Wednesday, November 30, 2022

Okay - I Can Talk About It Now

Autistic Teen Meltdown, or: What Happened on Thanksgiving 

photo of a cookie with Having A Meltdown decoration

So, we had complete #HOLIDAYFAIL this year for Thanksgiving. Still conducting an internal investigation as to why, but pretty sure the usual suspects (relative's house, with barking dogS, and more people than he was prepared to deal with) plus teen hormones that felt tired of being bossed around during his holiday week at home, noise, plus pressure to take a shower all combined into a huge, LOUD, meltdown in front of family, across a golf course (he eloped and I got him back, which set off the screaming and yelling), into the street, and in front of a friend during a food drop. 

It was awful. 

This was the first time my family had seen what a meltdown looks like from James. The stress in keeping calm to manage the meltdown, the embarrassment of the outburst, the pain of seeing my family want to help but not sure what to do, and finally the realization that I just had to take him home and there would be no dinner with the family this year overwhelmed me and I started to cry, which freaked James out. Because as a rule I do not cry during meltdowns (where he can see me). It just doesn't help.

This time, some of the things he yelled at me were extremely hurtful, so I let him see me cry. So now remorse was added to the mix. "I'm sorry, I didn't mean to" came after each tirade. 

When we were home and things calmed down (reassurance that even though I did not like the behaviours I still liked him, being in our quiet home, and cessation of crying), he gave me his version of a hug and said again he was sorry. I thanked him for that and then told him I needed some quiet time now. 

I also said there would be consequences, so no internet and very restricted phone time. I unplugged and hid the router, put his devices in a safe place, and the internet stayed off through Sunday. He earned phone time so he could talk with people. Having myself received the Silent Treatment on various occasions and having a pretty good idea how something like that would affect James, I wanted him to be able to talk with others while still letting him know the meltdown was affecting his privileges.

Oh the talking. We covered how feelings were neither good nor bad, it's how you handle them. The importance of communicating with people before a meltdown happens. Practicing phrases we can say to make that communication easier.

Without prompting, James wrote apology notes to myself and other family members and delivered them personally. When he says he is sorry and didn't mean to, I believe him. I love him to pieces. I also knows that his life will be a lot better if can realize how his actions affect others and he makes it his priority to better manage them. 

Today is Wednesday - it's almost been a week. I can talk about it now.

Some good (IMO) links for understanding meltdowns (and no, I have no affiliations with any of these - I looked at the posted content and thought it was very appropriate for our situation):

Thursday, November 24, 2022

Support and Thankfulness

 "We know that this can be a stressful time for you. If you need additional help from a live person, don’t hesitate to call the Autism Speaks Autism Response Team at 888-288-4762 (EspaƱol 888-772-9050) or email us at " -- from Autism Speaks' blog post Five Things To DO While Waiting for an Autism Evaluation

James, before diagnosis, playing peek-a-boo
James, before diagnosis, playing peek-a-boo

We as an overall population have all been learning. James had to wait 5 months for an official evaluation, that's how backed up the clinic was. The only people who could help immediately were the North Bay Regional Center, who did the initial assessment and immediately wrote purchase orders for speech (twice weekly), O/T, and multiple services from ELI (in-home development work , group play sessions, and parent classes). Through all these great agencies I learned on-the-fly and was given many tissues, hugs, and encouragement.

Things were so different then. His pediatrician told me J could not possibly be autistic "because he looks you in the eye".

Please share this link. Autism Speaks is not perfect, but it's trying its best to reach out and support across all 50 states. And the holidays can be so rough.

Thankful for all our help and blessings this year. For all our families and friends ... for every new skill mastered ... for every new person who understands just a little better what life can be like for someone otherly abled.

Monday, November 14, 2022

Indepedent Steps

 James made a PB&J this weekend. All on his own. I am excited -
the quiet deep excitement with the word "YES" playing over in my head. 

Photo of a peanut butter and jelly sandwich

At was all the more terrific because he did it when he was frustrated. The pizza delivery he'd earned was, shall we say, messed up on the delivery end. He was hungry. I suggested he make himself a snack, something like he'd been practicing in ABA sessions, like a sandwich or quesadilla.

He said "Peanut butter and jelly? um, okay - yes!" Out came the jars. He found the bread and pronounced it "good!" and proceeded to make his sandwich. He needed a little help with cutting it diagonally, but that's it. No prompting, no fussing, just calm and confident sandwich making.

We celebrated by visiting Diagon Alley via the first Harry Potter movie. James faded out soon after that scene. I think the shouty Dursleys were really his favourite part.

It hit me again this morning, as I was doing errands. Driving the van on a clear sunny autumn morning, where the flaming trees showed bold against the blue sky, yet the sunlight felt warm and mellow inside the car. Again, the quiet "Yes!" and then "Thank you". Because we are here again, moving forward. James is using life skills we've been working on.  

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.

Monday, August 22, 2022

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.
Mr Bean demonstrates 4 stages of waiting

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

Wednesday, August 17, 2022

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.

Inclusion defined with Skittles and words: Making diversity work.

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.