Some rambling thoughts from me to you.

Recently someone asked me why I don't support Autism Speaks. Actually, quite a few someones have asked me that and it got me thinking about the journey I've taken since my son's diagnosis. It's kind of a funny thing, really. And it actually starts three years before my son was even born.

I was diagnosed in 2005 while I was in the army (shortly after I got a medical discharge for an unrelated condition). I didn't actually know about my diagnosis at the time, because the psychologist didn't tell me. I found out about my diagnosis two years later. With the help of the American Legion I got copies of my medical records, including my psych records which listed my diagnosis as Asperger's Syndrome.

I didn't think anything of it. I didn't know what autism was, I didn't care. I never bothered looking it up or asking about it, because I just didn't care. I continued to not care for the next three years. I didn't care until 2010 when a neighbor asked if my then two-year-old son had been evaluated for autism. Then I started caring about what this autism thing was, so I started looking into it.

So, in February 2011 my son went through EI and was given an informal diagnosis. Then I started really looking into autism. His EI speech therapist was great, he loved when she came over to visit because she focused on things my son wanted to do instead of forcing him to do other activities.


And then I took him to the doctor to get a referral to a specialist for an "official" diagnosis. The doctor would not give me a referral because our insurance would not cover autism treatment, instead we got a referral for speech and occupational therapy.

The speech therapy place seemed great at first. There were so many awesome toys and even a massive ball pit. But the therapists weren't so great. He went three days a week for half hour sessions. He saw a different therapist every time, which was very upsetting for him.

We had to cancel a few appointments because of the extreme heat of Oklahoma summers. It was over 100 degrees every day with 40% humidity, our car had no AC, and the windows wouldn't go down. I was told I was being selfish for canceling the appointments, which I believed at first so I forced myself and my child to suffer a 30 minute drive in heat stroke weather.

Then the therapists started getting mean. Physically restraining him, taking away his comfort items, not allowing me in the room during sessions. And that's when I stopped taking him to therapy. About that time he enrolled in pre-school. That wasn't so great, either.

The pre-school teacher let him walk out of the classroom and they didn't notice he was gone until someone brought him back two hours later. They tried to put the blame on another parent, claiming someone must have left the door open so he could escape. They refused to accept that he could open the door. The only person on my side was the school psychologist, who they tried to remove from all the meetings because she called them out on their BS.

So we left Oklahoma for Oregon, my home state, in the winter of 2011. We made a pit stop in Montana for a couple months to stay with my BFF. It's in Oregon where my son attends the super awesome school I mentioned in a previous post.

Anyway, back on topic. After the negative experiences we had with school and therapy in OK I started advocating more for my son and myself even though I didn't know about the self advocacy movement. I'd never thought of autism as a bad thing. It was always just something we have, something we are.

At this point, I still hadn't heard of A$. It wasn't until i watched an episode of "What Would You Do?" that I learned of the existence of A$. That's also when I learned that most autistic people don't like A$. I believe the episode aired in April 2012.

I watch all my TV on Hulu, and in the comments section of the WWYD autism episode there was an autistic person complaining that an A$ board member was involved in the segment because of the controversy surrounding A$. I asked what controversy they meant and was met with links to self advocate bloggers and ASAN. I read the blogs and looked for more. And then I put A$ out of my mind.

And just this spring my son received his "official" autism diagnosis. The SLP from the school was there, even though he wasn't enrolled in school yet (she was my sister's SLP when we were kids, too). He received his diagnosis from OHSU/Doernbecher CDRC in Portland, OR. Which, as I found out at the end of his eval, is associated with A$. They gave me a copy of the 100 day kit from A$.

I read the 100 day kit because I was curious to see what was in it. I up to the point where it tells parents that it's good to mourn for the death of the child they were supposed to have. Then I showed my sister (who's also autistic) the book and she got mad. She pointed at my son and said, "he's not dead, he's still right there." And then for a few days she ranted about the concept of some hypothetical "normal" child that I was apparently "supposed to have." Actually, she still occasionally rants about that.

That's when I started following the FB pages of some wonderful people and groups, like Karla's ASD Page, Yes, That Too, and ThAutcast: Aspergers and Autism Community. Which led me to PACLA which introduced me to many other self  advocate bloggers.

And that's where I first saw the Autism Every Day video. That video pissed me off for so many reasons. The woman saying she wanted to kill her child in front of said child was atrocious. So, I showed it to my sister. And she had some choice words about the people in the video, about how they were only concerned with themselves and how they were complaining about how their children's conditions negatively impacted them as parents instead of expressing any love or concern for the children.

The one part of that video my sister focused on, however, was the woman who said she couldn't go out to get a bagel with friends because of her child. As my sister points out, my son goes out to eat all the time. Sometimes he screams in delight because he likes going out. Sometimes he screams in anger because he's hungry and the food is taking too long.

Nobody has EVER made any rude comments about my son's behavior in public. He has taken food from people's plates (I try to stop him, but he's a crafty little critter) and I apologize and the people say it's fine and tell me how adorable my son is. He sometimes runs through the grocery store yelling or singing as loud as he can, nobody complains. He's crashed into people, they just laugh. He's knocked things off of shelves, no complaints (although, that might be because he always puts things back when he knocks them down). He's even gone full meltdown in public and nobody says a word.

We go out all the time and nobody has ever made a rude comment about my son, and only twice have we gotten dirty looks. We've even gone to fancy restaurants, trade shows, business meetings, court, and other grown up places and nobody complains about his behavior.

Some people say I must live in an area where people are just really nice, but that's not true. My sister says it's because I radiate "bitch aura" and people are afraid to say anything. That might true. I honestly think it's just  because people are afraid of saying something rude and looking bad in front of others.


