Special Exposure Wednesday

Last week, the basketball team from Benedictine High School came to the Sportable Spokes wheelchair basketball practice. It was such fun to see the tall, long-legged Benedictine boys try to fold themselves into the wheelchairs. It was also great to see the Spokes players show off a bit!

Sandy!!

We've spent the last couple of days battening down the hatches and stocking up on water. Hurricane Sandy is on its way. We're already getting some rain and high winds (65+ mph) are expected in just a few hours. Hopefully before that arrives, I can get Ashley to the doctor's office..

Everyone on the East coast stay safe, and everyone else, please keep us in your prayers!

I'll be back to regular blogging soon!

The List That Shouldn't Exist

The IEP meeting that I requested to discuss accommodations which could be made to ensure Ashley no longer gets injured at school was held this week. I am not quite ready to write about the entire meeting, but I did want to show you something that I shared at the meeting.

I wanted to make sure that the IEP team members understood that the most current injury to Ashley's arm was ANOTHER example of the injuries that Ash has sustained at school - not the ONLY injury. I felt it was important to put into perspective the sum of injuries at school and then contrast that to the sum of injuries outside of school. So I presented this list of all the significant injuries Ashley has had since starting school at age 3. I did not include the fingertip bruises that have become commonplace from adults trying to move or reposition Ashley. Here is the list:

Significant injuries sustained by Ashley Nickerson during her school years from Preschool to Eleventh grade
Prepared October 24, 2012
Preschool:

While walking the school hallway with the principal, Ashley fell up a flight of steps. It was believed she broke her nose. The rescue squad was called and she was transported to the hospital emergency room. Fortunately her nose was not broken, but badly bruised. She had two black eyes for several weeks.

Kindergarten:

Ashley tripped in the classroom on the edge of a rug which had been placed over the classroom carpet. She fell into the edge of a table. Again she was transported to the ER. The doctor suspected she might have broken her eye socket bone (good eye) and immediately ordered a cat scan. Again thankfully, the bone was not broken, but she was badly bruised and again had a black eye.

First grade:

Ashley tripped while walking in the school hallway with her aide. She required two stitches in her upper lip as a result of the fall.

Second grade:

Ashley broke her two front teeth while riding the bus to school. She had to have both teeth capped as a result. Although I requested a copy of the video tape from the bus, my request was denied.

Three months after Ashley initially broke her two front teeth on the bus, she broke one of them again, also on the bus. Again, I was refused access to the videotape.

Third grade:

Ashley arrived home from school without her G-tube. I was told by the teacher and school administration that it absolutely could not have happened at school. Ashley had to be taken to the ER to have a new tube inserted. The next day, the original G-tube was found on the school playground.

Seventh grade:

I received a call from school that Ashley’s G-tube was found in her shirt (pulled out of her stoma). Again she was transported from school to the ER in an ambulance. The tube had been out all day and as a result the stoma had begun to close. The doctor was required to perform outpatient surgery to get it re-inserted.

2012 ESY Services:

Ashley arrived home with an abrasion about the size of an egg on the inside upper part of her right arm. It was bleeding slightly and blood had stained the shirt she was wearing. No note or phone call was received from school telling me what had happened. I purposely did not send a note the next day asking what had happened, but I did receive a phone call later that morning telling me that Ashley had just scraped her arm on the slide. I responded that the injury was present the prior day, and the only response was ‘oh’.

Eleventh grade:

Ashley’s arm was injured. The injury required two visits to the pediatrician, one to an orthopedist, one set of xrays, and a second attempt at xrays. According to school, “The investigators were unable to ascertain how the injury was sustained or what caused it. “

"Dance Is Like Thought"

My brother shared this remarkable article with me. It's the story, told both in words and pictures, of Helen Keller visiting Martha Graham's dance studio in 1954.

I could so easily pluck Ashley into those pictures along side Ms. Keller. I really wish that there were dance teachers today who would provide a similar opportunity for our deafblind children.

Be sure not to miss the video at the end of the article.

Special Exposure Wednesday

I really, really don't like squirrels. Now they are eating the gourds that I have on my front porch. They're just rats with fluffy tails and they need to go live on their own island far, far away.

Transition For Us Both

I mentioned a while back that Ashley had after a 10 year wait finally gotten a 'slot' on our state's Medicaid developmental disability waiver. That slot means she has access to more services, one of which is day support. While day support is not a necessity right now while Ashley is in school, it will be a great addition to her life when school ends. At least I hope that is true.

Day support is a place where adults with developmental disabilities spend their days. While it really irks me that such programs are a return to segregation, until we begin to see some real systems change in the US, day support programs do mean that the adults will not just sit home all day and all night. What I really hope is that I can find a good day support program and Ashley will not just trade sitting at home for sitting in a facility during the day.

So that I can begin to figure out how day support might be a service Ashley can use, I visited several of the programs in our area. Unfortunately, there are not a lot of such programs, and most of them are not good. But I was able to find one that I was happy with.

Unlike most of the facilities used by day support programs, A Grace Place was bright and cheery. The staff was friendly and seemed genuinely interested in their clients (I hate that term....). It seemed as if a lot of thought had gone into structuring the program to meet the needs of people with varying degrees of need. And, there appeared to be a real committment to integrating the 'clients' into the community in one way or another.

So, I could live with a place like A Grace Place, and I believe Ashley would enjoy spending some portion of her day there. But, there was one thing that bothered me, and it had nothing to do with the actual program, facilities or staff.

Every 'client' at A Grace Place is an adult. No one under the age of 18 is accepted into the program. I understand that and realize that the need for such programs exists for adults as well as children. My problem was personal - accepting that my sweet Ashley was soon to be an adult...

Her peers will no longer be the students at her school. Her peers will be people in their 20's, 30's, 40's, 50's and above. I'm not living in denial about Ashley growing up, but that doesn't mean I am happy to see the childhood years end. I want her to grow into the beautiful woman I know she will be, but a part of my heart longs for the sweet child that has graced my life for the past almost 16 years.

Perhaps the most difficult transition in all this will not be Ashley moving from school to adulthood, but rather mine for saying goodbye to the child and hello to the young adult.

Failing Our Moral Test

When the United States Senate dedicated a building to former U.S. Senator Hubert Humphrey he remarked:

"...the moral test of government is how that government treats those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; those who are in the shadows of life; the sick, the needy and the handicapped. "

Last Speech of Hubert H. Humphrey
November 1, 1977
Washington, D.C.

If government includes our school systems, then we are flunking our moral test miserably.

Besides the issue with Ashley's arm injury (and she has had a LOT more injuries on school property that I will detail in a later post), this weekend I read two more stories from less than 100 miles from my home about children injured significantly at school.

The first was a 10 year old girl from Chesapeake, Va who had her hand forcefully removed from her desk. The child's hand caught on a notebook and was cut. At least in this case, the teacher was charged with assault.

The second, and even scarier, event occurred in Hampton, Va. A young teen girl with special needs arrived home with her leg broken in two places. Surgery, recovery and an infection kept the girl in the hospital for three weeks. The girl's mother is convinced the injury happened on the school bus, but the girl is unable to talk due to her disabilities. The school district's response? There is no evidence on the bus videotape of the girl being injured. Sounds suspiciously like Ashley's mysterious injury...