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Friday, February 8, 2013

Wintertime and the Livin' Ain't Easy Either

Every year for the past few years since Dovi's diagnosis, when Succos ends and the long winter sets in, I started getting anxious. Anxious for the winter to pass with the minimum of drama and heartache. For some reason, the winter months are full of drama and stress. If I think about it, so are the summer months. And the spring months. And the fall months. Bottom line, life with Dovi is stressful. Life as a special needs parent is stressful. One's entire life revolves around that one child. Whether it's the schooling, the respite, the medical needs, or just getting through the day / evening / weekend with the special needs child, while not neglecting the rest of the family - and oneself - is a juggling act that puts Ringling Brothers to shame. But unfortunately, most of the balls do get dropped. And inevitably some of the crash. And break.

Boruch HaShem, at this point in time, my family gets so much help that there is almost no help left to even offer us. I will, over the next few posts, talk about all the different kinds of help we are getting which makes life with a hyperactive, destructive, (DELICIOUS) autistic child livable.

But at the point we're at in the story - early winter of 2011 - I had very little help. Yes, we had Res Hab and we were extremely grateful. But that was basically all we had. We were on our own for Shabbos - Dovi wasn't yet registered for the Weekend Respite program*. Nor did we yet have our Shabbos volunteers*. On Sunday, he didn't attend the Sunday Respite program* yet. In the evenings after the Res Hab dropped him off, I had no help* for the rest of the evening; it was my husband and my job to keep him and the house together. The hardest of all though was the lack of transportation to and from therapy*.

* These are all amazing programs we are fortunate to be recipients of, all of which I will talk about in upcoming posts.

Those of you living in areas where there is no bus service, and you do carpool, probably are rolling your eyes at making a big deal over taking Dovi to and from therapy every day. Especially now, with the school bus strike in NY, many of you are probably busy shuttling your kids to school and back every day (and you will admit it is not easy). I found it incredibly difficult - almost unbearably so - for several reasons; chiefly being that Chaim's cheder bus was at the exact same time as Dovi's start of the school day. I found it extremely hard to have both boys ready at the same time - while still getting myself ready to leave the house. This meant putting on my shaitel, a last minute bathroom run, and locating my shoes. Then I had to pull on my coat, put the coats on both kids, send Chaim to the bathroom again, find his recess snack, and then coax Dovi to come with us. 90% of the time, he had gotten himself dirty while I was getting myself ready to leave. So we would end up rushing down the stairs helter skelter, and my heart would break as I left Chaim to wait for his bus with this friends while I ran off with Dovi to the ABA center. I hated the fact that I could not stand around and shmooze with the other mothers at the school bus. I hated the pressure of having to drop off Dovi on time. I hated the really early hour; what 3 year old was in school by 9 a.m.? No one I knew. I would hang around the school for a good half hour after dropping him off, talking to the therapists and directors. By the time I came back home, it was after 9:30 and I had just lost a big chunk of my morning - not to mention my energy. And of course, I would arrive home to an absolute disaster of a house; the big mess Dovi had created while I was packing up his food and preparing his clothes, and feeding him. So you might ask, why I didnt prepare it all the night before? Dont' ask. ADHD. I just couldn't focus on tomorrow's food at 10 p.m.

Harder still was the afternoon pickup. I had to drop whatever I was doing, pull on my shaitel, shoes and coat on again and run to get Dovi from school. I often arrived back home at 3:50 pm to find an irate Chaim crying at the door, as that was precisely when his bus arrived. It was really hard.

I called up HILF, an organization that helps provide volunteers to take kids to therapy. They were able to come up with one volunteer: my upstairs neighbor, who is also my first cousin, who had been taking Dovi to EEC the year prior to OT. She came once a week at 8:55 am to take Dovi to TABAC. sometimes she even came twice a week. It was an absolute lifesaver. But it was only a drop in the bucket. The drop offs and pickups were really draining me, and adding greatly to my growing resentment. I hated always being in a rush! I wanted to be 'relaxed' like the other bus moms; not always running helter skelter with my wig a mess and my tights bunched around my ankles.

Another major frustration was Dovi's lack of progress at TABAC. The therapists were puzzled why he was not moving forward. The first few weeks he cried a lot; all Ellen did with him was walk up and down the hallways to teach him to walk nicely while holding hands and not bolting. It finally worked; pretty soon Dovi was able to take daily walks outdoors - his absolute favorite school activity - without meltdowns or running away. Alice, one of his other therapists, showed me what she does; every few feet she gives Dovi a high five or a hug plus a compliment for 'nice walking'. We were able to carry that over at home, and Dovi indeed does 'nice walking' with very minimal fuss, thank G-d.

Besides his lack of progress, I was dealing with a lot of therapist-related stress. I kept up a very close relationship with Ellen, who was Dovi's lead therapist for the year. I spoke to her almost daily, sometimes for an hour at a time. Ellen continued her trend of being an over-sharer; I knew every little thing Dovi had done that day, his moods and negatives and very little positive feedback. These phone calls inevitably left me very stressed and worried. Even though Ellen loves Dovi, and she  was extremely devoted to him, making sure he had enough food, that his diaper was changed, and so forth, she was very pessimistic about Dovi's future and his chances at turning into anything, and I felt very down after our daily phone calls.

