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.

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.

People & Their Alphabet Soup Credentials

Let the rat race begin! There is nothing more that I hate than to make phone calls about my children. Nothing. With my son, it became ever so apparent. Be ready to answer the same questions to 20 random people who may only be in your life for a brief second.

My first call was to his Pediatrician. We made the appointment, discussed concerns and he gave me a referral to start the testing process. Upon trying to schedule the evaluation appointment, I found out I had to go through our County Health Department, first. That they would send me to a site for testing after a prescreening. Second round of the same questions and answers. The woman gave me the phone numbers, addresses, and appointment dates for this next phase that was also a two-step process. I met with the Supports Coordinator one week and the next, the big 3hr eval at a different location. I was also informed to meet with Early On before hand to see if they could pin point a diagnosis for a starting point while waiting for the 3hr evaluation.

Early On rubbed me the wrong way and I didn’t even get a kiss first. Leading up to the appointment, I got a call and had to yet again, answer the same questions like before. I was curious to see what they may do to help my son. I started to sift through pages and pages online. A few things bothered me. One fact was a school dx was different from a medical dx. Why? Since when does one supersede the other? A commenter suggested that school systems only allot for a certain amount of students. Another commenter said they only prefer to take on the more severe cases. Either way, I feel that if I am paying taxes and we need services, we should be able to get them when needed! End of story, right?! Wrong and apparently, I’m foolish because I am currently in a fight trying to get my son into Early On to help with his social and communication issues.

Here’s how it all went down. My son and I met with the schools Child Psych and OT in a tiny room. I answered the same redundant questions for the millionth time and all the while, my son played with the OT. The OT tried to get him to do different things. He would run around the room in circles, not listen or look at the OT for very long, he started to fidget his finger tips. I noticed my son become agitated and annoyed with it all. I heard him start to repeat things and he started to have a meltdown when she took a toy away. She offered him the toy again and he wasn’t having it. No way. He wanted to burn the world down. Luckily, we were at the end of the pseudo 45 min evaluation and we packed up and left.

Two weeks later, I get a call. The Child Psych tells me that my son was not delayed enough and wouldn’t be eligible for services but to still come for the next appoint to go over the results. Hmm.. fair enough. Maybe all this was in my head? Maybe he’s just being a wound up, wired for sound typical kid. As days went on, no way. Things started to come out more. His repetitive speech, his OCD and the lines of toys or juice boxes, his towers more intricate, his demand for cleanliness.

The day we went in for the results, I just knew this women was going to infuriate me. I don’t know why, but I did.

We walked into her office and her colleague took my son over to the play mat to play and distract him during our discussion. She pulled out the results and started to go over the scores. She said his adult interaction scores were high and peer interaction scores were high. I said bluntly,” I do not agree with the peer interaction score. I know he’s ok with adults. Other children, no.” She asked, “why?” I proceeded to tell her how he acted in the waiting room the day before for the 3 hour evaluation and at a birthday party. That there weren’t any peers in that room the day she held her fake 45 min test. That if she wanted to be accurate, which I suggested she should be, to let him go in the room behind her where other kids were playing and see for herself. She wasn’t having it.

Ready to be mad? She had the audacity to say, “well, I have a PhD and I’m telling you that it would be medical malpractice to classify him as having ASD. I’m not saying you’re a horrible parent but he’s just a willful child and unless something traumatic is going on like parent child abuse, I don’t know why he’s acting out. Maybe it’s his sinus issues. I put that in the report, too.” Then gave me 3 books on raising willful children and that was the end of our meeting. I grabbed my son and left immediately.

Talk about a slap in the face. My blood was boiling. How DARE she say any of that! Willful children do things as they please. They do not care about how others feel at the hands of their actions. My son does. He apologizes after a meltdown. He cries to me about how things feel. Just thinking about this day makes me absolutely livid all over again.

Why didn’t I get into a battle of wits with her then? Oh, believe me when I say I was literally biting my tongue but to have a valid argument, you need to have all the accurate information to verbally destroy someone in a debate. I didn’t have my ducks in a row at that point. I hadn’t received his results from the 3hr evaluation he had just had the day before. In situations like this, it is better to speak less, listen more, and than come back armed with every stitch of paperwork needed to shove it down her throat from REAL doctors.

A week later, my son received the diagnosis of mild to moderate ASD. I cannot even begin to tell you what the scores mean but the summaries were accurate in painting a big picture of how my son behaves socially and how he lacks skills in communication. The 3hr eval COMPLETELY contradicted the school.

My life with an Autistic.

I decided to write this as a way to help other families who are just as lost as I was in navigating this new world. While my experiences are still fresh, this will also be a way to vent the frustrations that also come into play. If you’re reading this because you’re curious, suspect something with your own child, or you already have a diagnosis but feel lost, I’m sure a lot of this next paragraph will make you feel not alone and definitely not crazy.

