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Thursday, November 22, 2012


Oy. I'm so tired. It's been a nutso week. I'll discuss the Ritalin later, or another time, but things were better today. But anyway, I left you hanging for so long about that life changing phone call by that mysterious Rose so I'll just pick up the thread of the narrative and write until my stamina peters out, which is how I've been operating until now.

But I have to backtrack and fill you in on a few little details prior to Rose's phone call.

So Dovi wasn't doing very well with the therapy, and neither was I. He had six different therapists: Hannah, Bessie, Debbie, Vivian, Malia, and Lynn. There was no communication between them, no one to coordinate what the goals were. (So much for Naomi making a condition for switching over to her agency for Service Coordination; Becca was doing a good job being my "social worker", but there was no coordinator for Dovi's actual goals.) Additionally, they all had different ideas and approaches and requests. Vivian wanted me to try to get a swing, Debbie asked if I could get a little table and chair so she culd work with him better, Malia wanted me to buy bubbles, I forget what Lynn wanted. They were also a little lost on how to work with Dovi since he wasn't responding much to the therapy. So I bought a cute little notebook, pasted a picture of Dovi on the cover and wrote "Dovi's Progress", and the therapists began communicating... sort of.

Monday Sept. 13Observed Dovi today. Just tried to build rapport. He cried a lot. Would love to know what you are working on and how you get his attention - Hannah 
Dovi enjoys social praise and movement (e.g. shaking arms back and forth) - Vivian
Tuesday Sept. 14 - Worked with Dovi on sitting in chair and appropriate play with toys. Dovi enjoys cause and effect toys. He is able to indicate choice of preferred object by reaching - Sarah
Worked today on response to name using physical prompts on face. Dovi enjoys cause and effect (i.e. pop up toy) with me as well. Also focused on ring stacker and nonverbal imitation of hand clapping. I give deep sensory input to arms and legs as a reinforcer as Dovi does not seem to respond to food (I even suggested spicy or sour to mom but Dovi's responses didn't increase). When I call his name I do it extra loudly and use strong pressure on chin and jaw to prompt him. He definitely responds better to this. By nonverbal imitation of hand clapping, I clap loudly and hard near his face a and physically prompt him in a stronger way as well. To my utter shock, after multiple tries, I turned to say something to Mom, Dovi physically lifted my hands and clapped them. - Debbie
Have been working on eye contact and touching head. Dovi made eye contact when placed musical toy in front of my nose. He touched his head MANY times following joint compressions and introducting new toy on my head and then his. He imitated clapping with tambourine toy. GOOD SESSION! - Lynn 
Sept. 15 - What a session! Dovi was so much fun to work with today, Sensory integration and very high motivation get Dovi to "work". I worked for eye contact and nonverbal imitation. He imitated me "clap" and "touch head." - Hannah
Sept. 20 - Worked on verbal imitation - 'ba' for bottle, 'ma' for food - Dovi responded beautifully, he was hungry so that helped. In the beginning of session responded to gross motor imitation - 'touch head, clap, do this'. Good eye contact, loved exciting noises, movement, short intervals in high chair then allowed to play freely for 2-3 minutes. Very productive session, Naomi and Hanna worked together. Dovi ran to his mom during breaks. - Naomi and Hannah 
Dovi pointed to nose of animals on pop up toy on command on a few occasions. Appeared otherwise tired. - Vivian 
Sept. 21 - Dovi is better at imitating "mamam" for "ham ham" but did not do "baba" for bottle. He also imitated "pop pop" a few times. Otherwise, he was tired and distractible and not so responsive to other goals. Responds well to joint compression and deep sensory input. - Debbie 
Oct. 14 - Dovi reached on his own for a book. He did turn some pages with cueing. Was not very attentive throughout th session. Usually tunes in with deep sensory input. - Debbie 
Nov. 1 - Hi, here are some of the goals that we are working on.
  • Basic non-verbal imitation
  • SImple matching
  • verbal imitation - yum or baa
  • manding/pointing
  • tracking
  • simple task completion
  • (some technical gibberish I'm not inclined to transcribe)

 Today, Dovi pointed independently to flashlight to indicate that he wanted it turned on. Also raised hands up to 'catch the ball' during turn taking activity. Pulled clinician's hands towards belly while lifted shirt to communicate that he wanted to be tickled. Good eye contact today, great session - Vivian

Nov. 2 - Dovi had a great session. Grabbed my hand to indicate that I should push the car, pointed (after some cueing) independently for desired objects, said 'hamham' for food. - Debbie 

The next entry in the notebook is already in July. Communication stopped - the reasons for which will become clear in the next post - and the individual therapists were on their 'own' for the rest of the year.

