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.

Visiting mommy at work

‘High Five!’

Posted on April 28, 2015 by mommabear0208

She did it again.

Last night when I got home (it was after Lily had gone to sleep) the nanny told me that Lily did a few really amazing things when she got home from school.

1. Shamekia (her nanny) was reading her ‘Brown Bear’ and using the Tobii/PODD to communicate with Lily when reading to her. When it got to the page ‘I see the children looking at me’, Shamekia said, ‘I see the….’ and Lily finished her sentence by pointing correctly on her Tobii to a photo of children! Unprompted.

2. The other thing Shamekia does is ask Lily for a ‘high five’ after they read a page in the book. Well, last night Shamekia mistakenly said ‘Say high five’ instead of ‘Give me high five’. Well my supposedly nonverbal child called out – clear as day – ‘High Five!’ She’s just so literal.

Shamekia is usually unflappable. But she told me that she even teared up when Lily spoke to her!

Spring Break!

Posted on April 22, 2015 by mommabear0208

Our tans are fading but our memories are still strong! Lily and I had the best time in Puerto Rico. She was the perfect resort mate – her goal for the week was to laugh and relax as much as possible. Going for long walks on the beach, lounging by the water, making friends and flirting with boys… This girl was in her element.

I’ve said this before and I’ll say it again – Lily is a social butterfly. I most definitely am not. But I’m so grateful for this sweet butterfly – we met some wonderful people on our vacation – because of Lily. We were treated like royalty – because of Lily. We even got offered a free dinner by a handsome guy – because of Lily!!!

I can’t wait to plan our next beach getaway!!!

A different kind of report card

Posted on March 31, 2015 by mommabear0208

I just received Lily’s progress report from her amazing after-school therapist Elaine, who is a speech language pathologist and Tobii/PODD expert. Here are a few exerpts from the report:

Lily is a very sweet four-year-old girl who is learning to use an alternative means of communication due to her severe motor planning challenges.
Lily is not able to use speech or her hands as a functional means of communication.
Lily is using a high tech communication device (Tobii I-12 series device + eye gaze access) and a low tech communication book with partner assisted access (PODD communication books).
Lily is starting to develop her underlying communication skills (i.e. joint attention skills, alternating attention skills, eye contact, imitation skills both verbal and physical).
Lily continues to rely primarily on her caregivers anticipation of what she needs but she has been starting to imitate models of how she can request needs independently on her SGD.
Lily’s behaviors have significantly improved. She is much more regulated throughout sessions and does not rely on music as a form of comfort to soothe her when she is upset.
Lily is starting to participate more consistently during session activities and she can sit and attend for longer periods of time, 10-15 minutes without a break.
Through direct observation throughout our sessions Lily has demonstrated the ability to identify objects, discriminate objects from a field of up to 12 symbols per page, identify caregivers, greet “hi”, reject activities “no” , “finish”, request more of an activity, identify animals.
Lily has been able to initiate and carry out her responses to verbal directions much more consistently.
Lily has been able to follow the directions: “Stand”, “Sit”, “Open”, “look at me”, “let’s go to the kitchen”, “take the spoon” and “wave goodbye”.
Lily is currently able to follow verbal directions 3/10 times on average each session.
It is important to note that Lily’s difficulties with carrying out directions are due to motor planning difficulties not because she cannot understand what is being asked of her.

We still have a ways to go, but I’m confident that my kid is going to blow everyone away with her brilliance one day soon.

Love,

C and L

Planning for the future

Posted on March 27, 2015 by mommabear0208

A few weeks ago, I was interviewed by a NYTimes reporter about the steps I’ve taken to prepare for Lily’s financial future. A few days later, a NYTimes photographer came over to take photos of me and L.

My ask of this reporter was this: I will share my story with you, but you have to help me raise awareness about Rett Syndrome. She kept her promise.

And, if you click on the below link, you can see how upset Lily gets when her OT Katherine is working with her in one of the pictures. My sweetie!

Please read and share this article with people you know who have children with special needs. Or just check it out to see pictures of the sweetest kiddo on the planet…