Behind starburst eyes

How to guides for daily living

It might seem obvious to many how to do every day living activities. For example, the steps needed prior to cooking a meal such as washing our hands, getting all the ingredients ready or ensuring there is enough time for the recipe in question. But at one point when we were children, those steps weren’t obvious. And even for some that are older, those steps may still not be readily apparent.

There have been many recent studies showing a direct correlation between competency with daily living skills and overall happiness. Which really only makes sense. If you don’t have the skills to navigate the small day to day stuff, than you’re going to be upset and frustrated more than not. No one would rate their life a happy one overall if each day is filled with stress, anxiety and a lack of how to get their basic needs met.

Which is how the chart below (and several others) were thought of, and subsequently taped up around our house. So far I’ve seen a great improvement in my eldest’s sense of pride with himself as he sets out to do a task and successfully completes it without having to ask anyone for help. Yes, he may look at the charts I’ve posted, but in the end he did the activity on his own, and you can see the sense of accomplishment this gives him.

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Stay where you’re at, and I’ll comes where your to

Years ago when I first heard “stay where you’re at, and I’ll comes where your to” it took me a minute to get it. I haven’t heard it in awhile, but it’s been stuck in my head lately. What if we all did that? What if we all just met those in our lives exactly where they are (mentally, and emotionally) without exception, without reserve or conditions? So often without meaning to do so, we put conditions upon our acceptance of others (I’m NOT talking about accepting abuse, or anything of that sort.) But what if instead of thinking of how the people in our lives should do x, y, or z, why not just accept that they aren’t doing said things and accept them as is? Why is it so hard for us as a society to accept one another as is?

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I recently went through an unexpected neurological reaction to a medication. My husband was my lifeline during it, he just kept accepting me. He kept coming to where I was and doing his best to accept the whirlwind of horror that was my mind during that time. And I know there are lots of partners that would do that, but there are also a lot that wouldn’t. His ability to accept people where their at is actually part of why I fell in love with him to begin with. I watched him with Mr.C, I watched how he would meet him where he was at with so many different things and while some of them he would slowly lead him towards the growth that needed to happen, he’d meet him first and walk with him during it. I watched not just his complete acceptance of my nieces, (okay fine I’ll share them, “our nieces”.) but his unhesitating meeting them where they were, as they were. I watched how happy Joy was with him because of this. And I know how much I needed it from him during my reaction.

But I don’t think I needed it from him JUST then, I think we all need it, always. We need to know that we’re not just accepted, but embraced as we are, for who we are. That we matter enough, and have value as the human beings we are, without being changed, without being altered. AS IS.

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Steps to repair my incisional hernia:

Step 1 : Actually GO to Shouldice Hospital for assessment and book a surgery date. DONE!

Step 2: Take what they say seriously and learn how to implement the keto diet they want me to use to lose the *gulp* 51 pounds they say I need to lose prior to my surgery date. STARTED!

Step 3: Design a workout routine based on the doctor’s recommendations to compliment the keto diet for optimal health and weight loss. UP NEXT!

I am of course absolutely terrified of having the surgery, but I know that I will be able to do this. In part because I have an awesome family and great friends. Not only are they supportive, but they’re very intelligent and well-versed in many areas. Plus I’m not shy to ask they share their knowledge with me and so they send me epic links to sites filled with yummy keto recipes, and awesome work-out ideas.

Funny part of the exam:
“Um, your blood pressure is REALLY high, is that normal for you?”
I glance at the reading: 174/119
“Nope, but I’m freaking out on the inside about the idea of surgery”
I’m instructed to focus on something within the room and take some deep breathes. We re-do my blood pressure, it drops drastically. The nurse sighs with relief and writes the second reading down lol.

 

 

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Why we need to talk about their diagnosis/s

I don’t want him to feel different is an amazing article that clearly shows many of the different reasons why I am so strongly against NOT talking to my children about their diagnosis/s. By being open about them I feel it allows them a safe space to talk about it, and about anything to do with it. I don’t want them googling instead, that is a big problem to me due to all the misinformation out there. I don’t claim to know everything about their diagnosis/s, but you can bet your last dollar if I don’t know it, I know how to access reliable information as opposed to craptastic fad “fixes”.

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The Mythical “Everything”

I started a contract position with a local company 3 weeks ago. I’ve been struggling since I started, in small part due to the work itself, but mostly due to trying to find the time in the day to accomplish “the everything” It’s right before Yule so of course I’m already in “go overboard” mode, add in  spending 8-9 hours each day at work right now and it’s a recipe for disaster.

