Tonight is the first night of Chanukah. As we lit the Chanukah candles, my thoughts were with Dovi. It has taken close to a year of work to push the guilt feelings aside and actually enjoy the moment. This night was filled with memories of a year ago, Dovi's last Chanukah at home with us. We had just received the news that Dovi was accepted at the residential school, and he would be moving out in approximately six weeks. Our emotions over Chanukah were mixed, to put it mildly. I think I spent the next six weeks with a perpetual lump in my throat.
I think today was a very appropriate day to sit down and reflect on that pivotal day when I moved into a new phase of my life - June 13, 2013, the day that Residential Placement inched its way slowly from the back burner to the middle burner.
Before I begin, I want to thank the devoted readers of this blog who have hung in until now. I apologize for taking such long stretches between writing chapters of this long-drawn out story. Between struggling to keep up with my Ebay/Poshmark "business," dealing with real life issues, and bracing myself for delving into the dark time that was 4 1/2 years ago, it takes a lot out of me to write these entries. So thank you for cooperation.
In any case, here's the pinnacle, the climax, the apex, what have you, of all the events leading up to the catclysmic moment when the world around me changed, forever. The moment when the niggling thought of 'one day we'll have to place Dovi but not yet' came into very sharp focus. It would take another 3 1/2 years until he would actually leave home, but it was the defining moment when I realized that it was a definite reality.
The weeks leading up to the summer of 2013 were extremely difficult, to put it mildly. I was dealing with the effects of a third trimester of pregnancy at age almost-37. Everything hurt, and I had no energy. I was constantly busy with an overwhelming amount of research and advocacy and paperwork and scheduling caregivers. All kinds of crazy incidents happened then, such as the blow-up with Leticia, worrying about finding places for Dovi when I went into labor, getting his camp stuff set up, and most difficult of all - handling his newfound obsession for ripping paper.
The underlying reason for the vast majority of Dovi's destructive behavior has always been intense sensory seeking. Whether it's ripping open endless oatmeal packets, jumping in and out of the bathtub, spilling water and liquids, smearing ice cream on walls - it's all to get sensory input he desperately craves. Sometimes I was successful in redirecting his need for sensory input, after endless brainstorming and shopping and trial and error. Most of the time, I wasn't. Then Dovi discovered ripping paper. Apparently he was taught how to rip paper during Occupational Therapy at TABAC, and it delighted him to no end. Suddenly, no sheet of paper in any shape or form was ever safe. We had to hide all forms of paperwork, magazines, newspapers, and books. Fortunately I don't have any daughters whose homework would inevitably have gotten destroyed. But magazines were a big casualty. It was difficult to remember every single second of the day to hide all papers in the house. When I realized that this meshigoss wasn't going away anytime soon, I started supplying him with all manner of scrap paper to go to town with - old newspapers, a package of construction paper, ad booklets. We had our own built-in paper shredder. All that left the house blanketed in paper - it looked like Ground Zero. Leticia did not approve, of course.
We tried to redirect him. But it was of no use. He was drawn to paper like moths to a flame. Then his com-hab girl introduced him to playfoam, which was an excellent sensory tool - but it left tiny stick pieces of foam attached to everything - clothing, shoes, walls, in the dryer. The level of messiness in the house started ramping up to levels it hadn't been before.
(Below are stills from a pretty funny video where Dovi is ripping up a newspaper and then watching with delight as it floats down like confetti. It would take a while for me to realize that this was his way of getting visual input.)
Then suddenly, out of the blue, like a violent wave crashing the sides of the rickety vessel barely keeping afloat, my carefully assembled network of caregivers and respite programs started falling apart. I would learn later that this tended to happen every single year at the end of the school year. Caregivers were burnt out and wanted out; programs assessed their list of participants and tried to weed out the more difficult cases; and as I learned the hard way, Dovi's sensory situation always seems to escalate in June, for reasons I just can't explain. Maybe it's the barometric pressure changes, or the ways the stars align - who knows.
