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.

Sunday, December 17, 2017

Breakfast Breakthrough

James ate french toast again!
Behold, the French Toast Miracle!

For families like mine, this is close to getting him to eat scrambled eggs.

After a week of us both being sick and eating pizza because I had a stash of them in the freezer, this is a welcome change.

Saturday, November 25, 2017

Thanksgiving 2017

Rarely have I looked forward to a four-day weekend with relief as I have this year. I don't have to go or be anywhere except the family dinner on Thursday. I love baking, which is a middle-aged surprise for me. I don't bake anything fancy, I just feel a relief and satisfaction doing it, admiring my handiwork, and sharing it with others.

This year I baked cornbread and lemon loaf, having fun with all the tins I bought recently from Sur La Table on sale. I also made a salad and served up my simple green beans in my new casserole dish  (on a sale within a sale) with rooster designs by Jacques Pepin.

James is interested, but still says "no thanks" when I ask if he wants to try some. He had pizza for Thanksgiving, but he managed to sit at the table with us through dinner, despite all the anxiety over the animals that he might encounter at his grandparents' (dog was in his kennel, cats were snoozing in a back bedroom). He looked like he was enjoying himself.

After dessert, (he tried pumpkin mousse pie and liked it!) He found a quiet spot, periodically ambushing his cousins with "can we do Hide and Seek now?" Just before Thanksgiving wrapped, the cousins indulged him in two games. James was delighted. Thank you, cousins!

While I helped with the clean-up, James politely shut himself in the laundry room with his Kindle, so the dog could come out of his kennel and the cats reclaimed their house. We looked for deer on our way home (a new fascination for him) but found none.

The next day, I discovered three things:

  1. James likes (regular) pumpkin pie.
  2. We are both thrilled to hear Christmas music on the radio.
  3. He likes The Ramones (he came in at the end of Spider-man: Homecoming).
He likes pumpkin pie!!!! That practically counts as a vegetable, right?!

Sunday, November 19, 2017

Life Skills, Home Version

At 12, James has chores to help around the house. He empties smaller trash cans into a garbage bag and then hauls the bag off to the dumpster. He can gather his far-flung dishes and stack them neatly in the sink. He knows where the snacks are if he gets hungry. He cleans his own bathroom and helps pick up around the apartment and his room. He helps me to shop and to carry groceries.

Today we started two new items:
(1) Independence at the laundromat. While James has been doing his own laundry for a while now, that was when we lived in a house, and our washer/dryer were in the garage. Now we use the little laundromat downstairs. There are stairs to navigate with the full basket. He now needs to deal with a coin box, which requires correct sorting of quarters and mastery of the coin slide mechanics. And timing -- we share the little laundromat with 4-5 other units. James has learned that if you don't quickly make a move on an empty washer on the weekends, you will need to wait another hour before trying again.

(2) Vacuuming the carpet. This is big progress. James used to scream and cry at the sound of a vacuum cleaner. Over the years we progressed to his tolerating it behind closed doors in another room. In an apartment with wall-to-wall carpeting and two cats, however, vacuuming has become more necessary. I gave James the choice between cleaning the cat box or running the vacuum cleaner. He chose the vacuum cleaner. He has learned how to plug it in, that the cord comes out of the unit and retracts if you depress a lever. He has learned which lever allows the handle to ease back and that the red button controls the on/off function. The noise still bothers him, so I will take him to try on headphones that dampen noises.

Not only does this help me, it (hopefully) shows James that everyone needs to pitch in to help keep a home going. It's also giving him life skills so he can have a more independent life.

Wednesday, November 15, 2017

Food Shopping Evolution

Well, the day has finally arrived: James is eating more food as he prepares to hit his main growth years. At age 12 (almost 13) he is reaching 5'6". He is still a picky eater, and his overall well being suffers when he does not eat.

Luckily, Costco has an answer for that: cheese pizzas that he asks for (4/$10 ... yay finally having an oven that works! So long, Little Caesar's!) and yogurt. I have bookend foods (dinner and breakfast) that fit in my budget!

Then there's Costco itself. I have James come with me. We get in walking time - yay, exercise. He also helps carry out to the car and returns the cart, if we take one. Of course he meets people he knows ("James! Hi!" from one of his yard duty buddies, while we wait in line).

I am starting to look at the clothes. James is now wearing mens' size 10.5 shoes and small in clothing. Pants are tricky, as he has the length, but is still in kid mode for bone size -- I can still get away with kids XL sizes there sometimes.

We have already determined that the underwear is a no-go (No briefs. What the heck is this new style in mens' underpants?). He does not like the socks or shoes. But jackets, shorts and pants? Those are distinct possibilities. And a bathrobe.

This Costco addition to our weekly shopping comes at a good time, in a way. The Trader Joe's nearest us (yes, our beloved Trader Joe's, where the Crew Members all know James and miss him if I shop without him) took a hit in the Tubbs Fire last month. The building still stands but the business next to it was completely destroyed and a lot of smoke and water damage resulted in the surrounding area. It's closed for probably the next year.

