Behind starburst eyes

Corona’s Effect on Mental Health

It’s been months since Covid-19 became a worldwide epidemic, and while I am truly, deeply thankful that my family has not experienced this virus directly, sadly it still has had an impact on my children through their mental health.

He used to be gregarious, he used to be fearless, he used to be happy and confident…Used to be…

It makes my heart ache to see the changes in him, to see how scared he is to even leave the house because as he puts it “It’s invisible, I can’t see it, I can’t fight it” He used to be thrilled to pop over to the store for me, and he’d always ask if he could pick up something for dessert for everyone in addition to the bread or milk I was usually asking for. Now, his first response is “Or I could not go” with a pleading face as he says it. He used to love going for runs, now he says “there’s too many people”. He would rather forgo takeout or new toys if he has to go outside for them.

So instead I don’t ask him to go for me, but I do ask him to go with me. I’m willing to walk with him, because I’m determined to make him go out (while of course allowing precautions such as a mask and hand sanitizer) because he can’t stay locked inside for the next however long. It’s not healthy for him.

I know this might be a long road for him, but I remember when he was 2 and would have uncontrollable meltdowns when we’d walk different routes home from Airzone, he’d cry that it “wasn’t the right way home”. Back then I knew he had to learn there were many ways to get to somewhere, physically and metaphorically. I would hold him and tell him over and over he was loved and safe and I understood and he was my wonderful brave boy as he cried for hours even after we got home.

This is no different, I’ll be there each step of the way offering him love and support as I help him walk this hard path. I love him enough to do the hard things because he always has been and always will be worth the effort to help him thrive.

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There’s Always A Reason

During a pandemic isn’t the most obvious time to decide one is going to start working on a trailer and planning a trip across the Americas.

While yes a part of the reason is definitely because we couldn’t go on our grand adventure across Europe, another part was the lump I found on my sternum. I needed something to focus on while I waited for results.

While many people equate Autism with a certain amount of social oblivion, where my boys are concerned momma being upset sets off alarm bells real quick! Couple that with this pandemic already having them more anxious and the inability for me to go off from them for awhile while I process and you’ve got the potential for a whole lot of additional stress and meltdowns on their part (totally warranted mind you!)

So instead I focused on the trailer and creating a sanctuary for the kids and I to have. For a place to make memories for years to come as we adventure together, because the alternative wasn’t something I could afford to focus on in such close quarters with them.

With all the additional medical precautions in place for Covid, getting a diagnosis wasn’t as quick as I would like. It took over a week to be able to physically see my doctor, another 2 weeks for the ultrasound, and then a week and a half for inconclusive results. My actual sternum is inflamed and swollen, so I was prescribed an anti-inflammatory for rheumatoid arthritis to see if it helped to decrease the swelling and then an appt with radiology 3 months from now to look at it again. ūüė¶

The idea that I should just sit around and wait 3 more months to see what exactly it is because most medical procedures that aren’t for Covid or for immediately saving one’s life is so disheartening and makes me wonder how many people aren’t getting timely treatment because our government cut funding for hospitals too much for too long and so they can’t handle both right now.

The bright side is that the pain is less with the medication and I think the lump is smaller so fingers crossed it actually is shrinking, and isn’t potentially life-threatening.

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Why I don’t often write about my sons anymore…

When I first started this blog, I would write quite frequently about my children. I thought that by giving others a glimpse into the world of Autistic children, and the parenting of, that it would help. That it could show the world what our lives were like; both the positive as well as the struggles.

There is a difference though between when a parent of a neurotypical child writes about parenting, and a parent of a special needs child writes about parenting. I didn’t realize that when I first started writing. I didn’t realize that far too often the media utilizes those same struggles to suggest that a parent of an Autistic child should be pitied. Mostly I didn’t realize it, because I don’t pity myself.

I see myself as having been gifted 3 beautiful souls to guide towards their fullest potential. I see myself as a kind of tour guide. I’m only here to help till they themselves feel less like tourists and more like locals. The thing is, I thought that was what all parents have to do.

