Thursday, August 20, 2015


 Compensating: I am not going to define the word, you can look it up in the dictionary or on wikipedia.

Yesterday was the highlight of my year so far, after spending 2 hours with a developmental pediatrician who just "got it". She managed to understand what our life has been all about and how much loss we have been facing, the beauty of having Zoé in our life and her reality. How Zoé navigates her world in a way that none of us can come close to understanding.
How she has had to become malleable, pliable to fit in a school, in a world that is so different from the world her peers live in.

Yet, she has known no other way.

But nothing fazes her. I have said it countless times. What do I know, actually? Maybe she does suffer from social anxiety, maybe she frets about not being able to swing on the monkey bars like her classmates, maybe she wishes she could draw and write and read as fast as her friends.
And maybe not.

What I know is that Zoé has mastered the compensating skills like none other.

"I am in clinic" you are disrupting my play when I come into her room while she cares for her stuffed animals, stethoscope in hand.

What does she know about clinic, oh let me tell you, that is a word part of her lexicon, her jargon. Should a 7 year-year old need such a word? Well, Zoé has gone to numerous "clinics" where you see a plethora of specialists, where you are the center of attention, where doctors probe you and touch you, and poke you. So when she does the same to her stuffies, that is her way to compensate, that is her way to diffuse the woundedness, to make normal what should not be normal. Maybe I am being too wordy, you'll have to excuse me, but I am still elated by yesterday's meeting with Doctor Amazing (Will keep her anonymity, not sure she wants to be featured in the blog.)

Old Post I forgot to publish...

2nd Grade: here we come.

Another year, another description, another addendum to the file, another testament of how far we've come and how far we've got to go as well.
Here is the painting in words of our Lil Miss Zoé for her new second grade teachers.

Zoé Berman:

Zoé is a fun-loving girl with a wild imagination. She loves to pretend play and we sometimes have to channel that imagination.
She is bilingual in French and English and loves to sing and perform.
Zoé was diagnosed with Myotonic Muscular Dystrophy (Steinert, Type 1) at birth. Her diagnosis means that she has a multi-systemic disease that involves gradual atrophy of her muscles (Heart, hands, neck, feet, trunk, etc.)
Due to her disability, she can get tired and lack stamina. Sitting for a long period of time gets really tiresome and therefore it compromises attention span and her staying focused.
We would like to make sure that we take into account energy preservation and perhaps allow some short breaks to enable her to regroup and stay on task.
Zoé is very comfortable with adults less so with her peers, perhaps this being due to her facial configuration and low facial muscle tone. Her speech is compromised and therefore it is not very clear. We would really like the social aspect to be taken into account. Making sure that all social activities such as lunch and recess take place outdoor as opposed to room 20.
As far as classroom accommodations, we would like for Zoé to use a stadium chair (we will provide one) during rug time instruction. We also have a slanted board that can be helpful. Making sure Zoé can sit in front of the teacher to read cues would also be helpful.
All in all, we look forward to this year in 2nd grade for Zoé to thrive and blossom. We would love to see her become an avid reader and for her to make new friends.
As far as services go (OT, Speech, PT), if possible, we'd like for them to be as less disruptive as possible, of course taking account the class' schedule and other arrangements.
We thank you in advance for your care and dedication.

Let's not forget to mention the glorious summer we spent in France and Italy, with a short trip through the Swiss Alps. Reminding Zoé along the way, that she was in Heidi's homeland.
We enjoyed the company of wonderful friends, family and newfound friends (Lorenzo and Francesco, in Italy). Seeing old friends 15 years down the road, as if no time had elapsed, picking up where we had left off. It was just wonderful seeing Morena and Massimo in their gorgeous house surrounded by the most beautiful mountains of northern Italy.
A short getaway to Venice was the highlight of David's summer.
Annecy by the lake with the cousins was wonderful: paddle boats, water slides and make-believe.
Deolen was our haven of rest and relaxation.
We got back a week ago, got over jet lag and we've already started OT, Kumon, and a first appointment to Shriners Hospital. Never a dull moment.
Wishing you a blissful start to the school year.
From our side of the screen to yours.