Sunday Social

Hello, Fall in California. Hello wildfires, smoky skies and flashbacks to the '17 Tubbs fire and '91 Oakland Hills fire.

School was canceled Friday, due to bad air quality. James' anxiety was up considerably. He keeps asking if our house is on fire and relives our evacuation of last year. Family members in So Cal evacuated over the weekend. There are other challenges coming this week.

What to do, to get us both off our computers and out for some exercise and social time?

Why thank you, Cost Plus!

Their holiday campaign to Find the Golden Bell in their store was a great experience. We poked around the departments with other shoppers on the hunt, muttering the daily clue to ourselves.

James kept asking staff for hints and they patiently told him the one clue they were allowed to give. I wracked up another 3,000 steps on my FitBit - yowza! and did a little pre-holiday shopping.

We did not find the bell on either trip to the store on Saturday, but we met a lot of understanding, generous people who asked questions about James and watched his earnest searches with benevolence and an overall friendliness.

This morning, with a little assistance from some ladies with a lot of heart, guess what James found?

I let him shop and use his $10 gift certificate. He chose a mug and a deer ornament.

I met a lot of lovely people and made some new acquaintances too. To quote The A-Team (remember them, boys and girls?): "I love it when a plan comes together!"

Signal Output Divergence

My father passed away less than two days ago. Even though it was peaceful and anticipated, it was emotional. While I was at his home, I had James stay here with a friend. When I returned from being with my mother and family, I was exhausted and wrung out.

James focused on getting computer time and complained after I had him stop after an hour. He paced to and fro, argued almost every statement I made, and muttered under his breath over and over how upset he was and how mean I was.

I told him he needed to be nicer to me, because my father just died and I was sad and upset. Also, we were going to bed early. He fought that too.

James sometimes has trouble talking about anxiety, sadness, or loneliness. These emotions tend to come out as agitation and behaviours.

I know he understands that I am feeling sad. There is a great big "now what?" disconnect between knowing this and being able to express sympathy or compassion in a recognizable way.

Day in the Life, or Whatever ...

Ever wonder what it's like parenting an autistic kiddo? Here's a snapshot for me today:

• My father passed away after a long illness. Peacefully, but still. We loved him, and we have Grief and Feelings.
• James is already stressing over starting a new school. Everything unfamiliar: school, buildings, district, kids, teachers.
• Thanking the Universe that a friend's son can be with James at our place, because he'd stim like crazy and raise the stress level at my parents' place.
• Emails to work, about leave, scheduling, and paperwork. Would not do to get fired.
• Text a few friends. Just a few because yeah, lack of socializing is still happening.
• Text ex, to not be surprised if a different teen boy answers the phone at my place. 
• Answer phone call from James, asking when I am coming home. Direct him to find where I left his breakfast and to came right back to the phone. Hang up phone after 5 minutes and assume he is now eating his cinnamon bread.
• Drink coffee.
• Feed cats.
• Hug waking family members, especially teen daughter.
• Feed dog and fill water bowl
• Play online Mahjongg until Hospice opens and we can arrange the rest of the day.
• Go to daughter's HS, to explain why she is missing the last day of summer school. Because it's summer school and no one is one phones in the office right now.
• Clean cat boxes.
• Drink coffee.
• Do a donut and quiche run. Because you never know.
• Watch your Mother change her mind on the phone. A lot. Admire the fact that she's still going to her cancer therapy appointment, wearing a tie-tied shirt.
• Hug your family members.
• Be the one who is crying.
• Drink more coffee.
• Take donuts and snacks to teen boys and set up the day together.
• Hug everyone, including the cat.
• Try to talk with your autistic son about what is going on and watch him slide down the hall in response. Get hugged by other teen boy who gets it.
• Drive back and void being hit by Kamakazi drivers.
• Worry about the smoke from 2 fires that bring back so many unpleasant memories from last October. And tell yourself they are NOT getting closer. So there. Not. Closer.
• Be thankful James is not here because they are cutting up a tree and shredding the limbs with gas-powered mayhem.
• Eat some chips.
• Keep up emails with new school district about coordinating the start of school and read their bilingual, 42-page newsletter.
• Water plants.
• Check bank balance and figure the bills to pay this week.
• Be on hand to help prep for the mortuary pickup.

This is just from 6:30am to 11:30 this morning. My parents' house is so quiet now.

