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Tuesday, March 12, 2013

The two craziest weeks of my life, Part 1

I apologize for the long lapse in posting. I started writing this post weeks ago, but then events happened which were larger than life, overwhelming and all encompassing and putting things like blogging on the back burner. I was ready to put this blog to bed for good. But thanks to the sweet, encouraging support from you, my faithful readers, I pulled out the half finished post and completed it for your reading "pleasure".


I'm about to detail two weeks, the two hardest, zaniest, unbelievable weeks in my life. (Note: that is, until the past month, which were emotionally infinitely harder.)  It starts on January 16 2012 and ends on January 29, 2012. You know how you can be so incredibly, insanely busy, that you can't imagine just one more thing cropping up on your to-do list? And then something even bigger happens, obliterating everything you're so busy with, forcing you to pay all your attentions and energies to the crisis at hand? (I just experienced something similar; my school choice crisis went on the total wayside with the unfortunate family tragedy we had.)

We absolutely hate when that happens. But sometimes it's necessary, to help change our perspectives and focus and realize what's really important in life and what's just trivial.

So on January 14, as previously mentioned, Dovi went to the Respite House for the first time. It was truly the 'refuah before the makkah', as I could not begin to imagine the craziness of the ensuing two weeks.

Monday January 16 was a legal holiday - MLK Jr Day. Dovi was off from school - again. I had a first cousin's wedding that night - again. Before that wedding, I dressed Dovi up to the nines and took him to his speech therapist's wedding, where he loved the music and ran up and down the shiny floor, enraptured. But even before that, I took him to a local neurologist, Dr. Walter Molofsky. I made the same mistake as many other parents of children who need ADHD meds. Instead of going to a big, reputable, experienced child psychiatrist, I took the easy route and went to Dr. Molofsky. He's a good doctor and he knows his stuff; I can't say Dr. Cartwright would have handled the case differently. However, Dr. Molofsky proved very difficult to reach after that and I felt very much abandoned. Anyway, due to Dovi's very young age, Dr. Molofsky prescribed the only calming med that can be administered this young: Catapres. Originally meant for Tourette's Syndrome, it's a drug that slows down the child's blood pressure and therefore slows down the manic running around. The biggest side effect is extreme drowsiness the first two weeks. My heart hurt at the idea of drugging my child simply so that he would be easier on his caregivers and to guarantee him entry into the Sunday Respite program. But what could I do? The appointment itself was a disaster; Dovi despises doctor's offices, and he escaped up two flights of back stairs right in the middle of the appointment. Taking Dovi to a doctor's appointment without someone accompanying me to assist me is Mission Impossible.

Note: I began writing this piece a few weeks ago, way before the tragic, horrific accident that took the lives of my cousin, her husband, and her unborn/prematurely born baby. That is the wedding of my cousin that I referred to in this post. Extremely sad.

Additional note: Dovi enjoyed his speech therapist's wedding so much, that I decided then and there to take him to my sister's wedding, which would take place six weeks later. Of course, only to the beginning part, to the pictures and reception, and send him to the lovely Estelle overnight afterwards. She was very receptive to the idea  - and it worked out very well in the end.

Tuesday January 17 I was occupied all day with researching sedation dentists. Dovi was once again having trouble with his teeth and I just couldn't handle going back to Broadway Childrens' Dental with him once more. I called Columbia Childrens' Hospital and Maimonides Dental and ultimately decided that a trip to Boro Park was easier than a trip to washington Heights (it didn't occur to me yet then to use the Ambulette Service). To complicat matters, Alice had apparently taken sick and wasn't in all week -they had found a sub for that day but didn't have anything for Wednesday or Thursday. I was livid; so was that how it was going to be until Ellen came back? Every time Alice would be out, it would be my problem to figure out what to do with Dovi? In the end they found a sub for Thursday, but TABAC asked me to take Dovi to the dentist on Wednesday morning; at least this way they didn't have to work to find a sub fo Wednesday morning. So that's what I was busy with all day basically.

Wednesday January 18 I shlepped with Dovi to Boro Park. (Again, in retrospect, I should have taken the ambulette...) I didn't accomplish much there; the dentist said he only had a very small cavity and they would not put him under for that. Oh well... I ate lunch with him at Amnon's (where he proceeded to touch all the food on display... boy was it tiring to keep him seated...) and I came back home, dropped him off at school, and later that night, despite my exhaustion, I attended the Kesher event where I heard the speech that changed my life.

