Saw this post and man, is it my song:
Single autism parenting. Head of household. Sole breadwinner. Amidst natural disasters.Through a pandemic. There but for the grace of the universe, and a little (lotta) help from friends and family. James and I, together.
Lonely, proud, loving. Looking to make a change for good.
Our Spring weather has been flip-flopping between 30s in the mornings, rain, and sunny highs of 84ยบ. Last night I awoke to hear James coughing and sniffling. This morning it's more pronounced. While he did not have a fever (amazing how, with a little practice) a quick hand to the forehead can accurately gauge this, I called him in sick to school and ABA.
One last task for this afternoon/evening - a COVID-19 test. It's always a good idea to be safe. Also, if he does test positive, I need to notify his school and ABA. I really hope it's a negative test - otherwise, there goes my week. Fingers crossed that all our vaccines and boosters are doing their jobs.
James is an awesome person. He is typically easy going and is happiest when everyone around him is happy. He is smart and a sleeper, taking everything in and not showing it until he's ready. He has a fun, semi-goofy sense of humour.
When he was younger, James would skip, jump, and run about - as a very young child he loved to dance about. Now that he's well into his teen years he's discovered the joys of sleeping in lounging his best life in his large, comfy bed. Hormones and hangriness occasionally change his mood and attitude.
I explained that I was now removing the internet router, so no internet. I took it out into the garden with me. For several minutes I was breathing deeply, trying to calm down, review what could have been done differently, and listening to see if he would now attempt to open an outside door and elope.
Eventually, James did come out to show me he'd completed the activity and to say he was sorry. "I didn't mean to, Mother," he said. I believe him, but this could have gone very differently for someone who did not know him as I do.
I made sure he understood that I was not happy about his behavior and thanked him for completing his task and coming to talk with me. Then I made sure he had a good lunch to eat. The day went much better after that.
Over the past decade I have gone to trying to manage a household of stuff for 2 kids, 2 cats, and a set of parents in a 4br/2ba home with yards and a garage ... to compressing down to a 2br/2ba mobile home (with a yard!) for James, myself, and 2 cats.
There were many, many crazy hiccups and hitches over the past six years, so this was so not a smooth transition. I am very lucky to have had the help of so many family members and friends ... but I don't let go of things well in the best of times and for many years it's felt like the stuff was the best of my years as a mom. Result: I held on to way too many things, slung into bags and schlepped too many places.
The move into our current home was literally pre-empted by a historically large and long evacuation of most of Sonoma County to fight the Kincade Fire: First our apartment was given notice, then my mom and daughter received notice, finally, at 10 PM, we got the evac notice at our new place. We were gone for a week.
Luckily, I had an idea of how I wanted to set up the bedrooms and the main kitchen/dining/living room area and my years in a live/work loft resulted in good lessons in setting up living areas in one large space. I have sporadically been able to engage in a cleaning/organizing frenzy, then spend weeks at a time recuperating and trying out the solutions. I got the dishes and spices dealt with first. Then the cabinets over the washer dryer and the linen closet. Utility closet was next, followed by the pantry.
Today, I finally cleaned out on top, under, and around the kitchen table, aka ABA central. I got inspired by watching "The Home Edit". I am so happy to get rid of the school podium and to replace it with simple shelves from Amazon. Along the way, I re-organized the cabinets over the laundry area, James' games/videos under the TV, the room divider bookcase, the bench hidden by the table, and the bookcase and lamps that were not being used behind the table. Pausing after 4 hours - phew!
The disaster area that is supposed to be my work area now has more bags of stuff to sort. BUT: 2 bags and a box are leaving the house, the floor has really been swept, the runner rug is down, and most importantly, James had a huge smile on his face when he saw the results.
For one thing, I will have to up my housekeeping game. The ABA therapists need to have space to work with James. They also will be working with him to make sure he is done his chores in his room and bathroom, so I need to work more with James to make sure that this goes as smoothly as possible.
It does have its good side. Right now I am on the back porch looking at the garden and the trees above the creek.
Even better, I know that James is in good hands and he is interacting with people, which is really what he is enjoying these days - making connections outside his family and getting the chances for new kinds of conversations and playing card games like Uno, Guess in 10, and Would You Rather.
It's Friday! Made it through another week. Luckily there was strong coffee in my actual Peet's mug, as James did not want to get out of bed. He was snuggly rolled up like a burrito in a blanket on his freshly laundered bedding, loving the heck out of his bed. It would have made a great commercial. School and work wait for no one, however.
Breakfast is consumed, with a few testing skirmishes on his Kindle. We assemble his lunch and I make sure his reading log gets into his backpack so he gets points for this work. The van pickup arrives earlier than it has all week, coinciding nicely with the garbage truck roaring around our block on it's pickup run.
