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. 

Spot Cleaning of Behaviors Past

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

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

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

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

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

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!

Breaking Down Eating

 It is common for autistic people to have a small and inflexible group of foods that they will eat. For both my kids, all their senses were acute. I was also a stressed working mom and so missed a crucial window of getting my kids to eat a variety of foods. 

All this to say that both my kids love carbs and plain foods. For a while I had success with getting them to eat apples and bananas. No more. Tomato sauce on pizza is the closest they get to a vegetable (no, no fries any more either). There was a week where I could get them to eat raw bits of broccoli, because they thought it was funny. No more. No popcorn, but they will eat tortilla chips.

For a while, James had a pretty good diet. Then our world broke up, broke apart, caught on fire, and kept falling apart on us. There were unresolved dental issues. James decided eating was a pain and his dietary world narrowed to cheese pizza, milk, and croissants.

Gradually, I, some family members, school, and ABA have encouraged James to re-expand his diet. I felt like Queen of the World when I got him to eat a warm pretzel in Golden Gate Park during COVID-19 lockdowns. Then ABA got him to make (and even eat) a quesadilla and a PB&J. His aunt got him to try strawberries and melon. His teeth are in much better shape and I think that is encouraging him as well.

Now ABA is providing a nutritionist to work with us on new foods and approaches for James. Like so much else that I have experienced with James, this involves breaking things down (introductions, preferences, actual tastes, bites, chewing, etc.) over several months to support a more robust and healthy diet. Bon appétit, mon fils, bon appétit.

Epic Milestone and Celebration

 Christmas Self-Care Miracle

My guy used the bathroom, took a shower, and washed his hair all on his own un under an hour. 

This is a first of epic proportions. Especially in light of regressions that hit their lowest during COVID-19 lockdowns. 

So proud of my guy!

Thank you, all you ABA helpers and family supporters!

Fellow parents, you will never know until you keep trying. I've been there, down and out. Sending you all big hugs. It can get better.

And now I am taking him out for a drive and pizza.

Okay - I Can Talk About It Now

Autistic Teen Meltdown, or: What Happened on Thanksgiving 

So, we had complete #HOLIDAYFAIL this year for Thanksgiving. Still conducting an internal investigation as to why, but pretty sure the usual suspects (relative's house, with barking dogS, and more people than he was prepared to deal with) plus teen hormones that felt tired of being bossed around during his holiday week at home, noise, plus pressure to take a shower all combined into a huge, LOUD, meltdown in front of family, across a golf course (he eloped and I got him back, which set off the screaming and yelling), into the street, and in front of a friend during a food drop. 

It was awful. 

This was the first time my family had seen what a meltdown looks like from James. The stress in keeping calm to manage the meltdown, the embarrassment of the outburst, the pain of seeing my family want to help but not sure what to do, and finally the realization that I just had to take him home and there would be no dinner with the family this year overwhelmed me and I started to cry, which freaked James out. Because as a rule I do not cry during meltdowns (where he can see me). It just doesn't help.

This time, some of the things he yelled at me were extremely hurtful, so I let him see me cry. So now remorse was added to the mix. "I'm sorry, I didn't mean to" came after each tirade. 

When we were home and things calmed down (reassurance that even though I did not like the behaviours I still liked him, being in our quiet home, and cessation of crying), he gave me his version of a hug and said again he was sorry. I thanked him for that and then told him I needed some quiet time now. 

I also said there would be consequences, so no internet and very restricted phone time. I unplugged and hid the router, put his devices in a safe place, and the internet stayed off through Sunday. He earned phone time so he could talk with people. Having myself received the Silent Treatment on various occasions and having a pretty good idea how something like that would affect James, I wanted him to be able to talk with others while still letting him know the meltdown was affecting his privileges.

Oh the talking. We covered how feelings were neither good nor bad, it's how you handle them. The importance of communicating with people before a meltdown happens. Practicing phrases we can say to make that communication easier.

Without prompting, James wrote apology notes to myself and other family members and delivered them personally. When he says he is sorry and didn't mean to, I believe him. I love him to pieces. I also knows that his life will be a lot better if can realize how his actions affect others and he makes it his priority to better manage them. 

Today is Wednesday - it's almost been a week. I can talk about it now.

