At Long Last, the Breakthrough We Thought Would Never Come

After those 4 awful days when my ability to cope was tested to its limits, things quietly, subtly started changing. Perhaps it was my new attitude, thanks to the incredible talk by Rabbi Feiner. Perhaps it was HaShem finally having mercy on me and my family and starting to turn our wheel upwards. Whatever the case was, over the next few weeks, there were some surprisingly positive changes in my house.

My apartment passed inspection, and a huge burden was lifted from me. I had been living with a lot of stress for months anticipating the inspection, and thank G-d it passed easily.

The next week we went with Dovi to check out Otsar. I was extremely impressed with the school. Although the teacher of his classroom was not bilingual, I was sure i would be able to teach her some basic Yiddish words. They had a fantastic playground on premises, sensory therapy daily including an amazing sandbox, lots of toys to play with, custom made breakfast and lunches, and so forth. I was a little uneasy though; I knew Dovi would not make a lot of progress in this environment, as they only had 1 1/2 hours of ABA therapy a day and he did not need 'circle time' as he did not socialize with other kids at all. When I spoke to a parent at EEC I discovered that their curriculum was pretty similar (minus the ABA and sensory therapy) and I couldn't see Dovi managing to navigate an educational unit like they did at  Otsar. I was also worried about the long bus ride twice a day and the language barrier. I knew that the only reason to switch to Otsar was practical; he needed a normal center-based program where we didn't have a problem every time a therapist was absent. I informed them that we were in for the 2012-2013 school year, but I decided not to inform TABAC just yet.

First, though, we still had to suffer a few more weeks of Dovi's continued terrible reactions to the Clonidine. He continued falling asleep within half an hour of the morning dose, sleeping off the morning and missing a lot of school, and then having a rebound of hyperactivity and strange behavior. I tried calling Dr. Molofsky, back and forth. We played around with his dosage but it just didn't seem to be working right. We finally decided, with the doctor's agreement, to stop the medication. It was doing more harm than good. I didn't inform the Sunday Respite Program that I had stopped the meds. They had finally accepted him after continued hedging and hesitating. Estelle agreed to be his counselor, and the director nervously agreed to take him. His first day would be at the very end of February, the Sunday after my sister's wedding. (I tried getting hold of Dr Cartwright and did get Dovi on the waiting list, and ultimately we saw him this past November.)

The wedding was beautiful. It worked out perfectly for Dovi; Nina dressed him for the wedding in his gorgeous wedding suit, Estelle came to be with him for the reception (Kabolas Ponim) and I got my coveted family photo!! He ran a bit wild, but he loved the music, flowers and atmosphere, and I felt like "everyone else", with 2 beautiful kids to 'show off'. (I didn't take him to my sister-in-law's wedding; there was no point/reason to chase him around the whole night - he is not wedding material at all, but at this wedding I really wanted him to be there so I could get a probably-once-in-a-lifetime family picture.) Here is the glowing, innocent Dovi at the wedding. (I left only a hint of Chaim in the picture as I'm leery of posting pics of my kids online if not necessary.)

I know it's hard to picture this angelic face being the Minister of Destruction, but believe me... you haven't seen him in action :).

The Sunday after the wedding, the Sunday Respite director announced that Dovi was there "on a trial basis". She had heard he was off his meds and wasn't too pleased. But Dovi proved to be about as difficult as most of the other kids there - his biggest 'issue' is that he is so fast. He disappears in a minute. And he needs to be constantly occupied; his attention span is pretty weak. But thankfully, Dovi has been at the Sunday Program consistently. Unfortunately, the program isnt always in session. They aren't open during legal holidays, and next Sunday - my biggest pre-Pesach cooking day - they're closed too. They don't have a gap program during intersession such as before the summer and after the summer. When he turns 5, to fill these lapses, he'll be able to attend the Clinic's Respite program; I put my foot down and told Pearl and Marilyn that they simply have to accommodate Dovi once he's eligible for their program even though he isn't the easiest kid to handle. Hopefully the Risperdal will make a difference (although I believe it's time to up his dose again; he's been biting people lately and reverted to his hyper behavior again....).

