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.


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


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


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!