March 2019

Okay, a teenager has moved in. Wanting her own space, slamming doors and giving sly looks. A teenager who can now make her choices clearer so when she had had enough of her fantastic weekly school visits to main stream she just said no. It was clear she didn’t want to leave her own class or activities for fear of missing out. So we went with her choice. An element was also the shame of her mother turning up and taking her from school, again age appropriate.

This year we also looked at her real interests a bit more than the ‘throw her into everything’ approach I may have been going with. So now gymnastics has changed to the most wonderful Glee club for music and dancing. Again with her striving to be with her peer groups who are in a moderate educational setting and club setting. We have had hiccups with tremors but we are managing that now and she can understand how to shake out her hands to release spasm.

We are heading to age 13 and as our diagnosis came age 2 I look back now and have absolutely no idea how we survived 10 years. I suspect it was with the support of very positive teachers, carers, support staff, volunteer clubs who have given her every opportunity to try things. For things that don’t work there was always a work around and I am very appreciative of the willingness of folk to try anything.

Holidays this year I am feeling less confident to book but we will see.

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