Monthly Archives: March 2015

A different kind of report card

Posted on by

aI 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 by

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…

Presume Competence

Posted on by

Last night I participated in Lily’s occupational therapy session with the amazing Katherine.  Katherine tends to have a difficult time with Lily as she doesn’t come until the end of the day (sometimes not arriving until 8pm) and Lily is tired, and done with therapy (she likely had at least 4 hours of it earlier in the day).  So I help when I can.  Sometimes I’m too distracting.  But last night wasn’t one of those evenings.

We worked the entire session around reading two of Lily’s favorite books – ‘Pete the Cat’ and ‘Don’t let the pigeon drive the bus’.  Yes, she still loves the pigeon book.

When I read to her, I try to make it as interactive as possible – asking her to turn the page, point to the pigeon, say ‘bye’, or ‘no’ at the appropriate times, etc…  So I do push her.  A bit.  Well, last night with Katherine, I was completely blown away.  Katherine helped me ‘push’ Lily a bit further and the things Lily was able to do was incredible.

Not only was she able to correctly point to the pigeon (who she desperately wants to drive the bus, by the way), but the bus driver AND the bus.  She knew ALL of them.  Whereas previously I was only asking her to pinpoint one object, I learned that she can easily differentiate among the three objects on the page.

Also, Katherine was able to get Lily to do some fantastically complicated physical feats by motivating her to turn the page.  She seamlessly and independently went from laying on her back, to sitting up, leaning forward, crawling to the book on all 4s and then reaching her hand out to turn the page (while balancing on her hand and knees).

I presume she understands more than we think and can do a lot.  But I realize that even I have been underestimating her abilities.  No longer kid.  No longer!

Look and you will hear

Posted on by

Communicating

“Know that people with Rett are communicating with you all of the time. It’s in when she looks at you, or doesn’t, it’s the length of her gaze, the shift of her gaze, in how wide her eyes get, in the eyebrows; it’s in the frequency or intensity of her stereotypie at any given moment, its in the moments she stops… Look and you will hear.” Denise R., Lily’s special ed at-home teacher.

 

A correspondence I never wanted to write

Posted on by

Hi Dr. Djukic,

I hope you’re well.

I wanted to check in with you because a few things have been going on with Lily lately. And I think we may need to schedule an EEG to have her monitored.

Two weeks ago she had what I would describe as three Rett episodes in a row. She was present but shaking and frozen uncontrollably, at the same time. If that makes sense.

Last week I believe she had two seizures and they were very close to each other in timing. These look different from the Rett episodes in that Lily wasn’t as present and she was foaming and spitting at the mouth a bit.

Please let me know how you would like to proceed.

Thank you.

Christine Salerno