Some good (IMO) links for understanding meltdowns (and no, I have no affiliations with any of these - I looked at the posted content and thought it was very appropriate for our situation):

• Autism Speaks' Challenging Behaviors Toolkit
• Autism Speaks' Blog Post "10 things that helped me during meltdowns as an autistic child"
• Toolkit to understand behaviors, from Autism Speaks
• A guide to meltdowns, from the National Autistic Society (UK)
• Blog post on Autistic teens and meltdowns, by New Focus Academy
• Article that does a good job addressing meltdowns and what to do after, from the Raising Children website (Australia)

Support and Thankfulness

 "We know that this can be a stressful time for you. If you need additional help from a live person, don’t hesitate to call the Autism Speaks Autism Response Team at 888-288-4762 (Español 888-772-9050) or email us at familyservices@autismspeaks.org. " -- from Autism Speaks' blog post Five Things To DO While Waiting for an Autism Evaluation. 

James, before diagnosis, playing peek-a-boo

We as an overall population have all been learning. James had to wait 5 months for an official evaluation, that's how backed up the clinic was. The only people who could help immediately were the North Bay Regional Center, who did the initial assessment and immediately wrote purchase orders for speech (twice weekly), O/T, and multiple services from ELI (in-home development work , group play sessions, and parent classes). Through all these great agencies I learned on-the-fly and was given many tissues, hugs, and encouragement.

Things were so different then. His pediatrician told me J could not possibly be autistic "because he looks you in the eye".

Please share this link. Autism Speaks is not perfect, but it's trying its best to reach out and support across all 50 states. And the holidays can be so rough.

Thankful for all our help and blessings this year. For all our families and friends ... for every new skill mastered ... for every new person who understands just a little better what life can be like for someone otherly abled.

Indepedent Steps

 James made a PB&J this weekend. All on his own. I am excited -
the quiet deep excitement with the word "YES" playing over in my head. 

At was all the more terrific because he did it when he was frustrated. The pizza delivery he'd earned was, shall we say, messed up on the delivery end. He was hungry. I suggested he make himself a snack, something like he'd been practicing in ABA sessions, like a sandwich or quesadilla.

He said "Peanut butter and jelly? um, okay - yes!" Out came the jars. He found the bread and pronounced it "good!" and proceeded to make his sandwich. He needed a little help with cutting it diagonally, but that's it. No prompting, no fussing, just calm and confident sandwich making.

We celebrated by visiting Diagon Alley via the first Harry Potter movie. James faded out soon after that scene. I think the shouty Dursleys were really his favourite part.

It hit me again this morning, as I was doing errands. Driving the van on a clear sunny autumn morning, where the flaming trees showed bold against the blue sky, yet the sunlight felt warm and mellow inside the car. Again, the quiet "Yes!" and then "Thank you". Because we are here again, moving forward. James is using life skills we've been working on.  

When Back-To-School Nite is a Closed Door

 Last night was the first on-campus Back-to-School Nite (B2S Nite) since COVID-19 shut everything down in 2020. I was so excited. I lined up coverage for James, because eloping is still a thing and I wanted to be present for this night in his senior year. 

Then I checked my emails and saw that his room, and only his room, will be closed, because the teacher was sick. My heart sank, and then I was angry. Not because his teacher was sick, but because B2S Nite has for me become a symbol of how special needs kids and parents are so often sidelined and ignored by the educational system, and a focal point of the pain of being reminded that our kids are different and don't count as much as others.

From Kindergarten through 4th grade, James was in a regular classroom with a 1:1 aide. I loved B2S Nite, not only to see what was happening in the classroom, but to meet other parents and have a break myself. James always wrote me a note, along with his peers writing notes for their parents. It was great. 

Then I allowed him to transition to the Special Day Class. Little did I know it, but I was signing away a lot of things I liked about James' school year. No book fair reminders. No class party participation. No field trip chaperone days. And no B2S Nite. When I brought this up to the teachers, they were surprised. That is when I discovered that their experience with many of their their parents seemed to be sheer relief of being able to drop their kids off and not worrying about them. Full stop.

I understand that relief, believe me. What I don't understand is the lack of interest of what goes on in the classrooms, and how that is almost encouraged by the schools in our local districts. Frankly it's unnerving.

This year I asked if I could sit in on another classroom and was easily accommodated. Even though it was not my son's class, I was able to greet many parents and get some good information about programs that exist in the years after high school. I ended up enjoying my night out, getting information, socializing, and feeling included as part of the school. 

