Category Archives: Autism

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.

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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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.

Another amazing summer and the start to an exciting year.

For those of you who don’t know, I work at camp for children, youth and adults with Different Abilities. Belwood Lodge and Camp, is by far my most favourite place in the world. There is so much I could say about it but I won’t bore you with all of it. Just go check out the website and you can read all about it’s amazingness. I am honoured to say that Belwood has realistically changed my life immensely. Belwood helped me to confirm where and what I wanted to do with the rest of my life and it’s taught me so much. Belwood provides and amazing vacation experience for some really great people who otherwise wouldn’t get one. I have met some of my best friends at Belwood and the relationships I’ve made there are unlike any other relationships I have. I am forever thankful for the experiences camp has given me. Now, the 2013 summer season has come to an end and it was a really great summer. I’m sad that it’s over, but the rest of this year is a super exciting one!

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I’ve completely re-done our local Special Olympics swim program (using a lot of the advice you guys gave me- thanks!) and I think it’s going to rock! I’ve gathered a group of coaches who seem really interested and excited about the program which is a HUGE plus. I have a lot of faith in my program and coaches and I think it’s going to be an amazing swim season. I really think our athletes are going to love it.

I’ll also be coaching the Guelph Giants again, my super awesome Special Hockey International team. That’s super exciting. SHI is an amazing organization and I’m so thankful to be involved with it. You can read all about how I feel about SHI here.

I am continuing with my DSW studies this fall and should be done in May. This is also exciting.

All in all, it’s going to be great year.

Reflections.

It’s been just over two years since I travelled to Nicaragua. That’s nice and scary. It’s weird to think about all of the different things that have changed since then and the decisions I’ve made.

But, what I’ve been giving a lot of thought to lately is, the Blue Bird House in Nicaragua. I haven’t really shared to much about it as it was quite an overwhelming experience. Since it’s been just over two years, I’ve decided to share some more about it.

The Blue Bird House is a group home of sorts. It’s more of an institution. Visiting the Blue Bird House while I was in Nicaragua was something that was very important to me. Obviously, I’m very connected to the Special Needs community and I really wanted to see what it’s like in a less fortunate country.

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Honestly, I was worried.

I really didn’t know what to expect. I’ve read so much about orphanages and institutions  that I was really worried about what I was going to see. I was (pleasantly) surprised. Now, the conditions of the Blue Bird House were nothing compared to something you’d see in Canada, but they also were much better than the conditions I was expecting. They were extremely understaffed and their ratios were nothing like something you’d see here,  we’re talking a good 1:14 ratio including some individuals who were very high needs. These ratios can make it extremely difficult to adapt programming and attention.

I just love this guy.

I just love this guy.

The Blue Bird house supports individuals of all ages, starting as children all the way through to adulthood. The Blue Bird house supports people of all abilities. When I visited, most of the younger children were in school which is very uplifting. That’s not often something you see.

The individuals with Higher Needs had an area catered to their specific needs

The individuals with Higher Needs had an area catered to their specific needs

The staff who worked at the Blue Bird house really seemed to have a passion for what they were doing which is absolutely amazing. They really seemed to care about the people they were supporting.

The Blue Bird was very interesting. They had daily programming as well as an ARC Industries type area where they would make different items to sell in art shows or at markets. They also had a kitchen where they would bake and sell goods. The inclusion that we saw was so cool!

"ARC" like area

“ARC” like area

There were different sections to the property. A main area, including a dining area, a gym type centre for PT and a section for the individuals they support who require a high level of care. There was then a female building that had multiple beds in one section and then a large area with tables for meals and daily activities. Across the grounds there was another similar building but for males. Between these buildings there was an outside area that had playground equipment and benches. The design of the place was very forward and open which was so nice to see. There were some parts of the Blue Bird house that were really hard to see, as much as the conditions were much better than I expected, they were still rough. I strive to provide the best that I can for the people I support and I found it very difficult to be in an area were there was just so much that I wanted to do, but couldn’t.

PT area

PT area

 

A wheelchair in Nicaragua..

A wheelchair in Nicaragua..

 

A kind young man having some swing time on the grounds

A kind young man having some swing time on the grounds

I had the chance to interact with many of the individuals who lived at the Blue Bird house and man, they rocked!

