The Parental Mirror

Years ago, when talking with my daughter's therapist, as I tried to be there for both my kids while supporting the family with a F/T job as my family and home broke painfully apart and crashed, I was given the best piece of advice.

"Your daughter needs to see you happy," she said. "She needs to see you making time with your friends and modeling positive social and coping strategies."

At the time I felt despair, like falling down a well. I was overwhelmed, unequipped, and isolated. I felt like the worst parent ever.

Then I tried even harder to catch myself first before hyper focusing on "finding a fix" for my kids.

I have gotten better with practice. I have realized this not only applies to my daughter, it also applies to James, who has a highly developed empathy with those around him. On the plus side, he models "good" behaviours if they are around him and he can, to an extent, read a room. On the stinker side, it gives him a fiendish ability to push peoples' buttons.

But I digress. Fewer years ago, I was talking frankly with my son's ABA supervisor, about the overall regressions and socially unacceptable behaviours that roared out in the face of a horrible 8th grade experience, second evacuation due to wildfires, and COVID-19 lock down. I was so desperate for help that despite trying to bubble myself so I could remain on call for my family members with already compromised immune systems and not lose any time at a severely unsympathetic job - I called ABA and told them I wanted to continue in-home services. Thankfully, it was the right call.

"Your son is begging you for attention," he said to me. "You do not realize how stressed you are and how that is affecting him. I know you have a huge load of responsibility, but your son NEEDS you." This set me on the track of thinking again about the Parental Mirror, as I like to think of it, and how important that was for my kids and myself. 

With this supervisor's urging, I was able to investigate IHSS and becoming my son's caregiver. A family friend, who also is an IHSS caregiver for her disabled son, urged me on further. I discovered that an IHSS staff person had misled me in thinking I could not be my son's paid caregiver (at 15 hours a week) if I also worked full-time. To make a long story short, I transitioned from working 40 hours a week at an increasingly stressful job and not being paid for caring for my son to being paid to care for my son (currently at 63 hours a week) and (all things considered) earning more take-home pay. 

I am SO much happier, and it shows in my son's reports from school and his overall demeanor. It has taken me a full year to stop feeling burned out and that I can do more besides caregiving for my son and start living my life again.

Everyone will tell you that, as a Special Needs Parent, you are crucial to your child's development and well-being.  Next time you're feeling stressed and downhearted, take a look at yourself in the Parental Mirror, and give yourself a boost, love, and encouragement - just as you would to your kids. It works, and you're worth it.

ALL The Things - To Do List

 So today I woke up at 4:00 AM, courtesy of my head cold and next door neighbours who like to slam doors as they let the dog out, take the dog for a walk, come home from a walk, then leave for work.

After being sick for almost 2 weeks and finally getting 2 nights of good sleep, I was ready to Do The Things - ALL The Things. So it wasn't bad at all to start that early. I made my evil dark coffee and drank it while I made The To Do List - Christmas day menus, items to get at the store, admin tasks, reminders ... all of which helped me organize the sequence for the day. 

I made breakfast for James and made sure he had his meds. I bagged up water bottles to recycle and had James dump his launder in the washer to be cleaned. List and recycling in hand I shepherded my guy into the van for stop #1: Trader Joe's. Although it had been open only 15 minutes, the lot was full. Luckily inside was not so bad. The recycling got taken care of. Wow, milk has shot up! I discovered that the one thing they were out of was what I wanted for Christmas dinner's main course. 

Okay, back at the van, James helped me load the groceries and then he returned the cart. Off to Stop#2 Kohl's. Avoided crowded route and entered a store with very few shoppers (I remember from my Christmas working at Capwell's that you have to get there before 11 to avoid crowds). This made it easy for James to pick out a gift for his dad.  There was no one in line and we zig-zagged through the line like the beginning of Shrek in Duloc. I swiped my online order on the way out - voila, James now has a Christmas t-shirt!

Stopped (#3) at the independent grocer on the way home and had a lovely conversation with the butcher, who saved Christmas! James' Cheez-Its were and on sale on the way to the register, so I got enough to last him on vacation. 

