Daily Archives: February 7, 2010


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.

Be the first to like.

Perspective II?

It took me a while to get to this place but I felt it, even though other people were making me feel as if I should not accept Daniel the way he was, (is)  I still did. I connected with my son, I recognized behavior in him that was just like my mother, myself and at times David. I looked up as many different therapies as possible, David being a chemist was very apprehensive to go into the herbs and supplements and he has proven to be correct. The studies are not conclusive, there is a lot of quackery out there, no one is regulating the ingredients, and no one knows what it does to a developing brain and body. If you are an adult fine but as a child there is really no way of knowing the effects of pumping them up with different types of prescription drugs,supplements, vitamins, enzymes etc… (Not that I am totally against all of those things.)

I have an issue with those who claim that detoxifying their child has worked!

Really, ok that is fine it is your child do what you like. Give them whatever you like to make them behave the way that you want. Believe me I understand, I have been tempted at times to want to give Daniel something to try to help him during a violent outburst, but I didn’t. I couldn’t bring myself to give my child what could potentially be poison, but that is me. Reading all of those things brought me to a point of saying to myself “how is my child communicating to me?” “What is he trying to tell me?” ” How do I understand him instead of trying to get him to understand me?”  The one thing that really hit home was that I was trying to get my child to do all of the things that I myself as a child went against. I remembered that I was forced to behave in ways that felt wrong and it made me angry. I was being told that I was disobedient I didn’t understand why. I had a different way of doing it and it was more proficient. It was a more effective and an easier way.

I knew that I did not want to be anything like Jenny McCarthy, I didn’t feel right about Autism Speaks, and I wasn’t sold on giving my child medications like Ritalin, I took everything I studied and came up with a plan.

Every place I went to had good ideas, I took the good ideas and I used them. I pumped Daniel’s speech therapist and occupational therapist for as much information as possible. I studied them, I would watch them and ask them “why are you doing that?”. “What do I need to do to help him?”  When our insurance was about to end I asked them for any resources they could give me. The occupational therapist loaded me up, she gave me a ton of resources and told me about books that would help me do this at home. They told me about a gluten-free diet and possibly that was an option to check out. I did, I studied, I went to the library and got every book I could find on therapy, food, and autism. I am not saying that other parents have not done this I am just saying that I did not allow anyone else tell me that I could or  couldn’t do it. I believed I could help my son with his needs the way that he needed it, not the way that others did it for their children.

I see both sides of wanting them to just be fixed and wanting them to be accepted.

I have lived in that world my whole life. I wanted to be fixed and I wanted to be accepted. Through Daniel I found both because I realized I didn’t need to be fixed at all I needed to be understood and the first person who needed to understand me was me. Once I began to understand myself I understood Daniel a lot more. I stopped trying to make him do things, I stopped taking things away from him if I wanted his attention, it didn’t work anyway. I sat with him and as I sat I talked to him even when he was unresponsive. I tried playing his games, I sat and stared at things with him, I spun things with him, I ate things with him, I kept telling him  how much I loved him, I kept asking for a kiss but not forcing it, same with hugs and while I did these things Daniel started participating a little more. I used flash cards for words and asked him to show me what he wanted or what he liked. I was getting him and he thought it was great.

I believe we need acceptance and I also believe we need the therapies to help us be able to communicate  and cope in this world better.

Daniel may have learned on his own to talk more or eventually learn to feed himself but I wanted him to be able to do it so he could be empowered, so he could learn to be an individual. I didn’t want him to do it so I wouldn’t have to do it anymore, though I admit it is very nice having him tell what he wants instead of dragging me all over the house or hitting me, but the joy that is on his face when he says “want more yogurt mom” is awesome. He is happy because he knows his words have power to get things accomplished. He is still learning language but it comes alive for him in music and that is how I have taught him a lot of things to say. I sing them, if he would pull me to the refrigerator and point to the yogurt I would sing, “Daniel wants some yogurt, Daniel wants some yogurt, Daniel’s gonna eat yogurt, Daniel love’s his yogurt.” I do that with everything, I have always done it for myself so why not for my kids.

I have always made up songs for myself for specific tasks, especially ones I do not like such as the dishes.

“I am doing the dishes, yea I am almost done, oh, I can’t stand dishes but I am having so much fun.” Now picture a person dancing and using the dishes as a dance partner and there you have me my whole teenage life. Even now on occasion but David is such an awesome husband that he does the dishes most of the time for me. I will do everything else if he just does the dishes! :-) I have observed Daniel his whole life and I now understand certain things about him like he likes green, he gets agitated on some days if he wears red, he thinks noises like clanging metal is funny, he can make anything spin, ceiling fans are the best thing on earth, and something I discovered the other day is that he doesn’t have a real perception of himself.

I found a video of an autistic child doing some similar things that Daniel has done in the past, but the main thing that he still does is a hum like singing thing that is a mixture of words that I cannot understand.

