work with Dovi.

Minutes before her first session ended, she uttered the last words I expected to hear from anyone: "I SEE A MOUSE!"

Our apartment had a rodent infestation problem. Trust me, I hate mice as much as the next person. I had heard squeaking and had seen droppings for days prior to the actual Mickey sighting. In the 15 years I was living there, I had paid more than my fair share for mouseproofing. My landlord refused to pay for it. Worse still, he refused to mouseproof the hallways and stairways, and the neighbor in the house next door refused to mouseproof her 2-and-a-half floor apartment either. So every few years I paid $400 to have the holes in the home plugged and poison put down, but we still saw/heard/caught mice all the time. It was one of the main reasons I was pining to get out of that hellhole, but for mainly financial reasons, it wasn't feasible to move at the time. I was paying literally pennies in rent, and didn't have the finances for moving expenses.

So Hannah had seen a mouse. Information which she promptly relayed to Naomi, who relayed it to Becca, who called me. Hannah refused to return to my home unless I caught the mouse. She had a mouse phobia. Becca told me not unkindly that living with vermin is unsafe and unsanitary and I would be better off calling an exterminator.

I felt dirty and exposed. It hit me in the face only full well that for the better part of the next year and likely for the rest of our lives with Dovi, we had no right to privacy anymore. People would be traipsing in and out of our house and life, inevitably judging us, telling us what to do, setting conditions in exchange for services.

In this case, it was a heavy price to pay. Three hundred fifty greenbacks to be precise.

An exterminator was duly called. Indeed, he found a gaping hall in the wall I shared with the I-refuse-to-exterminate next-door-neighbor. Holes were plugged, money was paid, but it took 3 whole weeks for Mickey to meet his sticky demise on a trap.

Enough time for me to feel scared and violated.

Okay, I'm being dramatic. I bear no grudge against either Hannah or Becca. Or even Naomi. And not just because they are probably reading this blog. Because I truly believe they were doing the right thing. But I was vulnerable and in a terrible place emotionally and the whole debacle did not help me feel better or foster any warm fuzzy feeling towards TABAC.

The next blow came in form of Bessie being involved in a car accident mere days before she was to begin her sessions with Dovi. In her stead, Naomi sent Sarah. Sarah is a young grandmother, a years-long, no-nonsense veteran of ABA, who was essentially the director of TABAC on the days Naomi did not come into work. Sarah and I are great friends today and have been for the past year and a half. But on that day that she first entered my house, I took an immediate dislike to her. She was a strict, no-nonsense therapist, and the screaming from the bedroom shook me to the core. She did not understand my distress at all, and in hindsight I certainly understand why; crying and screaming is commonplace at TABAC, especially when children first get used to the system, and she is immune to it. But to my tender ears it was akin to waterboarding at Guantanamo. I kept barging into the room to hug Dovi and make it all better and beg her to lay off my little one, which didn't quite please her. It was a mess. I was relieved after two weeks when Bessie had recovered from her back injury and took over. The level of crying went down, and she spent a lot of time with him outdoors, away from my bleeding heart.

Soon after, Naomi came to  my house to observe a session with Hannah. It was a disaster. I kept interrupting her with my observations, and it was truly difficult to watch her doing her job, which involved a lot of crying on Dovi's part. My motherly heart couldn't bear it. I officially hated ABA, if I hadn't hated it enough until then.

At one point I felt I couldn't bear it anymore and walked out into the hallway to cry my guts out. I came back inside, tear streaked, and told Naomi, "One day you will hear on the news that a mother of two was found floating in the Hudson River, and that mother will be me!!! I can't bear this anymore!" It was clear that the setup wasn't working for anyone. Dovi wasn't gaining anything, I was stressed out to the max, and the therapists weren't happy either.

Something had to give.

And something did give, in the form of a phone call from an Angel of G-d named Rose.

To be continued...