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.

ABA, O/T, Meds, and Drink Mixing - How's Your Summer?

James has been triggered by what most people consider every day sounds: dogs barking, vacuums, leaf blowers, hair dryers, edgers, trimmers, young childrens' voices and crying. His behaviours and scripting kept him out of program even before COVID-19 hit this year. Goal: Work on lessening the impact for better social integration.

Practical: We now have our own home instead of being in the apartments at a busy cross street. James has headphones that he can use. I and his support crew are providing more "expected" scriptings he can use to communicate his discomfort and displeasure. We have started meds for anxiety. 

OMG, yes - we have started meds for anxiety! (there is dancing going on, offstage.) ABA, O/T, and his psychiatrist have all ganged up on him with the most positive of support. It's made a huge difference, along with the new meds having a milder taste and smoother emotional ride, so to speak.

Services: 

• ABA has started in person park sessions. They are tough. James brings out his button-pushing, inner toddler worst personae and pairs it with shooting the birds randomly. So, glad not a lot of people loitering about. Kicker? James will wear his mask, more often than not, but then shred his headphones or snack. Gah.

• O/T has started working with James over the video interface. We are working on eating, self-care (hygiene tasks), and relaxation techniques. Big excitement last week: James made a smoothie in a blender. He tasted his creation (the tiniest of tastes, but he did it). And then I got to finish it - it was very good! James tolerated the sound - probably because he got to push buttons and watch the blending speeds change. 

I got so happy, I made blended gin fizzes the following weekend. 

Here's to summer!

Seeing Summer, Together

I am really enjoying traveling the back roads, getting to see the country in summer with James. James is too. Road trips are our quiet time to just be together, getting out of the house and into life, away from getting stuck in our own heads. When I told his O/T about this, he mentioned they were good for James vestibular integration. Best of all, it's not impacted by COVID-19, as we do not get out of the car.

What started it all - going to "see the deer" at Deer Hill South.

We have been dealing with heightened anxiety behaviours at school, in public, and at home for over half a year now. The OCD touching things and incredible time it takes for him to go anywhere (out of his room, down the hall, into the car) have gotten a lot better. We are getting more into a routine of getting him back to doing chores and then doing something he enjoys, like going for a drive.

We make our drives into our own little games. I call it Discovering New Roads. James likes seeing "bonus" animals, such as skunks, possums, and bats for out night drives and quail, white egrets, hawks, cows, and coyotes on our day ones.

My "bonus" sightings are the beautiful countryside and nature:

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.

Discovering New Roads: Sweetwater Springs Road

We live in a beautiful art of the world, where there are also many roads to explore. James and I are having fun expanding our looking for deer (the moms and new fauns are out now - it's adorable!) to discovering where that side road goes that we are usually too busy to explore.

This week, James wrapped up a good week's work and wanted to drive along Westside Road. It's a pretty Sonoma County country road, full of curves, dips, farmyards, vineyards, and old country homes. Scenic and relaxing.

Part of the way there, I caught side of a side turning we'd noticed before. "Want to see where that road goes?" I asked. James said "Sure!", and off we turned, onto Sweetwater Road. 

It curled away from the main road, between the folds of rolling hills, lichen-decorated boulders growing out the ground, shaded by shaggy California Oak trees and wandered past cows grazing impossibly on steep hillsides, ridiculously close (for us city slickers) to the road. 

The car tires thrummed as we crossed one cattle crossing grate after the other. California quail scuttled and fluttered in front of us, crossing the road in the late afternoon sun. I drove slowly and carefully, as the road was narrow and winding, and much patched in places. 

The road crested a hill and dropped us down in a valley, where just like that, we were surrounded with ferns, dense redwoods, shadow, and  running next to a creek, fed by deeply grooved channels in the earth, running down to meet it. It felt like entering Mirkwood, and I told James so.

Unfortunately, we did not have enough daylight to follow the road to its end. We plan to try again this weekend. 

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.

Flexible OT Jam Session

James had a great OT session yesterday.

First of all, let me say that I am thrilled that James has progressed from missing all OT sessions (despite our best efforts) to managing his own school schedule and being ready for the remote OT sessions on Google Chat.

Second, each session is different, with his OT teacher being flexible to accommodate how James' day is going. This keeps James interested.

Today I got to watch some sensory breaks with stretches, breathing, and a sensory brush. His therapist then caught sight of the practice guitar on our kitchen chair, and turned the session (which had been stalling out) into an impromptu play session with guitars. He got James to strum a bit, then played songs and invited James to guess the song that he was playing and to sing along. It was great!

James is still not exercising much (and our heat advisory is not helping that) but this does help get him moving around and shaking things out. It also gives him an opportunity to engage with someone in a playful, back and forth manner, which James loves.

Virtual Talent Show: SIP Edition

Each year, James' school puts on a talent show. I give them all kinds of kudos because those productions are not easy, even without special needs.

As this is our first year with the school, I did not know what to expect. Then there was this shelter in place thing -- how to coordinate the show, view performances ... wow. In the end, it was so worth it.