My son is almost 3 years old, diagnosed with mild to moderate ASD (Autism Spectrum Disorder). As he ages, this diagnosis will probably change. I started to notice little things shortly before he turned 2. In all honesty, I wouldn’t be shocked if the problems I had with him as a newborn wasn’t a huge clue. I joke about him coming into this world kicking and screaming and he hasn’t stopped yet. I wish I was exaggerating.

I was secretly envious of other moms bragging about how well little Suzy slept through the night. How much of a good eater she was or how much she was babbling. My son never SLEPT. You expect to be woken up every few hours to feed but that was not what he would do. I would rock, sing, pace, hum, feed, check him over, EVERYTHING. So, I brought it up to his Doctor. He suggested to change his formula and that he was fine otherwise. After finding one that worked and a lot of wasted money later, backed by gas drops, I thought I would be in the clear. Nope. Still angry (but full and not gassy). Still an insomniac. I did what any parent would do and just accepted the fact that he was a colicky baby and got used to it.

The months went on. I tried everything to get him to crawl or walk. He started late for both. Around 11/12mo, he started to crawl and a month later walk. He did start to babble around the usual milestone marker. I looked at milestones as a point of reference, nothing more. Some kids are super early or late for everything. So don’t stress too much if this sounds like your baby. Please.

So, aside from a few bumps in the road, everything seemed relatively normal. Around 18mo, he developed a love for books. I mean a deep fascination. He would sit for hours listening to me read to him, page by page. Starring at all the pictures in wonder. All the while I would watch his facial expressions and change the tone of my voice for each character to get him even more excited about the story. Book after book.

Later on, the puzzles started. If he couldn’t get one to fit just right, he’d fling the whole thing across the room. We’d play with his cars and blocks. I’d sit there with him and make houses or forts out of them for the cars to drive around. If his little tower fell over, he would get mad and smash it on the floor. If they didn’t connect to the other just right, he would smash it on the floor. If the cars couldn’t go where he wanted them to, he would throw them across the room. If he had them in a line and I moved them, the gates of hell opened up.

Food was a similar story. It took him a while to figure out holding a spoon. Once he got the hang of it, I couldn’t pull my fingers back fast enough in fear he might make them into little bloody stubs! He was doing so well and then one day, the picky eating started. Of course, I chalked it up to typical kid stuff. It slowly became more and more intense. More limited and restrictive. Foods I used to be proud of being able to get him to eat, he no longer touched. Wouldn’t even tolerate it being within arms reach. If he could grab it, it would be on the ceiling, walls or the floor. If yogurt had fruit in it, he’d pick out every piece or split the chunks onto the floor. It has to be plain. He was on a tomato soup kick for a while. Lunch and dinner. Everyday. At the moment, his latest kick is a plain cheese sandwich. Everyone says feed him what he’ll eat. I cannot wait to meet with the dietician as this issue drives me nuts in particular.

Social events you think would be fun, cause us the most stress. Birthday parties, parks, neighborhood kids, even going for a walk. I started to notice he would play next to kids, but never interact with them. He would see them, get excited and run up to them and just stand there and watch them. When they would try to interact with him, he would either yell, scream, or shake in fear and try to hide or he would become aggressive towards them. Which lead to a lot of judgmental comments. A LOT.

Communication and noises. The big eye opener and what made me start this whole process. Typical noises a person hears like a car driving past our street, he would stop and say, “what’s that noise?!” Airplanes over head, fireworks at a great distance, he’d cover his hears and stare. I didn’t think any of that was troublesome until our family was having a good time talking over dinner. With everyone talking, he covered his ears, started to kick his feet and yell, “TOO LOUD, MOMMA! TOO LOUD!” We all just stopped and looked at him. He started crying, shaking his head side to side, keeping his hands cupped over his ears. I picked him up and took him to his room to calm down. I thought maybe we were being too loud. He did it again when his father and I were talking about stuff that went on that day. Then again when his sister and I were playing. He continues to do it to this day.

I started to notice limited eye contact. How he’d point but wouldn’t look at whatever it was he wanted, how he’d call something by a different/easier name that wasn’t even close to what it was (example: booboohead for his tablet). How he’d give people strange looks if they got too close, like a scowl. Wouldn’t let you hug him or give him a kiss. How he HATES to be dirty, have something on his hands, and hates for his pant legs to touch the ground. God help me if I took away his blanket. I also noticed repetitive speech. The last few words I would say, he would repeat them over and over again. The speech issue is becoming more and more intense with the frequency in which he does it.

Enough is enough! I had to do something.