Nevertheless I do want to pick up the narrative of the Dovi story, being that tomorrow he'll probably be home (Jan 1st) and I have an appointment on Wednesday and before you know it, this blog will start stagnating. All the sensory solutions posts interrupted the flow of the blog and I want pick up the thread of the story where I last left off.
In the most recent entry where I tell Dovi's story, Ellen his SEIT was reporting that he was crying a lot and was unhappy. In addition, Ellen herself was out for a large chunk of the day, coming back at 3 pm to work with him, which is not his optimal time to perform. She also was urging me to look into placing him into an ABA Center, which is a better setup than working alone in a basement. It was a very confusing month for me.
Once Ellen was finally done with her medical situation and was back to working normally with Dovi, he settled down a bit - but not all the way. A new problem cropped up.
Mrs. White, the wonderful neighbor who was so graciously letting us use her basement every day for the ABA sessions, was getting very annoyed by the arrangement - because Dovi was crying. A LOT. Ellen was starting to feel her resentment and was extremely uncomfortable continuing the sessions there. Bessie didn't feel it as much as Ellen, but Ellen was getting adamant about not continuing to work in the basement.
What on earth was I supposed to do???
I called up Naomi, the TABAC director and began begging her once again to do what she could to get Dovi into the actual Center. Naomi assured me that Dovi could join the center in April since he was aging out in July and we could petition the Administrator of my School District to let him age out 'early' at 2 and 9 months, which he would be in mid-April. So I waited with bated breath, holding out for the magical April.
...Until I was informed very regretfully by Rose that unfortunately, there was nothing doing; the Administrator absolutely would not allow it. Had Dovi been born in June, he automatically would have been able to join the Center at 2 and 9 months. But since he had the luck of the draw to be born in July, we had to wait until July for the ABA Center.
For the umpteenth time, I felt duped, cheated, taken advantage of, misled - you name it. There was nothing I could do about it, but I was really upset.
I called Becca, my battle-weary Services Coordinator and let her have it. Poor Becca.
Becca herself was dealing with some internal work-related stress. Her office had been moved out of the main Headquarters of the agency who ran the ABA Center; she had been moved to a new branch of TABAC in a different area of Brooklyn where she was effectively reassigned to glorified receptionist and general manager of the new ABA branch (while still retaining her service coordinator job as well). Naomi was there twice a week. It was also an accredited E.I. center. Dovi's initial therapist from the summer was working there now. And suddenly, before you knew it, a plan was hatched.
If everything woud fall into place, Dovi would attend the new branch of TABAC from April to July.
What an idea!
Was it though?
The pros and cons were lengthy.
He would have to leave early in the morning - before 9 am - with my husband, who fortuitously worked about 10 blocks away! But in the afternoon he would have to come home with a car service, which would be costly, unreliable, and who knows if he would behave in the back seat for the duration? They didn't have any bilingual speech therapists there, so he would have to get his speech therapy after 2 pm at home. If he wasnt feeling well I couldnt run over and pick him up like if it were local. Ellen loved the idea but Bessie was totally not in favor; she felt that it would take him a month to get used to the new place and new therapists, and by then it would be May; in July he would be startingat the nearby branch of TABAC, necessitating yet another transition. Agh!!!
I went down with Dovi to see the place. I was impressed and jealous. The kids were each in rooms, 2 kids with 2 teachers. There was such a variety of toys! The kids were also in small groups. We found an empty room and Dovi made a beeline for some electronic toys. I had a lump in my throat.
Dovi's summer SEIT punched a hole in that lump very quickly. She was completely not in favor of transferring Dovi to that center for 3 months. She couldn't think of any therapist would would be wiling to take on a child that was in transition between programs - she herself was going on maternity leave soon.
Transferring Dovi to that center would be like killing an ant with a sledgehammer. It became crystal clear to Becca and myself that all Dovi needed was some new toys to stimulate interest in his programs and maybe help stop the crying and upset.
So the plan to switch Dovi to the new center was scrapped. What now though? Mrs. White was making her resentment known and Ellen was very uncomfortable continuing there. She kept begging me to figure out a solution.