Without any prompting, James takes his meds. I acknowledge this with a "Great job - I really appreciate your hustle this morning" and bundled him into the van with him still in a playful mood. Inside, both my fists are in the air and I am silently shouting "Yes! YES!!!!"
Because yesterday, it was me chasing him around the house, bad word scripting galore, over the course of 5 minutes before he grudgingly took his meds. Looking forward to the weekend!
Engaging with James outside of school, chores, or self care has always been a bit of a challenge. When he was very small, we were able to do Music Together, reading together, swim time at the pool, or explore parks and beaches. He loved playing with his sister, although she was the leader, he had a blast following along with her.
Sometimes we can engage in cooking or brief letter writing. Often we bond over car rides or music we like to listen to. Whenever I make photo books for our year, I make a copy for James, as he enjoys looking through them.
The ABA folks are having much better luck connecting socially and recreationally with James in their afternoon sessions. I have reassessed my stock of social activities in our new place and have bolstered reading and our board games with cards and more social games:
I have always had cats, so James grew up with at least one, sometimes two, house cats. Over the years he has slowly gotten used to them, although Mr. B, the cat he's known the longest, used to hide around a corner to jump playfully out at him in surprise. James would inevitably startle, surprising the cat right back. Sometimes, I'd watch them both race through the house, only to surprise each other as they came to the same corner from perpendicular sides, and then streak away at opposing angles.
At school, James made friends with all the therapy dogs, who are usually Prozac in large, placid golden retriever form. I grew up with dogs, and know what it takes to give them a good home. I am not there yet, but it is my hope to someday get James his own companion dog. Someone he can take for walks, brush, and be a calm, friendly anchor in his life.
In the meantime, now that we have our own place again, in the time of COVID-19 lockdown we adopted a rescue kitten. Her fosters named her Pandora, which is actually pretty apt, as she is relentlessly curious, playful, and hell-bent on opening things. I renamed her Sassafras, and call her Princess Sassy. For the kitten and James, it was fascination at first sight. Slowly, he moved to pet her and now even meows at her, with her answering back. Sassy camps out in front of his bedroom door, and takes all opportunities to enter and explore. While this frustrates James, if she goes up on his bed, he is calm and charmed.
Several times, a cranky morning gets turned around by Sassy. He is starting to enjoy feeding both cats kibble, and is even talking to Mr. B, and starting to pet him as well. I have long known that animals can enrich lives. It is so nice to see this happening with James.
I have one big incentive to sweeten the deal: The Internet. If my pep talk gets ignored, the router is shut off.
It is amazing what can be done in so short a time. It's not just James who benefits from turning off the internet - I get off my screens and start doing more things too.
Occasionally, I will mention it is time to do something, like laundry, and James will get his clothes, toss them in the washer, add detergent, and turn on the machine. When this happens, there's a heavenly chorus, inside my head.
Other incentives are car trips for James. Yesterday, after helping me clean out our car, we went for a drive to the ocean. It was a gorgeous (if windy) Spring day.
Part 1 of 2 sessions of the IACC Full Committee Meeting happened this past week. It is a relatively new government organization created out the 2019 Autism CARES Act to help inform the government about the needs of the autistic community - most importantly past the age of 21 to include information for a full life's span.
Here are some topics that re standing out for me:
We completed our participation in the movement study with SSU's Kinesiology Department. Although I could not, for various reasons, get James to participate in the week 2 activities, we did return for the follow-up tests and exit interview. Although it did not go as expected, I am still glad we tried it. This is an important issue for those on the spectrum and their caregivers.
Below is a video shared with us about the findings:
After over a week of great days at school, today happened. My first tipoff was a very quiet greeting from the normally jovial bus crew. "Today was really rough," the driver said. The aide nodded. Both were sympathetic, but somber. James was antsy, denying he did anything wrong while swearing, sotto voce.
.jpeg "Bird head down, in the rain - should have stayed in bed")
I tried discussing these behaviors with James - he said he could not stand the noise. Pretty sure there's other stuff too but (1) communication challenges and (2) he is 17. Reinforced that he is liked by the people at school and I care about him but that these behaviors can hurt other people and they are not okay.
I tried talking and listening off and on throughout the afternoon. I let him know that I was turning off the internet so we could both be calm. Apology letters were written. He ended up going to bed early. I know there will be follow up at school. He has lost privileges for the week.
For us in the suburbs past the 2nd grade, if my kids were not doing the same programs as other kids, they were locked out of social events like birthdays and get togethers. Parents hesitated about coming over. The friends that we made seemed to move out of town.
Former friends were great to see at reunion events. Because of sensory overloads, developmental delays, and communication challenges (not to mention eloping), I could not engage completely with my friends and kids. There was friendly interest in our lives, but it was often not deep.
