Things happen for a reason. I learned a lot the first time we tried this. As a result, my approach is different this time. In the first school, I sat right beside Alexis in a tiny little chair, facing the teacher like all the other students. I felt like I was a student in Kindergarten myself, and Alexis felt like I was hovering over her. This time I am standing next to the teacher and just interpreting. It gives Alexis a lot more freedom and makes me feel grown up. :)
Here is her 1st Day of School picture:
The teacher is naturally really good with Alexis. She talks to her the same as she talks to the other students, and she is holding her accountable. These things are so important when helping a child, any child, yet especially a child with disabilities who wants to grow up.
I am beginning to see the reward of our perserverance, for here is her first assignment in school. She drew a picture of the boy who sits across from her in her pod and tree. Drawings which look like something are very new for us. Look closely at the top and you will see her name:
I am beginning to see the reward of our perserverance, for here is her first assignment in school. She drew a picture of the boy who sits across from her in her pod and tree. Drawings which look like something are very new for us. Look closely at the top and you will see her name:
The school is called Colorado West Christian School. This is an assignment from her 2nd day:
The picture is x-tra big so you can see her handwriting. My young lady is writing. Ummm, yeah! Kind of cool!!
In addition to the blessing of this school, our little truck broke on our way to a friend's house who happened to have an extra vehicle sitting around. I drove their spare home, and a few weeks later I won a Subaru Outback. Antonelli's Advanced Automotive in Grand Junction, Colorado gave away the car in a contest. It was so generous of them. The car is great, not only because it is 11 years newer, in better condition, and has a ton more room than the truck, it is also because Alexis can use a switch to control her window. She wasn't able to do that in the pre-electronic truck where she couldn't even reach the handle.
Little things for most people are typically big things for Alexis. Rolling down a car window is one example. Another is the ability to wash one's hands under running water. Alexis has experienced 15 years of not being able to wash her hands, yet not any more! Thanks to the help of a kindhearted man named Brian Moore, Alexis has a granite counter top with cabinet space and a working sink. Check it out:
She also walked this past summer. Woo-hoo!
...except, Alexis has severe spinal issues. She has had her neck issue all of her life and her mid-spine increasingly grew worse as she entered the years of double digits. I have been warned that as her curvature exceeds 50 degrees, I should be prepared for paralysis. Ironically, I watched her abilities improve as her spine reached a whopping 117 degrees. And yet, how many lives does this child have? Doctors to this day say a fall could be life-threatening or cause permanent paralysis, and it just takes once.
She fell a few days after the above video was taken. She's okay. It shook us up though. I've been pushing her to walk for so many years when she never really wanted to. I used to tell her she would be able to make the choice once she learned to walk. When she fell, she said she wanted to be done trying to walk independently, and I am letting her. Walking is not worth risking her life.
On the flip side though, her spinal curve has improved over the last year. About 1 1/2 years ago, Alexis actually did start to show some intermittent signs of paralysis. It freaked both of us out. Since then we have been quite focused on healing her back. She's been getting weekly massage and chiropractic work. I rub cannabis salve on her back nightly, along with praying and strongly believing her back can improve. And so it has. In one year her curve went from 117 down to 109. We will check it again next summer. Perhaps you will keep her in your thoughts?
Speaking of medical issues, she is completely off her seizure medicine, which means Alexis is medication-free. Hooray!!!!! Maybe this is why she is starting to write and draw better? Additionally, in the two years since we have been in Colorado, she has not had to fight for her life; not even once!!! This is the hugest hooray of them all!!! It is an incredible feeling compared to having her funeral planned out. Whew!!!!
Oh yes, one more thing happened over the past year; I went to college and earned a CNA license, and as of a few months ago, I am getting paid to do Alexis' CNA cares. Wow! Wow! It's a great program and only in a few states. Thank you Colorado!
Here's to hanging in there, supportive people and programs, and trying again!
Cheers!
--angie
2 comments:
Beautiful!
so sweet! Thank you!!!
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