Behind starburst eyes

#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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Fantasy Hair Colors

I understood that upon becoming a mother that I would most likely do things I’d never imagined prior to motherhood for the sake of my children, having pink hair wasn’t one I expected. I am now used to the looks I receive upon first seeing me with my variety of bright hair colors, ones that are commonly called “fantasy colors” because there is no way that they could ever be natural. My favorite is bright pink, almost a fuchsia really. For years I dyed my hair various shades of Auburn and I loved it the vibrancy of them. (Naturally I’m simply a dark chestnut brown)

When my eldest son was about 3 years old I started taking him to our local library’s pre-school story time program. It was once a week for 45minutes and he loved it. The part he did not love was “pick-up time”, which was when the grown-ups who were to wander the library during it but to stay away from the actual area the kids were in came back to the children’s area for their child. He didn’t like that time because he had trouble with facial recognition skills and would get anxious trying to “find” me in the throng of moms standing in a row waiting for our kids. I tried to figure out what to do to help him as he couldn’t just quickly scan the area with his eyes and spot me. It would take him time, enough time that he’d get upset thinking that I wasn’t there. I tried pointing out what I was wearing before we’d go in so he could look for a certain color of shirt or whatnot, but that did not work. I tried making sure I was at the beginning of the line, but then he’d start looking at the end first those days and vice versa, I tried calling for him from the moment he started looking, but still he wasn’t sure where my voice was coming from as he’d already be nervous…And that is how my fantasy hair colors started. I dyed my hair a brilliant fuchsia and of course I was the only adult with such hair color at our little library and so it was very easy for him to glance for the hair color and then take the few seconds he needed to verify my face in his mind. The nervousness on his part stopped, and overall it was much happier and better for him as he could be excited about the library program (which he LOVED) and still feel safe and secure that he could find me when he wanted too.

His facial recognition has gotten much better over the years, to the point that I don’t need to dye my hair anymore for his sake. My younger son also associates the fantasy hair colors with me though, to the point that he automatically assumes when seeing them on someone else that they are me, and will try to follow them if I’m not with him calling out “momma”. Once he’s able to recognize my face immediately, and does not need the visual cue of a unique hair color will I stop dying my hair? No, probably not. I started doing it to help my eldest, and eventually my youngest as well, but over the years ironically enough I too have started to associate those hair colors with me.

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Dust bunnies versus sticky fingers

“Sometimes I can hear my bones straining under the weight of all the lives I’m not living.” by Jonathan Safran Foer

The above quote was found unexpectedly while I was looking at a sweet story about a dad that was going the extra mile to ensure his son had a wonderful Halloween. There right beside the heartwarming story was that quote, separate from the story.

I read it, and I felt like I had been punched in my solar plexus, it resonated SO deeply within me. I am often bothered by all that I haven’t accomplished, by all that I have not yet done. I try every day, but there’s never enough time, and there’s always something that needs doing that I hadn’t expected. I’m in my 30’s and I feel like all of those 3 decades have passed in a blur. Each year fluttering past in wisps of color and opportunity too fleeting to catch or hold on to. I try to make every day count, but I find that the mundane things often get in the way, like cleaning. It does not seem to matter what I try it always takes me ages to get the house cleaned every single day. No matter how spotless it is one day the next it’s a mess again and again I’m forced to choose between cleaning or adventure. I know I have to be the responsible adult and clean, but I want to just experience each short moment I have with my kids, I want to play with abandon with them, and laugh with joy at their discoveries, I want to go on “treasure hunts” and nature walks, and trips to the library and read under a tree from books about anything and everything to them. I want to be able to be present in the moment with them and not always “in a minute” “after I’m done the dishes we’ll ______” etc. A great deal of the time I do say “piss on it” to the housework and the time that gives me to just experience little hands fluttering across my triceps as I walk for 2 hours with N in the hiker as I walk to get him a donut and back home is priceless. Just sitting here, I can still feel the warm sun on my face, his icing covered fingers lightly touching my triceps as he yells his excitement at an orange jeep that drives past us. I treasure those moments more than I can say, they ARE what make me “me” each of those memories.

So among other things that I have to do cleaning is for sure one of the most time-consuming, so any tips dear readers? Please keep in mind I have a house with 3 adults (my mother is NOT able to help due to her health, and I’m just happy to have her company) 3-5 children, 2 of which are on the spectrum, of those two one that needs constant attention and assistance, and the other one is homeschooled by me and therefore needs time every day for that. As well as one that is not yet walking, but does love crawling everywhere she can.

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Favorite Children’s Books for Children with ASD

help me be good seriesI LOVE author Joy Berry’s series “Help me be good”. It’s a fairly large series, there are 29 books in all. It originally was published in 1988 and I read every single one of them as a child myself. Fast forward an undisclosed amount of years to when my eldest son was 3 years old and we were at our local library. Every time we’d go I’d check out the books they had for sale as each was only $0.25. One cold morning I spied the entire collection all in pristine condition on their sale shelf. Excited doesn’t even begin to describe my reaction. I scooped up every single one of them! Why do I love this series so much? Because each book deals with a common behavior, discusses how others feel when a child is choosing that behavior, what a child choosing those behaviors might be feeling, and other positive ways of dealing with those emotions, or situations, all in easy to read, direct language that doesn’t use metaphors or confusing sub-text that a child on the spectrum might not pick up on. From the day we brought them home I read one every day to my son for the better part of a 2 years. Each day he would pick a book for me to read and I would pick one of Joy Berry’s books to read to him. He loved them. They helped him to understand social concepts easily and without feeling bad at not getting them without the books as it was never “about him” it was always about “another child” one from her books.

