Screw that

Posted on August 9, 2015 by mommabear0208

Running to the Farmers Market with Mommy

Upon further reflection, I’m going to tell the PTs, OTs and the social worker at Lily’s preschool to stuff it.

My kid is NOT going to arrive at school every day (when she starts kindergarten next year) in her adaptive stroller. Don’t get me wrong, I’m not in denial that she should have one. But she does not need one for school.

#1 concern: They see her arrive in that and they’ll keep her in it. I’ve heard from numerous parents that this is a REAL issue. And even the Rett specialist agreed when I pressed her on the subject.

#2 concern: How will it make HER feel? I don’t want her to get used to being ushered around. I want her to feel as independent as possible. She’s a strong-willed kid. I want to continue fostering that.

So she might be slower than the average kid, and klutzier (which may or may not have to do with Rett Syndrome – if you know me, you know what a klutz I am), but she walks. And she walks well. And she will continue to do so.

Now I have to figure out how to get her to and from school every day. But I have a year to figure that out. Wish me luck.

Guess who chose these beauties out at the farmers market?

Guess who picked these beauties out at the farmers market?

A good week indeed

Posted on July 29, 2015 by mommabear0208

Lily came home from school today in such a great mood! Likely because today was the first day that she had a Tobii at school (which took a year of advocating). Using the Tobii, she told her teacher today that she loves her cousin and grandma and that she wants to go home and play with the nanny.

A good week indeed!!!! My kid has a voice at school. Finally!!!!!!!

Chiachiarone (kee-ach-ya-rone) = Sicilian for chatterbox

Posted on June 27, 2015 by mommabear0208

Lily has had a major breakthrough with her Tobii in the past few weeks. She’s communicating through it – telling us what she likes, wants, needs. And I can’t begin to explain how much it means to get a glimpse into this sweet, silly, smart girl’s mind.

Today she told me (after we got home from a birthday party):

We made a ‘card’ (for Stella, the birthday girl)
We gave a ‘present’ to Stella
We got a ‘present’ too (2 necklaces and a magic wand) and it made her ‘happy’
She said she wanted to ‘rest’ ‘tonight’ (after I asked if she wanted to go to the other birthday party)
She also told me she wanted ‘Grandma’ and Marina (her ‘cousin/sister’ – she now uses these two pictures interchangeably) to ‘take’ her to ‘school’

These things likely seem inane for a parent of a neuro-typical child. But to me, it’s magic. Being able to have a conversation with my supposedly nonverbal, potentially cognitively impaired child (according to typical Rett literature) is amazing.

Speaking of nonverbal… Lily has gotten really good at using the word ‘no’. As in, ‘give Grandma a kiss!’, asks Grandma. And then Lily gives an emphatic ‘No!’ Also she dropped the f-bomb yesterday. I must clean up my potty mouth ASAP.

Here Lily, wearing her fancy new necklaces, is asking to watch a ‘TV show’ ‘Elmo’. So Elmo it is!

Water Lily

Posted on June 25, 2015 by mommabear0208

Lily and I just got back from Cape Cod with Grandma and Marina (my 10 year old niece). We were so lucky to have them! They flew up from Florida to be with us.

While there, L was in her element. Running along the shoreline, relaxing on the sand, navigating us through the busy high street in Provincetown and just enjoying time with her family.

But she misses Grandma and Marina terribly. On her Tobii – every night since they’ve left – Lily keeps saying that she wants to talk to her sister. (Sister is a picture of a girl so she means Marina). Those two are soul sisters for sure.

Lily and I had such an amazing trip with such amazing ladies!!! We made a lifetimes worth of memories and I took way too many photos, as usual.

Grandma and her girls

Book time/cuddle time

Showing Grandma how to use the Tobii

Pulling Marina through P-Town

Yes/No

Posted on May 15, 2015 by mommabear0208

This kid keeps blowing me away!

Last week, I asked L if she wanted to come to the office with mommy and she moved her head up and down. I’d never seen her do that before so I asked her again as I was confused. Again, she moved her head up and down. It eventually set in that she was saying ‘yes!’! Holy cow.

And yesterday I was on the phone with one of L’s therapists at school and she told me that Lily not only loves numbers (which I already knew) but that she can identify them and put them in order. How did they figure this out? In her therapy sessions she has a numbers puzzle and Lily would get really upset any time the therapist would recommend starting with a number that wasn’t zero or one. Talk about another holy cow!

I am so very proud of this sweet, amazing, hard-working, beautiful, determined little girl. So very proud.