It's interesting to note that Dovi had - and still has - severe Sensory Processing Disorder. He was unable to focus or do the simplest of things and needed lots of deep pressure massages. Some of the things they were working on 2 years ago took him years to master; 'touch head' and 'imitate clapping' took a good 18 months to master, and it is still something they review with him often. (We actually get a kick out of making him do it at home, sort of 'showing off' the very few things he can do at age 4 1/2....)

I took Dovi for a hearing test, as per the speech therapists' request. I had taken him in May as part of the evaulation process. It was impossible. He didn't let the tester keep the little sensor in his ear for long enough to test the eardrum activity, and during the soundproof booth test he was startled by the dancing clowns and burst into tears and had such a tantrum,we had to stop the test right then and there and reschedule. I did another test in September at a different clinic with similar results. The audiologist could not get his attention; he was distracted and uninterested and just tried to escape. She finally told me to go to the NY Eye and Ear Infirmary and request a two-audiologist test, so that one of them could play with Dovi while the other one conducted the test.

After hearing sooooo much about gluten and dairy free diets and the supposed amazing results, I decided to first take the boys off dairy. (Chaim has an ongoing runny nose situation.) It was a disaster. Dovi lives on yogurt, pizza, cheese, farina, and chocolate milk bottles. I couldn't find substitutes for all of it. The almond milk caused horrible stomach upsets - go figure! He suddenly had diarrhea, which he didn't have on dairy! and he hated the almond puddings and soy yogurts. After a week or two of torture and hunger I put him right back on dairy and haven't attempted a major dietary change since then.

I also visited a Developmental Pediatrician, Dr. Alyson Gutman at the Brooklyn branch of North Shore LIJ Cohen Children's Medical Center. The trip was a big shlep, and Dovi ran all over the place, barefoot, of course. He couldn't even be tested normally as he wouldn't sit still for a minute. Dr. Gutman confirmed his diagnosis of PDD-NOS, which was a valuable piece of  medical proof which could be then used to obtain services such as SSI and Medicaid Waiver. It was just another "thing" that I had to take care of.

Then I received a phone call from the Educational Director of EEC, offering me a course - for a small fee - in Floor Time. He would evaluate Dovi and teach me how to implement Floor Time in my home. I was extremely excited - unfortunately, it never materialized. Thankfully, Dovi learned to socialize a different way, which will come up in later posts.

So, you ask, when am I coming back to that whole phone call with the mysterious Rose? Almost, my friends, be patient.

Dovi had started ABA on September 13. On October 25 - barely four weeks into the school year, half of which had been cancelled due to the High Holidays - Naomi let me know that Hannah had requested to be removed from the case. I was absolutely shocked. I adored Hannah and I thought we got along great. I was a little insulted. Was my house not clean enough? Did I talk too much? What was it?

When she came the next day to see Dovi - she wouldn't leave until a replacement had been found and trained in, of course - I asked her point blank what was going on. She told me she just didn't like working in a house. She loved the camaraderie at the Center, the whole give-and-take between the therapists, bouncing ideas off each other; she just didn't like the whole 'house' thing. I still think she was a little grossed out by the unfortunate fluctuations in cleanliness in my place - it was IMPOSSIBLE to have it museum-like spotless every single morning, especially with Hurricane Dovi around. Naomi's excuse for Hannah's quitting was the endless paperwork, rule changes, and wage slashing that Early Intervention kept doing. (It's funny how EI jobs used to be premium and no one wanted to work for CPSE. The situation has reversed now; therapists are leaving EI in droves because it doesn't pay financially and there are hardly any EI slots anyway, and now CPSE is saturated with therapists....)

In any case, I was disappointed and dismayed. Dovi had finally built a rapport with Hannah, and he would have to start from scratch with someone new?

I had no idea just how amazing things were about to get. Amazing, in a good way.

But the clock is about to strike midnight in the Midwest and I'm turning into a pumpkin. So yes, you'll have to wait another few days to hear about that mysterious phone call from a woman named Rose....

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