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. 

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. 

What It Takes

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.

Waiting ...

 Waiting is part of life. Today seems dedicated to waiting: 

1. Waiting to hear back about the mythical thing that is respite (person and agency are now ghosting me).
2. Tortuous waiting to hear back why my dental insurance thinks it's been canceled, after approving payouts and cashing my monthly checks. 
3. Pins and needles for the latest books by two of my favourite authors to drop on one day.
4. Patient marking of time until the next episode of She Hulk comes out.
5. Dogged pursuit of waiting for next steps in the conservatorship process.
6. Day by day plugging away at housework, bills, and workouts.
7. Waiting to hear back from doctors.
8. The constant "please let it have been a good day" mantra of refreshing the daily reports folder after 3PM to find out how James day actually went at school.

And so it goes.

(Epilogue: Day went okay, if off-schedule for a good part)

Inclusion in School: Fails and Suggestions

Where inclusion falls down in public schools

From Kindergarten through 4th grade, James was in a regular classroom, with a 1:1 aide and pull out services for speech, O/T and Adaptive PE. For his triennial IEP preceding 5th grade, I agreed to placement in the Special Day Class, as James was being impacted by classroom noise and not able to follow auditory instructions and was spending less time in said classroom.

Oh, how I wish I hadn't. 

The school ignored his IEP and tried to make him repeat the 4th grade because "they wanted to try something new". No prior notification or IEP meeting. They changed his ENTIRE program and work from what we all agreed to for no other reason (that I could see) than it worked better for THEM. They kept denying they were making him repeat the 4th grade until I called a meeting with a lawyer in attendance and proved, with homework from the previous year and the school directory of grade level of teacher classrooms (for his inclusion portion of the day), that they placed him back in a 4th grade environment for social interactions and class work. Then they claimed (with the lawyer present) that they'd "stopped when I requested it". I asked which was his inclusion class, and it was still with 4th graders.

I was a working single parent, going through a painful divorce, poor, and my daughter was going through a really rough time. They counted on my being too swamped to notice or put up a fight. They also counted on James not saying anything. Not for the first or last time, I was furious at how our kids are the ones who suffer from inflexible rules and a cluster school system that had no incentive to fix things.

Here are some thoughts, based on our public school experiences and the needs I saw in my son and others, that could better support schools, teachers, and inclusion:

• Keep 1:1 aides with a student throughout their elementary and middle school years if they are working well together. 
• Include the Special Needs or Special Day Class students in school events, such as back to school night, Book and Science Fairs, and Open House night.
• Set up an inclusion classroom to incorporate working/helping a special needs classmate as a special experience / reward.
• Carry the inclusion into meal times and recess in a low-key way (e.g., turns eating with them and playing games such as conversational Uno or catch). 
• For schools that have incorporated volunteer hours into student curriculum, consider providing the opportunity to work with inclusion or special needs students.
• Consider working inclusion into your school and classrooms as an opportunity to teach all the importance of empathy, getting to know someone, creative thinking, and helping others.
• Have monthly get togethers for the parents of special needs students - part social aspect and part information about programs available (such as summer camps or dentists who work with special needs patients), and how to prepare for the years ahead.
• Partner with local and national non-profits to fund or support some of the above - they are out there, and growing in numbers!
• Do not make the Special Day Class the place to send students because they are disruptive to the rest of their regular class (oh yes). 
• Remember that special needs students can hear what you're saying and understand more than you probably realize. They also do not forget it when they think a fellow Special Ed classmate has been treated unfairly. Sometimes it can be helpful to have a follow up touch base after an incident.

After all, the numbers of children and adults receiving a diagnosis of autism continues to grow. Adapting to changing classroom and student needs are imperative for a healthy society. 

Advocacy Tools When Behaviors and IEPs Go Awry

 I came across a Disability Rights California post in my social media feed that I wish I'd had several years back. It talks about steps to take and offers tools to use if there are Behavior and Discipline problems with you child and the school. The letter format for requesting a copy of their Behavior Emergency Intervention Report and the Checklist of steps to take if you child has been suspended or restrained at school are excellent. 

When James was in 8th grade, at a new school, his IEP was not followed. He was set up to fail. For the first time ever, he was suspended. That principal did so many things that were both hurtful and illegal that the lawyer I hired, who preferred to peacefully negotiate, took umbrage. 

I can tell you that documentation, being able to create a clear (and provable) timeline of events, including letters and steps like those mentioned above, were vital to us getting our position heard and James receiving the best placement for his (current) school.

Do not be afraid to use these tools. You need them to advocate for your child or family member. You can even use the letter template to request other legal services to support your child, such as a request for outside assessment by a non-district Neuropsychologist. You can also use it as a template to ask questions or request an IEP meeting. It's also great to have just in case. Fantastic if you never need to use it, but so very, very handy if something crops (or creeps) up.

The Disability Rights California has a well-organized online center of information related to Special Education, as well as Resources and Programs for those with disabilities and those who advocate for them. 

ABA-less. Again.

 I had a feeling this was coming. After some missed sessions and communication snafus, James' ABA BI person of almost a year is leaving us. It makes sense, they are a recent graduate and it's rare to remain in one place at that time of life. 

However, James is supposed to have 5 days a week of ABA. Now, he will have none. 

This is not the first time we've had this happen. Like teachers, ABA workers are usually not paid enough for what they have to do. Our kids take a lot of attention and patience. While I think the experience of working with special needs clients has rewards beyond money, it does take a lot out of a person.

In the past, losing all ABA services would have hit me hard. Now that we've weathered this loss several ties, I can take it more in stride. I can even see it as an opportunity of more time for James to try new things. Because now that we are settled in our new home and James in his school, we can do that.

James still really needs his ABA services, however.

World of Words

 Communication with James fro me continues to have its Dada moments. This morning, for example, he keeps wandering into the kitchen and asking if I have noticed the van or truck driving by outside. We live on a small quiet street, and I am setting up our week, so no. There are times when he will come out of his room and ask me if I like/hate Kim Jong-Un. Several times he has asked if our cat has eyes (ummmmm, take a look and yes/why???). Last night he asked about explosions. When I asked where, he replied "National Geographic".

I overhear him talking to his cousin or aunt on the phone and it sounds much more normal. I am so glad he is able to practice more expected types of conversations - it helps him feel more connected.

Our more normal communications happen by texting, Facebook posts, or walkie-talkie bursts ... and we are in the same house. Those exchanges revolve more around are we going out (almost always a "yes"), is there a skunk under our house (sadly also a yes, I suspect), did [insert name] really have the flu (yes), and does Disneyland cost a lot of money (yes again).

There is so much going on inside his head. I'd love to hear more. On the other hand, I will never be bored. These brief exchanges require history retrieval and sleuthing skills to figure out where they may be coming from, to get a bigger picture. I will keep encouraging communication, so he can make himself heard when he wants or needs to be heard.