Reflections 2024

 

This has been a year of goodbyes and new things. A season of trying to understand that by living, things will eventually end. A lot of missing things and empty places. Some new sprouts of things that Could Be in New Places.

A year ahead that looks exciting in a good way for James. That is what I am trying to focus on.

Over this past year I am finally starting to see and become involved in supports and groups I've been hoping for for decades: Online parent groups and forums that allow us to feel seen and mitigate our isolation and weariness. Inclusion in a school and the parents. New opportunities for my guy as an adult. 

I am thankful for those and hopes this is a wave that just keeps growing. 

Showing Care and Kindness

A common thread for parents and caregivers to those on the spectrum is a deep wanting to know what their child or person is thinking and feeling. After a while we think we know. We hope we are making correct guesses.

And the there are times when a sweet connection is made, and it is everything. 

I remember, after months of being told my son might be nonverbal, he began to make progress. I cried big mama tears when, at age 4, he said "I love you" to me.

The bear hugs (sometimes flying). The big smiles and starry, happy looks at me from his heart through his eyes.

The most recent illness, with me on the sofa, made better by a concerned text from his room to mine: "Mother, do you need ibuprofen?" or a shy shy "there there" pat on my head.

The Thank You card he insisted on giving me because we were sick on Valentine's Day and by the time a friend could take him to the store they were out of those cards.

Tonight, being offered a cookie that he baked with his class today at school (it was delicious). 

I am touched, and I am proud of him for being caring and showing it.

Spot Cleaning of Behaviors Past

After a week of being sick, with the holidays and  both kids' birthdays bearing down on me, I have finally committed to cleaning the house and decking the halls, one bit at a time. Some are regular spots, like the fridge, counters and stove. Others, well, send me back a bit in time ... 

When we first moved in, it was after being evacuated for a week from both old and new places because of a huge wildfire. Shortly after, COVID-19 shut us all down. Remote learning in a new house that was cramped with unpacked moving boxes and a working-from-home Mom was the 4th chaotic school change for James in about a year, after almost 10 steady years in the same district. It crashed with a divorce, deaths in the family, and the absence of his sister. 

Behaviors started up that he'd never had before, and they progressed downhill and exploded. That period was so intense that I blocked a lot of it out. Attacking spots of milk, food, and tissue on the walls, furniture, and floors today reminded me forcefully that at some point I let got of trying to get everything cleaned up because he'd only do it again and again ... I had my hands full, and I was losing my mind.

These days, James' teeth have been fixed, he has been in the same school for almost 4 years and back in the classroom for almost a year and a half. Family relationships are slowly being rebuilt. Despite some churnover, ABA has been a staunch support and parter for us as well as the school. While there is still a lot of work ahead of us, we are back in the realm of much more sane and calm.

I cleaned those expletive deleted spots, and it felt good.

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.

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.

Extra Sensory Days

 Yesterday and today, both my son and I have experienced what I think of as extra sensory days. For myself, this means I have no tolerance for interruptions of any kind and go through the day (with things constantly going wrong) feeling hangry despite not being hungry. I fix one thing and two more things break. I am thirsty and water does not help. I find a moment of calm and James comes out with questions about King Jong-Un, 9/11, WW I. and how to remove a child-proof cap from his meds. Also, to tell me he did not try texting people at 4AM and why is he being blocked on his phone?  Ahhhhhhh!

It started when I had to take James with me to my morning eye appointment, because school's out, this was the earliest I could schedule, and my eye sight's been wonky, even with newer reading glasses. James trailed me in, not very happy to be rousted out of been on his summer vacation for this. He kept sidling down hallways when he should stay put, stopping in said hallways and blocking others when we moved to the next exam room, constant verbal stims that included some swear words, and finally backed out of the room in the middle of me having a light in my eye and having to remain still. Mama Spidey-sense is a Thing. I felt like a drill sergeant by the appointment's end.

The staff, were all wonderful and understanding. No one was cranky or raised their voice. They were calm and extremely kind. I cannot say enough good about them. Especially when James informed me, back in the parking lot, that he left his drink cup in the last exam room. Grrrrrrr. No worries - it was up at the nurses' station when I went back and everyone was upbeat about its being reunited with its owner.

Back at home, the cats were punks and tested gravity with a vengeance and one escaped to the great outdoors, grounding us until he returned. Buh-bye plans to meet up with friends at the bowling alley. The fix on the van's a/c broke and then required a more expen$ive repair. The replacement part turned out to be faulty .... Buh-bye planned road trip and weekend gathering with friends. 

James has been extra bothered by noises I can barely hear and routinely tune out (barking dogs. kids on bikes, and leaf blower blocks and blocks away). It's left him in the yellow zone and more prone to swearing. I still have to semi-barricade the side door to dissuade him from going into the neighbour's yard. I feel it works better than me constantly verbally telling him to leave the door alone.

