Tuesday, September 16, 2014

Neurodiversity yells SHUT UP

The overwhelming message from the loudest neurodiversity folks is "shut up about how hard it is to raise your autistic child." 
I understand that autistic adults exist and have worth. I also empathize with their families that lived with the child and their challenges and did all they could to get through every day. 
When Shannon Rosa scolds me for being honest about the level of violence my child exhibits, I'm silenced. She unfollows me on twitter because I'm not supposed to share the shit that autism does to our family; it interferes with the neurodiversity brand. 
Their message is that autism is just a difference, a gift that kids are born with. That is not the reality for many families with a child on the autism spectrum. 
Parents can be seen as an obstacle to an item or activity the ASD child wants, and a physical attack or murder is the way to remove the obstacle. That's how things work when autism prevents a child from seeing people as people. 
With the data from 8 year olds showing 1 in 68 kids having an ASD diagnosis, we know that kids born today have an even higher risk than 10 or 20 years ago. Maybe if the reality of what autism can do to families, the pain it causes in the affected individual, the lack of real help and the reality of parenting an adult but dependant child, got out, people would hesitate to start a family. 
There's so much money to be made off sick kids that no one but humble and lowly families are willing to say it is hell in the trenches. 
Let's figure out what is causing the brain damage we call autism and stop making kids sick. 

Wednesday, February 27, 2013

We got in!

While unloading girls from the minivan to pick up brother at school, my phone rings. It's a woman from Tri Counties Regional Center wanting to schedule a thing. I'm confused and ask her if we have cleared the last hurdle. She seemed to know what I meant and assured me we were *in* with regional center. I did a little dance in the sand by the tree that shades the playground.


Now we figure out what they're able to do for her and plan for action.

It took 5 years, no less than 6 doctors, 100 phone calls, several letters, 1 lawyer, but we're there. Phew.

Thursday, February 14, 2013

26 acts of kindness isn't enough

My view is probably different than most moms. Yes, I'm so sad and heartbroken for families that lost a loved one in Newtown, horrified that the survivors have to work through all they saw and felt and keep living. Mostly I'm really angry that it happened.
Absolutely angry that the shooter's mom had guns in her home. Furious that the shooter wasn't receiving appropriate treatment for his mental illness or neurological disability. Above all I'm ANGRY that my daughter is being set up to fit into that shooter's shoes.
She's been bullied on her walk to school, bullied and abused in school, physically attacked on her way home from school. Even now, years after I started talking with the school about my daughter needing to be protected at school, the school system is still failing her. Maybe it is failing all of us. She doesn't have a chance at a productive life without proper education. The school is doing all they can to avoid their legal obligation to her.
I'm ANGRY that their failing my child could lead to horrible outcomes for her, her family and her community. Yes, I'm mad as hell, and I wish I didn't have to take it anymore.
There are two meetings at her school tomorrow, and I'll attend, participate, plan the next idiotic meeting.

Monday, February 11, 2013

Teach your children…

There's this idea that children do as they are taught.

So wrong!

Parents teach bigotry, and children choose love. Parents teach Catholicism, and children choose premarital sex and contraception. Parents teach alcoholism, and children choose a sober life. Parents teach hoarding, and children choose a clean and organized life.

Here's the deal: children make their own decisions. They can be nice or nasty, and it's their choice.

I hope we keep showing our kids how to be nice and highlighting the good feelings that come from being nice. We can show our kids the effects nice people have had in our lives. We can teach nice, but kids make their own choices.

The adult bullies I have run into have kids. I pray those kids learn nice and make the choice to be nice.

My oldest doesn't even understand nice. When I make a pan of brownies for a neighbor or friend, she's upset that I'm giving our stuff away. We have no shortage of food, but she's very upset when I give things away. I make a loaf of bread to give away, and she doesn't understand that I'm taking time to make a thing to give away.

We can teach all we want, all we can, but kids do what they do.

Tuesday, January 29, 2013

Maybe I'm Grumpy

And so what?!

I don't sleep we'll when I do get to sleep.

Money is tight, so I don't get to do little things like a haircut or massage.

Even if we had money, I wouldn't be able to get away from kids and house responsibilities.

When I do all the work to find a sitter or sitters, it's because there is a meeting at the teen's school, or I have to take her to one of her doctors or therapists.

I feel like it's all for nothing because we aren't seeing any positive change.

My younger kids are paying a very high price for Big Sissy to stay so sick. I'm paying a high price; exhaustion and abuse are making me quite grumpy.

So, I'm grumpy and get grumpier when I hear ninnies preach about being a perfect parent and pass judgements on anyone who wasn't able to produce a perfect child.

Saturday, January 26, 2013

Primary Thought

It's always Calliope.
Tonight I was thinking I'd get frisky with hubby. I got out lotion and was massaging his feet. He hardly noticed me. A couple minutes in, "oh hi."
I keep going on the first foot, move to the next, and I'm hoping he feels good and relaxed and wants to kiss me. Then he says, "Social Thinking."
He was reading about therapies for autism treatment! I'm not getting any tonight.

Wednesday, January 23, 2013

My Time

I'm becoming increasingly concerned with how much of MY TIME the school wants to take up. I'm sure wasting a family's time is a tactic the school uses to make us give up the fight. They know we aren't giving up on our child and continue to require several hours, up to 8 hours, of my time every week. I've got better things to do than attend their meetings. My kids have better things to do than wait for me while I'm on the phone with school people, babysitters, lawyers, making sure everyone is able to attend the next flipping meeting. My younger kids go to babysitters. My oldest comes home from school to an empty house. What compensation do they get for missing out while mom and dad are at a meeting? What is my time worth? I want to charge them $20 an hour for MY time that they are wasting.