“Play it again please!”

Posted on April 27, 2015 by mommabear0208

”Play it again please!”

She said this to me. While we were getting ready for school, and work this morning. It sounded jarbled like when you hear someone trying to speak to you under water. But the intonation was perfect as well as the pitch. And the timing of her request was appropriate (the song was about to end).

The song? “Let it go!” Of course we listened to it nonstop all morning!

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!!!

Spring Break, here we come!

Posted on April 1, 2015 by mommabear0208

Lily and I are heading down to Puerto Rico tomorrow. 5 days. Sun. Sand. Swimming. Just us two girls. We can’t wait!

I put together this flyer to share with fellow travelers. I realized the last time we flew that people were giving us looks because we’re different. And I want them to know that just because we’re different, it doesn’t mean that we should get any less respect. Actually, we should get more. So this is my solution:

Front:

Back:

Will let you know how it goes!

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…