Sunday, December 30, 2018

A Year of Process and Outrage

It's almost the end of another year. What a tough one it's been, especially for James. How the system is failing him. Failing us. Namely, the school districts and the government that is supposed to fund and provide guidance to said school districts.

The upshot is that it has been a year of James being without a steady, structured educational environment. It's showing. It's come at a horrible time of a flood of hormones, added height, and explosive frustration.

In short: two Sonoma County school districts, our State and Federal governments failed us at a crucial time and they pretty much bank on parents like myself being too tired, broke, or ignorant to do much about that.

Here's where being outraged pairs well with stubborness and endurance. I am currently engaged in several Processes, some of which include legal, to fight for my son to be educated and supported per his legal rights. To give him tools so later in life he can be as independent and self-supporting as possible.

I call them Processes for the good of my soul. It's long-termed and I know he won't get his full legal entitlements while the federal Secretary of Education removes guidance and legal protections for other-abled students, our state government continues a pattern of funding cuts for public schools and special education, districts side with unions over student needs, and schools actively work to keep special needs parents in the dark about what is actually happening at school.

My mother taught for 30 years. She worked for and received a Masters in Special Education while my brother and I were in high school. I have helped teachers in private and public schools since I was in the 5th grade. I have seen a lot of school from both sides and understand how games must be played to do the best one can in a system. I understand schools are being asked to do too much with too few resources and training. I understand it is hard to work with kids in general, our kids in particular, and sometimes parents most of all. I do get infuriated when I want to pitch in and help but get treated like the enemy. And lied to. And meanwhile, my guy gets put in a corner and short-changed. Over and over. So yes, outrage.

Our public schools systems are not perfect. They never will be. That doesn't mean we get to shrug our shoulders and let it go. Throwing money at schools is not a solution (although it can help). It doesn't mean that yelling or pointing fingers will do much. I think our best bet is to keep trying to hold schools and government agencies accountable, and try our best to partner with them for our kids in this Process.

Sunday, November 11, 2018

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!"

Thursday, August 02, 2018

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.

Wednesday, August 01, 2018

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.

Friday, July 27, 2018

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.



Wednesday, July 25, 2018

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

Sunday, July 22, 2018

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?
   

Thursday, June 21, 2018

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!

Wednesday, June 20, 2018

Slamming Into Summer

So seventh grade ended up badly. That's all I will say in this post. Suffice to say that come August James will be in a new school and new school district. Meanwhile, I am getting used to Teen James, who is now almost 5' 10" at 13 & 5 months. Still a picky eater, so he is a handsome beanpole. He no longer calls out "Help me! HELP Me!!!!" when I wash his hair, but hygiene is still a struggle. He's learned to do his own laundry at a coin-op facility and is learning to rule the vacuum cleaner. As for myself... after dealing with all the schtuff I don't post about explicitly online for way too many years, I am tired.



Meanwhile, this happens to be THE Best summer school he has had in well over over four years. First the classes are at the high school campus, away from the noise and confusion of the previous location (six years running). Second, the teacher is giving them all life skills: cooking, taking the bus,  filling out a job application, and buying things in the store ... what is not to love? Third, he likes the older kids and the teacher.

I am wrangling summer reading on the side.

Still dealing with way too much spitting and use of tissue and toilet paper. Also clogging toilets when upset about things. Trying to get ABA going. Still working full time. Still dealing with end of life and major health issues in my family. Still calling and writing those nuts in DC about how I feel about our current status for education, healthcare, and immigration. And that damned tax bill.

Thank goodness for good friends, good books, and Marvel movies!

And so it goes.

Sunday, February 25, 2018

The Big 13 Party

Even though James' actual birthday is in early January, we are all rarely ready to celebrate it with a party until a month (cough *or more*) later. This year we had some smaller family celebrations on and near his actual birthday. The big party with friends was today.

As James is now officially a teen, I thought he might want a different kind of party. We talked it over and narrowed down to Scandia or bowling. James finally picked bowling. This is not surprising - we have fond bowling memories.

The best way to plan a party for James is to find out who he really wants to come, then see if we can find one date for the party. We were pretty successful this time, thank goodness!

People trickled in. It did not matter because we had lanes reserved. We set up one lane with bumpers and one without. We had a ramp, just in case. We had cheese pizza, Coke, and Sprite. Guests included a friend from a socialization program, a friend from school and his brother, James' sister, and cousin. There were cheers, socialization, and Minecraft discussions. The oohs and ahhhs of opening presents mingled with devouring cupcakes from Oliver's.

