Tyson has been doing really well over the weekend. He started sleeping so good as soon as we got back home from Utah even though the drive home was a bit difficult. Comming off of some of the medication has been going well and we haven't really noticed any changes. So that is great! The new small dose of antibiotic has really helped with his digestion and gas issues that we were having. I'm hoping it continues to improve though. Tomorrow we meet with the medicaid nurse to see if we qualify for any in home nursing care along with respite care. Hopefully we qualify for something!
Something that has come to my attention since all of this has happened is how this could potentially change our future drastically. Our son could potentially be non verbal or in a wheel chair the rest of his life. He will also most likely be involved in the special eduation programs in school and need some if not many acomidations. In high school and middle school I took several years of sign language. The visual nature of the language excited me and I loved that I didn't have to figure out grammer and spelling to communicate. For those who don't know I am dislexic and I didn't read or write until I was 8 or 9. I have over come a lot and I have graduated from high school and college without special assistance but it wasn't without its struggles. Part of what we learned about I'm those ASL classes is how deaf people interact in the community and how the ADA law (Americans with Disabilities) that came out in the 90's really helped their community.
In college I received a bachelor's degree in secondary education. One of the courses we took was on special education and how the public school system is intigrating children with special needs into regular classrooms. It was a great introduction on how the special education system works and how schools are adapting. One of our home work assignments for that class was to use a wheel chair for 4 hours and do do assigned tasks like drink from a drinking fountan, go down and up a hill, sit at a desk, get in and out of a car and use a public restroom without using our legs at all. We were not allowed to tell people around us that it was for an assignment and we had to do everything ourself unless someone offered to help us.
I'll admit I spent the most of the 4 hours staying by myself in a dark classroom doing home work because I was nervous to interact with people around me. Everyone stared and I felt silly not knowing how to move myself around in a graceful manner. But when I went to do my tasks they were almost impossible. I almost fell going down the hill because I was going to fast. I physically didn't have the strength to push myself up the hill and some kind guy offered to push me back up the hill since he saw I was struggling so much. It was so difficult to open doors and push myself in and moving myself to and from the toilet and in and out of the car was rediculous!
I never though that it would impact me as much as it did but I truly saw the need for the ADA. Without it people with disabilities would be even more handycap and they would be even more disadvantaged. I believe this country has come a long way but there is still more that can be done. This article really struck me and I thought I would bring awareness of it to my small group of readers.
I don't know how far Tyson will progress but I definatly won't let him feel sorry for him self or like less of a person because of the struggles he has been given but he does deserve to have public access to things and the ability to move and work with others in a reasonable way.
http://cpdailyliving.com/the-little-girl-who-crawled-up-the-capitol-steps-25-years-later-jennifer-keelan-and-the-ada/
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