Thursday January 19 was the first day I gave Dovi the Clonidine. I can't tell you how horrible I felt. Half an hour after giving him the medicine, he began to cry piteously. By the time he arrived to school, he was fast asleep, and he slept for two hours in school. When he woke up he was pretty cranky and very much not himself. When he came home in the evening after res hab, he was definitely calmer and more subdued, but he was a zombie. He didn't have his trademark Dovi spunk and charm. He didn't make eye contact with anyone and ate his food listlessly. He sat in the bathtub huddled in the corner, allowing the water to cascade down his back. I cried. Was this the price we had to pay to have Dovi's hyperactivity calmed down? I felt like I was drugging my child. It was absolutely horrible.

On Thursday night, my husband and Chaim left for their annual weekend trip to Kiryas Tosh, Canada. I was nervous about staying home alone all Shabbos with Dovi, but since he was on the new medication I knew he would be easier to handle.

But right before they left, Alice called me, with a bombshell - no, two - that threw me for a loop and left me reeling. Firstly, she wasn't coming in to work on Friday. JUST GREAT - on the day that my husband wouldn't even be home to help me. She had some kind of medical emergency and apologized profusely. When I expressed to her how frustrating it was for me to keep having Dovi at home every time there was an absence by a therapist, Alice suggested that maybe Dovi would be   better off in a school-type setting, where there were teachers and aides and subs aplenty, not a 'clinic' as she refers to TABAC.To say I was taken aback would be an understatement. What a bombshell!

I was left reeling just as my husband left. I spent the whole Thursday night pondering her words. Oh, how I needed Ellen - desperately. She had mentioned the same thing twice already - perhaps Dovi was better off at a place like Shema Koleinu. I was so confused, I ddn't know what to do with myself.

Friday January 20 I gave Dovi the Clonidine. Within half an hour he began to cry bitterly. I put him into his crib and he was soon out like a light. He slept for four whole hours - which is basically the time the medicine is active. After the meds wore off he was more or less his normal self. Now i realized why he had been cranky the day before - he needed to sleep off the medication's active phase. He had been left groggy and tired by sleeping for only 2 hours. But then what was the point of the medicine if during its active phase he was cranky and sleepy, and then it wore off? I was confused and disturbed.

The day passed peacefully, except for the mad-dash-scramble of the last hour before Shabbos when I had to do my husband's usual chores and keep Dovi out of trouble and get him bathed and myself showered. The usual Friday night volunteers came to keep Dovi company and I grabbed a much-needed nap. The Friday night meal took many hours as Dovi kept trying to bust out of the crib tent (this was still before he slept in a twin bed and was still trying desperately to escape his tent at every possible moment.) But we pushed through.

Shabbos January 21 was an absolute disaster. I gave Dovi his medicine, but it didn't seem to work. He was as wild and hyper and destructive as ever. (I think he either didn't swallow it, or because I had to split the pill before Shabbos, it wasn't as effective). I had let him out of his crib early, anticipating that the meds would kick in and he would then sleep for a few hours. Since he didn't, he spent the entire morning rampaging and destroying the house. By the time my parents came for the meal in the afternoon, the house was in shambles and I was in tears. Thankfully the darling Estelle took him out for a little afterwards so I could catch a nap and read a little. But it was an exhausting, difficult day. My husband has been going to Kiryas Tosh once a year for several years now, and I have the dilemma every year: I don't want to send Dovi to the Respite House, because then I'm lonely and feel childless. But him staying home and me taking care of him singlehandedly isn't easy either. It's a problem...

That night I tried to get some clarity on the bombshell Alice had thrown at me. I called up a dear friend who knows all the special ed schools well, and she listened to my dilemma. She did have an interesting idea for me: She floated the possibility of switching Dovi to Otsar. (NOTE: this is the first and only time so far that I am referring to an institution or person with the real name. My experience with Otsar was very pleasant and I highly recommend the school, therefore I don't mind if it's searchable or if readers gain something from knowing the real name.) I searched around and found a few acquaintances who actually send their kids there and decided to call them on Sunday to find out more.

