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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Goodbye Toddlerhood

stock-illustration-58367370-cute-children-cartoon-waving-handMy youngest turned 4 this past week and with her latest birthday I now officially no longer have any toddlers. My youngest is now classified as a “preschooler”. The day she was born the doctor came to see me once I’d woken up and told me I could not have anymore children. He cautioned me that I’d barely made it through having her and warned me that if I became pregnant again I would not live through the next labour. Since she had been an emergency c-section because I was hemorrhaging so badly her and I both were lucky to have lived, I believed him completely. My husband and I took steps to ensure she was our last. I worried at the time that I might feel a loss from not being able to have any more children. I worried that since I had not made the choice, that I would be angry or even bitter as time went on.

I have had moments where I am a bit wistful for the baby stage, for the moments when they are so new and your learning their cries, coos and scent. But overall, I have been at peace with the fact she was will always be my youngest. As I watch her get bigger, develop into the person she is, I am thrilled and in awe. As much as I am certain that any other children I might have had would have been amazing individuals as well, I feel a deep sense of contentment with no longer having any in the baby or toddler stages.

I’m excited to now have two in the preschooler stage, in addition to a teen, and two tweens. (My eldest step-daughter became a teen in February) I’m looking forward to all of the adventures that I get to have with them as they continue to grow into the persons they are meant to become. While I adored each of their baby and toddler stages, I’m waving a happy farewell to that stage of parenting as I leap into the next one with them.

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What dreams may come…

In grade 11 I took a fashion/sewing class. About three quarters of the way through it I stayed after class to show my teacher the sketches I had been working on for months of clothing I’d designed. I knew the fabrics each piece would be made out of, and I could see in my head a 3D image of the finished article. I could turn it around in my head and see where each seam was, and exactly how to make it. I asked her if she could help me to understand how to draw the female form a bit easier as I had some difficulty sketching what I saw in my head. She sloughed off my explanations and question and basically told me not to worry about how to draw my ideas better as I’d really not need them. My face grew hot, my hands sweaty and my stomach churned as I tried to get outta there as fast as I could, all the while calling myself a fool. I still drew the things I imagined but I never dreamed of showing anyone again.

That afternoon is why no matter what dreams may come to them I encourage my children. I might tell them it’ll take a lot of hard work to break into an industry or a great deal of additional formal education. But I ALWAYS tell them I believe in them and their ability to pursue their dreams. Because really, sometimes when someone shares a dream, while they may want it with their whole heart, their confidence in being able to accomplish it is still as fragile as a butterflies wings, and I want to watch them soar.

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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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Long, short or none, still a woman

My womanhood is not dictated by the length of my hair.

So last week I found lice in Mr. N’s hair. I checked my own and found a nit. My solution was simple, I washed everything and I shaved our heads (and Mr. C’s just in case as Mr. N loves to climb into bed with him and lay his head on his brothers and snuggle. A fact that leads me to near tears because of the vast change in his ability to handle physical contact, but I digress)

I thought I was judged a lot when I had pink hair, but WOW it was nothing compared to walking around as a woman with a shaved head. I have had people stare, snort their distain and even ask me if I actually think I’m still pretty without my hair. Here’s what it’s made me realize. We as a society are FAR too critical of everyone, especially strangers! While I logically understand that our judgemental tendency most likely stems from thousands of years of not trusting anything different our “outside of our tribe” as part of our means of survival, it doesn’t stop it from bothering me at times when I am judged by strangers. But then I breathe and try to remember that no one, not a stranger, not a friend, not even a family member has the right to dictate what I do with my body.

Something as temporary and superficial as a hair cut does not change what gender I identify as. I am not “less of a woman” because I only have an 1/4 inch of hair on my head. Just as I was not “more of a woman” when I had long tresses. What makes women; women is their intrinsic belief that they are. What makes me a woman is within me, it’s my spirit, not my hair or clothes.

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Adjustable Tutu!!!

Miss. G loves tutus, and I love making them for her. The part I don’t really like is how 3-4 months after it’s made I have to make a new one as the old one is too small. (If it’s done with an elastic wasitband than I have to add lots more tulle to it to fill in the gap it gets every time she grows, and some how it never looks as nice as when it’s first done.)

