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. 

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.

YAY!!!

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.

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.

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.

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.

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.

Happy New Year?

We're making zero progress with school for Calliope.
Today we had a lovely hike with little kids because Calliope won't go.
She can complain, lecture, monologue, but there is no conversation, no happiness. I'm so sad for her.

No help to be found

I've called everyone and every agency I had heard of, read about, or found listed in a phone book or brochure. So far, things are just getting worse for my oldest daughter and all of us. Who can help a kid? Why are all these helping agencies telling us no? Are these fools gambling that my child won't do something horrible? They are taking that gamble for everyone in our community. It's not okay with me, and it can't be okay with you. Kids need issues addressed when they arise, but we've been seeking out help for 6 years now. But we are getting nowhere. I'm incredibly discouraged and feeling pretty hopeless about our future.

Fresh Heartbreak

The doctor told us what we already knew, but my heartbreak feels new. Somehow the documents presented showing some skills at the level of a two year old didn't surprise me, but it did renew my fear that my daughter will always need a caretaker. She's aware of her age and that kids drive at 16. She wants to drive, but I can't see any way to put two year old reasoning, processing, tantrums behind the wheel of a car. Her life is going to be so difficult and so limited. I can only hope she finds happiness.

Doctor IEP

The doctor told us what we already knew, and it took almost three hours. Eleven people in the room to hear what we have known for at least 3.5 years. This is how our public schools work to deny a child the education they deserve.

Summer Vacation Starts

Calliope is back home from the hospital in Nevada and doing okay. Her medicines have changed, and she's less verbally aggressive and much less emotionally abusive. It's almost nice to hang around her. Tonight I was able to make dinner tonight because all my daughters were playing with dolls upstairs. It was a miracle in my own home. Fifteen minutes of content children playing together. School was finished this year with what is called home hospital. A teacher came to the house the last three days of school and did a few assignments. Calliope was enjoying geometry, and that is so cool. Our options for going back to school are limited and far from ideal. My parents are able to come to our house a few more weeks to help out. Maybe they can handle the transportation to the school and the outbursts surrounding school. There is a theraputic home in San Luis Obispo that could be a good place for Calliope, but it won't have openings until maybe July. That's no help to us right now. We haven't heard from Department of Social Services since the hearing about child abuse claims. I'd be happy to get my letter saying the investigation was inconslusive and never hear from them again. Still, the child welfare clowns are ever present in my thoughts. I wonder how they would look at decisions I make, choices made in the moment, what food I have in the fridge and pantry, what my kids are wearing (or not wearing), how my housekeeping measures up. All these things that people judge us on that don't matter when it's just some lady at school or a random grocery shopper, but they matter a great deal when a social worker writes it all down in her report. Those social workers write down all their judgements and make guesses as to what they are seeing. I'm never letting them in my house again.

Road Trips

To catch up, Calliope was removed from our home January 18 by County Mental Health Crisis. She was transferred from SLO inpatient to Aurora Vista Del Mar in Ventura even after I talked with the SLO doctor about how poorly run a hospital it is. We had decided that we needed to find a longer term treatment option and decided on one in Sherman Oaks. The morning I was to drive her from Ventura to Sherman Oaks became a circus.
Child Welfare Clowns contacted the hospital and told them Calliope had to know where she was going. Of course she flipped out and found out later that she was threatening to crash the car to kill me. Our plan to break the news was to do it at the hospital with staff present and make it sound like a cool place filled with cool teen girls. If she freaked, she'd be readmitted to the hospital. If it was cool, I'd drive her and check her in. Sooooo… we had to hire a guy to drive her. I drove to Ventura to give the driver a check for $450 and Calliope's suitcase.
Calliope's stay at the Sherman Oaks house was short. LA County Sheriff came to take her after she make threats to staff and injured a girl that had to have a head injury treated at the hospital. She stayed at Aurora Charter Oaks Hospital for maybe a week, and she threatened me when I visited her there. It was decided that she needed to go out of state where there aren't as many laws restricting staff's ability to keep her and other patients safe. She agreed to allow her grandma and grandpa to drive her from Covina to Bakersfield then to Reno, Nevada.
She's been at this new place for over two weeks and has had both sets of grandparents visit. Our family went up for a therapy session (only grown ups), and it was a quick one. She was perseverating on this list she sent and us not bringing every item on that list. We were in the little room with the therapist a couple minutes when Calliope kicked the coffee table into my leg, several times. The therapist asked if she needed to call someone to help, and Calliope said no. She was excused, and the therapist took her back to her room. Chris and I waited.
It seems that these people all want to start in square one and ignore all the other times we have taken that first step. They aren't seeing that Calliope's brain is really sick and needs treatment. She threatens to punch the doctor in the face, and they are still wanting her behaviors to be 'attention seeking' because she doesn't have the relationship she wants with her mom. How can these professionals be such dummies?!

Mommy Guilt Times Four

I am constantly reminded about what I could or should be doing. Facebook walls with great at home play/therapy ideas, tweets about taking kids to social skills class, blogs about families living gluten-casein-soy free, neighbors taking kids to story time at the library, instagram pics of girls in dance class, texts from well meaning friends and family with something they just read or heard about for treating autistic kids; they all highlight the things I'm not doing, can't afford to do, can't manage to fit it into our life. I'm just one mom and can only do what I can do. Trying every new thing would take incredible amounts of money and take me away from the rest of the family that needs me too.
However much I'd like to do everything to help Calliope, everything to help Cooper, everything to help Clio, everything to help Claire, I'm a mere mortal.

Calliope at her IEP meeting

I had invited Calliope to the IEP because she wants to be in control and thinks these meetings are people talking bad about her. I explain that the grown up are trying to figure out what she needs and how we can help her learn. Her idea of school success is very different than mine. Calliope needed to tell the IEP team what she was thinking.
One suggestion was a different class at the far end of the same campus, Opportunity School. Calliope was concerned about missing art and the social times like lunch on the main campus.
She craves social interaction but doesn't have the skills to understand people and build a friendship. I can't be sure there is a way to teach culture to her.
Free and appropriate education is a tall order for Miss Calliope Joy.