Starting last October/November, Lila began having these involuntary gross motor movements that had gotten stronger and stronger, and become more frequent over the last two months of the year. This may seem like one issue, however, the reason for these movements stemmed from lack of deep muscle input over a long period of time. Meaning, if you have typical child that has pent up energy, they just run around the house for an hour and are able to feel that release and move on. Lila, being mobile with significant limitations, does not have that ability. Just doing PT twice a week and not having any other deep release for that build up of energy is not enough for her little body. This may seem like a simple fix, however it lead to lack of focus at school (falling significantly behind her peers), therapies and home, long involved fits that were hard for her to come out of, and inconsistent sleeping, which affects her negatively in all aspects. UUgghhhh, now we have a larger problem on our hands!
So, I had a heavy heart for a couple of months trying to figure out how we can help her, while at the same time utilizing all connections that we have around the country with experience in this realm. This was extra difficult when running across people who cannot understand our daily life. This was emotionally exhausting, physically exhausting, and consuming for our family.
Matt and I have learned over time that we are not the same people we were 10 years ago. This is something that we have known for quite some time, but others still have trouble grasping this concept. We don't laugh as much as we used to, aren't as spontaneous, and have extensive limitations in our ability to just go anywhere because Lila most likely can't eat the food or participate in whatever activity may be part of the adventure. Our lives have become much more serious. It is our job, and nobody else's, to be the advocate for this little girl, whom is the greatest thing that has ever happened to us! What an amazing responsibility, one that we happily take very seriously. Lila has gotten much further than anyone has expected, thanks to Matt and I. Sorry about this rant, however this has been difficult during the already difficult time that we were having.
Anyway, I had many concerns with school that needed to be addresses (so may that I couldn't even prioritze), and needed some support from someone who understood...after a very long involved conversation with a friend in Canada, we decided to take Lila out of school for three weeks and attend a local intensive physical therapy program. This is the same program that we go to in LA each year, but Lila works with her PT here in town, 4 hours a day, 4 days a week. Super hard decision to make.
Here's where the roller coaster comes into play....Lila began the program last Monday, and then spent the entire day Friday at school. Her teacher said that she has never seen Lila so attentive and excited about her work, and visiting with her friends (so much that she kept getting in trouble for talking too much :-). She was running so fast in her walker on the playground that four of her friends were chasing her and there was infectious laughter from all. Lila also wrote her letters 100% better then ever, with amazing focus so that she could go to music with her friends. So fun to hear all of this positive feedback!!!!
After school on Friday, we had a consult with the assistive technology specialist. We spent 1 1/2 hours talking about different aids that could help make Lila's life easier in the classroom, and help her to complete all of the tasks that are expected of her every day. This woman was AMAZING! She had a bag full of goodies that will help Lila in a dramatic way, and change her daily life for the better. During this meeting, Lila was just playing with the "babies" and having a snack. When she was done snacking, she came over to the table ad her teacher asked her a few questions..."Lila, L O O K?" Lila said 'look'. Then she said, "S E E". Lila said 'see'. She spelled three more words for her and she got them all correct! Lila cannot recognize these site words on paper, but she is retaining information she is learning in class!!! The speech therapist was also in this meeting. She, too, is an amazing woman who has tapped into Lila like no other. She came with good news...Lila has met all of her speech goals for the year already! We now have to write an entirely new set of goals...very exciting, very exciting.
So, this week I feel like Matt and I have made the right decision by taking her out of class for three weeks, and offering her this opportunity to gain some confidence, stability and ability to focus again. Whew, what a roller coaster. Hard decision to make when your child is already behind her peers, but a good one when you see the outcome of the deep muscle work.