I have never been a mother to a neurotypical child, so maybe it’s totally different? But from what I have heard, it’s still hard as hell to be a mom; regardless of a child’s neurobiology.

So why is it that having a rough moment or day or even a totally rotten week is viewed so differently when the child is classified as special needs? It’s different because we view having a child with a different neurobiology as something bad, as something to grieve and be depressed about. Only I’ve never felt that way about my kids.

So when I write, I have to consider what kind of impression am I adding to society of the reality of having an Autistic child. I don’t want to add to the gross misconception that they are less for having a different neurology; because,¬†they aren’t. The society that equates how much money a person can contribute to corporations (through working at, or purchasing from) as a human being’s¬†only worth is what should be pitied, and seen as less than;¬†not my beautiful children. ¬†¬†

 

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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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We’re not in Kansas anymore…

“Of all the things that are different its the bees that make me homesick, they look like regular bees but they are blue and purple. Every time I catch a glimpse I think it is a real bee but then I am reminded that it is not home.”

The above passage from a book struck me deeply.

It made me think of many conversations I have had over the years with many persons and the struggles of trying so hard to “be a part of this world” when you feel like you really don’t belong. And isn’t that one of our most basic needs as human beings, the feeling of belonging? The feeling of being accepted? The feeling that yes, we too are a part of something larger than just ourselves. Some people find that feeling within their families. Some find it with a couple of close friends. Some find it at a place of worship.

But what about those that don’t find it? What about those that struggle each and every day to just BE a part of a group that loves and accepts them unconditionally?

98% of our DNA is the same as every single person’s on the planet, surely 2% out of 100% shouldn’t be enough reason for someone to feel different and excluded from the rest of the world…
How can we as their fellow human beings help? I don’t know. I don’t have the answer, but I’m hoping someone somewhere reading this just might. SO PLEASE, add your ideas at the bottom. Perhaps with many minds we can find a way to ensure ALL people feel the love and acceptance they deserve as fellow human beings.

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Dressing Board

Mr.N has an Occupational Therapist due to his fine motor skill delays. One of the tools she has been using with him is a dressing board to help him learn to do and undo buttons. I of course fully believe in homework ūüėČ and so I created this:

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Below is how I did it for those that want to make one themselves:

First the supplies:
1 art canvas (any size, but you’ll need enough material to wrap it like a present. Not that I did that, but it made sure there was enough of the fabric I wanted to use)

Fabric (Fleece doesn’t fray so it’s great for the no-sew way of doing it, I simply used some left over fabric from bean bags I had made him previously)

Buttons (the larger the better to start with, you can always make more boards with smaller buttons as they progress)

Thread (to sew the buttons on)

Needle

1 Permanent Marker

Scissors

Staple Gun

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(I was making multiple, hence the multiple supplies)

Place fabric along the back of the art canvas (near the wood) and staple it onto the back wooden frame of one side.

Wrap it around to the front and make sure it goes 2/3 across the canvas, and trim accordingly.

Repeat with other side, making sure there is a fair bit of overlap as you want it to be a bit roomy once the buttons are done up for ease of use in the beginning.

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Then place buttons on the side you want as the inside and sew on with the needle and thread.

Place top fabric over buttons and cut button holes in the top fabric.

Write an inspirational message on the canvas for them to discover upon opening the buttons. (Ours says “You did it! Great Job!)

You’re finished! Minimal sewing (just the buttons) and minimal cost and yet you now have your very own dressing board for practising at home!!!

I apologize to those that know how to sew or are looking for specific dimensions or patterns. This was done free hand (and yes I did sew the fabric edges of mine but that is because I didn’t use fleece, I was using leftover fabrics from my stash) and I wanted to keep it as simple as possible for those that maybe don’t consider themselves “crafty” but still wanted to make something like this for their child. If you make one, I’d love to see it, please post a picture in the comments section ūüėÄ

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It’s not money that is the root of all evil it’s….

greed (1)

I don’t believe money is the root of all evil. How can it be, it’s just a bunch of paper and some metals shaped or coloured in certain ways. Numerous parts of Earth have different looks and patterns for their money. It’s simply a physical representation of a value we as a people have decided to use to barter with for our time or goods or services instead of bartering directly for the goods or services we need with one another.

