Wednesday, September 28, 2022

When Back-To-School Nite is a Closed Door

 Last night was the first on-campus Back-to-School Nite (B2S Nite) since COVID-19 shut everything down in 2020. I was so excited. I lined up coverage for James, because eloping is still a thing and I wanted to be present for this night in his senior year. 

Buzz explaining to Woody why parents should go to back to school night

Then I checked my emails and saw that his room, and only his room, will be closed, because the teacher was sick. My heart sank, and then I was angry. Not because his teacher was sick, but because B2S Nite has for me become a symbol of how special needs kids and parents are so often sidelined and ignored by the educational system, and a focal point of the pain of being reminded that our kids are different and don't count as much as others.

From Kindergarten through 4th grade, James was in a regular classroom with a 1:1 aide. I loved B2S Nite, not only to see what was happening in the classroom, but to meet other parents and have a break myself. James always wrote me a note, along with his peers writing notes for their parents. It was great. 

Then I allowed him to transition to the Special Day Class. Little did I know it, but I was signing away a lot of things I liked about James' school year. No book fair reminders. No class party participation. No field trip chaperone days. And no B2S Nite. When I brought this up to the teachers, they were surprised. That is when I discovered that their experience with many of their their parents seemed to be sheer relief of being able to drop their kids off and not worrying about them. Full stop.

I understand that relief, believe me. What I don't understand is the lack of interest of what goes on in the classrooms, and how that is almost encouraged by the schools in our local districts. Frankly it's unnerving.

This year I asked if I could sit in on another classroom and was easily accommodated. Even though it was not my son's class, I was able to greet many parents and get some good information about programs that exist in the years after high school. I ended up enjoying my night out, getting information, socializing, and feeling included as part of the school. 

I would ask that teachers and schools and district not let anyone's Back-to-School Night be a closed door. Rather, have a Plan B for another teacher or Staff to cover or to have volunteers set up and proctor the classroom. Please don't increase our isolation. In a world where teachers are not getting the respect or support they need, let B2S Nite be an opportunity for interested parents to get on board and pitch in to help make the year a success and feel a part of something good. I understand it's not as simple as this suggestion, but I think it's a good start. 

Wednesday, September 21, 2022

What It Takes

40% of parents of autistic children suffer from sleep sleep disruption due to fear of elopement

I have over 90 hours of respite every 3 months. I have not been able to use it in over 7 months because there are no workers I can trust to be with my son. I have gone through 2 agencies and asked my regional center for help and still I cannot use my respite hours. 

I am lucky that we have ABA - literally thanks to Feda and other Autism Mom advocates - and a great school (who sponsored a symposium where I was able to meet and speak briefly with Feda). Also the support of family and friends. But still I am way short of sleep and time for myself.

Elopement seems to ebb and swell with my guy. So far this year, it's been on high for extra long. The sofa has become my bed and have signs and bells on my doors to deter eloping. Many nights I feel like I am holding my breath in case I miss hearing something. I made sure my kids both had swim lessons until they knew how to swim and made sure to introduce them to the river and ocean so they know how to respect them. I memorize what he's wearing before he goes out the door and have photos on my phone to show in case he does elope.

My guy is generally sunny. He has a good sense of humor, and can be sneaky.  He is kind to our kitties and helps with the chores. He is also 17 and wants to get out and explore.

I am still sleep deprived and have been for years. But so far, he is safe. Through fires, moves, divorce, upheavals, awful school settings, COVID-19 isolation, we are still here. Not everyone is so lucky. 

Please take a moment to view this Autism Safety Awareness video to get to know more about autism. Then visit the September 26th site and read about tools and information you can use. It can literally save your life.