The bottom line was, that the bottom underneath me simply opened up and left me falling down, flailing my arms desperately.
First to bail was Toby, the com-hab lady to whom Dovi went straight after school twice a week. I had noticed a few weeks earlier that she was pregnant, and apparently she'd had some dizzy spells and her doctor told her to be on bedrest. I felt terrible to think that someone who was highly pregnant had to do the same job I was finding so difficult in my own pregnant state. At the same time I started panicking -- it would be impossible to find someone new, available at those hours, with enough experience to handle Dovi, for 1 1/2 months. Thankfully, the situation resolved itself within a few days and Toby continued taking Dovi until the very day he left for summer camp. (Toby and I remain friendly to this day. Her child is indeed the same age as my Levi, and we often exchange text messages about how the kids are doing.)
Just a week later, Estelle's mother called me late one Saturday night, around 11 pm (Estelle was Dovi's Sunday program counselor.) with a long story about how she needed Estelle's help the next day for a fundraising event she was hosting. To say I was taken aback was an understatement. I asked her mother in shock, how she could do this to me. I was 8 months pregnant, incapable of staying home with Dovi all day on Sunday - it wasn't even safe. There was no way I could find a substitute at that late hour! If it was a legitimate excuse I could understand - but for a charity fundraiser? She had known about that fundraiser weeks in advance. I asked if Estelle's sister could fill in for her, as she had done in the past. No, said her mother, her sister's help was needed to. I was flummoxed and desperate. After a few quick texts to possible fill-ins, Toby agreed to take Dovi from noon until Cerie the com-hab girl would take her usual slot, and Estelle would do a shortened day - from 10 am to noon. I was still very upset about it - I didn' think it was responsible of Estelle's mom to yank her from her very important job for her own reasons. On Sunday night I was stunned to discover that Estelle was engaged!! Her beshow - her engagement 'date' - took place on Sunday afternoon, which is why she needed to take the day off. Whether she had right to do so is up for debate, and I'm sure some of you readers will slam me for even thinking I had a right to be upset. This incident illustrates how desperate and helpless and dependent I was on qualified caregivers to take care of Dovi. I simply did not have the energy. And a constant, reliable roster of people available at the snap of a finger to fill in, was exhausting to maintain.
A couple of days later, things escalated further. I remember the scene clearly. It was one day before the holiday of Shvuos. I was standing in my hot kitchen, mixing cheesecakes, cooking roasts and side dishes and desserts. I was racing against the clock, but felt good that time was on my side. As usual, Dovi was scheduled to go to Cerie's house from school via ambulette at 3:30, and Cerie would bring him home at 6:00. At 1:30 p.m. the phone rang. It was Alice, Dovi's impossible-to-please therapist, informing me that she was leaving early that day - at 2:30 instead of 3:30, as she also had to cook for the holiday. I couldn't believe it. This was messing up my day completely. I would have to run over to pick up Dovi from TABAC at 2:15, find some way to occupy him for an hour, and then find a way for him to get over to Cerie's house -- how, I did not know. By then, I would be depleted, the house would be in shambles, and there would be no food for the holiday. I was shocked that Alice simply had carte blanche to do whatever she wanted with her schedule, without caring how it impacted the families of the kids. I started panicking. There was no way I could have all the cooking done by 2:15! I called my sister in a panic, asking her which items I should cut out of the menu. She had a much better idea: unbeknowst to me, the high school girls only had half a day of school that day! Hoping against hope, I called Cerie on her cell phone - and she actually answered! When I told her about the bind I was in, she gladly offered to pick Dovi up from TABAC and take him for an extra hour. I was weak in the knees. Talk about a crisis averted. The mental strain all these 'sudden changes in plans' and the quick scramble to find coverage so that my schedule wouldn't be totally upended, took a toll. Just rewriting and reliving incidents like this is giving me heart palpitations. The whole setup at TABAC took months off my life; not having rotating substitutes like other centers do, but instead operating it as an hour-by-hour therapy clinic, leaving the mothers of the kids to fill in the gaps, was incredibly stressful. Thankfully, I wouldn't have to deal with that once Dovi started a school program.