That being said, the ability to collect money, to hold onto more than one needs for their well-being can become a negative thing when the right (or wrong depending on which way you look at it) person is the one hoarding it. The endless pursuit to obtain more, to never be satisfied with how much one has, that greed is the evil, not the money. It doesn’t really matter if it’s metals, jewels, or painted pieces of paper, when one is consumed with collecting to the point that they no longer can see how their actions might affect others, or even worse they don’t care how their actions affect other’s then it’s just plain greed.

It’s greed in general that is the real evil, not money. When we stop looking at one another as people, deserving of respect and common decency and instead simply evaluate how we can use them to bolster our collection of material goods it’s a sad state of affairs we find ourselves in.
Does this have anything to do with Autism? In a way yes actually it does, but it’s so much more than just about Autism. See, when we only look at other’s and evaluate their worth to us in terms of potential return we don’t see them for who they are. And it’s very easy to miss all that they could contribute to our lives. That can easily and readily be said about every single person on this planet! Each human being has the potential to add to this planet in meaningful ways. Some contributions might at first appear smaller than others, but just as the ocean is made up of countless rain drops, every contribution does make a difference!

When we decide that a person is worth less because we don’t believe they will make enough money for us, or provide us with an opportunity to make more money we are devaluing human life. We are saying that a collection of material goods that cannot feed, house, heal, or love us is more important that our fellow human beings.

There is a Pagan song that is sung often at different festivals around a fire, and the chorus is “We all come from the Goddess” No matter what religion you believe in they all state in their own ways that we all come from a central place, a central being or set of beings.

Even most Atheists agree that human beings come from a central source, even if it has no “Higher Power” but was in fact an evolutionary thing.

So while the entire world can agree that we all come from the same source (regardless of what we personally believe that source to be) why can we not see the intrinsic value each person on this planet holds and treat them better than we do our money or gold?

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Teenage Mutant Ninja Turtles

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I have agreed to speak at a local event called “The Heart of Ajax” this coming Wednesday. The really cool part is I’ll be speaking with a bunch of youths from all over the town of Ajax who will then devise a plan to take back to their school that will do one of the following: Raise awareness, Teach other kids how to be an Ally, Raise funds for an organization or in some form bring about positive change and positive impact in the lives of others. I was asked to speak about mental health, the stigma surrounding mental health and how to be an ally to those not classified as neurotypical.

I have thought extensively on what I wanted to say. I have started a dozen speeches, and threw each one away. Then tonight as I watched my son gently lean in to kiss his sleeping cousin’s forehead I saw her wall decals. She adores Teenage Mutant Ninja Turtles (TMNT) and I knew right then what I was going to talk about.

I hate TMNT. I hate what they remind me of. When I was in Grade 5 there was a boy in my grade who loved TMNT. we’ll call him “Shawn”. He would talk about them every single recess, and lunch hour. It didn’t matter if other kids really paid attention our not, this boy would still talk about them. See he didn’t really catch social cues all that well. He wore clothes a bit different from the rest of the boys my age, instead of jeans he only wore sweat pants, and his shoes had Velcro instead of laces. He would go into a special room with a special teacher than none of us had seen before for allot of his day. He didn’t always brush his teeth, enough so that the other kids really noticed the build up on his teeth at times. He was never mean to anyone. He would smile and say hi to everyone every day. For quite awhile, the first few months at least he tried to play with the other kids at our school. Every recess, and every lunch hour he’d try to insinuate himself into our games and our conversations. Most often his addition our conversations was to change the subject to TMNT. There was a girl in my class who was not very nice to allot of kids. She was especially mean with this boy. She would laugh at him and make fun of him and purposely exclude him from games and interactions on the school playground.