This means that we now have to shop 10-15 minutes further south, at the next Trader Joe's. This one is in a big retail complex that includes a Costco and Costco gas station. If we time our runs strategically, we can hit all 3 without too much craziness at checkout or the parking lot. James grumbles about having to go with me, because he has developed this weird phobia about plants (since August) and guess what Trader Joe's sells outside their entrance? Once inside, it's okay. We see a lot of our regular Crew Members, and I think that reassures all of us.

Raley's strangely enough, still has the best prices around for cat litter (for what I can easily haul up 16 stairs) and canned cat food. They also have a good emergency sized cat food in the brand they prefer. So I still shop there, either after I drop off James at school or on our way back from Boys and Girls Club. They also have the soft wheat bread that James likes, and the lunch ham that I can use for work lunches. Occasionally they will have a good deal on berries (for James' sister) or asparagus and Peets (for me). And come birthday time, this is where the kids get to pick out the frosting and decorations for their birthday cakes (they both still like making their own cakes from scratch with a Lazy Daisy recipe). I like Raley's a lot. I am glad it's still one of my regular retail stops.

Two new local shopping establishments are being added to our routine: Berry's Market and the True Value Hardware stores down the street from us. But that's another story ...

Sunday, November 12, 2017

The Schoolbox Project: Disaster Relief Unsung Hero

So, there was this wildfire ... The kids and I were displaced for over a week from our new home, which we'd moved into barely a week prior to that.

View from my bedroom balcony, 3am
Schools shut down. No one knew where the fires would flare up next or when they might be stopped. For the first 3 days, the main focus was on evacuations, not containment. While the closed hospitals and schools had and used their email, phone and text systems to communicate with patients and parents, other organizations were silent.

No one answered the phone at our new apartment complex. The Boys and Girls Club never picked up, let alone posted a message or provided a recording. Nothing from the North Bay Regional Center. Roads and highways kept closing. Highway 101, the main thoroughfare, was closed periodically, with some main on/offramps closed for over 10 days. People were still trying to find staff, get a phone signal, locate the proper agency who could okay a reopening.

Some children on the spectrum lost their home and their schools (through fire or temporarily via evacuation). Regardless of the type of loss, these losses hit our kids on the spectrum especially hard. The familiar neighbourhoods and routines that helped keep the overwhelming world in patterns they could deal with were gone. Suddenly.

Many, like us, left in the middle of the night, with flames close behind them. And suddenly, they didn't have a home. The world looked, smelled, sounded, and felt totally different.
View from living room window, 3am.
While parents were faced with still having to work (if their jobs were still there and functioning), monitoring the radio for updates, trying to call insurance, or filling out assistance paperwork, our kids on the spectrum were afloat in uncertainty, stress, and trying to hold it together.

Sunrise two days later, 10 miles north of our apartment: rush hour.
For most of a week, we were thankfully able to stay with local family members. We had time to pack some clothing, our cats, and other items meaningful to us on our way to safety. After the first day, I went to work. It had power, gas, water, phones, and the internet -- a combination missing from most of our area for almost 5 days. It also allowed me a daily pilgrimage to the police lines to visually reassure myself that the apartment still appeared to be fine.

My daughter tended a house full of cats, read, and helped out a lot. She had friends to talk with. James ... had his Kindle. He was with people who loved him in a familiar place, but it wasn't HIS place. He and I slept on sofas and he had to deal with living with a dog and eating different foods. He did get to watch a little more TV than usual but he was off his orbit.

After several days of being polite and trying to keep it together, James started verbal stims, spitting (in garbage cans, but still), and taking random things apart. I started taking him on drives to find a phone signal and let him use my phone for internet access. We spent part of a weekend afternoon bagging carrots for the local Food Bank. Anything to give my family and James a break from each other after my being at work.

Then I heard about the Schoolbox Project. A temporary setup was opening close to my work: the Skylane Project. I signed James up. He went there for a few days, until his school and Boys and Girls Club opened back up. It was wonderful. The staff were kind and patient. I could tell they loved working with kids and wanted to give them a safe place to be.

I could check on him during the day on break and pick him up after work and we'd head "home" together. James liked getting outside and being with littler kids (he was pretty much the oldest kid that I saw there). He helped them put things away. He tried sneaking out (testing) and the staff and some hockey team players took the time to talk with him about staying with the program and then engaged him. He spent time in a Quiet Tent. He jumped and skipped. They had his adored Nachos Doritos for snacks. He really liked the day that someone brought in a ukulele and let the kids take turns making sounds with it. I asked James what songs they sang and he said: Down By the Bay.

 It was a good break for James. It meant a lot to me, as a parent trying to get us back to normal. We were very lucky that our place was okay and we did get to go back. James' school reopened and all the staff and most of the students returned. We are thankful that we were able to get back to our routines in our spaces.

Looking back now, after about a month, I can see how much the community has been responding to this crisis. It is amazing and gives me hope. There are many people and organizations helping those hit with losses. I salute them all, and not least The Schoolbox Project. They heeded a need in a crisis and tended to it, and our special needs kids and families benefitted. Thank you.