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Sunday, February 10, 2013

Special Needs Children Affect The Entire Family

I've been a blogger since I remember. I started keeping a diary at age 12 and basically never stopped. I had to delete some of my blogs between 2000 and 2005 due to stalking and other issues, and sadly miss those entries. I also lost a typed diary from 1997 to 1999 due to a floppy disk malfunction. other than that, my life is pretty much documented on livejournal and facebook. Sometimes, my candor has led me into trouble; other times, I got tremendous resources, support, and responses to my questions and issues. But the biggest value of blogging for me has been looking back at the archives. I am constantly rendered speechless by how difficult my life was. I am constantly grateful for the good in my life, for the help and respite resources in place to lift the burden somewhat - but of course, getting all these resources in place took a lot of research, hard work and takes constant maintenance.

In any event, looking back at winter of 2011/2012, things continued spiral downward. As the school year progressed, I found myself being squeezed and crushed beyond capacity, with the demands of the different therapists, combined with Dovi's relentless stimming, hyperactivity, escapes from his bed, and pressure from Chaim and my husband as the family struggled to cope with their lives revolving around Dovi's needs, limitations, and destructiveness.

Costume Discounters

 You may wonder how Chaim is affected by having a special needs brother. The answer is complex. Chaim has his own issues; remember he was a preemie, a spoiled long-awaited a child, and a kid who was almost classified as on the spectrum but narrowly missed it. He still has some ADHD-like symptoms, but he's a manageable child. He is brilliant, insightful, funny - and prone to temper tantrums and power struggles. Despite having a brother who consumes so much of my time, he's still very much an only child. He continued making demands of me, as if there wasn't another person taking up much of my time and brain space. He has a low frustration tolerance, so if I am on the phone with a therapist or doctor, he has no qualms interrupting me, and throwing things in anger if I motion to him that I cannot talk at the moment. In addition, whenever a Res hab shows up to drop off Dovi, he continues to plow on and need things from me at that moment, or even worse - will act like a total idiot in front of the girls, in essence asking for attention. It was very vexing. We're working on it; he goes for social skills therapy and has improved tremendously over the past year. But at the time of this narrative, he was really acting out. I was already depleted emotionally from dealing with the many requests and demands from Dovi's therapists, juggling his Res Hab schedule, trying to put into place resources to help lift the burdens, and Chaim was relentlessly squeezing me with his tantrums and power struggles. I was having a hard time managing it all.

At the same time, Dovi's sensory stimming was at an all time high. He had no idea how to occupy himself, had no attention span, and very little interest in toys. Unless he was watching an Uncle Moishy video, he was all over the place. He constantly raided the fridge and freezer - no matter how many safety locks we bought, he managed to rip them off - or the pantry. Anything that struck his fancy was fair game. The floor was constantly littered with a mixture of... well, everything. Frozen peas, ice cream, farina, flour, sugar, coffee - anything he could get his hands on and smear or pulverize or throw. The bigger the mess became, the more paralyzed I became and I just couldn't begin to clean it up - I certainly couldn't clean it up when Dovi was around. My husband would walk through the door after a long day at work and nearly blow a gasket. He couldn't understand why I couldn't control Dovi better - or for that matter, myself - for I usually gave in after a while and simply let Dovi go to town with all the foodstuffs, as I lost patience and energy to say 'no' and redirect his attention elsewhere. I'm not very good with setting and enforcing limits - on my kids, or even myself.  It's an ongoing issue I'm working on. Thankfully, Dovi is way better today - the Risperdal is working pretty well, and we have excellent locks on the cabinets and fridge, and he loves playing with toys. But last winter, it was absolute chaos.

We had very little help on Shabbos. In the summer, at least, we could go out in the backyard or the park. But on the cold winter Shabbosos, we were on our own with very few options of keeping Dovi entertained and out of the kitchen - and the day was really, really long. When my husband came home from shul, he would be very upset to find the kitchen and dining room an absolute disaster. Our Shabbos meals were strained, unhappy affairs. On Shabbos afternoon, I couldn't pay Chaim much attention as I was busy trying to keep Dovi out of trouble. On Shabbos Chanukah, Dovi somehow found a bottle of fish oil - fish oil that was supposed to help him with concentration - and he took off the cover and spilled it. The entire house reeked of fish oil. I wiped it all up with rags, tossed it into the washer and then the dryer - which was a colossal mistake. All the laundry I washed after that ended up stinking of fish oil. It took me a week of soaking all the laundry in lemon juice, vinegar, fabric softener, and baking soda, and washing the dryer frequently with the same solution, to get the smell out. I had to throw out some of the velvet and velour clothes as the smell just wouldn't leave. During the family Chanukah party, Dovi was climbing tables, grabbing food out of people's hands, and generally not letting me sit still for one minute. I was reduced to tears.