I had barely recovered from that stressful hour, when I was sucker-punched in the stomach once again - and this time it took me longer to start breathing again. That same day, the director of the Sunday program called. Apparently, Estelle was having a very hard time managing him. She agreed to do it until the end of the school year, but... since Dovi was a client at The Clinic for Medicaid Services Coordination, and they had their own Sunday / legal holiday respite program for kids over age 5, perhaps he would do better in that program starting in August, since he's turning five in July.
The world around me began spinning, and I started hyperventilating. This could not be happening. No, no, no. The Clinic had made it clear that they were not the right place for Dovi. They would never take him. They did not have a 1:1 ratio or even a 1:3 ratio. They did not take difficult autistic children. That's why the Sunday Respite Program had been my lifesaver - because they were an autism program. If they kicked him out, he had nowhere else to go.
Mrs. Director - who happened to be my 2nd cousin - tried to explain. Dovi tended to elope. By law, they were not allowed to lock the doors - the kids had to have free rein to move around. (Which is a ridiculous rule that makes zero sense. I don't understand how kids who are a safety risk and a flight risk have to have free rein to run out of buildings and G-d forbid get lost or hurt or even killed.) The male director of the program - himself a father of two special needs children - didn't feel they could take the responsibility of him getting lost or hurt. Since he was getting his com-hab services from The Clinic, they would have to find a way to accommodate him.
To be honest, I felt very hurt and betrayed by Estelle, who had started out being such a good friend, and a real angel who always seemed to have time for Dovi. Unfortunately, that always seemed to happen to me; incredible people would swoop into my life, fall in love with Dovi, give them their all, and suddenly get burned out within a few months. Estelle, on the other hand, argued that she had never told the Director that she didn't want to have Dovi anymore and it was all the Director's perception. After I cried and pleaded with the Director that she could not abandon me to the wolves, she said she would think it over. The thing is, she explained, she was leaving the program after that school year, and the new director taking over was kinda afraid of Dovi. I explained to her how The Clinic is even less suited to Dovi's needs, and with a newborn baby, having Dovi home all day on Sunday was simply not an option. Creating my own program of rotating workers had proven futile in the past. It was too overwhelming for me to undertake. The autism sunday program was there for a reason - to provide respite to families. How could they just toss out a kid because he was too 'hard'?
Unfortunately this was a new reality that would slap me in the face time and time again. Every year - sometimes a few times a year - another program Dovi was part of would apologetically inform me that they were incapable of handling his needs and ask me to find something else for him. It's almost laughable. Dovi was a small 5 year old boy whose only 'crime' was being extremely active. I would think to myself, if these young 19 year old girls cannot handle Dovi for a few hours once a week, how do they think his 40-year-old mother with other kids and obligations does this every single day of the year? Indeed, the most oft-heard refrain over the years was, "I don't know how you do this." Honestly - I don't know either how I did it. I truly don't. It's a miracle I didn't crack up completely.
Once I was able to contain my hysteria and explain to my cousin-Director that Dovi had nowhere else to be on Sundays and I didn't have the ability to coordinate a program for him myself, she said she would think it over. She would spend the summer advertising and looking for the perfect match of a counselor for Dovi who would be his 1:1, and hopefully that would work out better. I hung up the phone shakily, realizing again that this would be the story of my life for the next number of years, until Dovi would eventually end up in residential placement.
(By the way, when that year was up, Estelle and I kind of lost touch. I attended her wedding, with Dovi no less, but the feeling of hurt and betrayal continued festering. About 2 years ago we sporadically began talking again, and the air was cleared. Estelle assured me that it had never been personal; it was simply too much for her to continue working with Dovi, and there were no hard feelings. We are good friends today.)