I found some seriously epic yarn at Value Village the other day and I wanted to knit Miss. G a jumper out of it for Yule. But since she’s no longer a newborn, one skein wasn’t going to make a jumper! So I started thinking, and pondering, how could I use this awesome yarn to make her something fantastic that wasn’t another hat or set of mitts? Randomly it came to me, I’d make her an adjustable tutu!

The premise was simple, knit (or in my case garter stitch) a rectangle one and a half times as long as she was wide, and as wide as I wanted for the belt portion of her tutu:

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Then using matching tulle (meaning every color I could find 😉 I looped each piece through the bottom row of the “belt”

To make it adjustable I took two buttons and sewed one on either end of the rectangle, one on the “right side” of the belt and one on the “wrong side” of the belt so they could be slipped through the stitches wherever was needed for a perfect fit.

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In the end it looks like this:

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I think she’ll love her Yule present 😀 I know I love it, and I think since there’s still time left before Yule that I’ll be making some more for other girls I know, cause the only thing better than a tutu is an adjustable tutu 🙂

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Wonder Woman

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I normally write about my wee ones, or about crafts/gifts I’m making but this week has a very special day in it that isn’t about either of those topics. It’s my mother’s 65th birthday this week. She is my inspiration every single day. Any time I’ve gotten caught up in society’s “me” attitude I look at her and I am humbled. She is a woman that has made more sacrifices than I can begin to list for her children. She is the epitome of a real wonder woman. There’s a line that Queen Hippolyta says to Wonder Woman before she leaves paradise island: “And remember that, in a world of ordinary mortals, you are a Wonder Woman.” While it was said by and to a make-believe character, nothing comes closer to the truth than that sentence about my mom.

She fights harder than any woman I’ve ever met for her kids and grandkids. But a pushover with us she’s not 😉 We all know not to try and pull crap with her or in any way in general for she’ll find out about…she always finds out, one of her superpowers I’m sure 😉 She’ll fight just as hard with us if she thinks we’re not living up to the potential she sees within us. But Gods forbid you hurt one of hers, mad at us or not she ALWAYS has our backs. I’m far from perfect and like everyone else I’ve made mistakes, said the wrong thing, did the wrong thing. Like all parents she’d get mad at some of my stunts, but no matter how mad she was I always knew she loved me unconditionally. If I’ve ever needed her, she’s been there.

But it’s not just me that she’s so fiercely loyal to. She comes across to others as gruff, as a hard-ass, and if you make her mad she really can be. What often gets overlooked is how loving she is. How far she bends for those she loves, how much she quietly gives in the background to those of us privileged enough to have a spot in her heart. For to be loved by her is to have someone in your corner for the rest of your life, no matter what. She taught me that being a good person is about doing the right thing even when no one was looking. That if I have to wait for others to see, than it’s not being a good person it’s being self-serving. She taught me to follow my dreams, and to live my life according to my own terms. To not bow to anyone’s opinions, not even hers, but to stand strong in my convictions in what is right for me and my kids. Just as she did. She taught us that we could do anything, and that she’d cheer as we soared as high as we dared. She taught us that life isn’t fair, but that doesn’t mean we shouldn’t be. She taught me to be loyal to those I loved, and to work hard for what I wanted. She taught us through her example. She is one of the greatest blessings in my life. I can only hope my own children will look upon me when I’m 65 and see even half the value I see in her presence, in her love, in her friendship, in her.

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ASL Alphabet Memory Game

The more I try to incorporate signing into my day the more the kids are interested in it. To that end I thought why not combine a fine motor skill activity (picking up the shapes practices using the pincer grasp) with learning colours and shapes with ASL.

So I made 2 copies of the ASL alphabet that I found here: http://www.lifeprint.com/asl101/topics/wallpaper1.htm

I purchased the wooden shapes at our local dollar store, but one could use card stock, cardboard from a box, or even foam blocks (if picking up almost flat shapes is too difficult for the person playing the game)

I then cut up both sets and glued one to different coloured circles and one to different coloured squares. Just like other memory games all the pieces are flipped over and you have to make a match. I tell the kids to make their matches by picking one circle and one square.

Both Miss. G and Mr. N love playing it and I’m getting some great practice before my first day of ASL class at our local college!

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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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