All Points Between

I am so busy. Trying to work full time. Driving places: Boys and Girls Club, Dr. Appointments, shopping, and so many other inter-related things. Prepping for school in another district. Taking a breath for buying school clothes. Health issues. More health issues. Life and death issues. Cleaning the cat box.

Fireflies image ... from the Smithsonian Magazine

Every time I turn around, something to clean or fix or take care of.

I feel like a whole bunch of quarks (also known as hadrons), filling the gaps of all these thing, trying to keep things from breaking apart. I imagine this looking like fireflies, blinking on and off. If feels like oozy jam.

The last few weeks, Fridays took me by surprise. Already? Fridays never used to take me by surprise.

Taking a few hours to sit with James is restful. Petting the cat. Making a crock pot recipe. Watering the plants. Stealing a day on the river. Picking wild blackberries. This is how I slow down.

Death: The Difficult Script

How do you talk with someone with autism when someone close to you is dying?

People with autism typically deal better with routines, facts, and literal communication.

Getting up close with death, grief, and end of life on a daily basis tends to blow that all out of the water. Especially when the main care giver is impacted, like myself.

James picks up on emotions. He wants everyone to be happy. I think because he understand that and the other emotions are more complicated and bewildering.

We have already covered the basics of dying, as in it is a natural thing that tends to happen when people get old -- their bodies start to give out and shut down. They get slower, move less, sleep more, and can have bad periods and better periods. Once they die, they do not breathe. They do not open their eyes. They do not talk. They are not alive.

This is really hard to stay calm and discuss. But I need to. The tears and distress I show tend to bring out behaviours. Sometimes I cannot help being overwhelmed, but I stay as calm as I can and talk through it, letting James know this too is natural and part of life. Maybe if he sees me with these messier emotions and still being able to be me and keep on going, it will help him to do that too.

In the days to come, I will need to talk more with James, about what will be happening next, as well as what he will need to do. I will have to come up with some conversational scenarios. How do you script death? And keep it literal but not too socially unexpected?

Guess I will find out.

Autism Resources and Community

Reflection, and A List

My wish list for a special needs caregiver retreat:

1. Location needs: Nature and quiet space to reflect and destress. Meals prepared and no clean up.
2. Speaker about why we’ve come, acknowledgment of what it is to care for someone with special needs. Importance of self care.
3. Workshops for reflection, de-stressing, self care. Can include Yoga/stretching/pilates, nature walks, meal planning, routine building or core essentials for schedules/routines.
4. Workshops for sharing advice/tips/support. Can include therapy sessions, writing groups and information sharing. Gather interest and contact information to form groups for advocacy for services, financial and conservatorship planning, tips to lobby government, and IEP workshops.
5. More quiet time. Maybe group building activities.
6. Group discussions/presentations: Dealing with stress, fatigue, and isolation.
7. Teaming up: Share resources, contact information. Build lists to build your support group. Get scripted.
8. More quiet time for reflection and de-stressing. Examine what renews you.
9. Ending Speaker. Sum up. Encouragement.

Repeat at least once a year. This caring is for life.

This grew out of a couple recent rare weekends when I was able to get away from my regular routine and be in nature.

I realized again the importance of just relaxing and taking care of myself, for a change. 

It reminded me of the retreats I attended while growing up  --  how much better I felt while attending them and afterward, even though I was much younger and life was simpler.

It also reminded me how, even in the middle of break-ups, endings and some of the most un-fun adulting stuff ever, being able to attend a group function with others who "get it" provides so much emotional release and support.

I remember a "before" time, when dance, hikes, socializing, music, and making art made me feel like Me. How renewed engaging these activities can be for me. How much colour and worth they give to this thing called My Life.

This Retreat is a good idea.

What does your Retreat look like?

   

Summer Solstice 2018

It's officially summer! It's hard to make plans this year, with all the family health issues and our first serious summer sessions with middle school, high school, and the local JC. I keep having to use my PTO for my family instead of my, more so than usual. Nevertheless, summer is still going to be good. So far we've had:

Our local Raley's is closed for renovation. Goodbye 80s/90s decor ... hello???

Annual Hot Air Balloon Festival! Winds this year prevented launches, but still had fun with friends.

We picnicked on the Town Green, catching up while the teens ran about and had a gleeful spree through the candy store.

Boys and Girls Club again puts on a great series of summer activities. James has signed on for two field trips again.

Another get together with friends by a pool, with California rolling hills in the background, under blue skies.

Visiting local parks and exploring the outdoors. Happy summer, y'all!