|Simon's classmates made him this poster when he was in the hospital this October.|
I just got back from spending the morning at Simon's school. We had a scheduled IEP meeting this morning to discuss assessment results (one of many meetings this year, since we are in an "evaluation year"). We met with most of Simon's team -- The IEP coordinator, the inclusion teacher, the special education teacher, the speech language therapist, the occupational therapist, the physical therapist, the guidance counselor, and the school nurse. Missing, but planning to be at our next meeting in 2 weeks were the physical education teacher, the music therapist, the adaptive technology specialist, and the school psychologist. 12 people (not including Brian and I). It was a crowded room, and I was pretty worried that I wouldn't have enough of the cookies I'd baked to go around.
Today's concerns about pastry portions are a far cry from my feelings a few years ago, at our very first IEP meeting to discuss assessments and make recommendations. Then, I only knew one person in the room and I was very intimidated -- fearful that I would say something wrong that would negatively impact Simon's plan, that I wouldn't understand what was going on and would be cut out of the decision making, or that I would sign off on something that proved to be a bad decision and I would be stuck with the consequences.
Most of all, I felt alone.
Being the parent of a special needs kid can be a very isolating experience. Despite their best efforts, most of the people you are close to can't relate to what you are going through, and many of the specialists you turn to for help have a myopic view of your situation and your child. You often feel that no one sees the whole picture; who you are, who your child is, and you struggle to find the words and ways to explain something that seems complex and overwhelming even from the inside. As your child grows, your worries about isolation grow, too. Your child's safety and quality of life come into question; "How will they be okay when you aren't there? Will they be able to make friends? Will other adults see how amazing a person they are? Will they be able to get the care they need when they can't speak for themselves?"
I still worry about Simon. But, over the past three years, when it comes to his education, some important things have changed. At today's meeting, I was surrounded by a team of specialists that all know me, and know Simon even better. They've seen him on his best days, and his worst. They know his strengths and they know where he needs help. They were open to each other's ideas and they were receptive to mine.
I've also gained confidence in my role as advocate and Simon expert. I'm always asking questions, troubleshooting, and putting forward ideas, and I have found that -- far from being excluded -- this is welcome. Even when I disagree with someone, the team encourages me to be involved and gives Brian and I a lot of credit for being a key part of Simon's success. We've been told that they wish that more parents would do the same.
Realizing how far I've personally come was a great gift today. However, the best part of today was listening to Simon's team talk about him. They said they found him amazing, that they were proud of him, that they were concerned about him, and that they had hopes for him. More than once they called him "our Simon." They told funny stories about him (like when he pulled the fire alarm), and shared sweet moments (like when he read them his first book and made his preschool teacher cry).
After the meeting I hung around to watch Simon on the playground and at yoga time. He was surrounded by other kindergarteners that don't just tolerate him, nor do they just accept him in the pack. The other kids were constantly looking out for him -- helping him wash his hands after using the bathroom, helping him play and seek out interaction, helping him follow the rules and pay attention. Though I believe that kids are intrinsically good, I know that these children have been taught, through constant modeling and instruction from the adults, how to interact with Simon and the other special needs kids in the school. Simon's inclusion teacher and aid are particularly good at this, and the result is a community in which everyone helps one another. Sometimes, like at yoga time today, older kids with special needs help younger ones. Everyone is needed, important, included.
And I came to realize that Simon isn't just MY child. He belongs to them, too. His classmates, his teachers, his therapists. He belongs to our friends and family that have contributed to the seizure dog fund. To the people that cheer for his accomplishments when I crow about them on facebook. To you, dear reader. Simon belongs to everyone that cares about him and helps to keep him safe.
I've never been so happy to share.