This guy was hilarious.

This guy was hilarious.

Visiting the Blue Bird house was a major highlight for me and I’m so glad I got that experience.

I was also blessed with the opportunity to give the Blue Bird house a collection of new clothing protectors and provide a large amount of the people they support with Camp shirts. The group that I went with, Kn.e.c.t, also gave the Blue Bird house a monetary gift. What an awesome experience. This is a place I really want to go back and visit.

Donations

Donations

I will be posting more pictures of the Blue Bird house over on the Stories from the Sandbox Facebook Page. https://www.facebook.com/pages/Stories-from-the-Sandbox/252057948257316

Reduced and Free Apps in Celebration of Autism Awareness Month

556081_10152575970120424_1933361654_nIn celebration of Autism Awareness Month, many Special Needs App developers have reduced the prices on their apps. There are reduced prices on all different kinds of apps, communication, ABA, flashcards, social skills, sensory activities and more! Some of the developers have even completely cut the cost of their apps to $0. There are some really innovative apps that are available at an extremely low cost.

Today only (April 10th 2013, urTalker Pro, regular $99 is available completely free of charge. This is a really cool and high quality communication app. It’s available for all apple touch products (iPhone, iPod Touch and iPad/iPad mini)

You can download it here: https://itunes.apple.com/ca/app/urtalker-pro/id533018709?mt=8

In addition, to different daily deals there are all also deals and price reductions that are available for the entire month of April.

Here’s a link to a good chunk of the the apps reduced and free: http://www.smartappsforkids.com/2013/04/apps-free-and-reduced-for-autism-awareness-month.html

There are some pretty GREAT apps available!

Wretches and Jabberers. A MUST see documentary.

So, I’ve been meaning to watch Wretches and Jabberers for some time now. Finally got around to it today and I must say, I am not impressed with myself for not doing it until now! I am going to go out on a limb here are say that it is, single handedly, THE best documentary I have seen (and as many of you know, I’m a sucker for a good documentary- really the only movies I watch) as well as being THE best Special Needs movie I’ve seen (and let me tell you, I have seen a lot of those). This is a beautifully well done documentary.

Wretches and Jabberers follow Tracy and Larry (two men with Autism) and their two support workers, Harvey and Pascal, as they travel to different countries and advocate for people with Different Abilities. Tracy and Larry were both non-communicative until adulthood when they both learned to type as a form of communication. This opened amazing doors for them and for everyone else as they were now able to see the extreme intelligence and awareness that was trapped in their minds. Tracy and Larry are amazing advocates who fight for what is right. I think the best part of this documentary is that they show both sides of Autism, the ups and the downs. I think that is a very vital aspect in any documentary about any Different Ability. I truly do not have the words to explain how uplifting and view-changing this documentary is. Every single person on this planet needs to see this documentary. Take the hour and a half to watch it, it is well worth it.

When Tracy was asked the purpose of his travelling the world and advocating he responded with: “To move peoples knowledge of disability to a better place”. 

Amazing, amazing, amazing,amazing, amazing, AMAZING film. If I was able to offer you one piece of advice, it would be to watch this film. Go forth and let your mind be opened, shaped and changed. Listen to inspiring words Tracy and Larry have to offer. It’s available on iTunes to rent or to buy. I’m sure you can get it on Amazon too.

More information about the film: http://www.wretchesandjabberers.org/index.php

Have I mentioned this documentary is absolutely amazing? If not, IT IS!

“We are the perfect example of intelligence working itself out in a much different way” – Tracy Thresher <— could it get any better?!

check them out on Facebook here: http://www.facebook.com/WretchesandJabberers

listen to one of the beautiful songs from the soundtrack here: https://www.youtube.com/watch?v=8xulf4Av3zk  (if nothing I’ve said about the film has made you want to watch it yet, this song should. It’s amazing and makes such an impact. B-e-a-u-tiful song.)

And I will leave you with this image from the Wretches and Jabberers Facebook page of Tracy and Larry standing with some truly inspiring and wonderful words.

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This is a photo from the Wretches and Jabberers Facebook Page of Tracy and Larry.