What’s been going on.

Hey there crew.

I haven’t been on here in a while, sorry about that. Things have been kind of totally insane lately. I saw that I have lots of messages in my inbox, I’ll get back to those ASAP. Sorry for the delay.

I guess the most fun news is that I finally finished my tattoo!

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Here’s a fun little explanation of it:

The Puzzle Piece: the puzzle piece represents Autism. As many of you know, Autism is a huge part of my life. I’ve pretty much dedicated my life to learning about Autism and to the many people with Autism who are important to me.

Bardet- Beidel Symbol: the little symbol in the middle of the puzzle piece represents Bardet- Beidel Syndrome (BBS). BBS is another huge part of my life. I’m sure you’ve all heard me talk about Liam, well Liam has BBS so does his sister, Kaitlyn. BBS is something I’ve loved learning about since Liam and Kaitlyn became part of my life and learning about it is something that is extremely important to me. As are Kaitlyn and Liam.

The words: “Different, not less” is a sentence that has been very important to me for many years now. Through my involvement in the Special Needs community I have learned that different truly isn’t less. It’s something I hold very dear to my heart.

The Braille: above the puzzle piece is the word ‘Different,’ in Braille. I think that this part is truly one of the most special parts of my tattoo, it represents a couple of things. Part of BBS is vision loss, by the time a person with BBS reaches the age of about 15 they are legally blind. So of course, Braille will become an important part of their life as they grow. Secondly, the Braille represents a memory to Brittany Garton, a very important person To me who passed away this summer. Brittany was blind and taught me more about being blind and living with an intellectual disAbility than I ever thought was possible.

Not less: the ‘not less’ portion of the writing is a mash- up of some of the handwriting of some of the different kids/adults I support who have Special Needs.

So that’s the tattoo. I actually plan on adding a little more to it over the next couple of weeks and then it’ll actually be completely finished.

I’m learning Braille right now so that’s been fun. It’s hard but really interesting.

Attention Deficit Disorder: My Life, yo.

As many of you know I have a combination of Inattentive & Over Focused Attention Deficit Disorder (ADD). I quite surprisingly haven’t written much about it on the actual blog page but I have on our Stories from the Sandbox Facebook page. I’ve going to share an explanation of it here. This was posted on the FB page in 2013. I’m posting it here mostly because I was trying to find it today and couldn’t and then I realized it was on Facebook, not the blog. By posting it here, I can access it quickly. So here we go:

I’m going to talk mostly about how ADD affects me and a little bit about my combination and what it means. There are lots of great places to learn about ADD/ADHD and how it affects people. Here are a few if you’re looking for something less specific to what I experience:

Psych Central

Understood: For Learning & Attention Issues

Help Guide

My type of ADD is referred to as Inattentive and Over- Focused ADD. Inattentive & Over- Focused are actually two different kinds of ADD but I have a combination of both. With it being ADD as opposed to ADHD, I don’t experience the Hyperactivity that is often seen.

Some of the most prominent ‘symptoms’ of Inattentive ADD I experience are; getting distracted easily, losing focus extremely quickly on activities or tasks that don’t interest me, overlooking important details, going from task to task without really accomplishing anything on said tasks, being extremely disorganized (for me this anything from getting things ready to go somewhere simple to my desk being an absolute disaster), making careless mistakes on school-work (especially after finishing the ‘hard’ part of assignment- I tend to lose focus very quickly after that), ‘day dreaming’ (I don’t really day dream but I zone out very quickly) and a huge inability to focus on conversations.

I don’t experience as many ‘symptoms’ with the Over- Focused ADD as I do with the Inattentive but there are a few that are very prominent for me. Here they are; struggles with shifting attention, oftentimes gets stuck in loops that focus on negative thoughts or behaviour, difficulty being obsessive and inflexible and excessive worrying.

I think the main thing I want to talk about is the way my thoughts work because of this. I keep everything logged in my head as ‘train tracks’. This is something I’ve learned to do through life. It’s pretty much the only way I can keep my thoughts clear and focused. I know it might sound silly but now that I’ve got this ‘system’ figured out, it’s much easier to complete and focus on separate tasks or conversations. I’m going to try and explain it all in illustrations to make it easier to understand.

This is what I suspect a typical thought process/head space looks like. Different thoughts/ideas/plans etc. all floating nicely together in a space and meshing with each other to help create new thoughts.

