Monday, May 13, 2013


In 7 days Lu will be THREE YEARS OLD! I can't believe three years have come and gone already and she's like, a "kid", not a baby anymore, but a kid! Besides it just being exciting that another birthday is almost here, I have been spending the past few months preparing for Lucy's transition from the current services she receives through the Early Intervention program which serves children from birth to three years old. And so now, we are getting ready for preschool and all new therapists. 

My cousin, Danielle, has been Lu's speech therapist since she was one year old. She has been with us through every step of the process of figuring out how to help Lu communicate with us from the beginning with picture cards to learning the PODD and now trying to help us get the Tobii.  But in a week, we won't have her as a therapist anymore! Just like that. She has been integral to getting us to where we are and we are so thankful for all that she has done for us and for Lu. Luckily, we will still see her all of the time since she is family, but  just not three times a week here at our house for speech.

We have had a rocky road with physical therapists, but we finally got Mari last September and she is a pt genius, but now we have to "transition" to someone new. Again luckily, we plan on still seeing Mari in outpatient at Easter Seals when we need extra pt. We were literally just sitting here needing "stuff" Before Mari came along. Lu needed equipment and someone that knew how to get it and use it and adjust it and Mari just swooped in and took care of it all. And she is great with Lucy!

The new therapists I have met are also wonderful! I am super excited for them also, it's just the change. We have spent the last year having between 7 and 9 therapy sessions a week, so I am kind of looking forward to less so I have more time to do fun stuff with Lu; I'm really excited for that. In the past months I have met all of the new therapists and they have come and done assessments on Lu to help create her very first IEP (Individualized Education Plan). We have spent two different days working with the transition coordinator to complete a standardized test which is used just for service qualification purposes. Guess who scored right at her age-level in the cognitive guessed it, Lu did. We spent several other days with the new OT and Pt and we spent three days with the new speech therapist while she completed a communication assessment, which Lu scored at her age-level in the receptive language section. What those scores mean is that intellectually (cognitively) Lu is just like any other three year old, and she understands what people are saying, just like her peers without cognitive delays. 

Understanding Rett Syndrome and how it effects Lucy and how her treatment should be approached can be quite a mind-shift for people. The combination of symptoms can be overwhelming I think when you don't know her and understand her. I read over the IEP draft this weekend because we have her very first IEP meeting today, and I realized that it will likely take a little time for all of these new people to understand really and truly what life is like for Lu and what we need to do to help her. For example: her hands are not ever going to improve. Over the past year she has lost some more functioning in them and her hand movements have changed several times, but they won't regain any functioning; it's just not how Rett Syndrome works. I worry that new people will view Chad and I as nay-sayers or as being negative when we try to explain this, but Dr. Sasha told us this as a fact the first time we met her. Lucy needs to learn to do things in spite of her hands, with adaptations, but not try to make her hands get "better"...they just won't. That's just one example of something people have trouble accepting I think. 

And at preschool they eat lunch! It terrifies me to have anyone but me, Chad, or my mom feeding Lucy. She could easily choke. She chokes when I'm feeding her and I do it 3-4 timesaver day, every single day! Last night I began to panic and only half-jokingly asked Chad if he thought we should cancel the IEP meeting, then I started to cry. As is the case with most things we have been faced with in this journey, it's just not about how Chad and I feel, it's about Lu being able to have some independence, and make friends, and experience new things. She is so smart, and brave, and strong and deserves to go and do this, I just can't stand that it will be without me! 

We have to share Lu with the world, and share the world with her.

No comments:

Post a Comment