At my next therapy session at The Clinic, I went upstairs to talk to Marilyn, my Medicaid Services coordinator, about the situation with the Sunday Program. She clucked her teeth sympathetically and told me very apologetically that The Clinic wasn't equipped to handle Dovi - which I expected. We started exploring different possible programs - Otsar ran one, as did Ohel. Marilyn filled out the application and faxed it, and we were still hopeful that Dovi's old program would still keep him. I was very down about the situation and cried bitter tears. "How can it be," I asked Marilyn, "that such a delicious, lovable boy as Dovi, who has never hurt a fly and is afflicted with a condition he has not asked for, should be tossed around like a ball? Nobody wants my delicious little boy. It makes me so sad." There were tears in Marilyn's eyes as well and she wished she could fix this - but knew that she couldn't.
(Yes, I can already see the lynch mob with pitchforks coming at me in the comments section, yelling at me that it appears like *I* didn't want my own little boy either. I'm going to head off the comments right now. Dovi was very much loved and cherished at home. That does not diminish the level of difficulty in caring for him on a daily basis. Having a program on Sunday was crucial. Keeping Dovi safely and constructively occupied for hours on end is exhausting. Every one of Dovi's caregivers - be it teachers, paras, therapists, com hab girls, counselors, volunteers, even my very unflappable husband - would start tiring at the 2 hour mark, and by the 3 hour mark would be positively worn out. Dovi himself needed a change of venue every couple of hours. Therefore there needed to be a rotating cast of people to handle him on one given day. It was very understandable why Estelle had difficulty being with Dovi for 5 hours every week. So now try to picture a very pregnant mom with little energy, with other responsibilities to handle as well. Or, fast forward a few months later, with a newborn baby whose schedule is unpredictable and whose safety is paramount. Dovi needed a structured program on days off from school. Being confined to his house all day would drive him crazy, and it wasn't safe for me to be in charge of a newborn baby and a one-on-one high-needs child like Dovi. This does not mean he wasn't very much loved and cherished. It just meant that I needed help. Any comments that will be made to insinuate that I didn't want to take care of Dovi either, will not be helpful and will also be untrue.)
The next day, The Early Childhood Center hosted an evening support event, with its speaker being Rabbi Reisman. Rabbi Reisman is a parent of four special needs children, who are now adults. He did not specify what they have, but it sounded like a cross between high-functioning autism and general developmental disability. He told over a few cute stories involving his children, and his humor put a smile on my face despite the pain and stress I was feeling. Soon the tone of his talk changed. He began speaking about the necessity to consider residential placement if the family is affected by the behavior or overwhelming needs of the special needs individual. My heart started racing. I squirmed uncomfortably. This was exactly not what I wanted to hear right now. I wanted to hear that keeping a special needs child home as long as possible was paramount. Of course Rabbi Reisman can talk this way, I thought bitterly. His children had left home as adults, and they were living in a frum place. As a matter of fact, the true story goes like this: When Rabbi Reisman moved to a new, larger home, he donated his old house to to one of the organizations that runs supportive living apartments. His own house became the group home for his four children. They remained living in their old, comfortable environment; and they needed minimal help, since they were largely independent adults who simply needed a supportive living environment out of their own home. Dovi's situation was extremely different - he was all of five years old, there were no Jewish options for him, and I refused to consider alternate options at the moment.
But his talk left me with food for thought. Uncomfortable, unpalatable food.
When I arrived home I shared the content of the speech with my sister. To my absolute horror, she agreed with Rabbi Reisman.
"Look," she said, as diplomatically as she could. "I'm all for offering you emotional support. But you have been complaining non stop for the past couple of months how impossibly difficult your life is, and how unmanageable the situation with Dovi is, etc. etc.... I'm not gonna go as far as to say that I'm getting tired of your complaints - because I could never put myself in your shoes; what you're going through is every bit as hard as you're describing. But... you're not doing anything to help yourself. You have two options here: Either accept the fact that Dovi is the axis of your life, and every single aspect of your life for the rest of time as we can see it, will be dependent on what Dovi is doing at the time; or the second option, which will undoubtedly hard for you to face: to seriously consider placing Dovi in a facility. Continuing in this status quo - ripping yourself to shreds to keep your family afloat, and then griping about it because it's too much for you - is draining, on yourself and on your loved ones. Something's gotta give! Either you accept that this is your reality and not kvetch about it so much, or fix the situation."