We are hunkering down at home. Thankful it's ours and quiet today. Thankful for the repaired a/c in our van and a very honest and trustworthy mechanic. Thankful for my mom, who picked us up from the mechanic's one day and brought us back the next. Thankful for understanding medical staff. Now I think the only thing we might need later is ice cream ...

Summer Social

Current State of Party Socialization

 We were invited to a small summer party by one of James' classmates. This is one of the wonderful parts of his school - social inclusion by peers - and their parents. 

James did his usual peripheral arcs around the main action at the pool and poolside food tables. The hosts were so kind when he disappeared to check out their video collection, cat, and side yard. When he'd reappear, his friends would greet him by calling out his name, like Norm in Cheers. 

It's hard for me to know just what James thinks or gets out of this experience. I know he looks forward to it, because these are the people he likes to talk about from school, and he participated well for getting ready (even to washing his hair and doing his checklist!). I hope it gives him good memories.

I got to talk with moms, a dad, and exchange phone numbers for bowling and other meet ups. I feel much more confident this year that they will happen sooner rather than later. 

Although we now have our own place and a side yard, it is not the greatest for entertaining James and his friends. I came up with a list of places we could meet up:

• Doran Beach
• Town Green
• Scandia
• Movies (rent a theater and watch a movie at reduced sound levels)

Hoping to come up with more.

The Little Things That Drag Me Down

It's been a week ... of increased eloping, use of the middle finger, trying to peek in the neighbour's windows, and BM woes. I don't have a concrete "why". This seems to happen periodically. 

I have been sleeping in the living room, to make sure he does not leave the house at night, and driving him to summer program because I the morning routine must be rebuilt (again) and I want the rest of his day to go as well as possible. 

He is riding in the front seat because he kept popping his seat belt and making a game out of it. Much harder to do in front. After the initial pushback (which got loud and somewhat physical), he now cheerfully hops into the front passenger seat on his own. I still have to check his buckle as I drive.

As I type, I have the door next to the neighbour's double locked, with a big basket of laundry on the floor in front of it and doorknob jingle bells on the outside door handle, to make sure he gets the message to redirect to a different activity and alert me if he goes for the door anyway.

His aunt has been marvelous, patiently talking on the phone, answering texts, and getting him out of the house and trying fruits again. ABA will be thrilled. It does take a village.

And the laundry - there has been so much enzyme cleaning, cleansing ... load after load (thank the universe I have in-home laundry and we are not on rationed water). I have to carefully time the drying because we keep having heat waves and our home has no a/c. 

Behaviour outbursts from anxiety that comes from visits (that he tells me he wants) with his father, constipation, boredom, and hormones.

I breathe, try to fall into calm, and get through these moments. I am lucky I can recharge in quiet moments with music, time in my garden, and friends.

Sometimes caring for someone with autism isn't dramatic, but instead a constant drip of small things that interrupt trains of thought and tasks attempted. Both can be emotionally draining and exhausting.

When Life Gives You Troubles ... Haiku

Loving and raising someone with autism means it affects you too. The isolation, intense parenting, truly soul-trying episodes you don't tell anyone else about ... there are many ways to deal with it. As I worked through my emotional storms, family fails, and life storms, I found that humour and creativity are great partners. 

Life can be ridiculous, as well as beautiful and heartbreaking, and normal is a setting on the washing machine. 

Putting the events of the day into words, in a semi-playful way help me separate from the overwhelming emotions. Back in the early days, when autism was making our acquaintance, I turned to online communities to compensate from the overall isolation and the Burbs' inability to socialize outside the box. Where I found other moms who had intensely real/surreal parenting experiences who were willing to share their poetic, coping efforts and support. 

Being creative is extremely therapeutic, as is listening to others vent with humor as a leavener. 

So Close ... or, Eloping

James had been having a stellar week, impressing school staff with his classwork, follow through with hygiene, and participation in the dreaded PE. He charmed the afternoon bus crew and earned praise from his afternoon ABA Team. 

Then this afternoon, on a late lunch break after a morning of computer and paperwork - a phone call from school. I know many of you have been there with me: my heart sank and my head drooped as I answered.

The good news is that everyone is okay.

However ...

In the middle of working on his PE laps, James veered off course and found a new hole in the school perimeter for a significant and random feat of eloping.

Unless you've lived this, I'll bet this sounds pretty harmless. Trust me, it's not. It impacts what James can and cannot do - it's restrictive. It means I am sometimes listening for elopement attempts at home, 24/7. Field trips and several programs are off limits for him. It is dangerous - for traffic, stranger danger, and especially for James.

It is often this way - stretches of great work and progress, followed by a hard check and possible reversion. Time now to breathe through it, then look for the reason for the event and processing of what happened and how to better handle a situation like this next time. Because the next time is always coming.