I picked up the phone and called Mrs. White. I had to find out if this was all true or just Ellen's perception. To my surprise Mrs. White corroborated Ellen's story. She couldn't handle the screaming. The screaming was just beyond her level of tolerance. When he was quietly playing and learning, that was perfectly okay with her. But there was so much unhappiness and crying and screaming and she couldn't take it. She was trying to work - she apparently did some office work in the house - and couldn't make a single phone call without all the screeching in the background.
So I took a deep breath, asked G-d for guidance, and put my faith in the kindness of humanity, especially the humanity of my community. I placed a free ad in the local circular reading as follows: "Looking for a basement free of charge for a child receiving therapy, Monday through Friday for 3 morning hours."
I received one phone call. One whole phone call. And that was all I needed.
The new basement was situated three short blocks away. It was perfect. It had a tremendous empty room, and a small guest room nearby which could be used as the "classroom" while Dovi could have 'free play' time in the large room. A staircase led up to the rest of the house but was closed by a door, so Dovi wouldn't be able to run into the house the way he did with Mrs. White. At first it seemed that the timing wouldn't work out, as there is an exercise class there three times a week between 10 and 11. But since we had the second room off the main room anyway, Dovi would be kept out of their way while the class was going on.
I was again humbled by the kindness of humanity, and especially of my neighborhood. A second basement, free of charge! Who would have thought?
The very next day I went with Ellen to move all the toys from Mrs. White's basement to the new basement. It was pouring, and the Whites had locked the gate, not anticipating that we would be coming - I had told them we were not coming back. I had to stick my hand through the gate and open the combination lock of the door, which gave me free room to unlock the gate from inside. I felt like a little burglar but didn't have much of a choice...
The new basement turned out to the be the best thing that could have happened to us. Dovi loved the spaciousness of it and the host family was so kind to us. Becca got us a $100 voucher from Headquarters to use for new toys, and I got Dovi some new electronic toys to supplement the ones that were boring him by now.
Things were finally beginning to look up.
There was one major hitch in the big move though.
About a week before the move, Naomi was back from her maternity leave and observing Dovi in the basement with Bessie. As usual, Bessie brought Dovi back from the basement. Dovi refused to walk and threw himself down on the sidewalk. Naomi was horrified. Ever the "yekke" whose first thought was fears of ligitation, safety concerns and who knows what, she immediately informed me that the therapists were not allowed to transport Dovi on the street. Ever. Even in a stroller.
From that day forward life became quite difficult. No longer could I simply take Dovi down the stairs to the therapists and have them brought back. I had to take him and pick him up myself - whether I was in the middle of baking a cake, cooking something, or talking on the phone. I had to drop everything and run.
Those of you who are used to doing this kind of thing - babysitters, playgroups, carpool - you're probably rolling your eyes at me. But trust me, for me this was a big change and something hard to get used to. In a society where everyone goes on schoolbuses or playgroup vans, having to do drop off and pickup myself twice a day was a major hassle. I felt like I was always on the run. Especially on Wednesdays - in the past, Ellen had brought Dovi to the grocery store on the way to the Center so I didnt have to interrupt my shopping to pick him up. Now that was all history.
So every morning I had to put on my shaitel (wig), coat, shoes, and drag Dovi down 3 flights of stairs, often against his will, struggle to strap him into the stroller, and runnnn with him 3 blocks to the basement. Of course, that was after packing a brunch and snacks and diaper and bottle. Then 2 or 3 hour later I once again had to abandon whatever project I was in the middle of and get dressed again and run back, then struggle with dragging him up the stairs again. on Tuesdays and Wednesdays I also had to leave the house again later and take him to EEC for OT. I found myself running in circles non stop.
