Behind starburst eyes

Dear Mental Health Professionals:

dsvm cover

I am aware that the DSVM (all editions since the 3rd) include Autism as a mental illness/disorder. However, just because they are included does not make the mental health field correct in their assessment of Autism as a disorder. It is included because Western society has a serious lack of acceptance of anything different. All things different should be treated and minimized to the greatest degree possible, is often the misguided thinking with Autism and many other neurodiversities.

The Ontario government has released a statement that they are pledging $333 million dollars towards treatment, but that the maximum age for treatments of IBI will decrease to 5 years old. This is said to be because the greatest chance for changing these children is until they are 5 years old. After that, it becomes harder to help change their behaviors to mirror neurotypical behaviors.

Autism is looked upon as something to correct, or at least to help intervene as much as possible and push towards encouraging the person to act as neurotypical as possible. I’d like to ask you why this is? I’d like to ask you why someone has to behave the way you do for you to see value within them? I’d like to ask you why biodiversity in the world is a plus, but neurodiveristy within humankind is not? I’d like to ask you why someone has to live in a predetermined manner for it to be the right way to live? I’d like to ask  you what is so bad about allowing someone else to live their version of a happy life, even, especially if it’s not the same definition of happy as yours? I’d like to ask you what will it take for you to see that my sons do not have a disorder, they have a different neurological structure. What are the words you need to hear to understand that their value is not to be based upon how well they can become chameleons in society, but that their value is based upon the person they truly are when they stop trying to fit into your rigid, substandard predetermined cookie cutter shape of humanity…The Autistic Person they always have been and always will be does not need to be fixed, they just need to be loved, respected and appreciated for who they are, just like every other living creature on this biologically diverse planet.

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#HAWMC Day 7: Why I write about Autism

#HAWMC Day 7: Why I write about Autism. Tell us why you write. How long have you been writing? What impact has it made on your life? Write for 15-20 minutes without stopping.

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I write because if more people understand Autism than there will be less times that parents are ostracised and called out for their supposed flaws as parents. (Such as this)

I want to help show the parents of children that have just been diagnosed the beauty and wonder of parenting that still awaits them! I really am “Happy in Holland” and I don’t wish for different children. Instead I get my butt researching and thinking and planning on how to best help them to have a life they define as happy.  I’m going to repeat that, because I think that right there is a huge issue. I want them to have a life they define as happy. Nowhere do I say I want them to create the life I deem as happy, because it’s not about me, it’s about them. Just as my life isn’t about what my parents deem as a happy life, it’s about what my spirit says is personally fulfilling, and my children deserve the same right to choose their own happiness, as does every other person on this planet!

I write to help other parents see that they don’t need to feel helpless in their childrearing of Autistic kids; they can research and plan and create methods and ways to enrich their children’s lives and help them to access their fullest potential all without demeaning, or shaming them or their natural neuro-pathways. Such as ensuring their cortisol levels are decreased through regular physical activities so they have less overloading and meltdowns. Or making behavioural therapy plans while their waiting for ABA, or creating a sensory room, or finding ways such as massage or the creation of “nests” to make going to sleep easier for them.

I write about my sons’ health, about their “condition” because I want the world to understand the path they walk in this life. I want to share the beauty and wonder they bring to me, and to so many people around them. I want for others to see that yeah they’re different, but it’s beautiful and special and amazing and so incredible. I write about Autism because too many negative stereotypes exist and I can’t change them without shining a light on what Autism really is. What Autism really means and why neurodiversity desperately needs to be accepted by our society.

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Blurry Pictures and Clear Signs

CAM01152  I read another’s blog post today. It can be found here. What I got from it was that it was about his fears for his Autistic daughter’s future after watching two girls from the same grade not even notice her during a morning walk. As well as his hopes for his daughter’s future after attending a dinner filled with Autistic young adults.