ABA - Why It's Needed

I am taking a break from paperwork and spring cleaning in my bedroom den, sitting in my armchair and listening to James and his behaviour interventionist (BI) make a schedule for their time this afternoon and following through. It's a deceptively easy blend of hygiene tasks, games, and breaks. 

I love it best when I hear them playing a game, because James wants to be socializing with others and this is a great, gentle way to give him practice for that. 

Over the past couple of years, James has stopped wanting to sing, play card or board games, or read together with me. It's hard to get him to watch TV with me. Most of our bonding time is in cars or taking public transportation (trains and metro transit for fun). I get it. He needs his own friends, his own people.

What is ABA?

Applied Behavioual Analysis (ABA) helps us both by reinforcing the importance of hygiene, game playing, and socializing. Communicating and planning (intention) are worked on as well. 

Why I think ABA Works for Us

Behaviours
I see ABA as important because for someone like James, who has communication challenges, is smart, and prefers to avoid activities not of his choosing ... behaviours have become his communication when words fail. Eloping, swearing, or inappropriate scripting ... ripping paper, destroying his DVDs and old CD ROMs, throwing things out his window. 

When James is stressed, he exhibits more behaviours. After COVID-19 quarantine started, we had spitting on the floor, paper in the mouth, wall hitting, head banging, and yelling - capped off with intense 2-hour meltdowns in which I was on high alert to keep James in the house, safe, and offered calm encouragement to breathe. He shut down on hygiene and participating in remote learning. He grew inches and entered puberty with a vengeance. He regressed on top of his previous regression. He started to exhibit extreme OCD and was almost impossible to transition anywhere in the house, let alone to the car or to an appointment at an office.

In-Home Support
Having ABA in the home (as soon as it became available) was a real life saver. The BI could be with James for remote learning, support hygiene, offer a safe and social connection. What a relief to have a team to break up the monotony of Just Mom. It also allowed me to keep working from home. I bought an air purifier and lots of antibacterial wipes. The ABA team all wore face masks.

Understanding Why and Setting Goals for the Client
The behaviours were analyzed by the ABA team to determine why they happened. A plan was crafted to redirect and support healthier self care, rebuild communication, and provide tools to help move us both forward when we got stuck.  Goals were set so progress could be reported and any new behaviours could be addressed as soon as they were noticed. 

The goals were aligned with what I advocated - James is a social guy who is curious about and likes people. He gets a lot of positive experiences by being able to interact with people and is almost giddy when he can communicate and create connections with others. He likes periodic contact on FaceBook and is happy to text and call people on the phone. All of his current ABA goals support that (as well as many of his IEP goals at school). He will need all these skills and tools after I am no longer here.

I know there are those in the autism community who feel the focus should not be on fitting into the neurotypical world, and I say good for them. Autism is a really unique condition. I would hope that any ABA program will align with the goals of the client, or those who understand and advocate for them as needed. I hope that there will be greater understanding by the general public and organizations for those who are differently abled. There really is a lot to discover.

When Time Is An Illusion

 "After Work", Doubly So

It's 7:00 PM. A full day of school for James, work for me. Then we had a home ABA session for 3 hours (yay!). After this I scarfed down dinner and hopped on to Zoom. I cannot diss Zoom. It's changed the game for me. I can now attend meetings I had to miss before (no time to drive or respite for James), doctor appointments (for my family, without using all my hard-earned PTO - recently, I can start scheduling care for ME), Tonight it's a presentation on IEPs. 

That's right. The lady with 14 years of IEP experience is watching an online presentation on the thing that is the partial cause of silvering tresses and sleepless nights. Because, hey - it's not like I was able to do this before. Who knows? I could learn something.

We are 15 minutes in and already bad flashbacks to 3 years ago But hey, then I feel better that my responses were warranted and that, eventually, James' legal right to access services were upheld. 

This is a very good program. There are parents and professionals online from all over the Bay Area and as far away as Fresno! I am so glad these are happening - I wish I had been able to attend a session like this when I was just starting out (although several teachers and administrators were very helpful).

Big shout out to the language - from the alphabet soup of acronyms to understanding nuances between "appropriate" and "best".  Great job discussing functional needs and related services. "Least restrictive environment" - always a goodie. Transitional IEPs - just when you think you've got it, a twist. 

And I did learn new things - ESY (extended school year) is any time outside of regular, scheduled school hours (in other words, it's not just summer school/session - it can cover weekends, breaks, or after school, if the district has resources for that). And schools have 10 days to come up with a response to continue services within 10 days of an emergency condition (of which we've had several over the past few years).

If you want more information, I highly recommend contacting the agencies who coordinated and put on this event:         

         

It's close to 8:30 and is my day over? Not really. I am James' caregiver, and he is testing the doors when he should be doing his bedtime routine. I will remain on duty until he's safely in bed. And then sleep light.