Saturday, March 12, 2016

No easy feat.

It has been a few hard months, adjusting to the demands of 2nd grade, the lack of social emotional component in the school curriculum, the fact that every recess at school is spent alone in the library and the lack of empathy kids show.  I hurt at drop off and pick up. I hurt when no play dates are offered, or reciprocated, I hurt and I try to not show Zoé.

I have been thinking about what I wrote a couple of years ago when I first started this blog...How Zoé's disability and mine made me a better person, and in fact, I think I was misguided. I am not a better person, I am a different person. Different in every way, ready to conquer all challenges, ready to advocate for my child, ready to not let go of the fact that we all deserve a chance. It has been so hard to drop Zoé off at a school where she is misread and misunderstood.

I have explained to the teachers how her body impacts her every day life,  how her muscles weaken, how her lack of focus and attention stem from this fatigue, how Zoé can do great things if she is given the time to think, if you break down the tasks, if you shorten the exercise, if you give her a chance! If you use the "reset button",  a strategy that has been working at home, when Zoé loses control and feels overwhelmed, we pause, take a breather, massage the weakened body, run twice to the fireplace across the living room and start again.

Teachers find it hard to adjust to such demands. I get it. You have 23 kids in your class, you cannot provide your attention to one kid.  But when that specific kid has an aid, you can use the aid for other classmates and as a teacher you can focus 3 minutes to the child that is having a tough time understanding the math exercise..

I have been teaching in preschool for the past 6 months where some of my students are difficult, with sensory issues or anger management. I try to use the reset, I try all I can to help these kids. I have no aid, but there are ways you can help.
Anyway, I am a bit angered at the system, and wish parents could instill empathy and acceptance in their children.
Life is hard, and tough and it is no easy feat to keep the chin up.
Hope this finds you well wherever you are.

3 comments:

Darcy Leech said...

Hi Sarah! Are we friends on Facebook? From My Mother, the true story of my family's experiences with myotonic muscular dystrophy, releases March 29th. As a fellow blogger in the community, I was wondering if you might be interested in reading and reviewing the book or in posting a press release to help me reach families like ours. You can email me at dleech@live.com or contact me with this form: http://darcyleech.com/contact/

I'd love to hear from you!

Richard Weston said...

Hi Sarah,

I did not see a email for you. There is now a potential treatment for DM.

http://myotonicdystrophy.com/http:/mytonicdystrophy.com/common-antibiotic-might-help-treat-myotonic-dystrophy-type-1-promising-therapy/

You might want to discuss with your health professional.

Richard

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