Behind starburst eyes

Our new version of “normal”

I sit here typing while he sleeps beside me. We’re at home now, but the watching never truly stops. I’ve been watching him so carefully for 3 days now. Watching his chest expand and contract with every breathe. Watching to see if there’s still a tug at his trachea from struggling to breathe. Watching as he cries in fear for me while I hold him during treatments. Watching him wake startled and shake as different alarms and announcements pull him from sleep time and time again. But I also watch as he sings the Spiderman theme song with the amazing nurse and paramedics. And I watch him smile at me and tell me he loves it in the hospital because he gets to have me all to himself, and be so excited to see his dad, nana, siblings, auntie and uncle (even though his siblings means he has to “share” me again lol)

The doctors say he has Asthma. It’s what filled his right lung with striations of fluid and made it so difficult for him to breathe. He’s to be on inhalers every day for the next 6 weeks at least, and another inhaler whenever he’s struggling to breathe. We have an “action plan” for if/when he gets an attack again, including if it’s like this one or worse. We now have a doctor that will be following him until adulthood specifically for his Asthma. And I have one more thing to watch him for, one more medicine to carry, one more fear in my heart.

When I’ve heard the word Asthma before I didn’t realize it was a big deal, I didn’t know you could die from an attack. I blame my mother for that lol. She has asthma and as a little girl she told me all sorts of things so I wouldn’t worry. Like that if she was really sick from it the worst that could happen is she’d pass out and her lungs would “re-start” themselves. She told me that as long as she had an inhaler she’d never get really bad. As I grew older I never thought to question the comforting things she’d told me. I never thought to look deeper or to even examine what she’d told me with my own knowledge of anatomy and physiology. Instead I held onto her answers because it meant she was always going to be okay. That was and to be truthful still is something I desperately need to believe in. Only now I need to know the truth about asthma. I need to know that it can be fatal, and it can be difficult to control. It can also be managed, and (for some children at least) can be something that is outgrown eventually.

The morning he was admitted to the hospital I had already used ventolin and it hadn’t helped him at all. His attacks may not always be able to be controlled by simply using an inhaler. We might be visiting the pediatrics ward again. So with this knowledge I am altering our version of normal. It now includes inhalers, actions plans, respiratory therapists, an additional doctor for his healthcare team and possibly an O2 saturation monitor for at home to check his levels if I see him struggling to assess better if we should drive him to the hospital or if we need to call for an ambulance instead. But it will still include trips to the library and Airzone, unbirthday parties and fakey doodle restaurant nights. It will still include swimming lessons and songs, visits with friends and random adventures. Through it all, as always it will include love and an ever watchful momma who’s added one more thing to always watch for.

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Autistic Social Skills: Cut me Some Slack Please

starbursteyes:

So much YES

Originally posted on Autistic Aloha:

Why, as an Autistic person, do I find myself spending an inordinate amount of my time and thought processing on trying to making sure that I don’t “offend” anyone, when nearly nobody cares one bit if they offend me? What is up with that?

I am always second-guessing the things that I say, or write, to be sure that they are not going to offend anyone. I find that most other people don’t give a darn if they offend me. They do whatever they want without giving it even a passing thought. This is a serious unbalance of social consideration.

Since I have a DIAGNOSED CONDITION, that has a core feature of having difficulty with social situations, I should be given the benefit of the doubt when I am trying to communicate with other people. They should be looking at ways of helping me to get my message across…

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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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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 ;-) 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 :-D

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Pincer Grasp Games

We’ve been working on Mr.N’s pincer grasp during his OT. Of course that means I want to work on it at home as well to truly maximize his personal gains. To that end I went to our local dollar store a few weeks ago and picked up some foam and felt hearts and mini clothes pins with hearts on them. Each day until Valentine’s Day we would play a game where we tried to pick up the most hearts first. After Valentine’s Day we started with foam eggs, bunnies, and baby chicks and Easter colored clothes pins. It’s fun for him while helping to improve his pincer grasp. A total win win :-) Below are pictures of the game supplies, as you can see they are easy to purchase or make.

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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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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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Suicide Sucks

starbursteyes:

Because it needs to be talked about. Depression needs to be accepted as real and difficult, and needs to be talked about. As does the potential consequence of living with it.

Originally posted on Vintage Hearts At Home:

It was later on Sunday evening, the 7th of December 2014 when my cell phone rang. It was next to me on the couch. My battery was low and I couldn’t answer it but I saw that it was my sister Carrie. We had just talked a few hours earlier about nothing really, just our Dad and how old he was. We joked that he didn’t look his age and that we were inheriting good genes from him in exchange for bad knees and hips. When I saw her calling I remember thinking that was weird because if she forgot something, she would of sent a text. As soon as I had that thought the house phone rang. Our landline. Which no one calls except telemarketers. Without even seeing the phone I knew it was her. I told my hunny to toss me his cell so I could call her…

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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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Unbirthday Tea Party

images-4  Mr.N has been quite emotional lately. Very easily upset, to the point of being distraught. It hurts my heart to see him like this. A big part of it is he’s so very sick of being sick. His cough has finally stopped sounding like a seal’s bark and he can breathe through his nose again, but he’s still not 100% better. Tonight I looked at him, quickly looked at the calendar and exclaimed “Oh my goodness! I almost didn’t realize what tomorrow was!” Intrigued he asked me “what?” So with great seriousness I told him “Why, it’s your unbirthday of course!” He told me it wasn’t. So I asked if it was his birthday, he said no hesitantly so I said “Well that settles it. It must be true, tomorrow is your very own certified unbirthday!” I made a big deal of looking at the calendar again and exclaimed “Oh my! Well it just can’t be…But it must. Yes…Yes it must be!” He got excited at this point and asked me what it must be. I said “Why it’s ALL of your unbirthdays tomorrow!” He started to giggle, a sound all too absent these last couple of weeks. I told him we had to have an unbirthday tea party to celebrate. I assured him that while he was sleeping I would make special star covered cakes to nibble on during their unbirthday tea party. Which are now finished, and come morning I’ll have them help me make and decorate our paper top hats which we’ll wear for their unbirthday tea party. Cause silly is totally doable if it’ll make them smile.

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