I would ask that teachers and schools and district not let anyone's Back-to-School Night be a closed door. Rather, have a Plan B for another teacher or Staff to cover or to have volunteers set up and proctor the classroom. Please don't increase our isolation. In a world where teachers are not getting the respect or support they need, let B2S Nite be an opportunity for interested parents to get on board and pitch in to help make the year a success and feel a part of something good. I understand it's not as simple as this suggestion, but I think it's a good start. 

What It Takes

I have over 90 hours of respite every 3 months. I have not been able to use it in over 7 months because there are no workers I can trust to be with my son. I have gone through 2 agencies and asked my regional center for help and still I cannot use my respite hours. 

I am lucky that we have ABA - literally thanks to Feda and other Autism Mom advocates - and a great school (who sponsored a symposium where I was able to meet and speak briefly with Feda). Also the support of family and friends. But still I am way short of sleep and time for myself.

Elopement seems to ebb and swell with my guy. So far this year, it's been on high for extra long. The sofa has become my bed and have signs and bells on my doors to deter eloping. Many nights I feel like I am holding my breath in case I miss hearing something. I made sure my kids both had swim lessons until they knew how to swim and made sure to introduce them to the river and ocean so they know how to respect them. I memorize what he's wearing before he goes out the door and have photos on my phone to show in case he does elope.

My guy is generally sunny. He has a good sense of humor, and can be sneaky.  He is kind to our kitties and helps with the chores. He is also 17 and wants to get out and explore.

I am still sleep deprived and have been for years. But so far, he is safe. Through fires, moves, divorce, upheavals, awful school settings, COVID-19 isolation, we are still here. Not everyone is so lucky. 

Please take a moment to view this Autism Safety Awareness video to get to know more about autism. Then visit the September 26th site and read about tools and information you can use. It can literally save your life.

Waiting ...

 Waiting is part of life. Today seems dedicated to waiting: 

1. Waiting to hear back about the mythical thing that is respite (person and agency are now ghosting me).
2. Tortuous waiting to hear back why my dental insurance thinks it's been canceled, after approving payouts and cashing my monthly checks. 
3. Pins and needles for the latest books by two of my favourite authors to drop on one day.
4. Patient marking of time until the next episode of She Hulk comes out.
5. Dogged pursuit of waiting for next steps in the conservatorship process.
6. Day by day plugging away at housework, bills, and workouts.
7. Waiting to hear back from doctors.
8. The constant "please let it have been a good day" mantra of refreshing the daily reports folder after 3PM to find out how James day actually went at school.

And so it goes.

(Epilogue: Day went okay, if off-schedule for a good part)

Inclusion in School: Fails and Suggestions

Where inclusion falls down in public schools

From Kindergarten through 4th grade, James was in a regular classroom, with a 1:1 aide and pull out services for speech, O/T and Adaptive PE. For his triennial IEP preceding 5th grade, I agreed to placement in the Special Day Class, as James was being impacted by classroom noise and not able to follow auditory instructions and was spending less time in said classroom.

Oh, how I wish I hadn't. 

The school ignored his IEP and tried to make him repeat the 4th grade because "they wanted to try something new". No prior notification or IEP meeting. They changed his ENTIRE program and work from what we all agreed to for no other reason (that I could see) than it worked better for THEM. They kept denying they were making him repeat the 4th grade until I called a meeting with a lawyer in attendance and proved, with homework from the previous year and the school directory of grade level of teacher classrooms (for his inclusion portion of the day), that they placed him back in a 4th grade environment for social interactions and class work. Then they claimed (with the lawyer present) that they'd "stopped when I requested it". I asked which was his inclusion class, and it was still with 4th graders.

I was a working single parent, going through a painful divorce, poor, and my daughter was going through a really rough time. They counted on my being too swamped to notice or put up a fight. They also counted on James not saying anything. Not for the first or last time, I was furious at how our kids are the ones who suffer from inflexible rules and a cluster school system that had no incentive to fix things.