The woman in the A$ video also says parents of autistic kids can only be friends with parents of other autistic kids. I told that to my friends and they laughed because none of them have autistic kids. Hell, I don't even know any other parents of autistic kids. My friends haven't stopped being my friends. They aren't going to ditch me because my son is autistic or for any other reason because they're my friends. They're real friends and real friends stick together and help each other out. If you lose any friends because of your child's diagnosis they weren't you friends to begin with.

This is why I live here

I hate the town I live in. It's not a bad place, really, but it's a small town and I hate small towns. I hate that stores close early in small towns. I hate that there is no one-stop shop. I hate that the nearest hospital is an hour away. I hate that I can't buy food here. You see, being vegan makes it hard to find food in general, but even harder in a small town. Yet I live here by choice.

There's a lot of good things about small towns. People are generally nice-don't get me wrong, there are jerks in small towns, just not as many. And if you need something, people will help you out. If you're walking down the street and someone drives by they offer you a ride. If someone sees you outside in the cold weather without a good coat they give you one. If you need something, someone will help. That's how it works in small town.

There aren't a lot of services available for autistic people. But there is something much more important: acceptance. People don't say rude things about my son. People don't expect my son to behave in a typical NT manner. He doesn't get bullied at school, everyone there loves him. And if he manages to get out of the house? Well, everyone knows who he is and where he lives, so he won't get far.

Today I spent the day at school with him because the autism specialist was in town (she's only here once a month). She was doing an informal training/education session with the teachers and aides that work with my son regularly. I was invited to sit in on the session, so I did. I won't lie, I expected to need to correct the specialist on a lot of things, but that didn't happen. The first thing she said at the beginning of the meeting was that while she may be the autism specialist, she is not the expert on my son.

The strategies discussed did not take the path of trying to alter my son's autistic behaviors, instead they focused on altering the teaching strategy to suit my son. There was no talk of trying to stop his stimming. No talk of "quiet hands." No talk of desensitizing him. Instead, she offered suggestions to help make the day easier. She brought a visual schedule for him to use at school to help with the transitions. She offered tips on helping him communicate through picture books. She offered suggestions on how to get him interested in class work by incorporating things he likes.

She also offered to help with issues experienced at home, specifically the sleep issues. She offered to come to our house and work with my son if I need. She respected my son's needs and my concerns. She spoke to him instead of speaking at or over him. She assumed competence. She didn't paint autism like a disease. When I lived in the city the specialists were just the opposite: they thought they knew more than I about my own son, they wanted to break him of his autistic behavior, they assumed he was stupid.

I am not articulate

People often tell me that I am very articulate. I don't agree with that. I struggle to find the words to convey what I am thinking and I have a pretty serious stutter. I struggle to communicate because of this. Spoken words end up mangled and confusing, written words just a jumble of incoherent thoughts. I am a great writer. I can spin amazing narratives, or so I've been told. But conveying my thoughts-with words, paper, or technology-is a never ending uphill battle. Some people find my struggles to communicate humorous. It's part of the reason I rarely post here. I type out massive walls of text, jumbled thoughts and emotions, then I just delete them. I get criticized for my jumbled thoughts and stuttering speech, which makes me not want to speak. Criticism is meant to silence us, but we must not be silent. Speaking out is important, even if our words may not come easily.

A study in sleep deprivation.

It seems to me that my son is a budding scientist. This month he appears to be performing a sleep deprivation study. You see, he has been waking up anywhere between 11PM and 3AM most every day this month. We've made some interesting discoveries thanks to his research. For example, it only took a week to train myself to wake by 3AM. In fact, I have started waking on my own before he wakes. Also, I no longer feel tired when I wake at a ludicrously early hour. I do, however feel like I'm going to pass out from exhaustion by 6PM. It is rather frustrating when your child gets on such an odd sleep schedule, but you have to adapt. The first few days of this sleep pattern I just kept telling my son to close his eyes and go back to sleep. After about a week I was telling him to just sit still and stop making noise so I could sleep. Then at some point I just started getting up when he did and going to bed when he did. It's so much easier to just roll with it. He's actually getting more than enough sleep, he's just doing it on a new schedule. So I change my routine to suit his needs. And on that note, I need to get to bed so I can get up at 3.

First post! XD

Well, this is it. The first post. I've tried to think of something witty or clever to say, but I've got nothing. So, I will start by explaining what this blog is for. This blog is where I will vent. This blog is where I will try to share useful tips and experience with others. This blog is about my life. It's about me. About my son. It's about all the things that matter to me. I will try to post regularly, but life is hectic so I make no guarantees. It's very hard for me to put my thoughts into words sometimes. There's just to much going on in my head all at once. Right now is a perfect example of that, I'm nervous and excited and anxious and depressed and happy and sad and angry all at once. I'm planning a trip, you see. Next month I will be taking my son to spend Christmas with his dad. My son is autistic, so a trip like this (we'll be driving halfway across the country to get there) requires intense planning. We're driving for many reasons: plane tickets are too expensive, my son has never been in a plane, in a car I have control of when we stop, to name a few. It's going to be a long trip. It 25 hours drive time plus the time for stops to stretch and sleep.  I'm not sure how long we'll stay, that really depends on how things go when we get there, I suppose. It seems like time is dragging along so slowly now. The closer we get to our trip the slower time seems to go. Normally it would be the opposite-time rushes by leading up to big events-but this time is different. It's different because this time there are serious topics I must discuss with my son's father, and I just want to get it over with. But these are not things to discuss via phone or internet. These are in person topics. So I have to wait. And the waiting makes me anxious because I keep playing possible scenarios out in my head. Mostly bad ones. The sleep deprivation isn't helping- lately my son has been waking at 3 in the morning. But that's a topic for another time.