On that first day in the new basement, I had a particularly trying day. Right after dragging all the toys over to the new basement in the rain I had to run and catch a cab to my eye doctor, where I got some disappointing news (which was later dismissed by a different eye doctor). From there I ran back to pick up Dovi, still in the rain, and struggled to get him up the stairs. After his speech therapist left, I asked her to make sure to lock the downstairs door since Dovi likes to play in the hallway outside my door. Five minutes later it was too quiet. I checked the outside hallway and... nope. No Dovi. And the front door was not locked, as I had reminded the therapist. My heart nearly escaped from my chest as I ran out on the street to look for him. My life and his life flashed before my eyes. Fortunately my instinct led me to the first place he was likely to be; Mrs. White's gate, trying to get into her house (to glide on her shiny floors). I thought my heart would fail me as I struggled to lift him and drag him back home; I had to get ready to take him to EEC for OT. He gave me the fight of my life; I raced back upstairs to get my shaitel and shoes on and rushed over to EEC with Dovi. As soon as Dovi was safely inside and in the midst of his session, I burst into tears. Lynn asked me, concerned, if something was wrong. Through hiccups I said to her that this is the first time since Dovi's diagnosis that I really felt I could not do it anymore. The constant running around, dragging Dovi up and down 3 flights of stairs, the constant whirlwind of appointments, decisions, meetings, researching, networking and managing emotionally - it was all taking a major toll on me and I felt depleted of my last vestige of energy.
I felt much better after that good cry. I also tried not to think about the reality of the situation: this was going to continue for a long, long time. It was not over anytime soon. The sheer, vast workload of arranging Dovi's care and education was not going to let up or get easier for a long time.
But there were some things I could do to make the situation easier.
Enter my really good friend Frieda, who had come to my rescue in the past, and was always a fountain of resources. She told me about a mutual acquaintance, Sandi, whose was a one-woman chesed powerhouse. Her main specialty? Arranging for transportation for children who went to therapy but didn't have a way to get there. I hesitated; I didn't want to take advantage of yet more generosity in my community. But Frieda convinced me that she did this all the time and I shouldn't hesitate to call her.
I knew Sandi from years earlier, when I was writing resumes as a side hobby/job. She and her sisters had all applied for Community Hab positions, and at that time a resume was required. They were an incredible family; one of those 'do-good' families who were always busy helping out special needs families and individuals. Sandi didn't know about Dovi's situation and was understandably devastated. She also sprang into action, devising a plan. She called up everyone she knew on the block of the new basement, looking for women who were available at pick up time. She found women available to bring Dovi back to me on Mondays, Thursdays and Fridays. Wednesday I would be doing pickup myself, since I was out shopping, and on Tuesday, I would be using the kind service of my friend Carrie.
Carrie was a former high school classmate of mine, who was my best friend for a year until we split up. She was also my neighbor for a few years until she moved. She had gotten divorced about four years earlier and I was one of the only friends she took into her confidence and vented to about all the garbage she was going through. I bumped into her in the grocery through sheer Divine Intervention - I hadnt seen her in months. When she asked me how I was, I poured my entire sob story out - and her immediate response was to ask how she could be of service. At the moment I hadn't needed any help - but now I did, and I called her on it. She graciously took the Tuesday slot for herself.
I was all set. I could handle morning drop off - but running out at 12:00 every day in the middle of my housework was too big of a dent in my day. Having such kindhearted volunteers bringing Dovi back home was a perfect solution.
Dovi continued working in the basement until the very last day of his E.I. session in late June. I am forever grateful to the kind, wonderful people of my community who made those final few months of home ABA manageable for us.
ETA: 7 years later I can say with hindsight that Dovi was going through some sensory difficulties at the time but we were helpless to figure it out or fix it. I was really lost and alone at the time - all I had was those few therapists who didn't know what was going on either, and I had no one to reach out to for guidance. Over the years as he went to more respite providers and saw more therapists/caregivers, we were often able to zero in on what was bothering him and fix it. I recognize now that there are certain times of year - most notably spring and early summer - when it would get a lot worse and all of us would be at a loss as to what on earth was bothering him. It was a very helpless feeling.
Can u comment who this atime friend was......screennameReplyDelete
Her screen name was HappyDuck.Delete
Thx...Baruch dayan haemes..ReplyDelete