Here are some thoughts, based on our public school experiences and the needs I saw in my son and others, that could better support schools, teachers, and inclusion:

• Keep 1:1 aides with a student throughout their elementary and middle school years if they are working well together. 
• Include the Special Needs or Special Day Class students in school events, such as back to school night, Book and Science Fairs, and Open House night.
• Set up an inclusion classroom to incorporate working/helping a special needs classmate as a special experience / reward.
• Carry the inclusion into meal times and recess in a low-key way (e.g., turns eating with them and playing games such as conversational Uno or catch). 
• For schools that have incorporated volunteer hours into student curriculum, consider providing the opportunity to work with inclusion or special needs students.
• Consider working inclusion into your school and classrooms as an opportunity to teach all the importance of empathy, getting to know someone, creative thinking, and helping others.
• Have monthly get togethers for the parents of special needs students - part social aspect and part information about programs available (such as summer camps or dentists who work with special needs patients), and how to prepare for the years ahead.
• Partner with local and national non-profits to fund or support some of the above - they are out there, and growing in numbers!
• Do not make the Special Day Class the place to send students because they are disruptive to the rest of their regular class (oh yes). 
• Remember that special needs students can hear what you're saying and understand more than you probably realize. They also do not forget it when they think a fellow Special Ed classmate has been treated unfairly. Sometimes it can be helpful to have a follow up touch base after an incident.

After all, the numbers of children and adults receiving a diagnosis of autism continues to grow. Adapting to changing classroom and student needs are imperative for a healthy society. 

Advocacy Tools When Behaviors and IEPs Go Awry

 I came across a Disability Rights California post in my social media feed that I wish I'd had several years back. It talks about steps to take and offers tools to use if there are Behavior and Discipline problems with you child and the school. The letter format for requesting a copy of their Behavior Emergency Intervention Report and the Checklist of steps to take if you child has been suspended or restrained at school are excellent. 

When James was in 8th grade, at a new school, his IEP was not followed. He was set up to fail. For the first time ever, he was suspended. That principal did so many things that were both hurtful and illegal that the lawyer I hired, who preferred to peacefully negotiate, took umbrage. 

I can tell you that documentation, being able to create a clear (and provable) timeline of events, including letters and steps like those mentioned above, were vital to us getting our position heard and James receiving the best placement for his (current) school.

Do not be afraid to use these tools. You need them to advocate for your child or family member. You can even use the letter template to request other legal services to support your child, such as a request for outside assessment by a non-district Neuropsychologist. You can also use it as a template to ask questions or request an IEP meeting. It's also great to have just in case. Fantastic if you never need to use it, but so very, very handy if something crops (or creeps) up.

The Disability Rights California has a well-organized online center of information related to Special Education, as well as Resources and Programs for those with disabilities and those who advocate for them. 

ABA-less. Again.

 I had a feeling this was coming. After some missed sessions and communication snafus, James' ABA BI person of almost a year is leaving us. It makes sense, they are a recent graduate and it's rare to remain in one place at that time of life. 

However, James is supposed to have 5 days a week of ABA. Now, he will have none. 

This is not the first time we've had this happen. Like teachers, ABA workers are usually not paid enough for what they have to do. Our kids take a lot of attention and patience. While I think the experience of working with special needs clients has rewards beyond money, it does take a lot out of a person.

In the past, losing all ABA services would have hit me hard. Now that we've weathered this loss several ties, I can take it more in stride. I can even see it as an opportunity of more time for James to try new things. Because now that we are settled in our new home and James in his school, we can do that.

James still really needs his ABA services, however.

World of Words

 Communication with James fro me continues to have its Dada moments. This morning, for example, he keeps wandering into the kitchen and asking if I have noticed the van or truck driving by outside. We live on a small quiet street, and I am setting up our week, so no. There are times when he will come out of his room and ask me if I like/hate Kim Jong-Un. Several times he has asked if our cat has eyes (ummmmm, take a look and yes/why???). Last night he asked about explosions. When I asked where, he replied "National Geographic".

I overhear him talking to his cousin or aunt on the phone and it sounds much more normal. I am so glad he is able to practice more expected types of conversations - it helps him feel more connected.

Our more normal communications happen by texting, Facebook posts, or walkie-talkie bursts ... and we are in the same house. Those exchanges revolve more around are we going out (almost always a "yes"), is there a skunk under our house (sadly also a yes, I suspect), did [insert name] really have the flu (yes), and does Disneyland cost a lot of money (yes again).

There is so much going on inside his head. I'd love to hear more. On the other hand, I will never be bored. These brief exchanges require history retrieval and sleuthing skills to figure out where they may be coming from, to get a bigger picture. I will keep encouraging communication, so he can make himself heard when he wants or needs to be heard.

