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.

Lily needs time to be Lily

Posted on May 14, 2016 by mommabear0208

Almost daily, that phrase pops into my head – Lily needs time to be Lily. Her very first ABA therapist, Ann, said this when Lily was only 18 months old and it struck me – even then. This kid spends most of her days working – trying to do things that you and I take for granted. Like picking up a fork and putting it to your mouth, walking a straight line, talking. And you know what? Sometimes all the work has to just stop. Lily needs time to do the things she wants. So every day, I try to give her that opportunity. This evening, I took her out to dinner to celebrate the end of a busy week. She chose the restaurant. And then afterwards, she chose where we walked and what we did. Tonight we crashed a jazz concert. Who knew this kid liked jazz??? She won the hearts of everyone in the crowd, including the musicians. She has a way with people. So what else does this kid like to do?

Making friends with fellow diners, and trying to get some of their food
Cuddling up to cute guys with iPads
Running down the street while listening to her favorite tunes
Practicing stair-climbing
Admiring every shiny car wheel she sees
Looking at flowers in bloom
Sometimes wanting to hold my hand
Sometimes giving me cuddles and kisses
Giggling
Yelling
Tummy patting
Wading through puddles
Looking up at the trees
Smiling
Dancing

Watching her – completely content in activities of her choosing – makes me so very happy. Sometimes I feel like the luckiest mommy in the world.

Earlier today, excited about the school dance she was about to attend!

Outrun Rett

Posted on April 30, 2016 by mommabear0208

One of my Rett momma friends is organizing a charity run this coming weekend that Lily and I will be participating in. I’ve been so busy that the event has just crept up upon me and I’ve had no time to help promote, or to fundraise. Until now!

For those of you in the New York area, consider joining us. For those of you afar, consider donating. All proceeds go to Rett Syndrome Research Trust. And every single dollar raised moves us closer (and faster) to a cure.

Lily and I will be run/walking this 5k, and I’ll have the stroller as a back-up. I dream of the day that we will be able to go for runs and hikes without any equipment needed.

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The Beauty of Technology

Posted on April 30, 2016 by mommabear0208

A friend posted the below link on his Facebook page yesterday. I began to open the link knowing that I was opening myself up to an avalanche of self-pity and ‘what-if’s’. So I closed it down. But the title of the article, well, it stayed with me. I woke up this morning and had to add my take to his somewhat smug post (which, by the way, I totally get and likely would have posted similarly had I not found myself in my unique parenting situation).

Here is the link: ‘Stunning photo series shows what it’s like to grow up without technology’.

Here’s my comment:

Just reading the title of this article fills me with a level of jealousy I never knew existed. I have two iPhones, two IPads, a tablet and a $20,000 eye gaze device that I rely on to not only speak to, but also educate and comfort my child with Rett Syndrome. And because of this technology, my 5 year old nonverbal child told me (through technology) last night that she wanted a jacket because she was cold. I don’t think anyone could truly understand how amazing that moment was – to hear her express her basic needs – unless they have to live through it. Not all technology is bad and not everyone can follow the ‘ideal life’.

I dream of the day when Rett Syndrome will no longer be our reality.