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Sunday, July 06, 2014

Life at 11. Purposeful speech and other news.

Paper Jamz Guitar
Ellie is firmly into the pre-teen zone of consciousness. She introduces us to popular music on You Tube she finds all on her own. She thinks Katie Perry's Roar is pretty great (I agree) and she loves Capital Cities song Safe and Sound. Kissing You by Miranda Cosgrove is also a huge hit.  She still loves to dance with her Fijits and all her toys blaring all over the house. She calls this a Jam Session and she means it. She particularly loves this Paper Jamz guitar as well. All these toys offer a big return for her big effort in motor planning to play with them.  She is so patient with herself and determined when she is manipulating images on the iPad for example. Sometimes it takes her 10 or more tries to get what she wants but she patiently keeps trying employing a laser like focus in her attempts. It's impressive. I need to cultivate that type of patience in myself about my own efforts to learn about and traverse the world.
Ellie at 11 and a half.

She is also still (knock on wood) G-tube free.

I have to pause whenever I think about it because it has been such a huge life change. We can go in ponds now….! Ponds! We live right next to one so that is significant. Though, it's July 6 and we have yet to take her. We are still in our old way of life in our minds in many ways.  I think we are a bit shell shocked. You get into a certain mode of living and stick to that pattern.  It might just be a bit of fatigue too BUT my goal is to take her to our local neighborhood pond this year and just try it. The beach there may not have an accessible path down to the water like the one we saw in Provincetown so that is an obstacle but still - it's worth a look, right?  I need to take a leaf out of Ellie's book and keep trying things until we find the right solution.

She loves swimming and we hardly ever take her. I am put to shame by my friend's who take their quadriplegic daughter a few times per week. We have to get a stander up and running too.  Always so many things to get up an running and it's overwhelming most of the time with both Dave and I working full time.

Provincetown Beach Accessible Path
Ellie is all legs and arms these days as you can see in this picture. Growing, growing, growing, bones winning the race against muscles and ligaments. Which means Botox and casting and other interventions to ensure she doesn't end up a pretzel. Spinal orthosis (body jacket) and ankle, foot orthotics (AFO) are the measure of the day. Her network chiropractic appointments have kept her spinal curvature at bay and have also loosened up her ankles. Ellie has increasingly higher tone the lower you go down on her body and her poor feet and ankles are hit the hardest. I can't say enough good things about how Dr. Jennifer Lees has helped us. I wrote, here, about the initial scare with a huge curve in Ellie's spine that has since resolved. I still take Ellie once a week to Dr. Lees and it's worth every cent and every bit of time it takes to do so.  Thank God for non invasive help!

Ellie also loves her new school. They are rigorous in terms of schedule and academics and making the environment as much like a regular public school as possible. Seeing how much support they give their teachers I am pained for Ellie's old school and what they could achieve if they considered modernizing their approach.  I'm grateful that I switched her though, every day. This year along with having regular science class, language arts and math every day, Ellie also got exposed to industrial arts (shop) and cooking class and a very robust after school program where Ellie got to meet some of the older kids in an iPad class (her favorite), a game playing class (checkers, etc.), and a movement and music class.  They also have a very competitive but inclusive softball program on their AstroTurf pitch. The pitch is one of the only ones in the country at a special needs elementary school….(What's up with that country?!)

Ellie on the AstroTurf pitch with her trophy.
This summer for the first time I am taking her to day camp….there actually is one that provides a one to one aid and can manage Ellie's total care needs. We will see how that goes but I am hoping it offers another way for us to bring the world to Ellie.

The most exciting thing that happened over the last few days is that Ellie started interjecting (with her voice output device) into the conversation - with sentences that were spot on in terms of being part of the conversation.  For example, Dave and I have started watching movies with Ellie on her iPad before bed. We use the iPad because it's a small enough screen so that Ellie can watch the movie without fatiguing her eyes.  It's also a big enough screen such that all the beauty of the movies are not lost.

Ellie as Bat Girl for Halloween
We were trying to figure out how to use Amazon's Instant Video and upload it, etc. on the iPad. During the first attempt, Ellie who was watching intently interjected, "That's not working."  and she was right!  She did it again when we were discussing plans for the day using another short but totally appropriate sentence to join in.  And she did it so fast too in terms of her picking the right options on her Dynavox Maestro - so fast.  It makes me think that she could communicate a whole lot more if she was interested.  Her new school is all about use of technology and it shows but I also think her brain is growing and evolving and she is coming out
of her shell a little more. Her being able to interject into our conversations in a more sophisticated way gives me hope of her being able to, eventually, communicate with people that don't know her well.

Don't get me wrong, Ellie has always been able to make herself heard with us. BUT really only in things revolving around her care, her needs and in a very truncated fashion. For example the tilt of her head to indicate that she wanted to be pushed in that direction. So she does and has always communicated. But for her to say, "That's not working" and be right and right in there with what is going on is very validating in terms of our belief in her intelligence.

Life is going by pretty fast these days. I understand now why when I was a kid I preferred other kids or the grandparent set. The middle of life when you are supporting a family, a home and a career often feels like an unending ride on a fast roller coaster.  It's a lot. Blogging about it is a way to press pause and reflect on the things that matter and make all that hard work worthwhile.
Hope you are having a great summer!