Logically I knew that, and I tried to be gentle with myself. I would say things to my husband or mom such as “it’s okay if I don’t get everything done” or “I am aware that no one can do the everything and I won’t make myself sick trying” Only I was lying to them and myself every time I said it.

A fellow homeschooling mom tried to gently remind me I needed to give myself Grace as well. That I have an amazing son (she only knows my eldest boy) and that I need to be kind to myself as well.

Yet despite all that, I went home early from work yesterday because a migraine hit that I couldn’t shake no matter what I did. I’m not surprised, really I ‘m just surprised it waited as long as it did to hit. I typically get them from stress and spreading myself too thin. A way for my body to remind me I need to slow down and breathe sometimes too.

So I have spent this morning cuddling with the wee ones while we watch pbs kids, because sitting with them and being truly present with them is also part of the everything.

Now that doesn’t mean I won’t try to attempt to accomplish the mythical everything, cause honestly I know I still will, it’s part of who I am to push myself as far as I can and do as much as possible each and every single day. BUT I will try and balance personal care within my day…a little…sometimes…maybe…

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Another autistic youth killed by a parent. And, No, Channel 11 Atlanta, it’s not a “mercy killing”

Left Brain Right Brain

Dustin Hicks was an autistic youth. A teen. Someone who faced very significant challenges and needed a great deal of support. But someone who needed to be respected and valued as a person.

Dustin Hicks was murdered by his mother. News stories are reporting that he was shot in the head. The exact motives are at present unclear since the mother killed herself shortly afterwards.

A TV station in Atlanta reports the story as Dawsonville mother shoots disabled son, self in possible mercy killing.

No. There is no mercy in murder. Just because someone is disabled doesn’t mean someone can justify or downplay murder.

No. Just no.

Our children are our responsibility, not our property. We do not get to kill our children and downplay it because they are disabled and call it mercy.

I can’t go on.


By Matt Carey

note: I corrected a mispelling in the…

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It’s Amazing You’re Here At All

Autistic Academic

I tell my students I’m autistic.

Usually, I remember to mention it during the first-day introductions, but even when I forget, they tend to figure it out by the third class, if they’re listening to me at all.  The use of the first person plural when I talk about autistic writers tends to give it away.

I mentioned my autism to one of my students last week, in a conversation about how I got into disability studies.  Student’s reaction: “Wow, so it’s amazing you’re here at all.”

I thought, “Yes, but not for the reasons you think.”

Being autistic, in and of itself, doesn’t make it “amazing” that I’m teaching.  That’s unremarkable, really.   The professoriate has always had more than its fair share of autistic teachers, I’m guessing, and there would probably be a fair number more of us if alternate communication means and assorted other accommodations were easier…

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TDSB School Asked My Austic Student Not to Attend Graduation

My heart aches for the lack of accommodations given to this child. To be blunt this type of attitude and discrimination is a big part of why I choose to homeschool. Children should feel that they are an important and included part of their environment (be it a classroom, a dance class, or whatever it is)

Heart Learning Centre & CampZone

14704200941_0002188237_zI woke up this morning to the word ‘freedom’ in my mind. How wonderful I thought this is a day to project freedom. I was asked by Priya’s dad (not her real name) if I could take care of her this morning and drop her to school at 10:30am rather than regular time at 8:40am. Priya my autistic student that attends my after school program and is absolutely beautiful. Hmmm- That’s a strange request I thought. I was happy to care for her however confused about why the school would ask  her to come late. He texted me that the teacher asked the JK students to come at 10:30 because the Senior kindergarten students were having graduation. So this morning I did have to pass by the school at 8:40am and noticed ALL the kids were on their way to school – as usual. The parents, students and teachers were dressed up, handing…

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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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Mother’s Day

The Belle Jar

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This post is for my mother. This is in recognition of the countless hours of unpaid labour she did and continues to do for my sisters and I. This post is an acknowledgement of the fact that I have taken her for granted; she’s given her time and energy to me so freely and genrously that it wasn’t until I had my own child that I understood how much this must have personally cost her. She is someone whose love and support I can rely on even when she disagrees with the choices I make.

This post is for all the people who work in childcare and are underpaid because what they do is undervalued by our society. This is for the folks – mostly women – who are often offered minimum wage or less to nurture, engage, educate and love a child.

This post is for all the people who are helping me…

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