I was stunned.
My sister is a wonderful and brilliant person who, to be honest, totally should be a life coach. She has this knack of analyzing a situation into simplicity and reframing it in ways that boggle your mind. What she said made every bit of sense. But I could not and would not accept it. I was horrified. I was not placing Dovi in a facility anytime soon! The other option - complaining less - would be difficult to implement, but I could try!
That evening, Mrs. Director called me back again. She apologized profusely up and down, but the plan was a bust. Dovi could not be accommodated for September 2013 at the Sunday Respite Program. She felt very bad about it - but the decision was final.
I began spiraling downward fast again. I was drowning and gasping for air.
There was only one person who could make this right for me - Linda, my amazing therapist. She would surely take my side, and give me tools to cope with the maelstrom swirling around me.
At my session on June 13, Linda surprised me by taking my sister's side. What?! There was no end to the betrayals!
Linda did not tell me to jump up and get rid of Dovi that afternoon. She encouraged me to start exploring the field. To spend the next year researching; find out what facilities there are, which ones are better than others, what the process entailed. Just an information search - so that when I felt fully ready, I would know how to proceed. The final decision lay with me; no one would forcefully wrest Dovi from my arms. Being highly pregnant also meant I was highly emotional, and this was not the time to make any weighty decisions. In any event, Dovi would be going to summer camp in 2 1/2 weeks; I would find out that summer what it felt like to be away from Dovi on a long-term basis, and I could explore the effects his absence had on me, my marriage, and my other kid(s).
What she said made sense, though it was very discombobulating. There was a queasy feeling in the pit of my stomach. It felt like the beginning of The End.
I had to rush out of the Clinic since my oldest niece's 8th grade graduation was going on at the time and I had already missed half of it - I really wanted to get there in time for her solo. (Currently, at the time of this writing, she is engaged to be married! mazel tov!) But I made a detour upstairs at Marilyn and Jenna's office to sign some paperwork. I told Marilyn, shaking my head, that I was going through a maelstrom of emotions due to the added pressure from all sides to start looking into placing Dovi. I shared with her my extreme hesitation; I knew there were no residences to be had for little boys, and I didn't feel ready to look into residential schools. Whenever that topic came up, all I could think of was a little boy from the community who had gone to live in a residential school out of state at age five. I don't know if I ever mentioned him on this blog and I'm too lazy to check back posts; stop me if I already did. If there ever was another child in the community who was exactly like Dovi, it was this little boy - whom I'll call Ted. He was equally delicious as he was endlessly hyper. Jumping onto the dining room table and swinging the chandelier was a normal thing for him; the youngest of a large family, shredding his older sisters' homework was an everyday event. His mother is from the 'previous generation' - she was nearly old enough to be my mother -- and in those days, com hab, respite, and acceptance/normalization of autism, were not in vogue. Ted's mom could not handle his existence at all, and once he aged out of preschool, she jumped through incredible hoops to get him placed. Although I'm sure he was loved and cared for very much (he has made incredible progress and today as a young adult he is very much a productive member of his society), the image of a helpless five year old child living a plane ride away, without anyone familiar to comfort him when he cried at night, still creates a golf-ball sized lump in my throat. Dovi was not going to be the next Ted. His time with his family could not end just yet!
Marilyn sympathized with my dilemma. "You know something?" she said, picking up the phone. "I happen to know that the Women's League Baby Home has a vacancy right now. I'm going to put a good word in for you." And she began dialing.
"NO!" I cried out in panic. "Don't call them! I'm not ready!"