We tried looking for deer on Deer Hill South, but saw none. At home, James helped me unload the car and he took a break while I put away food, tossed his clothes in the dryer, and took a breather. Then I helped James get started on a shower and hair washing, which we accomplished in under an hour!!! Clean clothes were sorted, folded and donned. Hygiene list was completed.

Next, we hit the road so he could visit with his dad, play video games, and give him his present. They had a good time. I got to gas up the van for the cheapest gas around and hang out in the redwoods for a nature break.

On the way back up, hanger started to set in (not too badly, though), so we celebrated being on vacation and shower/shampoo victory with a pizza and shake from Amy's. Now it's dark again at just after 5:00 PM, but I can rest. It feels so good. 

Autism Today

Today on Autism, we covered good phone etiquette, emotions management, and hygiene promotion (self shower and shampoo). I found and re-assembled his electric shaver components, which he then used to shave chin hairs and trim long locks that got in his eyes. He did a great job in a good amount of time.  

We cursed the leaf blower that someone tried to use across the street, until sheets of rain discouraged them for the day. On a plus note: James used his head phones each time they tried, after only 1 initial prompt.

I did more paperwork ad emails for the partial conservatorship while monitoring progress in the bathroom. His hair is curly after a shower. I try to not be verklempt.

We discussed:

• World politics (Russia and North Korea - why are they fighting)
• Geography (are North Korea and North Carolina the same type of thing (county, state, something else)? 
• Who is going to work (of our acquaintances)? 
• Weather check-ins (Is it raining? Will it snow?)
• Where are our cats?
• Have I ever been to Spain, Italy, France, Germany, China, Japan, North Korea, or Disneyworld?
• Why is Sassy meowing so much?
• What did I used to do in High School (on weekends - hahahaha, that's another lifetime ago!)
• Going to see Christmas lights

Writing Christmas cards sadly did not happen this weekend. I'll keep trying on that one. He already picked out cards to send during yesterday's visit to Cost Plus (I am not affiliated with this company and am still calling it that, I know it's a World Market!).  

Overall, a good day. One more week of school until winter break!

ETA an hour later: Um. I spoke too soon. Someone tried to trim their bangs with the trimmer. Oh my. Well, it will grow out!

Soothing Bathing Hour, With Chickens

When you are a caregiver, sometimes you have to get creative with your care. This is doubly so when both of you are coming off of a week plus of being sick (first James, then myself). For example, after clearing some dishes and laundry this morning, I focused the day on showering. This means almost two hours of psyching up and prep (clean bathroom, wait for clean PJs from the dryers, towels out, wipes and bag ready). The actual showering planned to take place during the warmest part of the day, when washer and dryer will be free to deal with his bedding. 

Then comes the bathing campaign, letting James know it's eminent, and literally catching him in a bedroom-bathroom loop that's lately been so find of, and sweeping him down the hall and stocking the bathroom with towels and choices of shirts and PJ bottoms for after.

While he preps for the shower I sweep the bedding into the washer (so glad it's a huge one and can take it all), add extra soap and turn it on. 

I am sitting in the armchair, encouraging the process - literally calling the plays, clapping, and giving out encouragement. I found something new to distract him from complaining and stalling: an online chicken timer, set to piano music: 

This helps us both not go down the meltdown hole and keep a our sense of humour.

Then, while he's working on shampooing his hair, I will get temporary clean bedding on his bed.

When shower sessions are over, the day is still warm and it's time for a milkshake reward.

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.

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.

End of a 3-Day Weekend

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. 

Trader Joe's To the Rescue, Again

 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.

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.

Spring Cleaning, Chores, & Life Skills

Sometimes it's hard to get James and I moving on Saturday. On top of weekend inertia, several years worth of a full work week and single parenting my guy means I am exhausted by the time I hit Friday afternoon. Mornings with no demanding schedule are so peaceful and seductive. Sometimes I rouse my reading or leisure activity to realize it's already noon. 

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).

Today we tackle his room, removing food and dishes (teens!), trash, and fixing his bed. A bag of trash will be removed. It's also shower day again. Today's reward will be a drive through the Spring countryside. 

