Look For Autistic Adults!

Well,

It’s been a few years since writing anything. I wanted to update and share a few things. Especially, a few things that is rather a touchy subject for Autistics. It’s been about 2 years and a lot has change. I’ve learned so much. More so from Autistic Adults than any Doctor. The anxiety and daily fight is no longer there. Those first few years were intense. For the most part, things have calmed down.

Who knows more about a specific condition, Doctors, who have years of guessing games under their belt and “how to” ideas or the people who live it everyday? I chose the later. I’ve met some pretty amazing people on Facebook online communities. Some verbal and non verbal, all different areas of the spectrum. One thing I found so interesting is that there are more families who now see a lot of characteristics in their own family trees. I have always felt ASD was more of a genetic inheritance than some sort of chance happening.

My son is now almost 4 and my daughter, 2yo. She is also diagnosed with ASD. Both of my kids are the same and polar opposite in many ways. One thing that was so surprising was how much more difficult it was for a girl to be dx over a boy. Girls naturally learn to watch people. I’m definitely guilty of that, myself.  That’s how they learn to blend in. Girls are also more timid and shy. Just noting a couple more obvious reasons as there are much more but I’d be rambling. You get the point.

My daughter is more “non-verbal/pre-verbal”. We’re in the waiting game with that one. I know many Autists who are absolutely non verbal, never talk or just make noises to communicate. My daughter does a lot of that. She CAN say words but she doesn’t use them. Some doctors also said that she has a receptive delay. While I can see how they would say that, I think she does understand. It just takes a little bit and more effort to get her to understand. If she really doesn’t, that is where ecolalia comes into play. Then, I know I need to change how I am asking her to do something.

Which leads to the topic of therapy/ot. My son has been in “play therapy”/ABA for over a year until a week ago when I pulled him out. Why did I pull him out?? After talking to Autistic adults, watching and listening to how my son spoke, I was done. They (the AA’s as I will refer to them now) were right! Now before I go off on a tangent about ABA therapy, please know I am not shaming anyone who finds people who actually care and wants to try different ways to reach or help their child manage their way through a world that isn’t Autistic Friendly. That is not the case. I am merely trying to inform you of what a parent needs to know and look for so you can make a full, well rounded decision about who and where you let your child go. Many Autistic adults suffer from PTSD as a result of this therapy.

The more holistic types of centers will tell you it’s play therapy. While most of it is true in a sense of learning to watch others and looking for social cue invites, ect, how some people go about doing it, reminds me of dog training. Once, my son (who has an extremely large vocabulary for his age) told me he hated “school”. I said, “why is that? You used to love to go?” He then told me how he has to sit in a chair as they hold up candy and tell him he has to look at them for 3 seconds before he can have the candy and then they tell him he’s a good boy. Ummmmmm, Povlov dog bell experiment anyone?? Classic conditioning. Another thing I learned was about the Tech’s who work with your child daily. MANY do not have any type of degree or certification. All they have to have is a clean background check, complete a 20-25 hours online module and two – 8 hour days at the center they will be working at. That’s it.

The tech’s are mostly part timers as well. $17 an hour to do what you could be doing in the SAFETY of your own home, surrounded by people your child KNOWS. I knew something was up when I started to notice how the staff was younger and younger, by that I mean no basic child care experience. It was obvious, the frustration on their faces at pick up time. No uniforms to identify who was a worker or parent or stranger. Lack of basic medical ethics and professionalism.

On a side note, I also found out that the public school system can legally place your child in a “time out room” for any duration time period. Many of these rooms only have a door going in and no windows. Some kids are left there all day. And the kicker is parents do NOT have to be told when the teacher decides to do that to your child. Michigan just past a law THIS YEAR banning such use of a room as discipline only because a higher up official has an autistic child and it was brought to his attention. There needs to be a major overhaul in how we treat people with disabilities (and I am using that term loosely to cover a broad range) be it learning, social or physical.

But why?????

Why are we treating and training Autistics like animals?!!!

Why is Autism $peaks so afraid to have an Autistic on their panel and LISTEN to the Autistic Communities outrage over them trying to find a “cure”?! They do not WANT a cure. They want people to stop being so scared about what if’s, causes, the next big fix and stop demonizing them. THAT’S IT. Simple as that!

Why are there so many DISGUSTING so-called Doctors trying to sell “snake oil” bleach as a CURE ALL remedy?! If you honestly believe your child’s autism was brought on by “parasites”, then believe me when I say that I believe you have parasites in your brain and you need to go drink the kool-aid IMMEDIATELY. How insane! You’re killing your child! Burning and liquefying their insides! You should be charged with premeditated murder!

Why are parents so goddamn gullible to by into that shit?!