I showed him the video and asked him to watch it, I said “look Daniel he is doing some of the things you have done, look he sounds like you”. He stopped and stared at the boy and then said “I no watch this mom, I no watch this”. I asked him why and he looked at me oddly then I asked “is he like you?” and Daniel said “I not like that mom, I not like that.” I sat there thinking why would he say that because I know he is like that sometimes and there could have been several reasons, one he doesn’t understand his behavior, he doesn’t grasp the mirroring thing so of course he would not see himself like that, even though I have home videos of him doing the same thing, two he was telling me at that very moment he was not like that because he wasn’t doing anything remotely close to that behavior at the time, or three he doesn’t think he ever does those things and he believes he is just like Ariel and Joshua. I am not too sure about three and I do believe it could be a mixture of one and two. Honestly I do not know I just find it interesting.

As I watched the parents though I was sad because they kept using words like he is not there, we lost him.

There was one scene where the child was looking out the window and they wouldn’t stop calling his name, they just kept on saying it over and over in a high pitch annoying way. I wanted to tell them to be quiet, the child just continued to look outside, inside I just felt like he was studying something out there and whatever he was studying was bringing him peace in the midst of that chaos. I am amazed when the parents act as if they don’t know why their child is behaving this way but their home is full of new things like lights, cameras, new people, the routine has changed because they are filming and they question why the child is acting worse than usual. I saw one scene where the mother was saying he doesn’t talk, he won’t say anything to me, he doesn’t communicate but the camera got a shot of the boy and he was looking at his mother and he was reaching out to her and grunting, he was communicating and he looked as if he was terribly misunderstood.

There are many more videos and documentaries that I have watched and I see the same thing, the child is communicating but not in a way for the parent to understand.

I think maybe one of the answers of breaking the communication gap is to stop trying to get these children to communicate like everyone else. I know others agree with me and there are those who say it but they don’t really mean it. I don’t have any answers but a lot of the people in charge of running this Autism show ( I call it a show because that is what many groups have made it into.)do not have the answers either and I feel that as a parent I am responsible for discovering my child and helping him to find his way of communication, not my perception or anyone else’s of  how he should communicate. I am here to help him discover his strengths, work on those weaknesses such as motor skills for instance. I feel we do need therapy and a specific diet, they have proven to be beneficial for Daniel and myself. The therapies have taught me how to help myself as well. I don’t want myself or Daniel to be fixed I want us to find our way in a world that tries to make us conform to their status quo. I want Daniel to find his voice and learn how to share it with the world even if they reject it.

I will use wisdom and discernment to choose what I feel is best for my child and my personal view is that drugs or supplements are not the answer for Daniel, at least not now.

I haven’t made these choices based on emotion, random readings that have influenced me, or other people, I have taken this on as an experiment, we take all of the things into consideration, rule out the ineffective or possibly harmful things and go with Occam’s razor, what is the simplest answer right now, spending time with Daniel, finding his likes dislikes which are experiments in themselves, change diet and see what happens. Those are the ones we started with and I have found they opened us up to a world of very interesting family fun and new ways to communicate. He is doing well, he has decided to talk more, he is trying new foods, he is writing on days he feels like it, he knows how to spell, he knows shapes, colors and loves to count. All of these things have happened because I got to know my son, that is my journey and it has brought much understanding to my own world.

There is no easy fix to autism it is a great way to learn love, new ways to laugh, see the world in unique ways and it is always interesting.

I feel this dilemma inside, it is regarding how there seems to be two camps those who must have the cure and those who want to be accepted. I fall in between because I really do not know fully what it is like to have a low functioning autistic child for a long period of time, Daniel was low functioning in some areas and at the age of 3 yrs he was at 10 months, like speech and eating. I do know the pain of wanting to connect with your child, the feeling that he will be like this for his whole life, dreams may be gone, but I was ready for that. When I think of all of my children I have no intention of them leaving, though I want to prepare them to be on their own I have no desire for them to ever leave. If they want to stay home,  they can I have always felt that way. I don’t plan on parenting until they are 18 yrs. old and being finished. Understand me here, they are going to be fully equipped to be on their own and they are going to learn about the real world at home but they are welcome to stay, we have plans for all of that but I am not going into it. Anyway that is my thought process so when I hear parents say “is my autistic child ever going to leave the home?” I am confused. Why would you ask that? When I hear a mother say “I can’t go shopping anymore, I can’t just grab my purse and run to T.J. Maxx because of my autistic child.” I get confused.

My children are my life, they are not my identity but they are what I signed up for.

I take parenting very serious and I feel it is my responsiblity to think of their needs, sometimes to a fault but most times I keep a balance. I understand not being able to go shopping most times I cannot take all three children with me and at times there is no way I can take Daniel out of the house but to me it’s just not that important, Daniel is. I take care of myself but things like that are not a priority so when I hear it, it sounds very selfish. David says I need to consider where they are coming from but I find it very difficult. I have a supportive husband, I have a supportive mom and support from some friends who see raising children as seriously as I do so I guess I really shouldn’t think about how other people are or try to figure out what they mean. All I know is for me when we chose to have children, we chose a life long commitment that we knew would take precedence over other things. I don’t know if this is all coming out the way I mean it to, I hope it is. My perspective is different from a lot of other people, even when I feel like we are on the same page I discover we are not so I find myself alone in my thinking. I am not black and white when it comes to the autism therapies or findings but that is how I am different, others seem to be very clear and have all the answers despite the lack of data.

I will just continue to work with Daniel and do things that I see have proven to be beneficial and if new things arise I will research, see what I find and apply things that will be good for Daniel to find his voice and express himself the way he feels the most comfortable.

Be the first to like.