A different kind of learning

Lily continues to impress both her home-based and school-based teachers and therapists (all 15 of them). This kid is super smart and silly, and most days she’s doing amazing things with communicating on the Tobii. Just the other day she had a conversation with her home teacher Denise to tell her that she was ‘angry’ and ‘greedy’ at school because she couldn’t play with the computer when she wanted to. And Denise explained that Lily can’t always get what she wants when she wants.

Oh, the perils of being an only child, raised in a single-parent home and having special needs on top of it. Creating boundaries and holding to them, reminding her that yelling is not nice, that sharing is important; I’m doing the best I can. But sometimes I’m not sure it’s enough.

She continues to be (mostly) sweet and loving and loud. I’m pretty sure that most parents of 5 year olds question their parenting skills and are driven mad by the noise and the insubordination. This brings me a strange sort of comfort. Makes me feel almost ‘normal’.

But I digress. Learning. It’s different for girls with Rett Syndrome. Some days this kid is on fire – engaged, communicative and creative. But there are those other days, the days when she didn’t get enough sleep or something else Rett related is going on, that she really struggles. I’m grateful that she, and I, have such a great support system who understands her ups and downs and are so creative in their approach.

image

Admiring her artwork – and her favorite ‘literary’ characters

image

Snapshot of her play/therapy room (PS someone got her first big-girl tooth!)

Advertisements

One thought on “A different kind of learning

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s