The final straw was when Zehava, the administrative director of TABAC, called me one evening for a frank talk. I was "too involved" and "driving the therapists crazy." I was stunned, shocked, and deeply insulted. The therapists were making me crazy! Everyone had different requests - send this, send that, his teeth are hurting, he was crying today, his socks are torn - and I was being asked to not be involved? I was also staying too long in the morning and disturbing sessions. Well - TABAC does not provide transportation, so naturally if I have to walk Dovi to school every morning I want to look into his room and talk to his therapists, no? I was extremely affronted and hurt. I told Zehava that we can't have it both ways - if the therapists want me to be less involved, they had to involve me less. I had to talk to Ellen for an hour on the phone every other day, and hear how poorly Dovi was doing, (she was even suggesting I transfer Dovi to a different program), but if I - G-d forbid - sent a text  to the therapists exulting in his latest accomplishment, or asking if Dovi needed anything for lunch - I was considered 'too involved'!

To pour salt on my wounds, I then found out that this complaint was coming from Ellen herself. Ellen! Devoted, loving Ellen was upset that I was too involved? Zehava told me that something seemed to be going on with Ellen; she was severely stressed, way more than usual. The previous week, Alice had taken off on Friday and I began panicking, not knowing how I would handle him at home all morning. The therapists had taken to calling me every time they were going to be out, informing me that there were no subs available - and it was happening very frequently. Then it would be my job to call Zehava and beg her to find a sub. Zehava didn't deal with Friday's subs, so I begged Ellen to do something for me. She had run around like a chicken without a head, begging anyone and everyone to sub for Alice, disrupting the school day.

I felt terrible.

We tried to institute a few changes to improve relations on both sides. Firstly, I promised to stop texting the therapist if it wasn't truly important. Secondly, the therapists would start writing religiously in the communication book - Ellen notoriously never wrote in the book, so I had to call her after hours to find out how Dovi had done that day. Third, Zehava would ask the therapists to stop calling me directly when they would be out, and she would try to find substitutes whenever possible. I explained to her very strongly how my day-to-day was severely impacted by the erratic schedules of the therapists. The main branch of TABAC was part of a Head Start program, and they had roving subs available in case of therapist's absences. But our local branch was totally a therapy clinic and not a school. But what was I to do? EEC did not offer ABA and they were my only choice. I couldn't have my life turned upside down every other day because a therapist was absent. They had to figure something out. And they promised they would.

I ran into Ellen a few days later and asked her, with hurt in my voice, about the whole debacle. Funnily enough, she said that it had not come from her, but it was directly Zahava and Sarah who felt I was too overinvolved, and it absolutely didn't bother her to get texts and phone calls fro me. Whatever the case was, I was glad the air was cleared. And just in time - because on December 26 Zehava informed me that Ellen was taking a temporarily medical leave. Apparently whatever medical condition had bugged her the previous winter and summer was back again (although as I would later learn, it was something entirely different, but it doesn't make a difference really), and she needed a few weeks off - she wasn't sure how much time. She had a few substitutes lined up and she hoped it would be only temporary.

I was absolutely devastated. Ellen cared for Dovi like a mother. She changed his diapers, made sure he had enough food, and smothered him with hugs and kisses. Alice was cold and unfeeling, and the third therapist was a male. There would be a huge void in my life, and in Dovi's. I texted Ellen that I wished her all the best and she responded gratefully. Then I realized I had another big problem on my hands: Ellen had offered to take Dovi overnight during my sister's wedding in late February. Would she be back by then?

The first few weeks of Ellen's absence was absolutely horrible. Dovi had no stability; subs came and went, different therapists were tried out, and his fate hung in limbo. He came home every day with sopping wet diapers; no matter how many times I begged and wrote and called and texted that for the love of G-d, can his diaper please be changed daily - it just didn't happen. Dovi didn't make any progress during that time of inconsistency. Then, when Zehava realized that Ellen was out for the long haul, she finally put Alice as Dovi's lead therapist. Which meant that she saw him every single morning, five days a week, for two and a half hours. Which also meant that every time she was absent, so was Dovi. And for some reason, all of a sudden, it was very often. And suddenly, Alice's demands, ideas, insights and requests became simply unbearable.

I was being squeezed into a vise with no room to turn. The noose was tightening around my neck and I couldn't breathe. I was on the verge of collapse. Something had to give.

And something did, in the guise of three angels from Heaven. Three different angels, who came into my life at the right time to ease me off the precipice and back onto dry land, if only temporarily.

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