Monday, August 2, 2010

“By ‘alive,’ I don’t mean just ‘not dead,’

“By ‘alive,’ I don’t mean just ‘not dead,’ either. You’d think my mother would have been satisfied for me to live at home, tucked away from the world where she could protect me, but for her, that wasn’t living. She insisted that I be great.” Jonathan Morrow Author of

(I hope when your done reading you come back to read my thoughts on this blog and post your thoughts)

I really, really encourage you take a moment to read this link. It truly changed my life and I think you will want to share it with every parent of a child with a disability that you know!
I think sometimes we get so wrapped up in how the disability affects us that we forget how it affects our child and how our actions will effect the rest of their lives. The above blog was written by a disabled man whose doctors did not expect him to survive early infancy. In his blog he describes what his mother did for him and how it changed his life.
For me as a parent of a child with Autism, even before reading blog have always pushed my school district to the extreme for Austin. After the first year, Ed and I made our district move Austin to another district for appropriate services, when we finally returned to our district 3 years later we pushed for the program to change. Our child is the first non verbal child with Autism, who was not working at grade level, to be main streamed partial day in Kindergarten and 1st and succeed. I do believe the district did not think he would succeed, but he is. For me success is seeing the work you are doing at school or therapy, work its way into real life. For us what we wanted was socialization, for Austin to be able to make the connection with peers in and out of school. Can he go out and play on a playground today like a “normal” kid? No but his is trying, he waves to say hello and he tries to engage other kids we are getting there at almost 9.
This article always reminds me who I am fighting for. Since this blog is from the son's perspective of what his mother gave him, it puts things into perspective for me and what I need to do for Austin. Every time I read it is like the first time. It challenges me to go on and do what I need to do no matter how overwhelming it is, no matter how intimidating it is.

“When my elementary school principal decided that disabled children didn’t have a place in her school, my mom appealed to the school board and turned every board member’s life into a living hell for two years.

She won.”

How many PITA parents do you know that have stories just like this? I know a lot. I personally can’t wait to hear them all write a blog or tell their story just like Jonathan has on how we did something similar for them.
I know it Austin’s almost 9 years of life I have a few of these. My favorite is sitting at an IEP meeting and asking for Vision Therapy and at entire school district team and by team I mean two school districts looking at Ed and I and having the audacity to say something to the point of Austin will not like this type of therapy. Being me I responded with a smart arse response of, “I do not chose things for my children by what they like, otherwise my older children would be out smoking pot and drinking alcohol”. The room was quite and Austin got Vision therapy, which is in it self another blog and an amazing therapy!!!!!

So today my challenge for you is to book mark Jonathan Morrow’s Blog and when you feel discouraged and that there is no hope, pull it out and read it.
Remind yourself of how you want your child to tell the story of what you did for him or her. Honestly the only people our kids have that they can depend on is us. So go out and PITAup, change the life of a child with Autism, the life you change, just might just be your own!!!

*Please note any links that are in green and underlined twice are being linked by the blog, and are not being linked by me and do not represent anything I am promoting.*

No comments:

Post a Comment