Because This Happens

 I read another mother's story about breaking points. Normally I try to not post too much about hard, dark, times that test my ability to cope and be resilient. But today, on reading this article, I am moved to post in solidarity.

Four years ago, I hit a point where I finally, completely understood how some parents can throw themselves and their children off a bridge, because they can take no more and cannot see a way out. I am not going into details, but it was awful. It looked like things were going from awful to worse with no relief in sight.

I am stubborn. While I never made plans to end it, I understood that pain completely, deeply, and for months on end. It's easy to criticize my weight gain, perpetual tardiness, and mental fatigue. I have been in the trenches with autism for at least 15 years - largely as a single parent and sole wage earner. It's a constant fight against isolation, lack of finances, pursuit of services, too much damned paperwork, and being on alert 24/7.

Things are much better now, but I've had to work damned hard for it. James is worth it. I am worth it. 

If you're reading this post because you're curious about autism, this bleakness happens. It can come and go. It can overwhelm. If you know a caregiver, please reach out. Please be kind. It means the world.

Autism in Numbers

For myself, autism is 90% slog, 10% elation at breakthroughs and successes, at least 25% heartbreak with setbacks, 62% facing how my child cannot interact with his world, 110% trying to figure out how he can engage with and be part of the world around him in a way that makes his life meaningful.

It's 5,642% paperwork. 9,000% questionnaires. $$$ in endless unimaginable extra expenses (large and small) to cope with the disabilities. Paper filing to the 43rd power. The square root of 223% normal life for me. Advocacy into the infrared spectrum of colour.

Underneath and running through it all: love, tears, humour. Music, weird things being said, car rides, obsessions over flies and leaf blowers. Serious campaigns for eating, self care, and impulse control. Mean people, nice people, and YouTube. Higher numbers of kids diagnosed. Reduced financial numbers in state and federal budgets.

This has been brought to you by a tough morning after several brilliant days at the new school that suddenly devolved into self-injury. I am not precisely sure why he decided banging his head on the floor was necessary. We have talked, and hopefully this has been helpful for him. I want to hold him in a hug and make whatever caused it to go away. But he's not that little any more. Instead, I try for calm, work with him and his team, and love him hard.

We've had 2 TBS liquid ibuprofen, 7 crescent rolls, 2 glasses of milk and 1 waffle. Today is a percentage of compromises: 30% school, 70% home rest, and 100% let's try again and make better choices.

In Which Little Things Confound

So ... James has been eating less again. During a recent late afternoon treat out for frozen yogurt, he came across ... something in his frozen yogurt. I still don't know what it was, but he is now deeply distrustful of food.

Which makes him cranky, and prone to hanger.

Over the last two days, there have been episodes of throwing food over a fence, eloping, and a whopping loss of control.

James is trying, but school is again hard for him. We have also started ABA services the other three afternoons of the school week, so that is more stress.

I feel discouraged. How I wish we had had some of this help earlier. How I so wish I knew what to do.

Tonight, I just sat down in the hallway to listen to James. After a bit, he sat down too, by me. He kept talking, about past aides who made him mad. About how he doesn't mean to say bad words. How his brain was running around. He still said he was not hungry.

After an hour, I had to get to bed. I told him it was time for bed and that I loved him. I got him into his room. How in the heck is it so hard to get a tall, growing teen boy to eat? I hope we both feel better tomorrow.

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.

Why? Because We Are All Community

This is brief, but in support of Sunday, her family, and the entire busload of school kids who were dished a whole lotta hatin' at their recent trip to their local Dollar Store.

Please read Sunday's story, in her own words, and support her by spreading information and compassion about those who off the beaten path. The best way to fight this meaness is helping those whose lives look different from ours understand how we are all in this together, regardless of our unique and special needs.