It struck a cord with me because there are moments when I worry for my boys. I worry sometimes as I watch other children surpass them socially, I worry as I see news reports of an 11 year old Autistic girl who didn’t respond being tasered by police when found walking nude along a free-way. (Full story found here) I worry when I think of the only time Mr. C was in school (preschool) and his teacher told him he wasn’t good, that he was lacking and so many other things that tore at his fragile self-esteem which lead me to taking him out of there and choosing homeschooling instead because I didn’t want to risk him having more teachers like that. I worry when I start to think of the world as it is right now in regards to acceptance and the lip service that is often given, but real efforts not.

I was still thinking of it when I was getting Mr. N out of the bath (juice, play-doh, and stickers make one huge mess lol) as I closed the bathroom door behind us, for the first time he noticed something I’d forgotten was there; a blue index card I’d written that says “You are perfect exactly as you are” Originally I’d written it and put it on the outside of the bathroom door for the 3 children quickly getting older and noticing the media’s messages about superficial images. But he pointed at it and asked what it said. I read it to him and he smiled and said “Awe” and I asked him who it was about, he told me me it was about him, that it was his… He was right. He IS perfect exactly as he is, all of my children are, and instead of being worried about their future I’m more determined than  ever to ensure I help to change the world’s perception of Autism so that people will be more open to truly seeing them. To talk and write and do whatever it takes to help create the world I want for them, one where they and others are valued as they are, one where diversity is embraced, one where others see the value they can bring to a friendship and try to cultivate them, one that sees my boys and all people as perfect exactly as they are.

 

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Advocating for Another Award Nomination!

I am incredibly honored to have been nominated for the WEGO Health Award “Advocating for Another” If you agree with this nomination, please feel free to click on the button saying so 🙂

 

Advocating for Another Award Nomination

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It’s a bird, it’s a plane, it’s a kid on a leash!

imagesCA0TBJHUWell tonight I finished modifying N’s little blue backpack into a harness style backpack complete with a “tether strap” as it’s called when one is selling it apparently. (I looked online but figured why pay that much money for one when I’ve got everything here to convert a regular toddler sized backpack instead) In reality it’s a leash and it’s attached to my child via the backpack. I have fought doing this for a while, and each time we went out I would faithfully ensure I had the stroller and he was buckled in. Once in a while I’d walk holding his hand, but with his aversion to touch so often holding hands is NOT something he’s in to doing, and letting him just roam and hoping I can catch him when he darts out onto the street in less time than it takes for a car to hit him is NOT something I’m cool with. In fact it terrifies me, and while I KNOW I’ll get the inevitable backlash for “treating my child like an animal” (trust me I had this reaction with C, and I hated it. I hated that no one could see I JUST wanted to keep him safe.) And I know I’m going to upset people with doing it with N.

Here’s the thing though, I can’t NOT do it. Well I’m sure I can in fact, but my heart is pounding from the moment we walk down our front steps. I’m sweaty and nervous as I carefully grip his wrist/forearm (he won’t hold hands at all) I’m watching every direction, frantically looking all around us and trying to watch him at the same time. All the while I’m still holding onto him for dear life. I try to get to our destination as quickly as I possibly can get him to go, and frequently ask him if he wants me to carry him. Why because he doesn’t understand danger, and that makes me terrified. He runs towards moving cars because he’s so fascinated with cars in general. And trying to just say “No” or “Stop” does NOT work with him. especially since he’s often overloaded auditory wise and covers his ears, but doesn’t ever stop moving.

Now, tonight we went on a little walk with his new modified backpack. I held his forearm while he was walking down the stairs and then I let him just walk. He got to choose where we went because I was just enjoying watching him finally have the opportunity to discover his neighbourhood at his own pace. We stood at one point and watched a cricket and I told him about how the cricket makes music. He loves his backpack, and insisted we put cheese in it for our walk 🙂 He’s not upset by it, even when he tried to dart towards the street and it stopped him (he didn’t fall or anything, he just couldn’t go any further than a few feet from me) he just looked back at me and then pointed at the cars speeding past and smiled saying “brooms!” which is of course his word for cars. So yes I loved the peacefulness with which we were able to just “be” together, in each other’s space, experiencing an evening walk together, marveling at all the things that I would have forced him to miss in my haste to get him somewhere safe prior to his new backpack.