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This is how I picture my process/head space. Each individual thought/idea/plan etc. is separated and in their own section of the ‘railroad’ track. They don’t touch each other and one thought comes to the forefront and once and is focused on.

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This is what my process/head space looked like previous to my railroad track implementation. It was very very chaotic with thoughts/ideas/plans etc. bouncing all over the place and interacting way too much with the others, almost aggressively. This would start with an inability to focus and end in shut- down. It would become too much. It was extremely difficult to focus on one thought when the others would bounce right through it.

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I started using this ‘railroad’ system when I was in grade 8 or 9 and it has definitely helped me in many ways. This system really helps with focus. I am super bad at focusing during conversations, especially when they involve more than one person so this really helps me stay on track with that.

This system works great but it’s also quite draining. My brain isn’t wired to keep my thoughts in a railroad track so oftentimes when I’ve had to be hyperfocused on ensuring the ‘tracks’ stay where they need to be I end up being quite drained when I don’t have to focus on it so much. That being said, I can’t always keep them sorted. This is what happens when I start to lose that control.

All good one day in Alix’s railway land.

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Then one thought can’t stay in it’s section. It gets loose and bounces into another section. This is very easily triggered. If I’m not on it at all times, a thought bouncing can literally happen from someone I recognize walking by.

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This triggers another thought to get loose and bounce into another section. Once they go into another section, the thoughts explode and start to go all over the place. I’m generally frantically trying to keep everything in line at this point.

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Eventually the thoughts all just go everywhere and they’ve all exploded. Leaving behind broken sections and a chaotic mess. This can take hours/days to get back to normal, usually leaving me in a very panicked/extremely unfocused state.

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So, as silly as it may seem, I have found this system to work really well for me. I would rather be a bit tired but know where my thoughts are at as opposed to it being chaotic. Always. I discovered this method through lots and lots of trial and error.

I have found that keeping my focus in order tends to help make the other ‘symptoms’ at bay as most of what I experience are related to focus.

Anyway, That’s my self-sharing for the day. I’ll post more about the other stuff later over the next few weeks.

(Blog people: I’ll share the rest of those on here later this week.. I’ll space them out to not overload your inboxes. 😉 )

Vaccines. I know. I said I’d never write about this.

The following post is likely going to majorly drop my numbers but I’ve stayed away from this topic for years and I can’t stay away from it anymore.

You’ve probably already guessed what it’s about.

Vaccines.

I cannot control the decisions you make about your life and about the lives of your children, I’m aware of that. But it’s something that needs to be discussed. Too many children are missing out on important, life saving, vaccinations. It’s not okay. I will of course be focusing on the Autism and vaccine correlation as its my area of interest. This is becoming an issue in my province. Kids are getting the measles. This is a huge issue.

People have allowed themselves to be absolutely brainwashed by the Jenny McCarthy movement. This is something that I honestly can’t even comprehend. How is the Autism Vaccine issue even a thing still?

ALL STUDIES THAT INITIALLY ‘PROVED’ THAT VACCINES CAUSE AUTISM HAVE BEEN DISPROVED AND WERE FAKE AND THEY WERE THROWN AWAY.

Why is this still an issue when every single piece of research related to this has been disproved? Why in gods name are we risking the lives of children? What the fuck kind of message are we sending to people with Autism and their families?

That’s what really grinds my gears. Aside from the obvious huge health issue that’s associated with not vaccinating, the message anti-vaxxers are sending to our community is hurtful and distasteful. Let’s say for a minute that vaccines do cause Autism (which they don’t. We know that. This is hypothetical). You would really rather your child die than consider the possibility of them having an Autism Spectrum Disorder?! Even worse, we KNOW that vaccines do not cause Autism yet we’re still not vaccinating kids just on the off chance that they might still be able to ‘catch’ Autism from it. That’s disgusting. The message that is being sent to our community is that a child dead from the measles (or some other preventable with vaccines disease) is better than a child with Autism. That’s beyond hurtful.

Now, I see both sides of it. Don’t get me wrong pro-vaxxers, I’m still one of you. But I am able to see and understand why some parents still hold onto the vaccine theory. An Autism diagnosis can be hard to hear and you want to blame it on something. To those parents: Autism is not your fault. Autism has no cause. You didn’t give it to your child. You did the right thing by vaccinating them. Your child with Autism is a little different, sure. But your child is beautiful and smart and amazing and perfect in his or her own way. Please, please, please remember these things and vaccinate your other kids and urge others to vaccinate theirs. There are lives at risk.