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.

 

It's the Little Things, Again

James had a great day yesterday - he made the van pickup, had a great day at school, and (after initial resistance) had a great ABA session. We took a victory trip for chocolate chip cookies and Little Caesar's pizza. He had his down time. He was a good sport and powered through the group Kinesiology exercise activity, even though it was a physical challenge for him (walking on all fours - at over 6 feet and in our cramped house - yeah, this was tough).  

The only downside - he did not want to go to sleep. I finally pulled the plug on the internet shortly before midnight. Even then, he kept popping out of his room to the bathroom and back for another 10-15 minutes. After a night of my sleeping in the living room (to keep an eye out for any residual behaviours), it was time to get up. 

James did a good job getting up and following along with our morning routine. What helped was communicating over walkie talkies that he won at school for earning points and ... being allowed to discover how the frother worked. 

Oh my, that smile! He was really tickled to try it out. I think I see a lot more frothed morning coffee in my future.

Fri. Yay. Go!

 It's taken six months to fine tune, but James and I now have a morning routine that supports him and his hygiene goals. Also our collective sanity.

After several trials, I found this is our winning schedule:

• 7:00 - First wake-up check
• 7:10 - Second wake-up, with lights (if needed) and hygiene kit and clean clothes
• Check, clean and trim all digits
• Fresh clothes
• Wipes
• Pleasant, calm conversation
• 7:25 - Out in the breakfast area, eating set out meal
• Can check phone for text messages
• Take meds
• Put on shoes and jacket
• I prep his bag lunch and we prep his backpack with mask, water, & homework as needed
• 7:50 - Ready for school van pickup

Needless to say, it rarely goes like clockwork. That's not the goal. The goal is a routine to chart our morning course for a good start to the day. There is Wiggle Room built in, because: life, teens, autism.

When the morning routine hits all its beats on time (like this morning) I feel like bursting out into song.

Back to the Classroom?

 Should I? Shouldn't I? -- Adults and parents struggle with this quandary. Autism parents, doubly so. 

Most recently, whether or not to allow James to return, part-time, to campus. 

Nay:

• While staff may be vaccinated, the students probably are not. 
• I am not comfortable allowing him to ride the bus until he has been vaccinated. 
• Change in schedule and routine, at a time when he resists both bedtime and morning wake ups.
• Food. What to pack and will he eat? Oh nos.
• Bathroom. Sigh ...

Yea:

• Get him back on a schedule. It will be hard no matter what. Slowly but surely will help.
• James has already received his first vaccine shot. 
• Staff are trained and used to James.
• I can drive him, as the campus is maybe 10 minutes away and I do not have do leave the car.
• It's only 5 hours a day, 2 days a week, with only 1-2 other students in the room.
• We get a break from each other.

Result?

Despite receiving notification that there was a COVID-19 positive discovery on campus (the first week back), it was reassuring to be able to talk with the school and learn it was not related to his program. The staff is so positive, I feel confident he is in good hands. Proceeding with caution and hope.

Lalalalala - Healthcare Type

So, I've known for a while that I cannot die while James is alive (the autism parent joking / not joking meme).

Now, looking at the copays and rises in healthcare coverage for the coming year, I realize I cannot be sick or go to the doctor, either. 

Which is a shame, because that could bring on a panic attack if I think too hard on that one. 

Cue the lalalala's, which are cheaper than Prozac ....

IEP via Zoom a la COVID-19 in 2020

 So James' triennial IEP was last month. Assessments were largely done online, with some phone calls. Because of COVID-19 and lack of guidelines for IEP testing and enforcement during a pandemic, this all happened very close to the IEP meeting. Legally, this all needs to be set up and results and proposed goals available two weeks in advance of the meeting. Normally the meeting and attendees are set. I hardly ever get the test results and proposed goals before I sit down at the meeting table, but that is another story. 

 In fact, with 10 days or less before the meeting, I still did not have confirmation that it was happening and who was attending. I had to call to to confirm this, as I had to plan my remote work schedule and PTO requests. The interview call with the teacher was 2 days before the IEP. 

