A Message from Mom: Mother's Day is a perfect day to reflect on the past and look forward to the FUTURE. Or Is It? For some of us that future is hard to see. Not necessarily because we can't see it, rather it's so, so damn hard to look at. Amy over at Girl in a Party Hat wrote a moving and eloquent entry on Sunday which she titled Ghost of the Future. I read it midday and truthfully it haunted me for the rest of the weekend.
For several reasons. Many that are swirling around in my mind with lightening speed. As Sarah is getting closer and closer to that infamous age of 22, the future is becoming more in focus, crystal clear at times. Yet blurrier than the best prescribed pair of glasses can correct.
First, who picked twenty-two? The mystical age when a student on an IEP, one who falls in that IQ curve of having some level of mental retardation, stops receiving services from their home school district? Why not 21, or 25 or even when it is deemed most appropriate for the individual student? After all, it is an Individualized Educational Plan. But so be it, some fights are just not worth the battle. We have two more years on the tabs of the school district. Two years to prepare for the FUTURE or is it the rest of our lives. The rest of Sarah's life.
I have been attending lots of meetings lately about the new IEP that the state of Ohio will be rolling out in September. I like it, actually I love it. It is scaring the hell out of most school districts. Why? Because it is making them think about the FUTURE. In a different way. I believe it is forcing a shift to their paradigm. We all know change can be tough. But change in total thought process, change for the FUTURE of the next generation is even scarier.
And I think I know why...
I decided to sneak home on Friday. As I was turning onto the street I could see that our big garage door was open. Odd. I looked at the clock. Sarah should be home and she ALWAYS shuts the door behind her. The bus driver won't leave until that door is down. It's our unwritten code that makes me feel better about Sarah coming into the house alone. As I go around the slight bend in the road, I can see a body bending over by our mailbox. The person is emptying out the water that had accumulated in the lid of the garbage can during the morning rainfall. Then up comes the lid onto the garbage can and so does the person. As I get closer, I realize it is Sarah. Still in her work uniform, she went out to fetch the empty garbage can.
In the old model, this observation was all that was needed for the adult responsible for transition to see. Note in file: Client can take in garbage can. Placement: MR/DD Workshop - Possible jobs: backroom, loading dock, maybe cafeteria. And that's where Sarah would stay for the next 20, 30, even 40 years.
THAT FUTURE is scary. Scary for me and scary for Sarah. How do I know? Because last week Sarah and I toured the county MR/DD facility where they wanted to send her for the summer. Where they would want her to go after she ages out of school funded instruction. It used to be called a "Workshop." Parents protested. So they changed the name to "Adult Activities Center." One problem. They didn't change what was inside. They are still working off the old paradigm. The one that says she should be comfortable doing less than her potential. The model that allows her to sit in a wheelchair clinging to baby dolls and rocking back and forth, if that's what she wants to do.
What they are missing is Sarah took that garbage can in with NO instruction. NO supervision. NO job coach. NO IEP goals. NO performance standards. NO paycheck.
Just Sarah THINKING. Yes, this was out of her daily routine. She observed a need: the garbage can was still outside when she got home and from her own observation it is suppose to be in the garage. She thought. YES, she can think, thank you very much. She created a plan on her own of how to get that can inside. Usually the first thing she does when she gets home is change her clothes, so I am even going to say she recognized this could be a dirty job, that's why she is still in her already dirty work uniform. Once she got out to the tree lawn, she discovered the lid was full of water. So rather than put it on the can with water in the lid, she meticulously started to shake it, until all the water was out. Then she turned the can around so the wheels were headed in the right direction. Once it was secure in the garage, she immediately went to the bathroom to wash her hands. Then she took off her dirty clothes, left the wet pants in the laundry room, took the rest upstairs. She got dressed, came downstairs and made herself a snack, went back up to her room, turned on her laptop, checked her blog, put on her headphones, dialed up the Ipod that I still am not sure how to operate, and snuggled into her chair to relax. The old model did not take any of this into account.
2009. What a great year to be a mom. Sarah's mom. No, it doesn't have to be a dirty little word. It does not have to be scary. Sarah is better prepared. Her thought process more activated, her desires more known, her independence visible. It's the system that is frightening. Old ways have to change. And yes, I recognize it is up to ME. I have to put aside my fears and fight. Fight for change. For Sarah. For Sophie. For Elijah who is not yet born. For all the adults with Down syndrome that will be walking behind us. Here's to the FUTURE.