back to school

Got O settled into Kindergarten. He is in the same K-1 split class. 9 boys all with a variety of developmental delays; all perfectly lovely. Same 3 wonderful teachers. Different classroom. Uh-oh…something different. That threw our friend, O for a loop. He has been doing a wonderful job of self-soothing talk lately. When we walked in the classroom he said, ‘Well, this is different. (l o n g  pause) BUT, I think that it could be okay’. Major relief washed over me. Okay, crisis averted there. Pretty much, he’s been doing great lately. I left the room with him delightfully happy and participating in a drawing activity.

I returned to the classroom at 3 to pick him up. He couldn’t answer a question. He was so spaced out. The look in his eyes told me that he had had too much and just needed to leave. We left. A meltdown was eminent. Just a matter of time. I told him that we could get an ice cream cone to celebrate his first day. He only wanted to go to the candy shop and get candy there. Once I gave in and said, ‘ok’, he kinda switched gears and was on board. He still couldn’t make eye contact and was spacing out, but I thought, ‘maybe he’ll come around’. Spoke too soon…major meltdown…couldn’t get him out of the car at home. Ugg.

There were only 3 days the first week. They all kinda went the same. It’s hard to see him struggling when he was doing so well.

Today I picked him up. I met one of the specialists in the hall who was telling me how well O was doing this week and just this morning what a great job he did participating in the classroom activity. But, then his main teacher came down the hall and said that O was in the classroom and wasn’t very happy. As soon as I saw him my heart melted. He was so spaced out, laying on the floor, kicking the cabinet. His eyes were overflowing with tears as he stared straight ahead. Without even blinking, the tears were flowing. His eyes look more bluish than green when he is crying. I looked away because my eyes began swelling with tears as well. I managed to pull him out of it a bit by having him show me around the classroom. We sharpened pencils together in the new pencil sharpener.

He came home and just wanted to go downstairs and play legos. He’s really been enjoying that lately.

Tomorrow’s a new day. Lets hope that it goes more smoothly.

game on

I guess that I’ve known that all of this hard work and fighting for my kid and his deserved education was going to start. I’ve been living a bit in a fantasy world with rose colored glasses. It’s been great!

I was asking one of the moms at Oliver’s school about View Ridge as her older child attends there and she also has a child entering Kindergarten as well. She said that it’s such a fantastic school then asked me if we’ve attended any of the Kindergarten summer get togethers. Hmmm…what get togethers?!!! I haven’t heard about them. I’m sure that it’s just a total oversight to not include the special ed Kindergarteners. But, still…I would have hoped.

When I got to my car I started to cry. Yep, time to dust off those fighting gloves that I wore as a single mom advocating for my older son. Time to rally the troops. It’s game time! I don’t want to be pushy and self-righteous. I just want the opportunities that are afforded regular kids to extend to mine. I can tell that this not going to be a coasting parenting ride. That’s okay, I’m ready. I enjoyed the honeymoon phase. I didn’t know that there was such a phase in raising a child with autism. I think that I just declared it over. Game on!

where are we at?

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.