Behind starburst eyes

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.


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.


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 😀


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???


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:

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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:

or myself at


“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


Discipline will fix it

I was told many times when my eldest son was young that there was nothing wrong with him. I was told that instead the issue was actually my parenting. I remember one time in fact that I was at a friend’s house and he was having trouble getting to sleep. He’d gotten scared and it ended up taking me just over two hours of laying with him, cuddling him and singing to him to get him to calm down and fall asleep. Upon re-joining the rest of the adults around the campfire that had been built, mentally exhausted, aching inside for my sweet boy who just couldn’t deal even when he WANTED to, I was verbally attacked. Honestly there is no other way to describe what happened.

I was standing there not speaking to anyone specifically when this person started in on me. Screaming at me that I needed to stop baby-ing him, that he was never going to learn how to deal with the real world because of how I coddled him. I was told that if I would stop  him, treat him the way the real world would treat him he’d be “better” This person decided that how I raised my son was totally unacceptable. One of the things they said was that they were simply being honest by telling me what everyone there was saying behind my back. That part still strikes me hard 5 years later. Why, because these people were supposed to be friends, they had seen myself and my son for a long time and yet still there I was being screamed at about my abject failure in parenting my son. Not only that, but instead of concerns being voiced in a kind manner, there I was being centred out to be told both how terrible I was as a mother and that this was thought by all those that were there and they had apparently been speaking about this behind my back.

Finally, with tears in my eyes and my heart breaking at the random viciousness of this person’s words I stated, how about we talk about him like he’s just like “_____” which was the child of another person that was there. I stated that he was just like them. After all there was another child there that had it as well. It was then that the light dawned on my attackers face. Quickly I was encircled in their arms as they tried to apologize, telling me they had no idea he had Autism as well. It didn’t make it better. It didn’t make it hurt less that they were now saying they were sorry. It didn’t make the embarrassment at being centered out and told in no uncertain terms that I was a terrible mother easier to deal with. I stood there still and stiff wondering in my head when they would finally release me so that I could walk away from them physically as well as mentally to re-coup.

I had not told any of the people there before that moment because I didn’t feel like I needed too at the time. I naively thought that because he was my son and a beautiful person on the inside that it was enough. That he could just be himself and be loved and accepted as the bright, shining, sweet, individual he was.

I still see this person from time to time. They still swear that they were only being helpful by voicing what everyone else was thinking. That they think I’m a good mom now that they understand my eldest has Autism. But in thinking about the past, I can honestly say the memory of that night still hurts. I wish for a greater understanding of Autism in general so that other parents will not be subject to uninformed tirades such as the one from that night.

I’d been subject to other tirades from other people both before and after that incident, but that one was one of the hardest because it wasn’t from a stranger. The ones at the stores or parks I can brush off after a little bit, I can inform that stranger about Autism, and explain that it’s not what they think. Sometimes they simply walk away after I’ve said something, sometimes they argue with me, but always they are nameless people who theoretically I don’t have to see again. It’s easier that way. It’s oh so much harder when it’s people who know you instead.

To be perfectly fair, they were not the only person that knew me that had said things like that to me. My own family fought me tooth and nail about my parenting and my son because in many of their minds he was simply a willful brat that was all too often given his own way and coddled and spoilt. I was over-compensating for being a single mother by giving in to him and not disciplining him in the ways he needed to be a “good” and “well-behaved” child. Just like that person the views changed once I had an official diagnosis. That fact should bring me comfort, that NOW he’s accepted by those that know me because they also know a doctor has stated that he has Autism. But when I look at my son, I don’t see Autism, I see him. Just him. I see his smile, his starburst eyes. I hear his laughter when I tickle him, and his off-key singing when a song comes on the radio that he likes. I watch his body move and flow when he dances as if he were made of liquid sound. I watch the rise and fall of his chest as he sleeps cuddling his baby brother who often crawls into bed with him in the middle of the night. I feel his frustration about his printing when he writes to his pen pals, and I feel his excitement when his baby sister smiles at him. I know of the meltdowns, I live through each one with him, holding him, telling him he’s loved and safe, restraining him as gently as I can when he’s trying to self-injure. But I know of ALL of him, every single piece of him, and his Autism is not who he is, it’s just one piece. Just as being a big brother is not all that he is, or having starburst eyes is not who he is. They are all just parts, that together make up one of the most incredible human beings I have ever had the joy to know. But it’s even better than that, I don’t get to just know him, I get to live with him every single day, experiencing all the highs and lows of his life with him, and being his mother is more amazing than anything. If I had disciplined him more as I was originally told to do, some of his beautiful light would have been dimmed, and that would have been a tragedy for me, him and the rest of the world that would have missed out on so much beauty and light that pours out of him every single day.


The Art of Being Still

I never knew how much I would need to develop the ability of just being still before I had children. Now it’s a gift when one of my sons are close to having, or have teetered off the precipice into a full meltdown due to sensory overload.

To speak, move and “flow” as if one is still, as if your very breathe does not flow further than your own lips is something I have honed over the last almost 9 years. It’s served me very well during tumultuous times with my boys. I use that to help temper the situation, to help them to know they are loved, safe and that it’s okay that they’ve had enough. That I get it and that I can be their safe place during the storming onslaught of their emotions and senses.

If you read about Zen practices one of the key components (that I’ve found) is that the art of being still calms the mind. Each meltdown that my sons have is intrinsically linked to a sensory overload. By not reacting to their meltdown with increased energy or movements, but with stillness, quiet words and slow breath my beautiful boys who’s natural inclination is to mimic those in their immediate surroundings begin to mimic me. In their mimicry of my own actions they too become still. They too slow their breath, their movements, their excessive synaptic impulses slow too.

95% of all information received from the 5 senses is discarded before the brain tries to process it in a neurotypical brain. The amount that is automatically discarded from a brain that has autism is a great deal less than that, and so they often suffer from sensory overload as the brain tries desperately to process most of the data that it receives from the senses. This is due in part because of them not knowing what is vital information and what isn’t.

By bringing them back to stillness during these sensory overload times it helps their neurological sensory filters to come back “on-line” so to speak. Which in turn allows them to regain their own emotional equilibrium. It is not easy in the beginning to be still when faced with the fierceness of emotions and frustration that often accompanies their sensory overloads. But with time it becomes easier to switch with one breath from being full of movement, sound, and energy to being still for them.

As my eldest has gotten older I have taught him to see the signs within himself that he is becoming overloaded and to find a quiet spot within his own mind and let that stillness and peace  flow throughout the rest of him before he has a meltdown. He’s not always successful at seeing it before he has a meltdown, but he’s only 8yrs old, so even half the time is fantastic to me. The other half, well that’s what I’m here for.

As my youngest son gets older, I know he too will learn how to access the stillness within himself, but until then I will continue to utilize my ability to be still and present within myself to help ease his storms.

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