Community Rules - Practical Applications

 In the same ABA session that explained and defined House Rules, James' Team also covered Community Rules, or CRs. The CRs are to address safety issues, such as not walking into the street, keeping his seat belt buckled when riding in a car, and using Friendly Language.

Yesterday James and I used these CRs on the drive to get hair cuts, the hair cut appointments, and the drive back down home. They were in use again when we drove to our in-person ABA Social Group and home again. It wasn't a complete reversal of the negative behaviours and scripting that we've been struggling with recently, but it did make things much smoother and calmer.

As James heads to adulthood, it's more important than ever that I do what I can to help set him up for success, which I see as living as independent a life as possible, enjoying the activities he likes with a productive routine and a good support group.

I am so grateful there is a young adult peer group that he can join. In general I feel this is crucial for teens, people on the spectrum even more, and James in particular, as he is a social and curious guy. In the past, I have seen great benefits to James from social modeling that comes from in inclusion. I think being able to participate in regular summer day camps, swim lessons, and classrooms really helped him understand and and develop not only language, but turn taking, chore performance, and the ability to play with others. I feel all this has enriched his life.

Even though he is almost an adult, he is still testing the limits, and these rules are a good transition between unspoken rules in younger/smaller settings to more adult classrooms and work environments, where rules have to be spelled out and adults are expected to follow them. 

Autism Speaks has a nice page that discusses Social Skills and Autism in easy-to-understand detail and also provides resources. 

House Rules, With ABA

 

Right now, ABA peeps are working with James for House Rules and Community Rules. James and I have been having some extremely rocky days recently and I realized I needed more help and called in his ABA Team. 

It sounds really funny, but we have never needed to officially spell out House Rules before.

I let James know that I asked for help with this, and that he'd be working on House Rules with ABA and me. I did this because James is worried about what people will think about him, and about what they might say about him. His automatic responses are usually "I did't do anything wrong" and "I didn't mean to" and (starting a couple years back) cussing like a sailor (thanks public schools, rant videos,  and lack of social opportunities). By letting him know this was coming, in a calm manner, I hoped for better engagement.

These Rules are the continuation of the "expected vs. unexpected behaviours" that we've been reviewing at school, home, and ABA. It pairs well with the recent work to use Friendly Words at school and in public (to curb swearing and inappropriate scripting). 

Discussing and defining these Rules, if/then scenarios, and rewards for following the Rules also touches on the Zones of Regulation. These Rules also affirm my recent work with James about setting and respecting privacy and boundaries.

In the course of writing this Blog post I came across this great page of resources from Autism Speaks: "Out in the Community". 

Feeling hopeful, and so glad I have some backup for this.

Happy Birthday, Disneyland!

 Disney and Disneyland have figured prominently in our family life. First, I love a lot of Disney - animated movies, music, art, creativity, and the craftsmanship that went into building Disneyland. 

Then came autism, and trips to Disneyland became my sanity breaks and our most consistent vacations. At least until the kids were well into elementary school. After that, Disneyland started to become expensive and our income decreased, and we got priced out. I still tried to get us back there every 2-4 years, because it still felt good to be there, and I had game plans to maximize our time, budget, and tools for sensitive kiddos.

Now Disneyland barely feels like it once did. It's now difficult to save up, plan, and make reservations for what used to be accessible on a same-day whim. The crowds are crazy, and the last 2 trips had me overhearing parents melting down about kids not moving fast enough "to get their money's worth" of their day. Several of our former quiet spots have been shut off and restricted to exclusive groups that are out of our tax bracket. 

Still, magic remains. Especially in our memories. The best are from when we got there before the gates opened, excitedly anticipating our day. We'd down our breakfast bars and slap on sunscreen while waiting for the gates to open. We'd pick 3 rides (Peter Pan, Alice, and Small World) to experience right away, then break for breakfast by the Matterhorn (gushing water, Yeti yowling, and Monorail honks in the background) before enjoying whatever else the day (and afternoon and evening) would bring. 

I think that's why Disneyland is still a touchpoint - it feels a bit like family - our home away from home that remained a constant, happy destination despite hard times, divorce, and unplanned changes. 

Extra Sensory Days

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

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

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

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

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

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

Summer Social

Current State of Party Socialization

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

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

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

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

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

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

Hoping to come up with more.

