Saturday, March 7, 2015

No holding back

It's been a while, longer than I like going, but I am back. Our lives had many great and wonderful changes so far in 2015. We moved and now have a much bigger home with more space for all the children and a wonderful space for H to do his therapy and work. It's been amazing. The family seems much happier and relaxed it is exactly what we needed. I started a new job. I left my job teaching preschool and decided I needed something different, something that would make me feel that I was making an impact. I decided to take a leap and be a special education aide for high school students. Its been eye opening. I am no longer living under my sheltered special needs rock, I am fully exposed to the real life, real world things that are going on once children leave the comfy confines of the pre k/ elementary setting. It has changed my thinking and outlook on things.
In January I had the privilege of attending the Parent Organization Academy and since then I find myself really going back to that information  to help me. I never thought about the older kids with special needs as I was going to these things, I wanted to focus on the here and now not what would lay ahead for us. I regret that I wish I had. Not just for my own knowledge for my child but because I need to be a better resource to others around me. Thankfully I kept those resources and did listen to some great things so I am calling it to memory now.
Last year when I went to a conference I again didn't get too involved with the discussion about state supported living facilities, nursing homes and things of that nature. I always have had my thoughts and opinions on them and never really wanted to have to utilize them for myself or husband if we ever came to needing help. I never took into consideration that families utilize these facilities for their children. I know everyone has their reason but I do recall in that meeting last year hearing how they wanted to have families be better equipped and trained to care for their children and young adults in their home, if not help find affordable ways to make it happen.
Spending the last four weeks with my new job I have learned to really appreciate and not take for granted what I have. Most of the children in our special education program do not live it home or have a shared custody with the state school, or supported living facilities. Its tragic. Its so upsetting knowing these families felt so hopeless and overwhelmed that they couldn't care for or meet the needs of their child. To know our community missed the opportunity to help these families seize what they would need to help keep them with their parents hurts but not as much as hearing that some parents just didn't want the help and didn't think they were capable and they turn them over to the state.
Each of these children who have the capabilities over the past month have shared their goals, their hopes and dreams with me. I have a child forever wheelchair bound, no chance to do anything on his own, want to be a greeter at walmart. Another wants to work at Sonic. One hopes to be a singer or artist. There is one who has such big dreams in making it big in music. The point, they are all children and just like any other child they want to be something, someone when they are done with high school. They have dreams and ambitions just like we do, except while parents and family were encouraging ours, their parents, caretakers whomever it might be squelch theirs and deviate them to something else. They are held back even more now. Its bad enough they spend their time away from school feeling out of place now here they are being told even when want to be an adult no one will support you and most will discourage you and make you feel that you aren't capable of having a future. It has to stop.
None of my children will be held back. They want it, its theirs. You want to fight for it, then go for it. While I might know deep down some of their dreams and goals might not happen I want them to still learn these things on their own. It might be a learning experience for me in the end when I see them make that impossible goal that I think is out of their reach. I will sit more intently and listen to what is said. Their words are important and should be valued. They may have a disability but they still have many abilities and that should only make them and their dreams different not less than anyone elses.

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