Alright dear readers, I’ve taken a deep breath, let me have it.

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Autism is NOT a death sentence

Just over a month ago C and I made cookies for his home school group at the YMCA to help promote Autism Acceptance. With how positive of a reaction we received from them I asked one of the people who helps to coordinate the Orientation for Parents of Children Recently Diagnosed with Autism at Grandview Children’s Center if they would be interested in having some at their next orientation. She spoke with the her colleagues and they said yes. So today I went and got more business cards for the packages I’ll be dropping off Saturday morning. I’m happy that they said yes to them as I feel they do have a positive message to them. So often I hear of parents being absolutely desolate about their child’s diagnosis, and I think our perception as a society needs to change about that.

Last year on C’s 8th birthday his father and I were not with him. The night before, I called everyone that was supposed to come and told them that we had to post-pone his birthday party. Why? He’d done NOTHING wrong. We had to cancel his party and leave him with his Nana because we had a funeral to attend. A close friend’s 23 month old daughter had passed away. Now that was something to be absolutely desolate about. Her’s is a place that will forever be empty at their table, the memories of that beautiful precious little girl are what her parents get to hold instead of her. That is a truly devastating loss. One that those two parents must bear.

But to perceive a diagnosis of Autism as the same level of tragedy as the loss those parents deal with every single day is in my mind an insult to both the little girl who will never have a second birthday, as well as to the child diagnosed! It is NOT a tragedy that one’s child has been diagnosed with Autism, it is not something they will die from. Will there be some areas of their lives that are more challenging because of how their neuro-pathways work? Yes. But that’s what parents are for, to help their children to thrive to the best of the child’s abilities. Now I understand that some people would argue that a child classified as “Classic Autism” or as “Low-Functioning” does not have the same level of abilities to function as a child that is classified as “High-Functioning” I’m not arguing levels of abilities, but I am arguing that Autism is not a death sentence and should not be approached as one.  Yes there will be times that are hard for both parent and child. There will be times when as a parent you might not be sure how best to help your child. There will be times when they are judged negatively by others, when your parenting choices will be called into question by others, but all of those statements are true for parenting of any child!!!

To mourn the loss of the child you thought you had, the one that won’t _______ because they have Autism is unfair to your child. They are still the same child as they were prior to a diagnosis. They still have feelings, thoughts, dreams, wishes, fears, hopes just like any other child. Will they need different kinds of help or parenting than you originally thought you’d have to provide when you learnt you were going to become a parent, perhaps yes. But our job as parents is NOT to dictate what they need, but to observe them and their ways of communication to understand what each unique child needs us to provide them with and help them with.

These children can and do go on to lead lives that are happy and fulfilling for them, perhaps it’s not your definition of happiness and that’s okay because it’s not your life, it’s theirs. As long as your child is alive, and happy what on earth do you have to mourn???

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Workshop!

Informing the VillageInforming the Village:
A how to workshop on educating others about your child’s diagnosis

Offered By: Lindsey Asperger’s Autism Support
Presented By: Dawn-Marie Potter

They say it takes a village to raise a child, but how do you make sure the whole village that is involved in your child’s life is on the same page as you about how best to do that? How do you make sure they understand the vital things you know about your child so they too can have fulfilling interactions with them in ways that truly benefit your child? The answer, you teach them about your child. You show them what it means to be “John” or “Jane” Show them what helps your child, what hinders their growth, and how to help them to thrive no matter how your child is feeling at the time. Help them to understand who your child truly is, which is more than just a label, but a whole complete being that is capable of amazing things should they just be given the chance to shine.

You want to make sure every adult that will be partaking in your child’s life understands them. During the workshop we will explore multiple ways of informing and educating others about your child, their diagnosis and what exactly that means for them specifically. From brochure making, to one-on-one confernces, to cookie making (yes cookie making, there will be samples of that one for everyone attending to see how fun and yummy that method is 😉 there are so many different ways to open up and inform others. Come discover some of them with us!   

