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where are we at? January 23, 2010

Posted by caizooka in autism parenting.
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This past week was the Seattle Public School RISERS meeting. I hadn’t ever attended such a meeting and I think that when you least expect it, the impact of how much our lives have and will change catches me off guard. Risers are kids that currently have an IEP/special ed and are moving into Kindergarten from Pre-K, or from some other programs to first or second. I gather that a lot of the kids were autism spectrum kids based upon the questions asked by the parents. I thought that I was just going to fact find. I didn’t expect to be affected by the process. The entire system of the Seattle School District is changing and they are mapping out how the IEP kids are going to change with it. Honestly, it’s a stretch to be participating in such vastly different educational worlds. The largest problems at my teenager’s small, private school are currently the lack of middle school recess, the dissolution of the 7th grade volleyball team, and too much homework. The parent group at that school is so amazingly openly committed and caring. When there is an issue, there is a feeling of us working together to solve a problem. Now the world we are entering with Oliver’s education is one where it’s a more ‘us vs. them’ mentality with the school district. With this new system of placement and inclusion, it is hard for us to fathom that they are going to reasonably provide for each of our special ed. student’s needs. I understand some of the parent’s frustration with the lack of answers, but to be honest, they are rewriting an entire system. Lets give it a chance to work. I haven’t ever been in a situation before like that. Some of the parents inability to deal with their own child’s situation was clear as they were directing their anger towards the school district. I know it’s hard not knowing where are kids going to school next year. I hear serious anger and resentment in some of their voices. Alot of those parents have had to fight tooth and nail to get their kids what they need and deserve educationally, and I understand how difficult that must be. I have taken a backseat to all of my kids school situations recently. I used to be involved in the PTA, and am on a board for my younger son’s pre-school, but just trying to manage the varied school experiences and the needs of each of them is enough right now. Too much on some days. I feel incredibly fortunate to have friends and acquaintances at all of my children’s schools who are able to be more involved right now. A lot of them keep me in the loop on the goings ons and I appreciate it a great deal because it takes energy to manage all of that.

One thing that I did learn at the RISERS meeting is that there are only 20 spots for IEP students at the EEU for Kindergarten. It will be entirely lottery based to decide which IEP students will be offered a spot. I am not entirely certain of what our options are if he doesn’t get in. I know that he is not at all ready to enter a regular Kindergarten where there is 1 teacher to approximately 25-30 students. That would be devastating. I am grateful to my dear friend, J, who also attended the meeting and put things into perspective and accentuating the positive in this situation. O is a bright kid and will be fine! Thoughtful, you…thankful me. It seems to be so easy to lose perspective in this world that is too cloudy to navigate at times.

I also attended an Autism 200 seminar last night at Seattle Children’s. It was about being a consumer of autism research. The presenter was great and had great passion and compassion for autism and autistic families. He spoke a lot about being skeptical about data and studies. Something I already am. But, it was interesting to hear a scientific perspective. It seems like no one except for doctors/scientists/parents who are on either the extreme right or extreme left of an issue are willing to branch out and take a stand on what it is we are dealing with in terms of the causes of autism, what makes it better, or if there is a cure. THAT is frustrating for me. To listen to this very enthusiastic scientist speak for 1 hr 45 minutes but at the end of that time not to walk away with something tangible to make my son better is frustrating. Even at the Tessera conference that we attended in the fall, I was so frustrated to hear all of these fantastic, reknowned doctors not be able to tell me what to do is frustrating. I want to know what to do. I want to know why my son can’t sit on his bottom, but has to stand on his head and wedge it into the sofa when watching tv. I want to know what possessed my son to break out of his individual play where he was entirely happy, then to suddenly become enraged and smack a kid who was taunting him. He couldn’t stop hitting this kid. Granted, the kid hit him first and was hitting him back. Then O was so upset that this was happening that he couldn’t stop hitting me. WHY is this happening? I don’t expect anyone to understand who isn’t walking this same path with me, but it is lonely to be the only parent who is dealing with this in an entire gym full of parents and kids. Maybe they are dealing with something just as difficult, or even more, but at that very moment, all I feel is saddness for O that he cannot control himself. He looked at me with fear, anger, and love in his eyes at the same moment. I didn’t get mad at him. I held him close to me, even after he hit me repeatedly, and spoke calmly to him. I’m searching for answers. There doesn’t seem to be any obvious ones. Each one is just another piece to the parenting puzzle.

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Comments»

1. Mom - January 23, 2010

Do you still have the name of the special education advocate for the Seattle School District? Who does he help? Is there a possibility of getting in touch with him. I remember I listened to him at the conference we attended in the fall. I wonder if he could help with a proper placement for Ollie.


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