There are many out there who feel they know exactly what others need. They think they can tell you what is best, what will work, what "is not" needed to make life easier. The fact is that unless you have walked a day in the shoes of a physically challenged person, you likely have little to no idea what these needs are.
Something as simple as a kindergarten child trying to open a metal door at school becomes a fight. To get a push button istalled because the door is too heavy for this child becomes a year long effort. There are many people who will try to make these decisions without a clue. To have an aide provided even though your child does not have cognitive delays seems like a stone age idea to authority, when that simple task would improve the quality of life and decrease fatigue to provide energy for what is important.
We have had many of these "common sense" fights and expect many, many more.
Some examples of the strange things we have had to fight for are:
- push button doors
- consistant aids
- wheelchair accessible bathroom
- scribes
- propper and safe wheelchair pickups
- adequate space for rampvan
- inclusion in outings
- acessibilty to outings
- physio time during weekday(teachers refusing to let child out of class)
- access to community buildings
- transportation
- use of computer devices to decrease fatigue
- and many more
Recently I was told about a situation with a friend where they refused to include her child in the school curriculum due to a cognitive delay. They outright told her they would not teach her child. In order for her to get through the year now she had to cease employment to provide her child lunch as they would not provide assistance at the lunch hour. That is absolutly appauling.
I was told to facilitate better independance for my child recently. Although difficult to hear(made me cringe thinking I had to give up "control") it was very good advice. But how does one trust a system that has been so difficult to improve,made so many mistakes, caused incredible amounts of stress. Until things improve I have no intention of quitting the fight to help make things easier. I feel everyone deserves the tools and respect to decrease obstacles that cause hardship. Especially the "common sense" issues that to those who experience the issues can be big problems.
Don't ask me to back down. Don't ask me to stop fighting. Don't ask me to stop caring. That is something I am unwilling and unable to do. I write these blogs not only to let others know they are not alone, but to spread the word that we still live in a very archaic era. We may have improved imensely over the years but there is still much to do!