People keep talking about the ‘Autism Epidemic’. I won’t get started on that because if I do, this post will never end. But I will say one quick thing about it. Autism is not a disease. There cannot be an ‘Autism Epidemic’. Autism will never be a disease. There will never be an ‘Autism Epidemic’. But there absolutely can be a measles epidemic. It’s happening now. And that’s a hell of a lot scarier than Autism.

Please. Vaccinate your children.

Autism Awareness Month 2014

April is Autism Awareness Month. 

For weeks now I’ve been trying to come up with the right words to really honour this month but, I haven’t been able to find them because Autism means so many things to me. 

My Autism is a nine-year-old boy who loves trains, cars, Dr. Seuss and playing games. A twelve-year-old girl who loves to jump and play with bubbles. An eleven-year-old boy who loves to tell jokes and make people laugh. 

When we stop focusing so much on the “Autism” aspect we see a person. A person with talents, skills and abilities. A person who isn’t incapable but very capable in their own ways. A person with dreams and wants and needs. Instead of focusing on what they “can’t” do, we need to focus on what they can do and empower that.

To me, Autism isn’t just increasing numbers and funding cuts (even though I talk about that a lot). It’s not what people can’t do. It’s what they can do. Today we celebrate accomplishments and talk about Autism in a positive light. Which is something we should always do.

Happy Autism Awareness/Acceptance/Whatever you want to call it month.

 

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Things I’ve Learned…

Here are ten things I’ve learned this year through running a Special Olympics Swim Team:

1. Simon Says is easily the funniest game on the face of the planet.

“Simon Says: look as cheerful as an awesome possum!”

2. Camp songs are really fun in the pool (and a super good way to kill time if you’re waiting for someone).

3. Behaviours are more difficult to stop in a pool and pool decks are really hard (but, the warm pool is generally a good calming tool).

4. Running on the deck is going to happen.

5. Asking the Athletes to “cover their ears if you can hear me” is mostly just confusing for everyone. Stick with touching your head.

6. What Time Is It Mister Wolf, is much more confusing than you’d think.

“What time is it Mister Wolf”

“Freeze, you’re the wolf so they ask you”

“Why am I even a wolf. Wolves don’t swim. I’m gunna be a SHARK”

7. Dedicated volunteers are hard to come by but, when you do find them, they are the best people on earth.

8. Swim meets are pure chaos but seeing someone get their ribbon at the end makes every second of craziness worth it.

9. I am nothing if not adaptable.

10. Getting all of the Athletes to sit on the pool deck with their feet in the water while their coaches stand a few feet away in the pool and having the Athletes splash their coaches is: a) hilarious and b) a really good way to practice kicking.

And an extra special #11:

11. I have the best Athletes/Caregivers and Coaches ever.

I’ve had the greatest time taking over my local Special Olympics Swim Team this season and it has been a blast. We’ve definitely had our rough patches but, I’ve learned from those and I’m excited to have an even better program in place for next year!

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Another rant about funding cuts…

Ugh.

I know that funding cuts are basically all I write about now but, they really frustrate me.

So, here’s another rant about funding cuts:

This week yet another story about how the lack of services and funding is causing actual harm to another person with a developmental disAbility. Awesome. As if this is still happening.

You can read that HERE

Parents are still being forced to put their children in situations like the one that Nicholas is in. They don’t have the support or funding to cope. After reading the article and learning about Nicholas, we are able to see that he is fairly “high needs” (requires quite a bit of support). We also learn that, like many adults with a Developmental DisAbility, he is given approximately $4000 a year to help pay for things like respite and community activities. Sounds like a lot but when you’re paying for respite, that money gets used up pretty quickly.