Want to know why? It’s a money making business. Any illness is. People are just finding new ways to capitalize on your child’s neurological difference, banking on your “fear of the unknown”. That’s right, I said NEUROLOGICAL DIFFERENCE. Not one person thinks the same way as the next. We all have our quirks. Some are just more obvious than others.

Want to know how to help Autistic kid’s? Look for Autistic Adults and learn to choose your battles. What you think is so pressing now, will not be later on. Work with them at THEIR pace. Join in on what THEY love to do. The one thing I work on the most with my kids is transitioning from one thing to the next because right now, that is the most important thing I want them to learn. Things always change and so do routines.

I remind them in x amount of minutes, we leave to go out the door in the mornings, x amount of time left on the kindles to x amount of time left for toys. As a parent, you change for your kids. Don’t expect them to change for you because it is NOT going to happen. Accept them. Love them unconditionally. Work with them side by side. Anticipate every feeling they may have about something. Work around it. That’s what being a parent is all about.

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Judgement

This subject is a strong topic for me. As a teenager, I used to push the envelope to change peoples thoughts about a topic in a news story, appearance, or anything controversial. I felt like somehow in my own way, I would convince others to be more accepting and tolerant of our fellow man. Boy, did I learn a lot and I wouldn’t change a stitch of it.

I started to see how people can be stuck in their ways. That it was that way and that was it. Parenting as a topic also goes unscathed. Don’t get me wrong, sometimes I end up re-evaluating myself on a constant bases for my own decisions. Some I’m proud of, others I am not. All I can do is accept it, correct it, and move on. I acknowledge my faults, my failures and my anxieties. But you have those small gaggles of “sancti-mommies”.

Obviously, I never was one to try to “fit in” anywhere except for a pair of jeans I could no longer wear. These moms pretend they have their shit together at all times. That their world is perfect and not a stitch out of place. I call B.S. I’ve seen you out at the bar and be in the front row at the next P.T.A. meeting or be out all night and Sunday morning you’re all, “Praise Jesus.” Just stop. Everyone has some type of a problem. Everyone. I cannot expect these types to be accepting of others because they have yet to accept their own contrition’s.

With that being said, I have anxiety. Like some serious fight or flight mess going on. I try everyday as hard as I can to deal with my sons meltdowns. I mean HARD. I will try to distract him, sing songs, play, make up games, act like a laughing lunatic, anything to make him smile and avoid the screaming. The screaming is what gets me the most. I instantly want to hide.

What started to turn my anxiety switch off when dealing with him was thinking about what he feels like to even get to that point. Some days, I feel like I have two personalities because I have to obviously think about my own life and then think like him. There is a lot of frustration. I would be lying if I said otherwise. Going out in a public setting makes his frustration and my anxiety so much worse. But, we are getting better.

During the months leading up to the process of having my son be seen for his evaluations, I heard plenty of comments from outsiders. Here’s a list…

  • He only acts that way with you ((Yeah, thanks. The whole couple hours you’re with him is enough to know how he acts.))
  • Why would you want to label your son ((To get him the services he needs.))
  • He’s just a willful child ((No, he actually says he’s sorry. Willful children do things out of spite.))
  • He is your first child, you just don’t know how to be a parent ((Thank you for saying that to someone who has always been around children, babysitting classes when I was young with CPR for babies, kids and adults and I know how to use a defibrillator compliments of my Medical Assisting courses. Thank you.))
  • Both of your kids have some type of disability, why would you have kids ((Yes, I have full access to a lab and I’m a psychic…seriously?! ))
  • You’re just trying to look for sympathy (No, I’m giving fair warning that I may disappear with him if something happens at your house and to not worry. We’ll probably be inside so he can mellow out in peace.))
  • I don’t want to come around because I cannot take his screaming ((Then don’t come over. My child lives here, you do not.))
  • I never have a problem with him when he’s with me ((See first comment.))
  • That’s not Autism, that’s lack of discipline ((Oh, please! Teach me the ways of Military discipline and how it’s worked so well for you that it will work on a child who doesn’t understand why they feel the way they feel. Please…))
  • He’s just a hyper kid, medicate him ((Because mind altering medications are always the answer… What works on one person may not work for another.))
  • I was going to invite you guys over but I didn’t think he’d play well with the other kids ((Inclusion. Learn the meaning.))
  • God only gives special kids to special people ((I know you are trying to make me feel better or special. Thank you for trying but some things just happen.))

40 million Americans deal with some type of mental illness that you cannot physically see. 40 MILLION. For all the comments I had said to me, I took each and every one of them with a grain of salt because they just do NOT understand. I know I am a good parent. I know I am a good listener. I know, without a doubt, I will be his best friend when he’s older but I am his parent first.

Guess what happened after his evaluation came back? Nothing. No one said anything except, “well, you suspected something and now you know.” I don’t need to hear apologies or have a cheer leading squad. I need others to be accepting and tolerant.  I wouldn’t have him any other way. He’s perfect.