No one lasted the full two hours, but that was okay, because everyone had a good time. Happy birthday, James!

Monday, February 19, 2018

Autism and Fear and Change

I have been watching as much of the news as I can take, about the recent mass shooting at a school and deaths of students at the hand of a former fellow student. I am so angry right now about so many things. So worried for my son.

Right now, I am reading about a lot of finger pointing. I am feeling second-hand anguish and rage. Who is to blame? The NRA, and their insane support of proliferation of gun use and consumption in this country. The politicians, who take their money for personal and political and let gun control bills and laws die in committee, along with out children and students in our schools. The schools, who rubber stamped troubled kids out of their system when they became a disturbance -- why are schools expected to be the experts on this, by the way? The FBI, for not following up tips that he was ready to explode. About the white supremacists, who trained this latest killer and went on record to say they did, although surprisingly that is getting little attention from where I am sitting.

You know what I am also reading about? Again? Autism. Autistic male teen, shunned by peers, anti-social, living with mom as parents are divorced. They could almost be describing my son. Almost.

James right now is happy and still focused on games and media from his childhood years. While not living with his dad, he does get to see him and talks with him almost every night. His classmates still greet him with shouts and friendly waves. I could list all the ways my sweet sunny kid is different from the killers at Sandy Hook and MSDHS. It won't help the fear that colours perception.

Fear that can lead police and other first responders to take my son down, or make school administrators look the other way and pass him out of their systems without getting into the messy and expensive question of how to help troubled kids on the spectrum. Fears that could start making his classmates look at him funny, and start to wonder if he will ever become someone like they are reading about in the news.

Also, we have puberty on the horizon. I know something of what is going to happen once those hormones hit hard. Already at 13, James is taller than my 5' 7". I am doing my best to do right by him, so he can be as well-rounded an independent as possible. Plus, I know I will make mistakes. It feels a little bit like juggling nitroglycerine. Every day.

James is part of a wave that is about to swamp the end of the public schools and services section. Adult communities and our world at large - they are a little better equipped to deal with differently abled, but where is their place? What and who are their supports? Our schools have been criminally underfunded, under-trained, and under-staffed, even before Betsy Vos came on the scene and started trying to dismantle rights to access and services for disabled and differently abled kids. The regional centers have been under financial attack at the same time. Here in California, Jerry Brown has shut down centers for disabled adults with no replacement available.

I feel my anger, building over time at all the budget cuts, trying to be swept under the rug, and isolation from socialization ... growing as my government takes away health care, mental health services, and punishes me for being a single mom thinks that "thoughts and prayers" are going to do it.

Troubled kids, teens, and adults cannot be made invisible. Closing programs to help and support them to save money or putting them off into a funded program that is not equipped to handle them or out into the 21+ population at large and hope for the best? Only works so far.

I am furious and what is being done to all our kids. To my kid. Politicians, talking heads, and social media noisemakers: take "heart broken", "thoughts", and "prayers" and STUFF it back down your throats. We're not here to bump up your polls or ratings.

I call elected politicians in DC (have yet to get through to one - more and more GOP office are letting calls go to voice mail, whose message boxes are full). I participate in protests (it does help). I write to elected reps. I show up to IEP meetings, and call them when needed to advocate for my kids; I take notes and ask for services. I work with the doctors to keep my kids healthy mentally and physically. I see some great people and organizations out there. I participate in research studies - how else will we learn more about causes and things that can help? I have talked with community leaders about needs and services.

It really burns me: all the finger pointing and "not my problem/why should I pay for" mentality and lip service out there.

We are all in this together. Act like it.

I pay my taxes. I have worked almost constantly since I was 16. I vote - every danged election. And I am teaching my kids to do the same. And my biggest hope is that change is coming, to wipe out organizations like the NRA, KKK, Tea Party and the current status quo. Because the job you're doing just is not good enough. In fact, it's killing us. And we are realizing we don't have to keep sitting down and taking it.

Wednesday, January 10, 2018

The Teen Years Start

Happy Birthday Number 13, James! 




This is what James found when he woke up this morning:


He brought cookies to share to school and in the afternoon we saw Wonder - it was James' choice. Talk about bittersweet for me. James enjoyed it - especially the friendship scenes.


You have come so far. I hope you keep moving forward and retain your sunny outlook. How much you have given me. I love you, Mother.