I have mostly retired from the role of Moses in my children’s lives.
After our kids were diagnosed with autism in 1995, we began to educate ourselves about autism. We also spent a lot of time educating those who were going to be responsible for the temporary care of our children. I printed reams of paper and passed them out to Sunday School teachers, girl scout leaders, family members, etc. (some must have seen me coming and run the other way). When we started going to a new church, we met with the Sunday School Superintendent / youth pastor to talk about our kids, and pass out more information about high functioning autism. We wanted to smooth the way before our kids. I didn’t want my son to get in trouble for something that was part and parcel of autism. I wanted to make things easier for him and for those who would take care of him. I was going before him, parting the waters.
At every IEPC (Individual Educational Planning Committee) meeting, I handed out new information for the team of therapists, teachers, and helpers assigned to our children. At first, they said our kids could not have autism, in part because high functioning autism was not as frequently diagnosed then. Rain Man was the image most people had of autism. I even made a presentation to my son’s 5th grade classmates about autism (which mostly solved the problem with bullying in that class).
When my son entered middle school, we were very concerned with how he was going to handle the changes. He would be dealing with a much larger group of students on a daily basis. Instead of staying in the same place in his classroom, he would have to move from classroom to classroom, from teacher to teacher. This was a huge transition that was viewed with some trepidation by his teacher consultant, social worker, fifth grade teacher, speech therapist and me. So a few weeks before Will started the sixth grade, we had a big meeting with all of his 6th grade teachers in order to explain what it was going to be like to have him in their classes. We were trying to head off meltdowns. We were trying to make his way smoother before him, so to speak. To part the waters.
We had a meeting with his 7th grade teachers before 7th grade, and we had a meeting with his 8th grade teachers before 8th grade. We had one big meeting with his high school teachers before he started high school. Our school district was small, so most of them knew him or knew of him at that point. He was hard to miss. He was six feet tall at the beginning of sixth grade, lanky, loud, and awkward. And smart. And gifted. I didn’t want them to miss that, either.
One of the important things about being a special education parent is that we are so very involved with our children’s education. From 1992 onward, I attended an IEPC meeting for each of my three children at least once a year (three meetings a year), plus every three years, a special meeting for Michigan testing requirements to see if they still qualified for special education services. (MET). These meetings included their teacher, an administrator, the speech therapist, the occupational therapist, the teacher consultant, the social worker, and toward the end, a transition specialist. This was in addition to any parent-teacher conferences.
Our role in parting the water for our kids was encouraged and even demanded of us. I was an advocate for my kids all the way through high school, and I was applauded for my efforts (and no doubt sometimes complained about).
However, almost from the beginning, our long-term goal has been independent living for our kids. We won’t always be able to care for them. From early on, we talked about college, their future jobs, and their own apartments. When my daughter was ten, she announced that she shouldn’t have to sweep because she wasn’t very good at it, I said, “Then you need to practice, so that you can do it when you get your own apartment.” Not if, but when. Brainwashing is a strategy.
In 2001, I decided to go back to school to become a legal secretary. I said to them, “I need something to do when you guys don’t need me anymore.” I studied for three years, modeling college level effort.
It is not easy to relinquish the role of Moses.
My oldest daughter, who is the most impaired, received bus training, rode the bus from downtown to Davenport University five days a week for a year, and rode the bus with her brother for over a year. Then one day none of us could take her to a meeting downtown. She said, “I can get on the bus and take myself there,” as if it was the most natural thing in the world. I didn’t want to let her go, but my husband said that I had to, for her sake and for mine. She did very well, and has ridden the bus independently several times since then.
Their transition to independence has also been my transition to bystander, to cheerleader, to listener, to mentor. As they get older, I can’t go before them and prepare the way. I can’t protect them always. And I also have some plans for my retirement. I plan to write a book or two, to volunteer, and to spend time with my husband and their father exploring new hobbies or going camping together by ourselves. Retirement has benefits.
Bravo Ann! As an autism community member since 1995 as well, I remember those days when I said Aspergers and people look at me with a “Huh?” look, which of course I expected and then launched into my little talk about what it was. Now I hear the word it seems almost everywhere. One morning in my gym, as I was exercising I saw three young moms standing together talking, each one has come and told me their child has Aspergers. I am the “senior mom”. I thought how much times have changed. Glad you are sharing your stories and enjoying the fruits of your labor. 🙂
Lisa Bardack said:
You’re writing is beautiful and eloquent. You are clearly a gift to the autism community. I hope more people see your words. Your thoughts are eloquent glimpses into the experience of a parent of autistic kids. Keep on writing!
Ann Kilter said:
Your words are such an encouragement. Thank you.
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