Silently Suffering

It has taken me days, endless hours of thought and allot of my energy to think of how to start out in the journey of blogging. I decided today to start with what is happening in our lives this minute. The one thing you can’t see on the outside when you look at us as a family. That’s the thing with Aspergers (a high
functioning form of autism), you can’t see it. It’s not tangible. It’s not something you can see or feel from the outside. It’s all inside. Inside my beautiful daughter Mischa.

Mischa was diagnosed with Aspergers when she was just 5 years old. In the beginning Mischa was dealing sensory sensitivity, compulsive behaviours and some social struggles. She didn’t look different from any other of her kindergarten friends, she generally was a very well behaved little girl but I knew in my heart that she wasn’t the same inside.

Since Mischas diagnosis I have taken the proactive approach as opposed to the reactive approach. Sometimes I wonder if that is why she is doing so well at holding it together during school hours. Mischa has learned many coping mechanisms, as have I. I know that there are certain clothes that she won’t even look at so I avoid them when I shop for her. She knows that there are certain things and people that trigger her and that is why she avoids them. Since we have learned to better cope her behaviour has changed it has improved for the better, but, inside she still suffers.

Grade 4 started out really well. The first week of September was our best school start up. No tears, no meltdowns, no heartache. I thought it was too good to be true. Turns out I was right. It was way too good to be true. Mischa had the assistance of an Educational Assistant from the time of her diagnosis but grade 4 was different and Mischa figured that out really quick. This year due to Mischa and her good behaviour she is being offered no support at school. She has gone from grade 3- 3/4 time support to absolutely no support at all. At school it appears she is holding it together, granted she isn’t able to get much work done, none at grade level, but she is holding her emotions in check. Once 4 o’clock rolls around and it’s time for her to leave daycare she is exhausted. Tired from the day of trying to be who people expect her to be, tired from the relationship struggles she has on a daily basis with friends and tired from trying to do work, work that she is trying to do single handily with very little to no help and only in class break times. Due to her lack of support and outward good behaviour Mischa isn’t offered a movement room or sensory room break.

Mischa has spent the last week of school nights just before bed crying. Crying as she realizes she is different, crying as she feels she can’t do the work being provided to her, crying as she isn’t getting support. Every night she asks me when her EA will show up.

So now I have the fight of my life ahead of me. Often as Aspie parents do, we fight for our children. Fight for supports to be put into place, fight for them to be understood, fight for people to see their amazing potential. Tomorrow I have a phone conversation planned with her school principal, I have already met with the teachers and the learning resource teacher with no avail for support. I’m making notes and preparing my words carefully so I get my point across.

As I see the fight ahead of me I came across some AUmazing words today. “Aspergers is discovered, not diagnosed, just like talented musicians, friends, talents and other characteristics are discovered”.

Tomorrow I face the challenge of making the school embrace my daughters AUmazing potential.

Wish me luck

Kyla

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3 thoughts on “Silently Suffering

  1. Wow Kyla, that written so well. I felt your heartache and pain. Wishing you luck tomorrow and sending you a virtual hug.I have a friend who has gone through this as well, I intend on sharing this with her.

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  2. Keep pushing… don”t burn bridges…knowledge is power…sensory intergration is key…find an O T that understands sensory intergration(I can help with that).Bring as many advocates to her case conference as you can (I E P).Be her educators best friend…allow her down time…accept her for whom she is… maturation helps…BREATHE!

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