The older we all got the more I noticed the lack of people being able to slow down and break things into smaller parts. I would have been like that too, if not for my kids.
Here is something new to consider for Autism Awareness Month: Do you have friends or family members affected by autism? Are they still important to you? Consider doing the following:
So, dental challenges have gone hand in hand with James and autism to make teeth cleaning and appointments constantly on my radar. In fact, dental care issues are a common refrain with parents of children on the spectrum.
Then came the stressful, distressing, constant changes ... and a new like for Starburst candies and Sour Patch candies. Enter cavities and worse. James underwent sedation dentistry and his first adult molar removal. We moved to a new dentist for older kids and families, and for a time James increasingly tolerated x-rays and cleanings.
Then it came time for more sedation dentistry. We found a new location for this, much closer to home. Yay, no 3-hour round trip for a day of wait and sedation and wait some more.
Less than a week before his appointment, COVID-19 shut everything down. By the time I could get him in to the dental clinic again, his teeth had gotten very much worse. I am not going into details here - 2020 and the beginning of 2021 saw compressed stress and sorrow really hard life changes and loss over an 8-year period of time explode within the confines of lockdown and a pandemic (plus hormones). I did try to prevent it. I did ask for help, but there was none at that time.
Meanwhile, back at the clinic, less than 10 minutes into the sedation, I was asked in to speak with the doctor. This is never a good sign. The top teeth had deteriorated past cleaning and fillings. The only thing they could do was to pull them. All of them. I asked if some could be saved? Yeeessss, came the answer, but (1) they did not offer endodontics and (2) they either had to fix everything in one go or do nothing. My call. I told them to wake up James, we were not pulling his teeth.
Thus began a quest for middle ground to save James' teeth.
Again, not going into detail here. Suffice to say there were a lot of regretful head shaking and "not it" responses to my search through dental offices, multi-specialty offices, endodontists, his healthcare, autism agencies, James' schools, past dentists, the Regional Center, and ABA. Lots of tears and frustration on my part, particularly when James' teeth hurt him and all I could get was recommendations for ice packs and ibuprofen. Lots of calling in circles, with agencies and dentists recommending in circles that went nowhere.
Actually (and worse than nowhere), I made a dental appointment, after explaining special needs, severe dental care needs, and sedation dentistry needs and seeming to get a green light. We were kept waiting, then James took a lot of x-rays, more waiting, for the dentist to walk in and announce he did not treat special needs or do sedation dentistry. This was infuriating as this cost us time, money, and insurance benefits with no dental care or hope of dental care. The 3 referrals given to me went nowhere. The others offered were places I'd already called.
This all changed today.
My sister-in-law, who has a background in health care/caregiving and has been getting to know James better, was able to talk with her dental specialist and come up with a new referral that can actually help us. Our first meeting was today. We have a dental exam under sedation set for next month, with possibly some work being done at that time. There will be more sessions. It will be costly. But James will have the treatment he needs, not what is convenient for programs or clinics.
Today was a good cap to a longer than usual weekend, in which Friday turned out to be our day to lounge in pajama splendor, not leaving the house at all day, Saturday change up for chores and errands, and today a nice balance of slow and easy and to-do items checked off.
We finished up our 2-week participation in the Kinesiology's Gamified activity program by reporting in person to redo our initial tests and provide feedback. James had soured on this activity and he asked for Doritos afterwards, to which I agreed. Negotiations! Progress!
James also did his laundry, with minimal prompting, and emptied his garbage on his own initiative. We talked a bit about music and family. He talked the cats and petted Sassy when she went up to him and meowed.
This does not sound like much, but after the last several years it's more than a little bit of heaven.
We started out day with breakfast and then did our self care routines. James helped me bag up and load water bottles for recycling. He earned enough money from this to buy a huge croissant from the French Bakery at the Farmer's Market nearest us (we are lucky - there are at least 4 markets to choose from over the weekend).
He then came into Trader Joe's with me, greeting one of his long-term friends among the crew members and shocking him with his over 6 inches in growth since their last meeting. He helped gather groceries and then returned the cart after I'd loaded them into the van.
I deposited some checks and we picked up a Little Caesar's pizza on our long way home, through the gorgeous, sunny, West County Spring landscapes. While there was some negative scripting up until the trp to pick up pizza, the rest of the drive was peaceful.
At home, James helped bring in the groceries. He then took out the recycling on his way to check the mail. He came right back too, without prompting.
I have missed this!
Now happening LIVE from the United Nations, and available later for viewing: (PREMIERE) Inclusive Quality Education for All - World Autism Awareness Day
* UN Web TV: https://media.un.org/en/asset/k1p/k1pgh88oqn
* Facebook link: https://www.facebook.com/UNWebTV/videos/561654072063158
* YouTube Link: https://youtu.be/9xqT5gnwSw8
This is near and dear to me because I have fought for this for my son with two public school districts, pretty much since he was diagnosed. Some years were fantastic, and the best that full inclusion in a public education setting can be. Most years were not.