I get it. Normally, I have notes prepared about how James is doing right now, where he needs support, and thoughts about goals for the coming year - not rubber stamping goals, actual helpful, educational goals. This year I had almost nothing.  

I was so nervous, because James' placement is up for discussion each year now. Luckily, this was renewed for the school year and what I still call Summer School. The meeting participants joined the Zoom call. It was one of the quickest meetings I have had for James. We are all iffy on the ability to set and monitor effective goals but we are giving it our best shot. I can always call for a meeting later to discuss or ask for amendments. 14 year into this and we are still establishing baselines ... 

Tonight, 49 pages and an attachment file with notes and questions, I have reviewed, signed, and returned, with comments/questions. I am exhausted.

Dining Out Becomes the Hot Seat

A few weeks back we our temps hit the hundreds, which is pretty danged hot for our area. We do not have a/c in the new place, so James and I supported a local restaurant by doing some early patio dining.

We wore masks until it was time to drink and eat. For most of the meal, we were alone. Then the few other available tables filled. Inevitably, someone brought their dog to dine out with them. Two, this particular evening.

WHY?

So James noticed right away and started getting nervous.

I get both his reactions and the presence of the dog. I grew up with dogs. I've been bitten by a strange German Shepherd dog that came out of nowhere and almost caused me to get rabies shots until the person "watching" the dog came forward. I learned to recover my confidence around dogs. James and countless others like him have not.

Dogs are the new kids. I am pretty sure, however, that there was a "no dogs on the patio" sign at the restaurant.

We were suddenly in the hot seat. I made the call to box up our stuff to go. I get tired of this.

PS: The food was delicious.

Road Trip to Serendipity

It was four years ago today that I decided we should take advantage of summer in California and get out in the gorgeous weather and scenery. James loves the Golden Gate Bridge, and I was missing the SF Bay Area of my years growing up. We talked my friend into coming along for the drive and we all zipped in my car down 101, drinking it all in.

At the bridge, the fog was boiling over the coastal hills and blowing through the gate, but there was no fog horn. James LOVES the foghorns on the Golden Gate Bridge. We walked a bit on the bridge. When the fog is coming in, however, the wind can make is hard to stay upright.

A guard saw us and came over. I explained that James was hoping to hear the foghorn, and asked what triggers the foghorn, because we could not see across the bridge because of the fog. He kindly explained that the fog has to be socked in low on the water before the foghorns turned on. He was watching James as he danced about in the fog, and he could tell there was something special about him.

"I tell you what," he said. "I'll radio to the engineer to go flip the switch and turn on the horn." Wow! Really? They could do that? No trouble at all, he assured us. It would take about 15 minutes for the engineer to get to the control room and get things started. We thanked him many times. James decided he wanted to head back to the car, so we did.

We pulled up to the first turnout on the Headlands side of the bridge, looking at the cool, roiling, silent fog that already hid the entire bridge from view. A few minutes later ... the fog horns began. Just for James. I will never forget it.

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.

When Remote Is Better

So, full disclosure: my mileage for most parental and family things has so much variance (how much variance?) ... so much that one can call Ollie-Ollie-Oxen-Free over to me at the extreme range of Autism Lifestyle - that's how far out there I am.

So, the shelter in place as a result of COVID-19 has been - kind of a godsend. My life has SLOWED.

• I am lucky to be able to work from home. 
• I don't have to spend my lunch half hour dashing home to get hime ready for school / established at home until I finish my last couple hours of work. 
• I can flex for meals on-the-fly for us both. 
• I get to see what he is doing for school and assist at times.
• My breaks are in my own garden and it feels like a miracle of peace. 
• I can set up an office and work/take calls on my back deck and nature watch. 
• It feels so healthy. 

I see benefits for James as well:

• The paper in his mouth stimming has almost vanished.
• Escapes to the bathroom are greatly reduced.
• His mornings are more relaxed while getting back onto a schedule because I don't have to wrassle him awake / dressed / breakfasted before getting him on the bus in the mornings.

I give a million kudos to his teacher and support staff at his school. They have been consistently upbeat, accessible, calm, kind, and encouraging. They make our world a better place.

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.