Sunday January 22 was a hectic day as well. The day-after-Tosh is always harder than the Shabbos Tosh itself; my husband and Chaim arrive home in the wee hours of the morning, and Chaim sleeps off his 'jet lag' until midmorning, and then I have to take him to cheder, unpack everyone's suitcases and wash their laundry, etc. I was already exhausted from the past few days of so much happening. Dovi slept off his meds for 1 1/2 hours, and as a result he left the house later than usual on Sunday, resulting in a very off-schedule day. I spent most of the day researching Otsar and liked what I heard. They had 1 1/2 hours of ABA a day, lots of sensory therapy, and were a 6:1:1 class plus paras for each child as needed. I decided to call them and schedule an appointment to go see the place. But first...

Monday January 23 as soon as the kids were off on their buses I shlepped to Boro Park to buy underthings and shoes for my sister's wedding. Confession: I absolutely hate, hate, hate shopping. Hate it. I shop online, or in local stores. Having to shlep anywhere to shop is on my list of most hated things. It ranks down there along with taking Dovi to the dentist, getting a root canal, and, well anything unpleasant. But it was a necessary 'evil', and so I did it. I arrived home pretty much exhausted, wondering when I would catch a break and take even a minor rest. But there would still be miles to go til rest would come.

Tuesday January 24 was the Day of the Phone calls. Seriously. I made fourteen intertwined, time consuming, researchy calls and appointments. I had to call my insurance company about something or other, a little-boys-rental place to inquire about renting something for Dovi for my sister's wedding, Otsar to schedule a visit to see if Dovi fit their program, the local pediatric dentist, TABAC to find out how Dovi was handling his meds, and more and more. The following Monday, January 30, I had an apartment inspection scheduled - remember how I related before our big move that there was some complicated issue regarding our apartment? On Monday it was finally going to be resolved, and I needed to talk to relevant people to know what to expect at the inspection, plus hire a handyman to get some small things in the apartment fixed up to pass the inspection. In short - I was good and busy. The day ended with another whammy: Dovi's Res Hab, who usually took Chaim to OT every Tuesday, decided to go home by cab and therefore I had to take Chaim myself - but Dovi arrived home all dirty (a flourbomb had burst on his coat), and I had to dash upstairs to change Dovi, then drag Chaim and Dovi together to Chaim's OT. In short, I arrived home Tuesday night famished and ready to collapse. My husband brought home Dovi's rental outfit and we tried it on. Chaim accidentally dropped the new Toshiba tablet computer and the screen got a nice few cracks... In short, it was one of those crazy days. I was glad when it was over.  But the crazy times were just beginning...

Wednesday January 25 was going to be another insane day. In the morning, I was concerned that Chaim seemed to be limping and there was some swelling at the top of his legs. I asked him if anything hurt, but nothing did. Since I was going to pick him up later to get him shoes for the wedding, I decided to take a second look at it then. After the kids left on their buses, I began a long, errand-filled day. First I went to my weekly therapy appointment. Then I went to the dressmaker for a fitting, but she was taking her fancy time coming in to the store and I was getting antsy. I decided to pick up Chaim first to get him shoes and only later go back to the dressmaker. My fridge and pantry were empty and I hoped to go grocery shopping after that. On the way to pick up Chaim, I called a cousin of mine who had just completed a similar home inspection and was able to provide me with first hand information on how the process worked. I hung up the phone and went upstairs to pick up Chaim, not dreaming what awaited me at the other side of the door.

I was about to be tested to a limit I didn't know existed. I would be forced to tap into depths I didn't know I had, to harness resources and strength I didn't know I possessed.  

My crazy, impossible life was about to hit absolute rock bottom - a bottom I didn't know existed. I would spend four unforgettable days in suspended animation, feeling  the rawest of emotions I hadn't known before.

I would emerge from the newest crisis stronger, better, with another notch in my belt of struggles and triumphs. 

I hope it won't take too long to write Part 2. Please bear with me.


  1. oh gosh. i will not be able to sleep tonight.. looking forward to reading part 2!

    1. it's going to take me a while to write part 2 though :(. MY IEP meeting is tomorrow IYH and I have a drs appt on Thursday. So I dont know when I'll get around to it. Hmmm, maybe I should shlep along the laptop and write in the drs office and on the train???

    2. Please get to it before next Thursday, when I leave for Pesach and will be internet-less! Two weeks of biting my nails won't be good for anyone...

  2. Keeping us in suspense! I'm eagerly anticipating part 2!

  3. Did a year+ really pass since all this?? I remember it like it happened yesterday... How time flies- even when you're not having fun.


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