Interupting Joy Berry BookThe book about Interrupting says “You are interrupting when you talk when other people are talking… Try not to interrupt people who are talking to you. Allow them to finish talking before you speak. Say “excuse me” if you must interrupt them. When someone interrupts you, you might feel angry or frustrated. You might think that person is not fun to be with.”

At the end of each book it always says “It is important to treat people the way you want to be treated”

See, easy, clear explanations of what the behavior is, how people feel, and how to avoid doing it with simple blunt instructions on what is socially acceptable and what is not. I’ve already started to read them to my younger son, and while he’s not super keen on them yet (he won’t be 3 until Oct) with him already being diagnosed with ASD I think it just makes sense to start early.

After all a large part (not all but a big part) of ASD is a deficiency in social development and understanding. If my child had massive issues with math I’d do my best to focus on helping them improve their math skills to the best of THEIR abilities. No I wouldn’t expect them to get a PhD in mathematics but I’d help them to learn as much as they could to help them thrive to the best of their abilities. Teaching social skills from an early age in a more intensive or focused manner just makes sense to me for my boys with ASD. Their brains are hardwired differently, but different doesn’t mean they can’t learn, it just means they might need different ways of being taught and more time to learn the same things as a child without ASD.

For those that are interested, if your local library doesn’t have this fantastic series it is available on places like Amazon.com or Chapters.ca
Chapters also has her other series: “Let’s talk about” and “A fun and easy way” both of which I’ll be getting for the eldest to read and eventually reading with the youngest. 😀

If you’ve read her books, let me know what you thought. Were they a helpful book series for children with ASD? Or even helpful for children in general? (I personally read many of them with the kids I looked after in my daycare years ago that weren’t on the spectrum because I thought they were great for all children in general but especially ones that have social skill deficiencies.)

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The mystery of crayons

Another box of crayons has been unwrapped. N still loves very much to unwrap each one. His slow methodical precision is fascinating to watch. No piece of paper is left, no matter how small. I wish he could type or sign or say what he appears to be looking for when he unwraps each crayon. It’s certainly not an absent-minded action on his part, for each movement of his little fingers is deliberate and sure. His eyes never look anywhere but at the crayon as he unveils it in its entirety. Is he making sure that each part of it is the exact same shade? Does he think something else might be hidden underneath the paper? Or does the feel of the paper it’s wrapped in scratch his hand when he tries to color with it? Is he removing an additional sensory stimulation he does not find appealing? One day when he can answer me, I’ll ask him and listen with bated breath as I’m given more than just a glimpse into the thoughts and inner workings of his precious mind. Until then I will marvel at his concentration, and at the deliberate movements of tiny fingers busy at work. I will marvel at how his eyelashes flutter as he stares so intently upon the unveiled crayon and carefully places it with the others, only to pick up another paper covered one and start again. He won’t be done the task he’s set himself upon until the box is finished, and I won’t ever be done watching him in awe as I get glimpses into his breath-taking mind.

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Organizing Foods

MH900430659 N gets very excited by how foods are presented in bakeries, delicatessens, and the like.   He’s happy to try many different foods from these places, but when presented with these same foods at home he is unwilling to eat them. I was speaking with a friend who asked me an absolutely brilliant question about it. She asked me if I thought it was because of how visual he is and how neat and organized the foods are in those types of places that he preferred them. She asked me if I’d put his food into lines on his plate before and if so what did he do. To be honest I hadn’t done it before. I’ve made pictures with his food (happy faces or cutting roasted potatoes in the shape of cars) but I hadn’t actually taken his foods and made lines on his plate with them. With how much he loves organization, and lines in general I am actually quite hopeful that this just might work to help him eat better/more. Considering he’s currently on supplementations of various vitamins as well as a meal replacement drink due to his lack of current food intake I’m totally excited at trying something that just might make a positive difference in the amount of healthy foods I am able to get him to eat and enjoy! Wish me luck dear readers, this momma’s about to get the mandolin out to make some super organized veggie and fruit lines 😀

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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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Happy Cake

Yesterday N said one of his clear words while we were driving “cake” so I asked him if he wanted cake. He smiled and told me yes, so I told him I’d make cake at home for him. So once we got home he goes into the cutlery drawer, finds the package of candles I keep there for birthday cakes. He opens it up, and tries to hand me some while saying “Happy cake”

It was adorable to me in general that he was saying he wanted to have another birthday cake, but also it showed so clearly that not only does he notice what is going on around him, he understands and remembers. It’s moments like that not only thrill me, but they also humble me. They are a potent reminder to me that our children are watching what we’re doing, always. Our actions and words have meaning and importance because they are shaping our children’s experiences, memories and ultimately who they will become.

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Buying Friendship

An article I wrote about accidently buying friendships when you’re on the Autism Spectrum:

“They say money can’t buy you happiness, but can it buy you friends? While most people know the obvious answer to that is a firm “No” Sometimes people on the spectrum have more trouble with the concept of buying friendship doesn’t work.”

You can find the rest of the article at Parents Space:
http://www.parents-space.com/health-fitness/the-autism-spectrum/buying-friendships/

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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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