The kids LOVED it. There was 150% cheering and support for every effort. The event used pre-recorded and live segments, and we all watched on the Chromebooks.

I think it's one of my most favourite school events in the history of my kids' school events, the other being my daughter's amazing and adorable performance as a rainforest porcupine.

 James chose to ... be the announcer for his classroom's contribution. We taped his lines and mailed them to the school. He nailed it - so proud!

PS: This is the first time that James was included in a school production since his one-of-a-kind Third Grade class (as a full-inclusion student), when his wonderful teacher and fabulous aide together got the entire class to perform an ocean-themed musical for parents and the school. He was a lobster for that one. 

Thank you, Anova teachers and staff!!

Vocalization, Education

Today, during a school assignment, James paused to asked me, "what is vocalization?"

"Well," I answered, "it can mean anything from talking (being vocal), to singing, to ..."

"What, Mother?"

"Ululation."

Cue YouTube search, which found us watching this:



Learning can be fundamental!

Safe, in the Time of COVID-19

Three snap-thoughts on the word "safe" - and a nice resource link.

One: When one's senses are continuously dialed to eleven (auditory and skin sensations in particular for James), it can feel like constant bombardment. Throw in losing a family, home, school/community, and trust in people you are attached to staying with you, and things become treacherous. Oh, and rather suddenly, you're a teen and shot up 6" or more in less than a year? To misquote Douglas Adams: Doubly so to all of the above. Safe becomes haven, sanctuary, release.

Two: Things that make James feel safe now? Not being in the apartments. His current school, Anova. His own room with his own bed. Being surrounded by really tall trees.

I asked him about this recently. This has been his incentive for keeping on-task and completing assignments: going out for a drive at the end of the day. He keeps asking to go to the redwoods. I asked if it was because they were so tall and calm and he said "Yes".

I agree. Being surrounded by tall trees in nature for a visit is very relaxing. The air is stiller. Sound even gets muffled.

Three: James has definitely noticed COVID-19 and the crazy fails going on in our government at the top levels right now. He's home. School is on a laptop. No more respite or ABA visits. Most of us wear masks now outside. He watched YouTube videos. School is helping make James feel safer, as is being in his own home. He asks me questions, several of which come out of his watching videos online.

Resources: It's tough figuring out the best (i.e., reassuring yet accurate) responses. Here is one of the better online articles I have found for helping form a response and support: Mayo Clinic's: How To Talk to Your Kids About COVID-19.

Here are two more: The Verge's: How to Talk with Kids about Screentime and COVID-19 and The Clay Center's: 7 Ways to Support Kids and Teens Through the Coronavirus Pandemic.

If you can, take a nature break, even if you have to stay in a car. Park and roll down the windows. Close your eyes. And breathe. We are lucky that we now can do this in our back yard. Sometimes, even looking at a photo from one of our outings helps:

Routine, Auteen, and Quarantine

Struggling to Master a New World Order

I am working hard to maintain a schedule and routine during quarantine. It is not easy. James is still growing. He sleeps like a true teen now. Getting him to wake up in time for school is another big challenge for keeping on schedule.

Then there is the added anxiety of COVID-19 and staying at home. James is moving slower than a turtle and has developed a nervous tic of go back / forth, side / side, type a letter / erase it ... it can take half an hour to get out of our small house, down 3 steps and into the waiting car at the bottom.

A good place to start, from Blessing Manifesting

Getting James on a routine means getting me on a routine, something I do not care for, especially when I feel so pressed for time. Still, it makes such a big, positive difference that I keep trying. As soon as I feel I have something in place, a bubble warps up somewhere in our lives.

And so we start again. Thank goodness for James' school. The teachers are so calm, patient, and encouraging. I stayed up last night as a kind of talisman for James as he finally got going on some homework. Five hours to do two assignments that might take me 10 minutes. He made it VERY clear that he wanted to do it.

So I snuggled into my big reading armchair and finished a short book until he was done. Thank goodness Burger King stays open late still. We celebrated with a late night treat (for him) and a drive in search of deer. We didn't see any, but we had a good time.

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.

The No-Win Bedtime

When you realize you and you autistic teen are both done and you enforce bedtime.

Then get to listen to the scripting based on YouTube rant videos while you try to sleep.

#nowaytowin #tryagain tomorrow.

The Importance of Control and Expression

Routines and schedules can be tiring, but they give crucial structure to a day and a feeling that one can have some control in a world gone chaotic.

I have seen the importance of a schedule with James during our new, mandatory learning at home routine. It helps him take better care of himself. When checking his school-issued Chromebook, his face looks a bit relieved, and his mouth curves in his smile.

Here are some great handouts to give structure and control in a messy situation:

Thanks to Natalie Long at LONG Creations, you and your child can create a time capsule about this historic situation. Please visit her Facebook page for more information.

I like the way James can give some order and structure to how he is feelings. An outlet for questions. And understand that there are things he can do to keep himself busy and in control. And hey, a writing exercise!

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.