Ashley, Through The Years

I spent a couple of hours this past Sunday looking at all the video tape recordings I have of Ashley from the time I adopted her. Many of the recordings were done by hospital therapists, during her time in the feeding program at our local children’s hospital or during outpatient speech, occupational or physical therapy. Others were done at school, though most of those were from Ashley’s preschool or early elementary school years. My school district stopped wanting to videotape Ashley after I won due process when Ashley was in 4th grade when one of their tapes was used to reflect negatively on their level of service. And then a few more recordings were ones I did at home – most often to prove that Ashley had a specific skill.

While it was very touching to watch Ashley through the years – little Ashley with a huge smile on her face as she disembarked from the school bus to slightly older Ashley fighting with her feeding therapist over ‘lumpy’ food to elementary school Ashley proving she could sign sentences when the school district said she couldn’t – the tapes of Ashley in school made me angry.

I asked myself the same questions I asked during the filming. Why do I have to prove that Ashley knows her ABCs? Why do I have to videotape her identifying every state in the United States? Why did I have to prove that she knew beginning in first grade what a rhombus and a parallelogram were? I didn’t have good answers then and I don’t have good answers now although I still find myself having to prove Ashley possesses academic skills.

I’m converting the videos to digital format because I am using them in a class I am teaching at our local university. The class is part of the Severe Disabilities Consortium which is composed of courses for teachers who are pursuing certification to teach children with severe disabilities.

So maybe the real reason I have all these videos was not to fight my school district through the years, but rather to help new severe disabilities teachers have a more open and positive attitude when they return to their classrooms.

I really do hope Ashley’s story can have a positive impact of other teachers and other children.

Where?

While I was out running errands this past weekend, something struck me as strange. I didn't see any adults with disabilities. In fact, as I thought back over the many errands I have run in the past year, I realized that I almost never see an adult with disabilities in my community.

I see lots of children with disabilities, and even a few teenagers. They are usually with their parents, and never with a group of other children.

I have seen one group of adults with obvious cognitive disabilities having lunch at one of our local malls. The adults, 5 of them, were with caregivers - women who appeared to me to be group home staff. The adults didn't seem to care that they were in the community - they were just doing as their carers directed. None of the adults looked happy.

So where are the adults with disabilities? I live in a medium-sized city, a city which is the capital of our state. I am in many different stores and community locations, places like grocery stores, malls, Target, WalMart, the library, and many medical facilities. I don't know why I haven't noticed before, but this weekend it was like I woke up to the fact that there were no adults with disabilities in my community.

Why is that? Our school systems spend most of the educational time supposedly preparing our children with cognitive disabilities for as independent a life as possible. I know for a fact that our schools take the children to the mall and grocery store multiple times each school year. I am told it is to help prepare the children for adulthood.

So what's happening? Are our school systems failing in their preparation? Are our other support organizations not achieving their goals of making communities inclusive? Are parents not doing their part to prepare their children? Have the parents of the adults with cognitive disabilities passed away and the adults are now lost - unable to function in the community?

This situation saddens me and frightens me. Will society not include my children as adults? Am I doing enough - to ready my children and to ready my community?

I'm very worried.

Carol Saylor

Carol Saylor is an artist, and she is deafblind. My Ashley is also an artist, and I love hearing Mrs. Saylor describe what it is like to create beauty with her hands because it gives me some insight into what Ashley is experiencing.

Take a few minutes to watch the video below of Mrs. Saylor, and I am sure you will be touched just as I was. And to see some of her beautiful work, check out her website.

Thankful Thursday

Today I am thankful...

• that Ashley and I survived a bout of the flu. I haven't seen Ashley that sick in many years and it was extremely scary.


• for really good books - ones that I enjoy reading so much that I try to read slowly so they won't end. I'm reading one now titled "Scarpetta".


• for Dr. Wright at my children's pediatrician's office. Dr. Wright is wonderful with Ashley. She touches her gently to let her know she is in the room. She indicates to Ashley just what she is going to do by lightly touching the area she is going to be examining. And one of the things that impressed me the most was how she just sat and looked intently at Ashley. She said a doctor could get a pretty good reading on how sick a child was by just watching quietly for a few moments. Thank you, Dr. Wright


• for my inhaler. I have needed it a lot this past week.


• for pharmacies that deliver medicine to your home


• that on really cold mornings, Ashley will wear her warm hat without a fight


• for friends who don't mind if you complain a lot about your job


• for oatmeal with peaches on a cold winter morning


• for ottomans. There's nothing better than being finished with my nightly chores, sitting on the couch and putting my feet up on my ottoman


• for those unexpectedly warm days in the middle of winter. Tomorrow morning the temperature is predicted to be 19 degrees. By Saturday, it is forecast to be sixty five degrees.


• for friends that you know really mean it when they say call anytime if you need anything (thank you Lynnette and Amy).

Special Exposure Wednesday

I love to think back to the times when my now 18 year old, almost 6 foot tall son was tiny enough to snuggle against his Grampy's chest. I spent the first year of my first child's life living with my in-laws, wonderful people who helped me become the best parent I could be. I owe them so much...



Make sure to check out all the great Special Exposure Wednesday photos at 5 Minutes For Special Needs!

"I never want to not be disabled"

My kids and I love the snow, but unfortunately we don't see very much of it around my part of Virginia. Then again, maybe that's why we love it - because we don't have to deal with piles and piles of dirty snow for 6 months out of every year. We get the pretty, magical snow that comes and goes in a few days, hopefully long enough to get a day or so out of school or work.

But parts of my state do get lots of snow, and one of our favorites is Wintergreen Ski Resort. If ever we are needing a dose of snow, Wintergreen is only an hour away.

One of the things I like most about Wintergreen is the owner's committment to providing a ski experience for everyone - even, dare I say it, people with disabilities. In addition to sponsoring the Virginia Winter Special Olympics each year, Wintergreen also has an adaptive sports program. Here is a great article that recently appeared in a Winston Salem, NC newspaper about the program, and one of its participants. I *love* her final comments in the article!

Adaptive Sports at Wintergreen

Be a Good Boy and Bring Mrs. Smith a Fresh One

As the parent of three children with significant disabilities, I have experienced those moments when adult beverages call to me. I imagine that for teachers of children with significant disabilities, the challenges faced each school day, both with educating the children and dealing with often difficult administrative rules, can also present the siren call of alcohol's numbing effects.

But, is it necessary to heed that call during the work day when those children's eduation and lives are in that teacher's hands. I think not....

Teacher Drunk On School Grounds