A different kind of learning

Posted on May 27, 2016 by mommabear0208

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.

Admiring her artwork – and her favorite ‘literary’ characters

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

These photos make me so happy

Posted on May 14, 2016 by mommabear0208

I love that Lily’s classmates want to help her, play with her, work with her. I said in my previous post that she causes a bit of a stir everywhere she goes, and school is no exception.

Walking down the halls, kids stop by to say hi to her. The teachers, therapists and aides all look forward to seeing this kids smile. She is such a ray of sunshine to all she meets.

Food

Posted on December 15, 2015 by mommabear0208

Here’s a note I received from L’s school speech therapist earlier today:

I just wanted to reach out to you and let you know that I offered to Lily some of my own gluten free vegan dark chocolate birthday cake here at school. I know she doesn’t eat gluten or dairy so I figured it would be a nice treat. She absolutely loved it and couldn’t stop giggling and reached out for more. The amount would be equivalent to 3 adult spoonful sizes. She very appropriately used her tobii during the activity. She let me know she was happy multiple times and said something new several times on her tobii to let me know it was different.

She had such a good time.

This kid has ALWAYS loved her food!

Understanding cognition in girls and women with Rett Syndrome

Posted on November 15, 2015 by mommabear0208

In my quest to find an answer for whether or not to do the neuropsych, I came across this recent article. Here is a relevant excerpt:

It is extremely difficult to evaluate the cognitive abilities of individuals with RTT as these are masked by their motor, apractic and atactic difficulties, which limit normative evaluation. On the other hand, many research projects have suggested that individuals with RTT are able to learn [18-21], and that the learning skills can be enhanced with appropriate motivational factors [18] as well as that learning is sustained after a ‘washout’ period of the learning program has ended [18]. It is also clear today that individuals with RTT can learn new skills [22,23], including literacy [20,21,24], and that learning ability is sustained in individuals with RTT at all ages.

The article is insightful in many levels and the premise is basically that girls and women with Rett Syndrome need intensive and constant therapy/intervention throughout their lifetime to maximize their quality of life.

I’ve seen the positive effects of intensive intervention firsthand. And there is now some data to demonstrate that Lily is progressing both motorically and cognitively. For example, her first progress report for the year has come in and it is the FIRST TIME that the teacher at school has indicated that Lily has made significant progress in a few areas. It is most definitely because she has a Tobii at school now, and that her teachers and therapists are committed to engaging with her through it.

List 6 adjectives to describe the child

Posted on November 13, 2015 by mommabear0208

So… this whole kindergarten process is quite the ordeal. It’s like applying to university. I have to fill out 10+ page application forms and write essays, as do Lily’s teachers. This is what Lily’s teacher wrote when asked to use six adjectives to describe her: