Behind starburst eyes

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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Learning about Emotional Equations

Some of our homeschooling doesn’t look like “regular” schooling. Okay, most of it doesn’t look like it lol. That does not mean they are not learning, nor does it mean they aren’t learning very important things.

Many people find it difficult to get to the base root of their emotional states. When one does not understand the root or cause of an emotion it becomes almost impossible to find a solution that effectively works long-term.

To that end, for some viewing their emotional states as equations can assist in further self-awareness. Further self-awareness can assist in higher levels of overall satisfaction with ones life as steps are then taken to ensure they get what they need out of various situations and interactions.

This is what some of our homeschooling looks like:

emotional-equations_chip-conley_honey-patel

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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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Hidden Messages Within

This past week-end I took Mr. C to a special viewing of “The Mask We Live In” It was a film being shown by Violence Prevention Coordinating Council of Durham and Survivor Advocacy Committee of Durham. It was a fantastic film that highlighted the gender role we force upon males in our determination to narrowly define masculinity and the effects it has on boys and men in how they act, how much they hide of their true selves and the overall influence it has on every aspect of their lives.

He went up to the organizer after the movie and talk was done and told her how happy he was to have seen the movie. How it made him realize he could be his true authentic self and that he didn’t have to act like anyone he saw on T.V We had amazing conversations about the movie, about the hidden messages society sends about males and how they should act. We talked about how he had the right to define who he was, freely and openly and that I would love him unconditionally (as would the rest of our epic tribe, both those of blood and those of choice.)

I felt confident in my parenting of him, and of his siblings. I felt sure within myself that I was not pushing them to be anyone but themselves. That I was encouraging them to be true to their authentic self regardless of traditional gender roles or even current societal norms in regards to who they should be or how they should act or dress based on their genders.

THEN Minx found my knitting scissors (I had hidden them, but apparently not well enough for my wee super sleuth) and gave herself a mullet. An uneven one at that. So I took her to the bathroom and gave her a pixie cut to even out what she’d already cut, and have the rest match it.

Then I got tempted to let her dad take her to get her ears pierced as her hair this short makes her look less “girlish” and I automatically without any real consideration to the issue wanted to “fix” that. As if anything about her needs to be fixed! And it made me feel embarrassed that I even thought for a second about something like that. As if I should change my mind that her body means she has the right to choose if and when she wishes to have holes put in it for ornamentation. Espicially after writing long, short or none, still a woman.

Sometimes I forget just how much of the hidden messages society sends about how one should look or act based on their gender we really take into ourselves. But this was a potent reminder that I need to continue to look within about my own reactions to things, and what hidden messages I’ve accidently assimilated into myself as well. And most importantly to discard the ones that say any of us need to look a certain way simply because of the chromosomes we were born with.

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Aviation and Flight

I am SO blessed to be able to homeschool my children freely as I know not all countries have the same view on homeschooling. This is one of the epic adventures Mr. C gets to attend at Centennial College.

Aviation and Flight

young girl in the red helicopter 01Date: April 9, 2015
Duration: 3 hours
Time: to be determined
Age: Grades 1-12
Location: Centennial College

Learning Outcomes: Aerodynamics, lift, drag, balance, patterns, centre of gravity, centre of pressure, 3-D modelling, problem solving.

Materials:  Model helicopter – Stop watch, tape measure, scissors, sticky notes, paper to make class data table and record results.

Objective: Students will observe, test, record, and change the model helicopter to obtain the longest possible flight.

Description: The four forces of flight are explored as students build rubber band-powered model helicopters. After construction, the helicopters are fine-tuned for optimum flight. Students observe the flight characteristics of the models with adjustments for optimal flight.

Tour: A visit to the aviation centre will highlight the experience as students will learn first-hand from instructors about aviation and tour the facility.

Aviation and Flight.

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Depression, Suicide, and Pills

I had what I’ve read is one of the “hard” talks with Mr. C tonight. We talked about bullying, depression and suicide. We talked about how sometimes some people that are being bullied feel like they have no other option to escape their situation than to take their own life. I promised him that there is always a solution. That if we had to I would pack everything and everyone up and move 500 km away to get him out of that kind of situation. (I also explained there are other less drastic solutions we’d try first) But to never ever think he was trapped in that scenario, because if all else failed I’d hire a moving truck. I meant it. I wouldn’t want to move because of something like bullying, but I’d sure as shit do it if I knew it would make the difference between having Mr. C with me and not. See there are lots of studies that show a correlation between Autism and depression. But more importantly I know his family history, including his maternal medical history.

We then talked about depression. We talked about how sometimes for many different reasons (including but not only because of bullying) some people end up feeling like they’ve “lost their happy.No matter what they try to do, including activities they used to love, their happy seems just out of their reach. I explained that it could be because the brain isn’t making the right amount of certain chemicals. It could be because of a really hard time in a person’s life. I also explained it could happen with no obvious cause in sight. I told him it was important to talk to me or another grown-up he trusted if he felt like his happy was gone. We talked about the difference between being sad, having the blues, having the blahs, being upset and being depressed. I told him it didn’t matter which one he was feeling it was okay to talk about it and that his feelings would be respected. I promised him I would never slough off his emotions when they weren’t “happy/shiny”

I’ve read that these were hard conversations to have with your child, but for me personally that wasn’t the case. Instead I was grateful to have them with him. I was glad to hear him say that he knew suicide was never the answer. I was thrilled to hear him say he trusted me to help him find a solution should he be bullied or feel like he’d lost his happy. I’m glad because I’ve struggled for 11 months to find my happy. It’s been since we lost Joy that I can’t seem to find it. I try, and I have brief moments where it seems almost within reach, but then it slips through my fingers again. I end up staring off in the distance trying to remember how to smile like the woman I was in the hopes that if I go through the motions long enough I’ll finally BE her again. Only it hasn’t worked. I see her staring back at me through the mirror, so clear I could almost touch her, but really she’s like a faded photograph, because she’s just a reflection of who I used to be. So I went to my doctor finally and I am now taking something to help. Because I tried everything I knew, but I still couldn’t find the happy woman I used to be. Which is part of the maternal medical history I know of for my children. The part that makes me aware of how needed conversations like tonight’s was to ensure should he ever be facing a rough part on his path he’ll ask for help in walking it. Because that’s what I’m here for, to help each of them in whatever way they need. I acknowledge a part of that is also taking care of myself. In part so that I CAN be there for them, and also to show them it’s OK to ask for help when you truly need it.

Canada:

If you are contemplating suicide, please contact your doctor, or go to your local emergency room, or dial 911 from any telephone.

If you are being bullied, depressed or just need someone to listen and you are under 20 you can call Kids Help Phone 24/7 for free: 1-800-668-6868.

If you are an adult and find yourself in a mental health crisis: Canadian Crisis Centres is a list of crisis centres across Canada, with local free phone numbers.

You can also dial 211 from any phone and ask to be connected with your local crisis service.

In the USA:

Crisis Service: 24/7 for free help 1-800-273-8255

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Teenage Mutant Ninja Turtles

tmnt

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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Just 2 in 2 million

Recently Mr.C won a couple of tickets to appear in the audience of YTV’s “The Next Star Season 7” (which airs on Mondays at 7pm) Through various circumstances the 3 people he’d thought to bring were unavailable and so it was just he and I that went. While at first I was sad for him that his friends were unable to attend with him, I cherished getting some one on one time with him. Him waiting for the bus to go to the studio:

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After he was done at the studio we hopped on buses and subways and travelled to Chinatown where we spent an unforgettable afternoon/evening. We window shopped, and shared yummy desserts from a little bakery. We laughed and chatted as we ducked in and out of different shops with their colourful wears and tempting foods. I didn’t buy myself anything, mostly because I got the best gift I could in the hours spent with my eldest son. He’s getting so big, almost a decade has passed since I first came face to face with one of the greatest loves of my life. When I had a really bad dizzy spell while we were out, he was calm and sweet as he smiled at me and reminded me that it was a trick of my mind and that nothing was spinning around us. While I listened to his words, so much like his father’s that I had to smile, what brought me to tears was the beauty of his serene smile and his determination to make sure I felt okay. He’s such a good person, through and through that I wonder how I got so lucky to have him.

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I’ve promised him we’ll go back to Chinatown again soon, and I offered that we could bring people with us next time if he wanted. He looked at me and solemnly told me he’d rather it be just us two, cause he likes our one on one time just as much as I do. Or should I say 2 in 2 million when we spend our day in Toronto 😉

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Growth Spurts and Autism

 

Growth spurts are a time of constant flux in the entire body. They are a time where all the chemicals of the body are busy creating new growth, they are a time of rapid development of bones, skin, muscle and even brain matter. When someone is Autistic their neural pathways work differently from the get go, but they are the same as everyone in the fact that their bodies are always trying to return to a state of homoeostasis. Homoeostasis is the tendency of an organism to try and maintain it’s internal equilibrium.

However during growth spurts the body is far away from it’s ideal state of homoeostasis, even during sleep.

In the brain specifically the white matter will increase greatly from ages 4 to 20. White matter is the part responsible for relaying signals and messages from one section of the brain to another, it is responsible for sending sensory and motor stimulus to the central nervous system to create a response.

What does that mean for an Autistic child or adolescent? It means that the part of the brain that sends sensory signals is rapidly growing, which means new pathways developing, and just like in a field, it takes time for a pathway to become easy to walk, and familiar.  This means their brains are trying to send signals through new channels.

It makes sense that they will have more difficulties during those times of rapid growth with many aspects of daily living that they might not have had as much difficulty with pre or post growth spurt.

 

Areas of difficulties can include:

1) Speech production such as pronunciation, and echolalia

2) Sleep patterns can be disrupted and more irregular than what is typical for that individual

3) Transitions may be more difficult and they may need more time and help to adjust to changes in activity or location

4) Repetitive and Stereotypic Behaviours may be increased as they provide comfort and self-soothing to the individual

5) Emotional Regulation may be decreased as they are already struggling to return to homoeostasis and may feel closer to being emotionally overloaded from the moment they wake up than what is typical for that individual.

 

How you can help your child:
1) Remember that this is a difficult time for them. They don’t want to feel out of control, upset, confused, agitated or anxious and yet they are right now. No one WANTS to feel those emotions, and will naturally try to do whatever they can to either get away from the situation causing them, or lash out in frustration if it’s an internal situation they cannot remove themselves from.

2) Don’t overload them. If recently you’ve been helping them to learn how to cope with a specific sensory issue, or speech production issue such as pronunciation, remember that even when they are not going through a growth spurt they have to expend mental energy to master things such as being able to touch grass or pronounce an “s” sound correctly. Don’t stop working on goals already started, but don’t add additional ones until they have mastered the goals they are currently working on.

3)  Every person has a way they communicate, listen/watch extra carefully to theirs to learn more about what ways they are specifically struggling with the most. Help them to create plans to work through such issues, or if they are too young to either make the plans themselves or with help, make them for your child.

4) Watch yourself. If you are having a difficult time staying calm remember that you have the right to feel however you do, it’s how we react to our emotions that is either okay or not. Take time for yourself, especially if you are extremely frustrated. As long as your child is in a safe environment there is nothing wrong with stepping into the next room to take a few minutes to regain your composure. Or if you can, find someone you trust to babysit and go out, even a trip to the grocery store alone can be enough to come back to your child ready to help them in the ways they need.

5) Nothing lasts forever, even growth spurts. Eventually they will hit a “lull” in their growth for a few or even several months at which time it will be easier for them to handle all that our fast-paced society throws at us.

 

References:

Billeci, Lucia, Sara Calderoni, Michela Tosetti, Marco Catani, and Filippo Muratori. “White matter connectivity in children with autism spectrum disorders: a tract-based spatial statistics study.” BMC Neurology. N.p., 29 Nov. 2012. Web. 18 July 2014. <http://www.biomedcentral.com/1471-2377/12/148&gt;.

 

Giedd, Jay N., Jonathan Blumenthal, Neal Jeffries, F.X. Castellanos, Hong Liu, Alex Zijdenbos, Tomas Caron Paus, Alan C. Evans, and Judith L. Rapoport. “Brain development during childhood and adolescence: a longitudinal MRI study.” . Nature Neuroscience , 1 Jan. 1999. Web. 18 July 2014. <http://www.nature.com/neuro/journal/v2/n10/full/nn1099_861.html&gt;.

“The brain from top to bottom.” Le cerveau à tous les niveaux. N.p., n.d. Web. 18 July 2014. <http://thebrain.mcgill.ca/&gt;.

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