Something else wonderful happened to us just around then. My good friends Sandy and Elaine had been encouraging me for a while to get a Home Health Aide for Dovi. She would be able to help with housework and cleaning up after Dovi's messes, and looking after him. I was wary; I didn't think my husband would like having someone traipsing around underfoot all the time, even if it was a helpful someone. But then someone incredible happened. For complicated technical reasons I hadn't been able to have my old phone number in my new apartment since I had moved. In February I finally was able to get it transferred to my new apartment. The first phone call was from someone who worked at EEC and called from time to time just to check how Dovi was doing. He asked me if I could use a Home Health Aide. I told him that I probably could, but didn't have the head to go through with the hassle involved in applying. He told me that there was a Home Care Agency that specifically serviced the disabled population and it could be arranged in a matter of days. It sounded intriguing - and he was right. All it took was one quick phone call and a visit from a nurse to set it all up. Then came the fascinating saga of the Home Health Aides. It spawned two really amusing stories, both of which I will tell in the next post or the one after.

That week I also attended a brunch hosted by the main Headquarters of TABAC. I was stunned to discover that despite being mom to the lowest functioning kid in the room, I was in most emotionally healthy place of all the women in the room. They were still in whining mode and in desperation mode. I had passed that place. I had already gone through the gamut of denial, anger, and depression. None of those moms had reached acceptance yet. It made me feel good to be the one to offer them tried-and-true advice; it was hard to believe that just one year earlier I was the one drowning in despair and desperately reaching out to others for help. Now the tables were turned, and I was the experienced one with the resources and ideas. It was a heady, liberating feeling.

And then suddenly... eerily mirroring this year's dilemma, I suddenly wasn't sure if I wanted Dovi to go Otsar. TABAC was instituting changes in their programs and turning it into more of a school-like setting. They were buying pizza for the kids for lunches. There was circle time in the morning with davening. And strangely enough, Dovi suddenly reached the long-awaited breakthrough.

You know how you can be banging on a brick wall for a long time, making only slight chips and chinks but still not managing to throw the wall down? Then suddenly, one day, the pressure of all those weeks of banging make the wall collapse onto itself. That's how it was with Dovi; nearly a year of frustration as he just didn't seem to be moving ahead, and all of a sudden - the "breakthrough." I talked to him; he listened and obeyed. We told to him to sit, and he sat. His eye contact was nearly perfect. He was playing with toys. He was sitting quietly and eating. He was following simple instructions.

Suddenly I wasn't sure if I wanted him to switch to Otsar. TABAC did have too many conveniences. I was very confused. I made a spreadsheets of the pros and cons.

OTSAR

MORNING
7:30 bus

PROS

I'll be done early. no chance of mess in morning.
Same schedule every day, no variations
Matron on bus
He enjoys to travel

CONS

I'm not a morning person & it's so early for a 4 y.o.
If he sleeps late I'll have to force him awake & send off cranky
He'll be really hungry
Bus ride extremely long
Driver/matron may not be nice.
Chaim's bus next yr is 7:50, it'll be really tough

FOOD SITUATION

PROS

I don't have to prepare any food, ever
They have tons of food choices

CONS

none


EDUCATIONAL PROGRAM

PROS

Social environment
20 minutes sensory therapy daily, rice table, etc
Lots of toys
Very into pictures
Floor time
He'll be like a preschool kid

CONS

no ball pit at OT
only 90 mins/day ABA
Not sure he'll learn well in such a program
we might lose progress 

STAFF

Dont bother parents with individual requests /observations
Plenty of staff avail, subs not a problem

CONS

Transition & language barrier can waste many months 
Staff likely not so accessible to discuss progress etc

AFTERNOON TRANSP

PROS

Will get home close to 4 pm, incl Friday yay!