Alice was very different. She was positive about Dovi's potential - but she and I, to this day, don't really get along. She and I are the exact polar opposites in personality. She's a total type "A", and had a million different requests from me. She wanted me to take Dovi for vision testing, hearing testing, and an EEG to rule out seizures. WHAT? What seizures? My knees became weak and my mind raced as I began to contemplate what was involved in researching three different doctors and taking Dovi to all these appointments. We were deep in the throes of dental work with him, and he was beginning to hate me. On Veteran's Day and Thanksgiving when he was off from school and I took him to the park and to a few stores, he began to scream and cry when we went into the store and I realized why; to him I had become the bogeyman who takes him to doctors and dentists and tortures him. I was not his fun mom who did fun things with him, but the lady who made him go through dental fillings and extractions and blood tests. I was not happy with the sour turn of our relationship.

Although Dovi was now basically in a full time program, the center kept me too involved and on my toes. Whenever a therapist was absent for whatever reason, I had to scramble to figure out what to do with Dovi - take him in late, pick him up early, beg them to find a substitute so I didnt have to take him out in the middle of the day. I complained bitterly about it and the standard response was, "We're not a school. we're a therapy center. We dont have substitutes. It's the mother's responsibility to find alternative arrangements if a therapist can't make it." Dovi was one of only three children in the entire program who did not also attend a mainstream school. One of the other 2 kids wasn't as difficult as Dovi - she isn't hyperactive - and the other one has an extremely dedicated Res Hab worker who is a teacher at a nearby school. So i was the only mother in the whole program who was stuck when there was an absence. So if it wasn't enough that I was busy juggling the Res Hab schedule and changes and absences there, I was also 'responsible' for any changes in his therapy schedule. It was absolutely ridiculous.

Dovi's needs were keeping me way busier than a three-year-old should. I just couldn't handle it. And this was already with him attending a full time program and having Res Hab after hours!!!

It was crazy.

There we go again - I mentioned Res Hab again. While Dovi was basically settled with the incredible Nina and Rebecca - and there was very little interruption or change in their set dates - after about two months I realized that both of them were getting a little frayed around the edges. Both of them seemed reluctant to give up their Sunday afternoons, and three times a week - which they each had every second week - was a little bit much to take care of Dovi. It took me a while to learn that Dovi's caregivers do get burnt out if they have him too often (what should I say then? ha!) and I had to have a bigger roster of girls working with Dovi.

So I advertised yet again. This time I was smart... I set up a Google Voice number and clearly stated in the message what the job was about. I only got about ten phone calls. Two of them sounded like good candidates; then I returned another phone call and was floored at the conversation. Once again, I had hit paydirt, a perfect Res Hab candidate. Absolutely perfect. So perfect, in fact, that of course she lived on the opposite side of town. :-(

Suzy had worked for a year as a Direct Care worker at the local group home for disabled girls. She had also been hired to do Son-Rise with a girl who attended TABAC. She had worked at the Sunday program at the Clinic, and had done Res Hab previously with a now-11 year old boy with autism (whose mother I knew pretty well). She had a great deal of experience, patience, and compassion. So perfect! Whey did she have to live on the other side of town?


Just as I was breaking my head with indecision, Marilyn the indefatigable Res Hab coordinator (I know she is reading this, Hiiii Marilyn! Like the fake name I gave you? heeee) floated another name, a girl who had applied straight at her agency for a res hab position. The girl came over, but I could see immediately that it was a poor match. She didn't seem to really understand what autism was all about and she tried to talk to Dovi. The first time she took him was the last; she didn't feel it was something she could handle. So we were back to square one. I told Marilyn how amazing Suzy sounded, but where would she go with Dovi? It was deep into winter; I didn't think it was fair to make her walk 20 minutes to her house, spend an hour with him, and then walk 20 minutes to my house - and back. Marilyn sat down to think and after a short conference with my good friend Pearl, who runs the after-school program at the Clinic (that Dovi is not eligible for yet as it starts at age 5), she came up with a wonderful suggestion: Since Suzy had worked at the after-school program previously and knew all the ins and outs of the place, she was welcome to come with Dovi and utilize the indoor facilities during the winter. As a matter of fact, now that it was getting really cold, even Nina and Rebecca were welcome to use the facilities after 5 pm when the kids of the program left. Suzy had special permission to come at 3:00 since she was an employee there and knew hte ins and outs of the place.

Can you say "HEAVEN SENT" three times fast?