"Don't worry," she soothed. "Making a phone call doesn't mean he's going anywhere anytime soon. At least let them hear about Dovi. I doubt they'll take him; the Babies' Home is for medically challenged children, and they can't have someone as active as Dovi around. But it doesn't hurt to call."
But just the sight of Marilyn calling a children's home to inquire about the availability of a bed was causing a hysterical reaction inside me. I burst into tears, begging her to hang up the phone.
Meanwhile in the other room, Jenna got on the phone to call Jennifer, the director of the OPWDD. "I'm here with Mrs. K . It's a desperate case. Their son is very difficult; it's an emergency; we need to find him a bed somewhere - " I almost lunged at her, begging her to hang up the phone. The last thing I needed was for Jennifer to get alarmed and sic Social Services on me. "Don't make it out to be so bad!' I mouthed through my tears. "I don't want to place Dovi yet! I'm only exploring the idea!"
I was just completely incoherent at that point. It was all too much. A simple fact-finding therapy session with Linda had morphed into an instant campaign to start the placement ball rolling, and I did not want that right now. My MSC team was trying to help me - but I was not ready.
I was incredibly late for my niece's graduation performance. I dashed out of the Clinic through a blinding haze of tears. So this is it? This is what my life is going to be here from now on? Fighting the tides, the pressure exerted by well-meaning, helpful people who want the best for Dovi and for me, without realizing there is so much more beneath the surface? Was this my new fight? Silencing the pro-placement voices? Battling my heart against my brain? The war could kill me.
I arrived at the graduation ballroom, to the swell of beautiful, moving music, perfectly appropriate for the rite of passage of a teenage girl. That was exactly what I did not need at that moment - or maybe I did. It was hard to hold back the tears, because I looked ridiculous - my face was puffy and blotchy from all the crying I had done at the Clinic and on the way to the graduation. The emotion-filled singing from the innocent, fresh-faced 14-year old girls on the stage did not help. I was a blubbering mess. I texted an explanation and apology to my mother and my sister, that I would speak to them later about my unusual bout of mourning and sobbing.
Of course, eventually I calmed down, and tried to examine the situation logically. Reflecting later on my visceral reaction on June 13, I know that it was completely normal. On that pivotal day I entered a new phase in the journey across the stormy seas. Almost a year earlier, when my husband had first raised the idea of Dovi living elsewhere, I unknowingly jumpstarted the mourning process, a new Five Stages of Grief. On that day I firmly hit the denial button. No, my brain screamed, Dovi is not going to leave home at a young age. It's not happening! The next 11 months as I continued struggling to make life with Dovi liveable, I continued the firm denial. On June 13, when all road signs pivoted in unison, pointing at the long, bumpy road leading to Placement, I moved on to Anger. All those tears and angst were a form of anger; a deep seated feeling of upset that this is actually going to happen, even if not overnight. The next few years, until we actually began the process that resulted in Dovi's current placement, were chock-full of Bargaining. I was ready to do anything to keep Dovi home. And I did a whole, whole lot.
It is now 9:20 pm, and I have been writing this post since roughly 11:30 a.m. It has taken a LOT out of me to revisit that gut-wrenching day. But there is a huge sense of relief. This was one of the hardest posts I had to write thus far. Next, I will discuss how I dealt with the fallout of June 13, and fill in the blanks of the days leading up to Dovi's first long-term foray away from home - the incredible summer camp that would host him for four amazing summers. I'm letting you know now, thought, that it will be weeks, perhaps even months, before my next blog post. Life will be pretty busy now, between Chanukah, a nephew's wedding, and a months-long home-organizing project I would like to start soon. Maybe sign up for email updates so you know when a new post is up.
Meantime, have a wonderful, amazing Chanukah - and as always, I leave you with this hidden 'egg' if you will - a recent photo of our yummy boy!
Love you, Dovi-boy. Happy Chanukah to you. I can't wait to see you again in 2 weeks, IY"H.
And when the night wind starts to sing a lonesome lullaby
It helps to think we're sleeping underneath the same big sky....
P.S. Full disclosure: After I finished writing this, I cried.