(The next part of my rant I posted on Facebook this morning)

Often times wait-lists (to get into a group home) are completely disregarded. There are literally hundreds of people with special needs in Guelph- Wellington who have been on wait-lists for years and years and years because funding randomly gets cut or an emergency situation happens where someone else is in more desperate need for a bed and they get pushed back again. It really ends in a lack of funding. There are so many stories identical to this one and a lot of it is a complete lack of support and funding. After SSAH funding got switched to Passport for everyone over 18, hundreds and hundreds of people lost all of their funding and were back on a (7 year) wait-list. It’s very hard to pay out of pocket for respite, especially for someone who is high needs. That can cost an upwards of $40-$50 an hour. Yes, there are obviously non-for-profit organizations that will provide respite for much cheaper but, again with the long wait-lists. Lack of funding means lack of respite for caregivers means quicker burn-out resulting in situations like the above. Lots of parents don’t even consider looking into group home living while their child is still young. They don’t know that they should and if the proper information was given out and supports put in place for those families then things might be different. But, they can’t do it all alone. They need the support that isn’t often easily available. It’s hard too because kids can change overnight. Kids you never thought would need immediate support as an adult may end up needing it. Great example: JM (like my JM who came to camp and stuff). Three years ago, never would’ve even considered her needing the support she requires now. Things were different when someone like Nicholas was a kid. Everything in this system changes constantly. There’s also the possibility of a child reaching adulthood and then not being bumped to “their” spot on an adult wait-list because of needs changing or bad timing. It’s all a guessing game.

So, if we could provide parents with the proper support and tools to learn about these things early on, make the system more accessible and stop randomly cutting funding then we would be in much better shape.

Autism Speaks? Part Two.

As many of you know, I try to stay away from the more controversial topics in the Special Needs world on this blog. But, the Autism Speaks controversy is one that really frustrates me and one that I need to talk about. 

Just over a year ago, I wrote one of my most popular posts: “Autism Speaks?”, this was just after Autism Speaks (US) released a video calling out Government Officials about making a better plan for the Autism Community. In theory, a great idea. A necessary idea. But, the way Autism Speaks approached it was appalling. I won’t get into all of that again but, feel free to read the original post. 

On November 11th, 2013 Suzanne Wright, one of the founders of Autism Speaks, released a statement. A statement that has had most of the Autism community in an uproar. For some very good reasons. Suzanne demeans Autism families. She essentially says that a life with a child with Autism is not really a life. 

 

“These families are not living.”

 

She actually says that. Referring to families of children with Autism, she says that. Who does that? The statement is hurtful and demeaning. As I’ve mentioned so many times before, Autism Speaks is taking the Autism Acceptance movement and pushing it ten steps back. People in the typical community see statements like this one and it scares them. Especially when it is released by THE biggest and most influential Autism organization in North America. People begin to pity the Autism community. Parents fear an Autism diagnosis. Integration is becoming more difficult. Autism Speaks should be protecting individuals with an Autism Spectrum Disorder, not making others scared of them. That’s ludicrous. 

Don’t get me wrong, I understand why they are calling for an “Action Plan”. I understand that they want more support from the Government. We need more support from the Government. Yes, Autism families need more funding. Absolutely. But, degrading families and people with Autism in the process is not the way to go. It’s hurtful. This statement has been a final straw for many Autism Speaks supporters. There has been an outcry about the way they support for years. People have tried and tried again to help them understand the hurt they are causing but, it doesn’t seem to stick. 

There are parts of Autism Speaks that I really do enjoy. At least here in Canada. Since I am/have been involved with Autism Speaks, I will say that the local events I’ve attended have been great. They been accepting and adaptable and all-around great. Our local chapter is awesome. But, I have a hard time associating with an organization that so loudly demeans those with Autism. It’s not right. 

We need to focus on acceptance. We will get nowhere if we don’t move forward. As opposed to taking money and spending on finding a “cure”, provide families who can’t afford support and therapies, with support and therapies. Research further into those therapies like IBI and ABA that we know work. Try and find new ones. Put less focus on scaring the hell out of others and more focus on helping the families in our close-knit community who need it. 

See the ability.

Here’s a collection of my favourite blog posts about this:

http://www.blogher.com/yes-autism-speaks-sucks-what-now

http://reinventingmommy.blogspot.ca/2013/11/this-is-not-our-autism.html

http://www.mostlytruestuff.com/2013/11/autism-speaks-speak-son.html

http://specialneedsoc.com/2013/11/13/why-i-wont-be-at-the-autism-speaks-walk-this-saturday/

Mr. John Elder Robison recently resigned from his roles at Autism Speaks.. read about that here:

http://jerobison.blogspot.ca/2013/11/i-resign-my-roles-at-autism-speaks.html