From Kindergarten to Fourth Grade, my son was in full inclusion in a public school, with a 1:1 aide. I was able to be a classroom assistant, so it was a real group/community effort.
In those years, everyone knew him. When I was on school grounds, and even around town, I would constantly hear "Hi, James!" and spot kids and adults waving in a friendly manner. He had access to and modeled behaviours of his peers. His communication skills improved. Almost as importantly, the kids saw James as one of them. In third grade, they were compete for a chance to be allowed to "help James" with a lesson, and his aide facilitated group games of catch on the playground during recess. These classmates were learning empathy and how to work with and accept those who are differently abled. This is huge for our future to work together in the world.
Watching this video is important because public education in the United States has been under attack for many many decades. They are the first state organization to have their budgets cut when states are reducing costs, teachers are not respective or compensated as they should be (and are in other countries), and schools are increasingly being made to be to safety net for families under attack, by providing safe places for homeless students, food and sometimes clothing for families who cannot afford to keep up with rising costs and low salaries, and hostile parent groups (and sometimes the US Secretary of Education) who are using religion and politics to undermine education in a free society.
This is a call to form a better future for inclusive education, which I see as better education for us all.
I encourage everyone seeing this to share and discuss.
Now that James is getting accustomed to bathing more frequently and has started to was his hair himself, I have been looking for ways to make this easier for him. We already enjoyed success with the bathing chair. James picked out a great new hair style that's simplified hair care. Trader Joe's saw us coming:
A few weeks back, I came across this delightful, multi-task enabling soap. It's simplified bathing sessions and reduced time in the shower, which is great in a drought year. James mastered opening the bottle and using it. Thank you, Trader Joe's - another reason to love you.
I read another mother's story about breaking points. Normally I try to not post too much about hard, dark, times that test my ability to cope and be resilient. But today, on reading this article, I am moved to post in solidarity.
Four years ago, I hit a point where I finally, completely understood how some parents can throw themselves and their children off a bridge, because they can take no more and cannot see a way out. I am not going into details, but it was awful. It looked like things were going from awful to worse with no relief in sight.
I am stubborn. While I never made plans to end it, I understood that pain completely, deeply, and for months on end. It's easy to criticize my weight gain, perpetual tardiness, and mental fatigue. I have been in the trenches with autism for at least 15 years - largely as a single parent and sole wage earner. It's a constant fight against isolation, lack of finances, pursuit of services, too much damned paperwork, and being on alert 24/7.
Things are much better now, but I've had to work damned hard for it. James is worth it. I am worth it.
If you're reading this post because you're curious about autism, this bleakness happens. It can come and go. It can overwhelm. If you know a caregiver, please reach out. Please be kind. It means the world.
This past weekend, with help from my SIL and friends, I was able to kick it up a notch or two. With their help, I was able to cheer my teen through showering and hair washing (hair washing!!!) before we hit the front yard and started to remove the jungle of weeds from the front, in preparation to installing a fence.
In between, a dangling ceiling light was fixed and discussions were had about dental treatments and the importance of taking care of yourself. James' Saturday reward was a milkshake and a drive through Deer Hill South (saw 4 deer, grazing on an abandoned front yard).
In between I will motivate myself through dishes, laundry, floor sweeping, sorting old clothes for donation, and more yard work.
There may be a trip to the Farmers' Market (first day of 2022!) or a plant nursery, for chores completed later this week.
While noise (dogs, babies, noisy kids, rap music, and power tools in general), crowds, and heat make outings uncomfortable for James he was able to enjoy Farmers' Markets, trips to the park, beach visits, and trips to the store. It's interesting that now that he is older, he can interact better, have more meaningful conversations, but be less tolerant of stressors. I think part of this is also due to stressors continually experienced over the past 4 years from moves, bad school experiences, and natural disaster evacuations.
I keep trying out options to get James out of the house, practicing transitions, and providing positive reinforcement when he stresses. Slowly I see this getting better. James should not have to live his life hidden away, and I will keep doing what it takes to help him move as confidently as possible in the world.
The United Nations is holding an Inclusive Quality Education for All Virtual Event: Friday, 8 April 2022, 10:00 - 11:15 a.m. EST.
This is incredibly important for our kids and future. Please see the link below.
While inclusion is not the answer for everyone, the world needs an introduction into the lives of a segment of the population that continues to grow. Understanding and reaching out makes for a better future together - socially, spiritually, independently, and financially.
Link to register - open to all: Inclusive Quality Education for All Virtual Event on 8 April
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.
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.