The Little Things That Drag Me Down

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

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

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

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

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

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

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

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

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

Summer Reading: Senior Year

 It's summer. I love reading. I loved getting my kids into our library's summer reading programs. James prefers to be read to and only certain books. Like many activity, he prefers to not do this with me any more, but will do so with others.

Our beloved, local independent book store is having to close. I chose two books for James, and he seems to like including them with his ABA sessions (in addition to the eternal Matilda, by Roald Dahl).

Bad Kitty Gets A Bath

HiLo - The Great Big Boom

As someone who started a voracious reading habit at age 7, it's hard to have kids who are not the same. That will not stop me from offering it, and trying to engage them in the fun that can be had. Reading is reading, no matter the level.

Dental Solution - At Last!

I am so glad James recovered from his cold so we did not have to attempt a reschedule his big dental day. It's been a 2-year, nightmare journey to get James seen and his dental health dealt with so that he could keep his teeth.

Long story short -- hygiene and dental hygiene have been an ongoing struggle, made worse by moves, disasters, and years of life crises. The programs and family dentists we'd been using told me, once the pandemic allowed for dental appointments and he was actually in the chair again, that his teeth were so deteriorated his top adult teeth and possibly some of the bottom, would need to be extracted. 

That's 8-10 teeth minimum. He is 17 and has speech difficulties. His jaw will not be fully formed until maybe age 25. 

No. 

Some day I will go into detail about all the calls I made, and how we got sent in circles, but not today.

Enter James' aunt, who got us a referral to a dental group who deals with special needs and works with an anesthesiologist. They are about 20 minutes away. 

5 hours under general anesthesia and a lot of work and money later, all but 1 of James' teeth were cleaned, saved, and restored. They also took x-rays and gave him a fluoride treatment. When the doctor came out and gave me the good news, I kept hearing Etta James singing "At Last".

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.

Sick Day

Our Spring weather has been flip-flopping between 30s in the mornings, rain, and sunny highs of 84º. 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.

ETA: Results are negative!

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.

ABA at Full Capacity

 For the first time in many months, almost a year, James is back at full programming for applied behavioral analysis, or ABA, therapy. It has been so long in fact that I am finding myself having to adjust my schedule to accommodate it. 

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.

Espresso So We Can Forte

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.

I gave James 10 minutes to rise and shine on his own (he has started to do this, so I keep trying to encourage it). All the while I am sipping down java, getting out his breakfast, and revving my parental mode. Thank goodness for our morning routine. We both know what's coming - James is the teen fulcrum, waiting for me to lever him into starting his day and getting out the door on time.

The saving grace in all this is the flexible work schedule that allows me to relax enough to match James' playful mood - thank goodness he is rarely cranky or surly in the morning. He knows once I arrive in his room with the morning hygiene kit that getting out of bed is now inevitable. He good-naturedly picks a new shirt for school and puts it on as we start the routine.

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!

Social Pastimes 101

 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.

As he's gotten older and I've been back at work full time while single parenting, it's gotten harder and harder to just spend time with him. We both love our screens too much and the last few years have left us both stressed out and exhausted. He is also 17 and ready to meet other kids, although his behaviours and eloping are a challenge for this.

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:

• Uno emoji
• Smack It
• Guess in 10
• Conversational "Uno" cards from the ABA office
• Mario Kart Uno (not shown)
• Matilda, by Roald Dahl

Importance of Animals

When younger, James was nervous of animals. They moved quickly and were tough to anticipate. At a young age he was knocked down by an enthusiastic and friendly dog. Animals also made noises that sometimes triggered his anxiety.

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.

Chores 'n' Stuff

 

So I am ramping up on chores and taking James with me. Room cleaning, dishes in the sink, trash bags out, beds made, floor sweepings, and bathroom cleaning are getting back to a regular schedule. We are even doing some Spring cleanings such as weeding and washing exteriors walls as needed.

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.

Planning For A Better Future

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:

• Acknowledging trauma from denied or lack of services.
• Discussions around race - how is research being conducted and the need to consider that this can add layers to the needs of families and autistic people.
• The need to connect mental health with services for autistic people.
• The need to add training for medical professionals for dealing with and providing services for patients with special needs and autism.
• The lag between research and tangible services, changes, deliverables.

The committee also stressed the importance of local non-profits as a source of information, services, and partnerships.

The IACC website includes links and events happening in April for those affected by autism and the public-at-large.

I am glad to see this happening.

Gamified Group Results

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:

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.