Workshop Details:
Date: May 21st 2013 Time: 7pm
Location: Upstairs meeting room of Loblaw’s located at 400 Kent Street, Lindsey

For more information on how to attend this exciting workshop please contact the LAAS:
Email: Donna: donna.thomson@sympatico.ca

or myself at dawnmusepotter@gmail.com

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“Our Story” Brochure

This is the tri-fold brochure that I created about my boys for various organizations to use at their events to promote Autism Awareness. 😀

Corbin and Nolans Story Tri fold brochure-page-001

 

Corbin and Nolans Story Tri fold brochure-page-002

Organizations that currently use this brochure:

Rockin’ & Ridin’ for Autism

Autism Canada

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Don’t accept Autism…Embrace it!

A few years ago when I was in the process of getting C officially diagnosed I wrote the note below. I felt it was worth sharing now because I want people to understand that this attitude of “Don’t just accept but embrace Autism” is far from new for me personally and I truly hope this might inspire some of the parents that read this blog to contemplate their own true feelings about having an autistic child and perhaps looking at this child they were blessed with in a different light:

“Even though I see more than enough to believe that a diagnosis of high functioning autism is accurate, I hesitate to put it in writing because you don’t want to give him a label that he’ll be stuck with forever you know”

To this statement I rail “Why NOT?!?! Your so afraid to label him as you put it, as if by openly stating yes his brain works in a way that is different from the expected version of normal that this will hinder him. Well guess what, it won’t! Just because you don’t want it to be so his brain DOES work in a different way from many other people’s. But it’s not a negative thing to admit it, he sees the world in the most amazing way, free of social constraints that so many people just accept because “it’s just how it’s done” He questions everything, he’s NOT afraid to show people he loves how he feels, he doesn’t understand why he has to be away from people he loves, he gets so excited about everything that when you watch him, you can’t help but to get excited over little things too. A part of him will never lose that “innocence” of childhood, because he will always love unconditionally, he will always try his best to make those he cares about feel special, he will always believe that anything is possible if you try hard enough and I don’t ever wish for him to change!

He’s perfect just the way he is, and I see the amazing beauty of his true authentic self every time he finds out we’re going to have ice cream or go for a walk to the park or go swimming, or that a friend is coming over or any other million and one things that make him smile and jump up and down with elation every single day.

He loves more purely than anyone I know, and by giving him a label he’s not being hindered, he’s not being constrained or minimized, he’s being set free to explore the world on his own terms, he’ll be given the opportunity to meet with other fantastic people who see the world from a more open, literal perspective like he does. He’ll be given the opportunity to say openly “I don’t understand what you mean by that” and be able to tell those that matter to him that he sees the world differently.

One day perhaps enough people with this “terrible label” will have interacted with supposedly “normal” people and have shown them, just because it’s always been done a certain way doesn’t mean that it should continue that way.

He’s currently turning 7 years old in 2 months and last night he told me he was sad because all the wonderful times we’ve shared already will never come again. At not even 7 years old he understands the fragility of our existence better than many “normal” adults, when someone he cares about comes over he lights up and runs to hug them, that is a beautiful thing that so many of us are too scared to do: Openly without thought of rejection show love and affection, if only we all could be MORE like him!

So yes, please label him, and while you’re at it, understand that I see just how incredible he is, I am frequently brought to my knees in tears at the overwhelming sense of awe I feel just watching him, completely entranced by the light of his soul shining bright, humbled beyond measure that someone somewhere thought I should be lucky enough to be blessed with him as my son.

Label or not, he’s absolutely perfect to me, a wonderful example of how to live life honestly and openly without needless pretenses that only hurt or distance those around us.

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It’s not freedom if they can’t chose for themselves

I’ve read many things online lately that speak of the acceptance debate about Autism right now. Numerous of those articles say things like “It’s not true acceptance of the person if you try to teach them social skills, because that’s just trying to change them, not accept them the way they are” I disagree with that idea.

