Lily the Scientist

School started 3 weeks ago. Lily would be in 5^th grade while her sister begins the 2nd grade. Although Lily technically isn’t enrolled at her school we are continuing to be part of her class. She lights up whenever she is around her school friends, its great motivation for her. In 5^th grade they have science l, which Lily has ALWAYS looked forward to, she talked about how she couldn’t wait for 5^th grade and science lab with the beloved Science teacher,  Mrs. Ayer.  We decided to move around therapy sessions to accommodate Science Lab, and now Lily attended EVERY WEEK!  We have already completed a home science project with good friend, Maya, by making a model of an animal cell out of cake and candy, yum!

the animal cell model cake made by Lily and Maya

Best part when Lily attends class, she’s seated on a class chair, at her desk, with little to no  assistance from me. She is holding her head up and her torso, she is able to do this for extended periods when she motivated. She has come a long way.

The class welcomed Lily with a special note

Lily’s classmates know how to make her laugh

Next week we finally have her IEP (Individualized Education Program) assessment meeting with the local school district. I have been working with them for MONTHS to get a game plan together for education and therapies. It’s my hope that we can get a technical assessment so we can get access to communication devices like switches and buttons that Lily can use as well as help with programming and utilizing Lily’s eye-tracking computer device. We are also hoping for assistance in homeschooling. However it sounds like the most we’ll get is 5 hours a week so looks like I’ll be wearing the teacher hat as well.

Lily’s speech is our priority. Yes, we are doing all therapies to get her walking but getting her voice back is top on our list. I can’t imagine how frustrating it is for her to be “locked in”. She tries so hard to get sounds out that she is practically in tears from frustration. But she is making progress. She is making sounds and breathes on cue. I know it’s just a matter of time. Her swallowing is much improved, too. She can manage pretty much any food consistency. Lately she’s been enjoying pumpkin spice muffins and Ritz crackers. She also enjoys Icee’s on hot days. Her speech therapists are extremely encouraged by her progress and believe that it’s just a matter of time for her voice to come out.