Still Standing

We've had quite a spell of winter bugs: colds, flu, and more. 

Winter has been very winter this year, with lots of atmospheric rain and periodic plunges into the 20s. We were visited by snow in our hills and we may not yet be done with this frosty and wet weather.

We participated in two ABA sessions at our local bowling alley and while the second session was much more enjoyable for James, it is also where we picked up norovirus. Gah!

Through it all, James has been really patient. He is doing great with making snacks with supervision - quesadillas and PB&Js. He has started to participate more for PE. 

Still here, and moving forward.

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 ...

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.

What We've Done

 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.

Skirmishes

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. 

This weekend, I needed James to complete part of his daily routine and he refused. For several minutes, and without losing patience, I kept in his vicinity and repeating the request to complete the activity. James became more upset and made a ball with his fist at my eye level. When I put my hand up in a "stop" motion, he punched it. Not terribly hard, but still.  He also chose to swear at me. 

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.

Editing My New Home ... Finally!

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. 

I am so lucky I was able to get the movers to squeeze us back into their schedule. However, rain was eminent, so for several months, James and I lived in an indoor box canyon. Then COVID-19 hit and school and work not only shut down, but resulted in more bags of stuff being brought in and dropped in nooks and crannies and new set-ups needed for remote learning and working from home. 

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.

Behaviors And Safety

 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.

He got off the bus and made it inside pretty well, though. I asked how his day went. "Okay" was the answer. I knew school notes would not show up online until after 3 so I encouraged a snack and down time. Then came the info from the school - eloping, unkind language, and physical acting out. 

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.

Dental Quest Nears Destination

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.

When he has younger, I'd have to have him lie down on the sofa, sometimes having to pin him down, to properly floss and brush. When he got older, this became harder to do. Luckily at that time, James did not like sugary things in general. For a year, we shared our house with another family, and James joined in the junior tooth brushing and flossing sessions.

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.

Because This Happens

 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.

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.

The Power of Pizza

 Picky Eating, Pizza to the Rescue

James and his sister were picky eaters as kids. Both of them eschew sauces, condiments, and mixing of anything except milk with ice cream - with super powers that always detected instantly any added powders or pureed vegetables. James went through a period of refusing to eat. 

For many years, he enjoyed a fairly stable palate of pancakes, blueberry muffins, or waffles for breakfast. Lunch was typically a peanut butter and jelly sandwich on whole wheat bread. Dinner: chicken nuggets, with apple slices and fries. He ate simple animal cookies and yogurt squeeze-ups for snacks. Occasionally I could get him to eat a banana or pizza. He drank water, milk, and apple juice. There were occasions where we got him to nibble on a carrot or broccoli. 

The life changed, and kept changing ... and not in a good way. By the time we entered lockdown, James was down to cinnamon bread and milk for breakfast and pizza for everything else. He still drank milk and water, and a little apple juice. Then he got picky about pizza - luckily preferring items with low sodium, seasonings, and processing.

In less than 4 years he grew a good 7 inches. Thank goodness for pizza. I was able to get him back to eating blueberry waffles and croissants. He developed a taste for garlic cheese bread. We are working on adding quesadillas with whole wheat, carb-savvy tortillas, pear slices, and some peanut butter on whole wheat bread or apples.

Despite good intentions, often I am exhausted at the end of the day. It is good to have a somewhat healthy option that I know will work. Fast, packable for lunches and trips, and easily found - pizza is our dietary go-to. 

Autism Parenting While Sick

 Okay, my second COVID-19 dose (Moderna) is taking more out of me than I wanted. Thus I am doing something I have not had to do for over a year: Parenting while sick.

As per usual, parenting a child (or teen) from your sickbed s a lot like normal parenting, only more so. I have experienced several varieties of this: married, with a toddler and preschooler. on up through the ages as our marriage broke up, until I was single parenting it across two households.

I found several useful strategies - many of which are captured in this nifty article: "Mom Is Sick! How to Parent Like a Champ When You Feel Terrible".