 

For me personally, I feel that teaching all the social skills as they are now called to my Autistic sons is akin to teaching spanish to my children who were born speaking english. Why would a parent do that? What could be gained from a child learning a second language? You guessed it, they could communicate effectively to gain what they needed from a vast array of situations with more people than if they only spoke one language. Does teaching them spanish imply that their first language and native tongue will always be less than the second one they were taught? NO it doesn’t. Does teaching them spanish mean that I will not listen to them or converse with them if they speak in english instead? NO it doesn’t. It means that should they decide at any given time that speaking in spanish would be more effective in a specific situation for them to obtain what they want or need that they can. Not that they have too, just that they have the option to express themselves in both languages, and that they can choose either option at their own discretion.

 

I think the difference between what I believe and the persons stating it’s not acceptance if you teach “NT” social skills to your autistic child is that I’m NOT saying they HAVE to use what I’ve taught them, I also plan on teaching them how to bake a cake from scratch, doesn’t mean once they’ve learnt how to do so that from morning till night they have to bake cakes non-stop. It just means if they want too they can, and I’m ALL about them having the freedom to choose, but it’s not freedom to choose if they aren’t allowed to explore all their options and then choose which one/s are best for them specifically. I also won’t teach them that they are wrong or less for their natural state or “native tongue” to continue with my original metaphor, just a simple statement of fact that it might be useful to also know this language in addition to your own.

When I teach a “social skill” I explain in detail what the general perception is, what my perception is, and encourage their own thoughts and feelings to be discussed about it. Such as when my eldest wanted to wear his transformer’s costume to the mall in May. I asked why first and he said because it’s fun to pretend he’s Optimus Prime and he loves how soft the costume is his Aunt and Uncle got him. I told him I agreed it is fun to pretend, and it is a very soft costume. I also told him it was perfectly fine with me. I did explain that some people might think it was strange that he was wearing a costume when it wasn’t close to Halloween and they might say something unkind or mean to him because of it. But that I knew how much fun it was to dress up and that as long as he understood that might happen I was proud to hold his hand in any mall while he wore any outfit he could find. He decided he’d wear it, and when there was a rude comment about it he replied “I’m wearing it so only my thoughts on my costume matter” and off we continued in the mall.

SO I did not force “NT” social skills, nor suggest that I felt he was wrong or bad for his choice. I reinforced my unconditional love and acceptance for him exactly as he is, but also told him the truth of how it might be perceived to allow him the choice of “did other’s perceptions of him matter to him in these circumstances” clearly that moment showed a definitive no, but at other times it might be a yes and that’s okay. Because it’s still allowing his feelings, thoughts and wants to ultimately dictate his actions, which is exactly as I think it should be.

But one of the things that I’ve read and seen in my own sons time and time again is that the inferred portion of any interaction is not always understood or picked up on. So it’s my job as their first teacher to teach them all of the hidden things they don’t automatically pick up on and then let them decide how they wish to proceed. That to me is the true definition of parenting, to help them understand everything and decide what is best for them personally from there.

I parent this way because I started with one goal in mind for all of my parenting choices “to ensure my children’s happiness” Then I simply work backwards from that goal by asking “What will make them happy?” or “Will ______ make them happy?” Sometimes I know, and sometimes I have to either ask them or watch and see. I then base my choices from that, because it’s not about what makes me happy, it’s about them. They are first, as they should be.

For example my youngest son has no interest in other children his own age, while I know that some people feel I should “encourage” read force him to interact with other children to make him more social and therefore more socially acceptable I don’t. I bring him to places with our family because he is an integral part of our family, but if his bliss is to spin the wheels of his toy cars and not play with other children his age that are around him I’m fine with that. Why, because he’s happy. And all I want is his happiness. I truly believe that both of their happiness, heck anyone’s is based on being able to have their wants and needs met on a consistent basis. So yes I’ll continue to speak in english with them, while I also teach them spanish so they can decide which is right for them to be heard clearly and their needs and wants to be met in the manners they wish for them to be.

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