CONS

he'll likely be impatient /hungry on way home
Will fall asleep & that'll wreak havoc on bedtime & mornings

OTHER PRACTICAL CONSIDERATIONS

PROS

Staff absence is not my problem
They have an amazing backyard and sprinkler
Large airy rooms
It's a school, so runs smoothly w/o my involvement
Will be a good transition year to learn English & a classroom environment

CONS

Very far - if misses bus/has appt, must stay home all day or I shlep 2+ hrs by train
We might lose 2 yrs of hard work & progress; he may not respond well to transition
Board of Ed has many vacation days including midwinter & Prez week. 
More likely to be closed in snowstorm
No walks outside. he gets cabin fevery
He loses bilingual status for eventual future therapists/schools

TABAC

MORNING

8:55 van

PROS

Timing is much easier
If he sleeps in can come later
Driver is nice
Plenty of time for him once Chaim's bus will leave

CONS

Morning schedule often changes
Not available Friday
He climbs out of his stroller often

FOOD SITUATION

PROS

none

CONS

Preparing breakfast lunch is a pain in the neck
He often goes hungry bc he doesn't want anything I packed 

EDUCATIONAL PROGRAM

PROS

He's doing very well in ABA
Extremely individualized

CONS

Very hard work for a little kid
Not many toys
Very little socializing

STAFF

Staff know him inside out by now, all quirks & needs

CONS

He sees too many therapists, it's confusing

AFTERNOON TRANSP

PROS

No long, tiring bus ride home

CONS

He sometimes waits long to be picked up which is hard on office staff

OTHER PRACTICAL CONSIDERATIONS

PROS

If he doesn't feel well, has an appt or I run late, easy to pick up & drop off
Can take walks outside w/staff which he loves
Ease of communication. Staff & I know each other well

CONS

Small, claustrophobic rooms
Constant staff changes and absences
Staff needed much prompting to check diapers etc.

I met with Zehava and Sarah at TABAC with my pros and cons list. They did not dissuade me from transferring him to Otsar, but made it quite clear that Dovi needed a lot more ABA than Otsar would give him. They asked me what they could do to make things easier for me and we came to a bit of a compromise. They did tell me, though, that they could not guarantee there would be substitutes available every time someone was out. I had to agree not to whine and complain every time. It was a difficult thing to agree to, but I knew I had no choice; Ultimately, Dovi's success did seem to lie with TABAC and I didn't want to hamper his progress. I let Otsar know I was backing out and they can use the slot for someone else. I have not regretted the decision for a moment.

It felt eerily like deja vu when I was faced with a similar school dilemma this year. Only this time, logistics and comfort won over possibility of progress. Dovi has different needs at different ages, and his family's needs change as well...

Up until that point, it had been a constant two-steps-forward-one-step-back process with Dovi; sometimes, he stayed stuck at one-step-back for months. It seemed, finally, that we had achieved the precious, coveted 'breakthrough'; his brain had opened up, and he was listening, understanding, and aware of the world around him.

Funnily enough, despite my constant friction with Alice, she is the one I credit the most with Dovi's progress. Dovi needed someone as driven and cold as her to break through the stubborn wall of non compliance. The first step was getting him under instructional control, and from there on, progress came more quickly. A few week later, to my absolute shock, Ellen, the darling Ellen, came back from her prolonged medical leave. I was certain that they would give her back most of Dovi's hours, but to my disappointment they didn't. When I called Rose to complain, I learned that Dovi was too physically draining on Ellen and she simply couldn't undertake working with him again. Later on, they would work together in a different form - I'll tell that story later on.

Anyway, since then, it's been mostly steps forward with very few steps back. Where is Dovi today, cognitively? He has the 'misbehavior smarts' of a 3-4 year old; he knows exactly what's located where, knows what he wants, and will go to any lengths to get it. He definitely understands directives, although he does not understand abstract concepts or time. He is still very hyperactive and sensory seeking, and I cannot be around him for any length of time without having some form of help - be it my husband, a res hab counselor, the home health aide, etc. He is not verbal, although he points and gestures and can sign for food or drink. He loves to play with electronic toys, balloons, have bubbles blown at him, and so forth. He is, and remains, beautiful, lovable, happy and precious. As they say in yiddish, "Der basherer zol helfen s'zul tzikimen voos s'failt em." -HaShem should help he should acquire whatever he's still missing.