Cleaning standards were relaxed to a ridiculous degree. I fell in love with our washer dryer (and I am eternally thankful that I did not get sick at the same time my son did when we lived in an upstairs apartment with coin-op machines below that were not often free). Dishwasher? I love you too (when you worked)! 

My folks helped too, but my dad was not in the best of health, so we had to be careful. Their grocery drops were lifesavers. I was not able to connect with a lot of moms and we moved out of my former support network, so while help from friends did happen, it was not often.

I am proudest of the times (years ago) that I could set up a reading tent or get this kids to set up blanket forts while playing with me lying on the carpet nearby. There was also blanket time on the sofa with way too much Nogggin TV. For several years, James' big sister was amazing with taking over as activities coordinator and bringing me my water. 

This time: We each have our own bathrooms - thank you, thank you! Our new place is small, so we can yell encouraging things to each other through the walls. Thanks to the pandemic - I have a stocked pantry and home deliveries are still widely available.

ABA is also on hand, coordinating goals to help clean the kitchen a bit and keep himself on his school schedule. Tomorrow is supposed to be an in-classroom day. Ummmmm. We'll see.

I hate being sick when my kids need me. I now think about what will happen to James when I am not here ... and make another note on my pad: "Transition Programs, etc." - because, yeah.

More Dada Moments With Autism

"What just fell out of me ... brain tubes?"

Say WHAT?

James clarified this was not actually the case, relieving his mother's anxiety. But not the perplexity.

Often James' inner dialog becomes an audible monologue. At best, it's confusing with an occasional delight of Dada.

At it's worst, it's the unconscious zingers driven by emotion and tempered with nothing. There are no filters and it has caused trouble at school, social groups, and with his sister.

The only occasional silver lining is that if I listen, I can get a bead on what is going on with James without discussions that are often frustrating, because the topic is abstract, and James does not want to get into trouble.

It's also better than a nannycam - because if he's been watching rant videos on YouTube, it comes out, scripted, in the monologue.

No "Return To Normal" - And That's Okay

Autism: Day, night, 24/7, pandemic, "normal" life ... a different OS where you can cry a lot, but find your heart.

Photo is from a past walkathon for Autism Speaks. Autism families, sharing the love.

Autism Awareness 2020 Style

So, missed posting on April 2, but Autism is in the house (now more than ever), 24/7. Next week I begin week 4 of working remotely, and James' break from school and programming starts 5 weeks.

He hasn't been home with me this much since he was much younger, and I was on a break from work:

We have had some behavioural regressions, but things seem to be falling more into place, especially since his school has worked hard to get him and his classmates into an online schedule for school, which includes a mix of videos, assignments, and video chats.

My, how he loves those video chats!

If you know someone who has a family member on the autism spectrum, please reach out to say hello. We appreciate it more than you can know.

Fire Season, Power Outages, and Autism

September is winding its way to October, Pumpkin Spice is out in full force, Halloween decorations are sprouting, and California is officially in Fire Season.

New this year - Planned Power Outages from PG&E, who can't figure out how else to stop their equipment from causing devastating fires. We pay more for this extra disservice too!

So, James for several years has been sleeping with the lights on. He hates it when the power goes out.

Then the Tubbs Fire happened and we had to flee in the middle of the night ... a couple of hours after the power went out. Less than a week after we had to move out of the only home James knew.  Now power outages are even scarier.

We have social stories, plans, and some cool items from our Nana that do not need electrical power:

Dimmable Warm White Light & Color Changing RGB Smart Atmosphere Lamp, from Amazon

 

 LED Switch Light, available at hardware stores and Amazon

James is still very anxious about the possibilities of losing power, especially during fire season. This is something I do understand, having been caught up in the Oakland Hills Fire and losing most of everything I owned and my childhood home and neighbourhood as well.

This is the price we pay for where and when we live. Most of the time, it's wonderful. For the next 6-8 weeks, however, it will be a nervous time.

Disclosure: I was not paid to post these items. I uploaded the images and links to share as a resource idea for other parents in need.