Suzy is a preschool teacher, and the school is a 7 minute walk away from TABAC. Suzy would pick up Dovi at 3:05 pm on Tuesdays and took him to the Clinic until 5:30. This solved the therapy pickup problem on Tuesdays. (On Thurdays, Carrie continued kindly picking up him up until Rebecca picked him up from her house at 4:30; thus I only had to do pickup for Dovi on Mondays & Wednesdays and every second Friday - my husband was off from work every second Friday - thus relieving the rushing around burden somewhat). She knew how to handle Dovi's behaviors better than anyone else. She was amazing to talk to and often hung around the house once she dropped off Dovi. She also came every second Sundy; she soon started working at the clinic again on Sundays as working with Dovi ignited in her a will to work with the special population again. As soon as she was done with the bus route from the Clinic, she would ask to be let off at the house of whichever of my former classmates was watching Dovi at that time, thus giving me a longer strech on Sundays as well. It was working out perfectly. A few weeks later when she realized that at her return time on Tuesdays - 5:30 - I was busy rushing Chaim off to OT (a very kind neighbor would take him, more on that later), she offered to walk Chaim to OT herself since it was on her way home. What a wonderful girl!

Sadly, like all Res Hab girls, she only lasted until the end of the school year. In June, all three girls informed me that they would not continue this year; Nina got a teaching job, Rebecca's sister was getting married and her help was needed at home, and Suzy was simply burnt out. When I came back from the Catskills this past September, the burden of finding new girls fell on me once again. I'm telling you - it's a full time job. But as always, HaShem sends me amazing girls, and right now Dovi has four different girls doing Res Hab. But I digress. Back to last winter....

So, you may wonder, what ended up happening with the vision, hearing, EEG, etc? I determined after a few phone calls that there are no pediatric opthalmologists who take straight medicaid, that Dovi likely hears very well, and that I would make an appointment to see a neurologist at some point to think about doing an EEG. Then I ran into Rose and the devoted Res Hab of the girl I mentioned earlier in the post. When I told them of the stress that Alice was putting me through, they rolled their eyes . Both of them told me that this was very typical of Alice; she was wonderful with the difficult kids like Dovi - she was very strict, no-nonsense, put her own emotions (if she had any!) aside, and got the kids to do her bidding - but at the same time she drove the parents crazy with her requests and observations. As I would learn over the course of her time with Dovi, she absolutely did not understand what living with an autistic child was really like. She spent two hours three times a week with him, during which time her focus was solely on him. She didn't have to take care of her family, man phone calls, serve breakfast / dinner, talk to the Res Hab girls etc. while with him; of course she could hold his hand tight and enforce good behavior. Let her try taking him home for one Shabbos, and then we'll talk....

So all of this calmed down and I didn't let it get to me. But this would continue being Alice's modus operandi all the time. Every day I got home beautifully penned missives in the communication book, detailing everything Dovi had done that day - the good and the bad - but also every detail of her assumptions on his behavior, and many of the comments were cutting. There were comments on his state of dress, cleanliness, any bruises or cuts that he had which I didn't even see - it was driving me crazy. It took very hard work not to let all of it get to me, since she was fantastic with Dovi and was the only therapist really accomplishing anything with him.

There were some good moments too; don't think I was sitting around moping and tearing my hair out all day. On the middle days of Succos our family was invited to a "Siblings Chol Hamoed Celebration" which included music, a moonwalk, a petting zoo, and refreshements. We went and had a wonderful time and met many special needs families for the first time. Marlene from the boar of ed was there! I was able to introduce her to Dovi and we had a blast. A few weeks later I attended the second support brunch  where I made some new connections - but I also came out of there very disenhearted. Once again, many of the mothers had older kids and they were cycnical and burnt out; they downplayed my enthusiasm and had a 'been-there-done-that it-gets-much-harder' attitude. The chief topic of discussion was the struggle to find  permanent placement and the freeze on building new group homes. The knowledge that I was just wasting my time and life putting so much effort into Dovi when he will never really amount to anything and he will just get worse, was frightening and off-putting. When I mentioned all this to the therapists the next morning at drop off, one of the therapists casually whispered to me that many of the other boys had seizure disorders which was hindering their progress. That was true; as far as I could tell, Dovi didn't have any obvious seizures.

But why was he not making a stitch of progress??? He was such a bright child. He knew exactly where the nosh cabinet was and how to open it and fling everything about. He knew how to get exactly what he wanted and he recognized his caregivers and house - he was not a dummy. Why were none of the interventions doing anything?

It was heartbreaking.

I can't say it wasn't doing anything. Dovi was learning to sit nicely in his chair and eat. He was walking on the street without meltdowns. His transitioning tantrums at school decreased significantly. But the 'big breakthrough' just wasn't happening.

Then I came across a video clip that was so astonishing, it changed my life. Correction: It didn't change my life. I thought it would - but it didn't. What was that video clip? You'll have to wait for the next post to find out.

To be continued....


The purpose of this blog, besides the therapeutic aspect of sharing what it's *really* like to parent an autistic child, and to provide others with resources and ideas, is to raise money to fund Dovi's education, which is nearly 6 figures (plus lawyer's fees). Unfortunately I have not received any donations in the past month. Below is the donate button; use it!!! If you'd rather send me a check than use your bank account/credit card, drop me an email. May you be repaid from Heaven!!!

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