I am going to write this post solely on my own perspective. I am clarifying right now that I know nothing except my own experiences and how I perceive things. I am not writing to judge others or make anyone feel as if they are not doing what is best for them. I do want to write this though because it may give someone a different view, a new way to look at things, maybe open their eyes to try to see from a point of view that is different from their own.
That is what I do, I want to be challenged in my thinking.
I hope to have my eyes opened at all times to different ways to use my strengths for my advantage and to not dwell on what others perceive as my weaknesses, but look for ways to turn my weakness into a non-issue or find resources to help me with them. They do not hold me back, they just are what they are and I could dwell on them, try to force myself to change them so I am like everyone else or just handle them the best way I can when they seem to hinder me, or they annoy me at certain points in my life. Like having a meltdown because of social or sensory or both overload.
I am sharing some of my views on autism.
I can be wrong but in my world I am not, though I am open to being proven wrong. This is a learned behavior I have not always been so opened minded, when it comes to certain things I cannot think differently, I have tried and some things I find absolutely right and absolutely wrong, others things not so much. When it comes to autism I was absolutely in the mind-set of it was wrong, it was an evil that was stealing my child, it had to be cured, I had to pray it away. I was ignorant, uneducated on the subject, and was only going by the media point of view about autism, since I had no reason to question it before that was the view I took.
When Daniel came along, I knew something was different but I was not quite sure what it was.
Although, I was saying he was different because I was comparing him to what others said or how other children were. Many things about Daniel were not different to me, but I knew they were unacceptable in this world because when I was young those words were spoken to me. “You cannot do that, that is not what people do or say.”After discovering that Daniel was on the autistic spectrum, I consumed as much information on the subject as possible. (I still do.) Despite all of the clear signs, I did not really think he was autistic. I mean how could he be, surely he would just stop one day, right?
That is what I prayed for, that is what others implied I needed to pray for, that was what they were praying for.
There was also the hint of “what have you done wrong to your child?” Or “what sin in your life caused your child to suffer so?” There was also those who were completely oblivious. (There are still these people) They saw nothing wrong with him, he is just being a boy or a picky eater. Um…No! He wasn’t talking, he didn’t feed himself, he didn’t stay in a room with us, he didn’t acknowledge his siblings, he would scream all day long, he was unresponsive to me or anyone else, and would spin things for hours and I am talking hours. I am just naming a few and they are some of the most common issues found with autism. Though I am one who believes we should accept the autistic mind, I still feel that we need to find a way to communicate, our way to communicate.
I heard myself at times saying “he is in there, I know it. I have seen glimpses of him”.
I was repeating the script in my head of all the doom and gloom stories I had read, people in my life who also had children on the spectrum but would never say it because “they are healed, in Jesus name”, and I had been hit with Jenny McCarthy and her clan as well all over the media. Everywhere. I tell you what though, seeing Jenny McCarthy was actually my wake up call. Nothing against the woman, but I have never had much respect for her and it is very hard for my opinion to change now. I know she is doing what she feels is best, though there may be success stories there are still those that are unsuccessful and that leaves parents asking the questions like, “why didn’t it work for my child?” or “what did I do wrong for this not to work?” I read all of the websites, researched as much as possible what they were doing because they do not share a lot, it is all “inside” information. You have to purchase more or get involved with a specific person to get the help and that too costs money.
The really funny thing is that it is the same tactics that “prophets” in certain Christian circles use.
There is this whole mystery and intrigue and in order for you to gain the full understanding to “help” your child or say “hear from God” you need to buy this, buy that, be sure to give to him/her and because of your obedience to “God” you will receive your answer, healing, prosperity, your whatever your little heart desires. There are a lot of things like that, I find it no different from the medicine men that came around with their tonics, snake oils and promised people that they would be healed or make them a success. Once again just my opinion, not that it is worth much. I will say this has been my experience so that is why I hold this opinion. Bottom line I wanted(want) to do whatever to help my son. As I began really reading from different sides from the medical people, to the holistic, to the parents who are suffering so, to the Autism Speaks people, I found no one knows. WHAT? That is correct no one has definitive answers, no one knows what the heck they are doing! Everyone is using these children as guinea pigs for their own purposes, even if they mean well and feel that they are doing their best, that is the truth of the matter.
It wasn’t until I hit my wall with Daniel, we were getting evaluations and they were wanting to schedule genetic testing, and millions of other tests on him that I reached out to a mother who was talking about her son with AS, being fully who he is supposed to be.
I had started reading Tony Attwood’s book “The Complete Guide to Asperger’s Syndrome”, my eyes were starting to open. The woman had responded to my comment about me wanting Daniel to be fully who God intended him to be, she said “Daniel is who God intended him to be”. I knew this, I felt this but everyone else was telling me that was not true. People didn’t say it with words all the time, they did it in action, half the time I didn’t understand why people said the things they did about Daniel. There were a couple of “seasoned” autistic moms that would say things like “we didn’t let our son hand flip, we just didn’t allow it” or “you know you should come over and see my therapy items and I can show you how to use them properly to help him with not being calm”. He was in therapy with professionals, did she honestly think she could teach me better than a trained occupational therapist who was spending hours with my child and knew him far better than her? I never responded and I got as much as I possibly could out of the therapist so I could do everything available to me at home.
And back to “seasoned” autistic mom, what is so wrong with hand flapping anyway? Who is it bothering?
She never took notice of my strange quirks like holding my hands oddly or touching every pew as I came into the church. What about my constant gum chewing or how when I talk I am moving all around and not looking at her? Maybe she just thought I was possessed. Just kidding! The thing is I knew why Daniel was hand flapping, he was surrounded by 40 some odd kids who were all different ages, dancing and singing, they had the lights dim and had smoke makers and spinning lights, he was overstimulated and trying to get peace in the midst of chaos. (And I did it, trying to help him socialize! Me-clueless) I would think someone with a 16 yr old autistic child would know this, wouldn’t she know that my child was trying to bring peace to his world that had become incredibly chaotic? I guess not and that is what is bringing me to my point. (FYI, Daniel rarely flaps his hands now as a matter of fact I cannot think of the last time he did, he has found other ways to sooth himself like keeping a spinning toy with him. I never told him to stop.)
We have different perspectives.