Autism in Numbers

For myself, autism is 90% slog, 10% elation at breakthroughs and successes, at least 25% heartbreak with setbacks, 62% facing how my child cannot interact with his world, 110% trying to figure out how he can engage with and be part of the world around him in a way that makes his life meaningful.

It's 5,642% paperwork. 9,000% questionnaires. $$$ in endless unimaginable extra expenses (large and small) to cope with the disabilities. Paper filing to the 43rd power. The square root of 223% normal life for me. Advocacy into the infrared spectrum of colour.

Underneath and running through it all: love, tears, humour. Music, weird things being said, car rides, obsessions over flies and leaf blowers. Serious campaigns for eating, self care, and impulse control. Mean people, nice people, and YouTube. Higher numbers of kids diagnosed. Reduced financial numbers in state and federal budgets.

This has been brought to you by a tough morning after several brilliant days at the new school that suddenly devolved into self-injury. I am not precisely sure why he decided banging his head on the floor was necessary. We have talked, and hopefully this has been helpful for him. I want to hold him in a hug and make whatever caused it to go away. But he's not that little any more. Instead, I try for calm, work with him and his team, and love him hard.

We've had 2 TBS liquid ibuprofen, 7 crescent rolls, 2 glasses of milk and 1 waffle. Today is a percentage of compromises: 30% school, 70% home rest, and 100% let's try again and make better choices.

Developing Stories

Yesterday, James asked me where he would move to and what he would be doing when he grew up. This is the first time I have heard him talk like this and instigate a conversation like this. It is rather exciting for us both to start talking about it. I said he had time to think about it and come up with some plans. I also said he would have a home with me until he is ready.

Because we are looking again at moving. Costs of living are so out of alignment with what salaries are that even renting it too expensive. I'd rather take what money I'd funnel into covering my rent gap into a sustainable living situation. For a while I didn't see how it could happen.

Yesterday I got some good news that I am getting closer to making it happen. For a rare few hours, James and I were both blissfully and completely happy.

And that's okay.

James has been testing the hell out of the new school. I am so happy he is there because not once have they called to have me pick him up. They deal with the situation and are working on gaining James' trust. The messages I get back all consistently state that James is in the right place, they think he's a great kid, and they look forward to having him at their school. Some days it just makes me cry happy tears.

Meanwhile, we've paused ABA because, after a while of it helping, things got stuck in a rut and James started rebelling. He still refuses to bathe and has taken to trying to communicate via humming, because he's afraid if he opens his mouth, hair, or ash, or a bug will get inside. For those same reasons, he resists eating. He is almost 5' 11", so this is not great. A more stable home could help with those anxieties.

Moving is also a goal because the apartments are rough on James. He hates the noise and cursing that comes from the complex's swimming pool outside. And since he got caught in a rock fight some kids were having at the complex a while back, he no longer wants to go outside and walk around.

More as these stories develop ...

New School: Week Two

James started off the week spending the day doing processing exercises with Staff about the field trip incidents the Friday previous. A while day of story boarding what happened, how he was feeling, how it made others feel, and plans for how things could go better next time.

Storyboard from Wikipedia and  The Radio Adventures of Dr. Floyd 

Congratulations, he was told. After all your hard work, you've earned coming back to class - well done!

I want to say this has been a game changer.

Since then, James has dealt pretty well with ABA, trying to synch up with the school bus in the middle of our apartment parking lot being unavailable due to a noisy repaving project (which is where the bus is supposed to pick him up), and his teacher being out unexpectedly for much of the week. There have been behaviours, but they are smaller. A blowup about finding something unexpected in his frozen yogurt at home was brought under control by James himself within a very reasonable amount of time.

Field trips other that the group walks to the Farmers' Market are out for him for the summer, but he seems to be coping well with that. 

Yes, we are still talking about aides and principals who were involved with the most challenging school situations. But James also asked to visit some of his favourite counselors at the local Boys and Girls Club. We dropped by twice last week to say hello, and he was told he is welcome to come visit or some day returns over the summer. Yesterday he asked to visit the library for the first time in forever, and he asked about checking out a book (Matilda). This is a nice change!