Friday, March 8, 2013

Post # 221

221st post, wow, I never thought I'd still be writing, but it is definitely my best therapy.

How to fill you in on the latest news?

Zoé is doing great, so that is essential.
The most worrisome part for me is about her fine motor skills, though. She definitely does not like anything that entails holding a pencil, coloring, cutting, pasting, tracing.
So we are going to establish a new system to try and motivate her to do more fine motor skill work: golden coins.
I know this might shock some of you, but we are going to "pay" her for doing chores (like cleaning her room, helping putting books away, brushing her teeth on her own, with supervision, etc.) and working her fine motor skills: one coin will equal 1 minute of screen time. Bribery is awful, but when Zoé saw the golden coins that arrived today, she was thrilled and immediately told me she wanted to draw. We are going to establish the rules with her, we will have a family pow-wow and decide together how we want this system to work. She will collect coins in a glass jar and she will decide when and how she can redeem them.
Her OT thought it was a good idea. Perhaps it will teach Zoé the value of "money" and how hard work "pays off"!
She loves being on the computer, playing games, spelling, etc. The one positive aspect of this is that at least she is in the computerized era, and that pretty soon, all will be done on the computer. Though I love cursive writing done by kids. For Zoé holding a pen is hard, coloring is hard, this is why she doesn't like it.
On Thursday mornings, we stay home before her Speech therapy at 10:30 am and we try to do arts and crafts, but I end up doing it all. She is quite impatient when it comes to painting, coloring, cutting, etc.
I will let you know how this system works.

As for me, I am my usual self, not wanting to dwell on the scary symptoms, on the extreme fatigue, on the feet that cannot walk as fast as they used to, on the hands that canon open bottles, but can still type ;-)

I have to let you know about the latest support group meeting I went to. It was a real eye-opener. I met a new couple that attended the meeting. A brother and his sister. It made me think of my own brother, who is also affected by MMD-Type 1, and how I might help him out one day.

The bond between these two people was amazing. She, motherly, letting him talk. Expression-less face, smile-less, crippled hands, and the sadness of remembering why I was there.

It was comforting though to be able to assuage him, to share ideas of support and to tell him how important his health is.
Yet, these meetings are hard, and painful reminders of how we all share the same journey, whether our symptoms are the same or not. Whether are hardships are lived differently.

I will put pictures on the next post. I don't have access to my photos as I am at the local coffee shop studying for my test tomorrow! back at school for my last 3 units.

Voila dear fellow bloggers, (readers or writers), till the next post I send love and warm hugs.


Anonymous said...

Hi Sarah,

When I read about Zoe having a hard time holding a pen and this may be why she does not have the patience to draw or do art projects, I thought of an invention of a client of Pieter's (sadly no longer with us), the Etch-a-Sketch.
Do you know about it? It is a simple toy and I am not sure if Zoe would find it interesting especially since computers do so much these days, but it is worth having a look.
Not sure if the knobs would be something Zoe would be be comfortable with.

I miss your Mom! Hopefully we can visit sometime this year.

Pieter and I send warm hugs to you, Zoe and David.

George Sachs said...


Bribery is paying someone BEFORE they do something. What you are doing is rewarding Zoe AFTER she does something. This is called positive reinforcement! :)One of the reasons I got to work everyday.