I never said anything mean to him. I never really said anything at all to him. I never stood up for this boy. I never tried to be a friend to him. I stayed silent when he was being slighted or shunned or made fun of. 22 years later I still have a lump in my chest when I think of him. I still feel bad that I wasn’t strong enough to stand up for him. I didn’t know why he was different. I didn’t understand it. I didn’t understand him. Do I know what his official diagnosis was, no I don’t. In part because we didn’t talk about that stuff back then. We didn’t get presentations or custom made books in our classroom to explain why someone was a bit different, and that we should accept them as they are. We didn’t have Autism Awareness Day or many of the other Awareness Days we now have for mental health/neurological diagnosis’s. But those are just excuses I tell myself when I look at my two sons. Pat answers for why I wasn’t the type of person I now want other children to be towards my own Autistic boys. The truth is, acceptance is taught. Acceptance is learnt, through being open, through conversations and presentations and through real life moments with someone who only wants to talk about TMNT.

My goal is to help these kids see how to be better than I was at their age. My goal is to help them develop their own school’s plan for increasing awareness of, and acceptance of persons with, various diagnosis’s. I want for the “Shawn’s” of the world to be invited to a birthday party when the entire class is given invites. I want their additions to conversations to be valued, even if they’re not agreed with I want them to feel like their peers are listening when they speak. I want for these kids I’ll speak with tomorrow to learn and in turn to teach others how to be an ally to those different from themselves. And maybe even to be open to the possibility of friendship with people with all different neural structures.

That is why I hate TMNT, because they remind me of when I failed at being an Ally. I failed at being open to someone different than myself. That is why I also love TMNT, because they remind me to be better, to be the type of person I would want in my own child’s life.

P.S “Shawn” I doubt you’ll ever read this, but if you do:¬†I really am sorry.

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Active Participation; his way

Shoulders slightly hunched as he plucks at his pant strings. Sitting on the only chair in the room, he watches the other children dancing. It would be a sad picture of a child excluded, until you look at his face. He’s not forced to sit on the sidelines as it first appears. He’s focused intently on watching their dancing. He’s breaking down the flow and movements of limbs and core into pieces he can then re-create at home. In private he’ll try each move. If he’s stuck he’ll ask his brother for help. Even then, he’ll ask him to do them over and over until he’s sure he’s figured out the “how” to each one…Then he’ll dance. Joyfully, with abandon he’ll dance, for himself, and for all those he loves he’ll ask: “Wanna see my cool dude moves?” But first he’ll watch. I’m thankful our local YMCA accepts him as he is. I’m grateful they respect his ways, and understand his need to watch first. I’m glad they understand that for Mr. N watching IS active participation for him.¬†It’s his way, and they smile at him and tell him he can join in with the actual dancing when he’s ready.

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Some things you just can’t Google

There are times when I get caught up in ensuring that Mr.C is “on-track” or “at grade level” with his peers. I get fixated from time to time on the lists lit up upon my computer screen of all the things our local school board says he should know at this time. Lists of facts and figures, books they have chosen, grammatical rules and scientific theories. But no where in their reams of pages does it speak of morals, attitude, creative thinking, leadership skills, ingenuity or honour.

When I get caught up on what he does or does not know academically, I remind myself of the following:

I am not here to create a robot that can spout facts or scientific theories verbatim, but lacks the ingenuity to put them to productive use when he needs or even wants to do so.

I am not here to force him to memorize plots and dialogues, but lacks the critical thinking skills to grasp the significance of some of the literary works of art we currently have access to as a society in general.

I am not here to ensure he conforms to someone else’s standards, but lacks the honour and strength of character to stand up for what is right when what is wrong is being accepted as the status quo.

What I AM here to do is to teach him to (eventually) be a good man. To be the type of person others will be proud to call their friend, their ally. To be someone with enough courage to stand up for what is right, even when he’s forced to stand alone to do so. To be a man of honour, of integrity, to be a man of ¬†ingenious¬†leadership abilities, even when he’s only leading himself along his own path.

Don’t get me wrong, I DO teach him academics, but if it takes him a bit longer than some piece of paper says to learn¬†about the periodic table of elements or the correct placements of commas I’m okay with that. Why, because he’s learning SO much more right now, he’s learning how to become the man he will be for the rest of his life.

Plus if he forgets the standard conversion rate of ATP to ADP he can Google it,¬†but when it comes to things like strength of character well there are some things you just can’t Google ūüėČ

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