Category Archives: Different Abilities

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.

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

What every Community needs.

As many of you know, I am a very big advocate for local programs. Today, I want to tell you about a local program that I am absolutely honoured to be a part of, a local program that every single community needs. I’ve spoken of this program before but not in a lot of detail. I’ve been attempting to write this post for weeks now but this program is just so amazing, I often find myself lost for words when I attempt to speak of it. This program is: Community of Hearts.

Community of Hearts (CoH) is a program founded by three pretty cool people. Susan Wahlroth (the mother to a pretty awesome young man I’ve had the pleasure of working with at Camp, Swimming, CoH etc.), Jason Dudgeon (an Educational Assistant for twelve years amongst other things) and Andrea Kretz (a Special Education teacher). These guys saw a need for more programs for individuals with disAbilities, increased wait-lists and funding cuts are making hard to give individuals with Special Needs the support they deserve and need. CoH is a not-for-profit organization based out of Guelph, Ontario. They offer three different program areas that cater to the increased needs of people with Special Needs in our community.

The three program areas they cover are; the Educational Day Program, the Social Network and Cottage Crashers.

The Educational Day Program or Life Long Learning Centre is one of the neatest parts of the organization (in my opinion). It focuses on, exactly what it says, Life Long Learning. More often than not, individuals with Special Needs graduate out of the school system and are moved into programs where they don’t continuously use and further the skills they’ve learned through High School. The Life Learning Centre allows for a continuation of learning and practical skill practice. CoH focuses on independence and provides and safe and judgment-free learning environment. Learn more about the Learning Centre here: http://communityofhearts.ca/learning-centre/

The Social Network. This aspect of the program is super cool too! CoH organizes various social events throughout the year for individuals with Special Needs in our community, to attend. CoH organizes some pretty sweet dances that are definitely a highlight of the year. I think my personal, all-time favourite CoH dance was the 2013 Valentines dance but the 2013 Summer Rush dance takes a close second. Learn more about the Social Network here: http://communityofhearts.ca/social-network/

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Cottage Crashers, the summer vacation program. The Day Program runs the same schedule as the local School Board so, the summer months are still summer vacation! CoH offers a really neat summer vacation called Cottage Crashers. This is the program that I am least familiar with as I am at camp all summer but, I’ve heard nothing but great things about the program. The Cottage Crashers program was recently featured in Cottage Life magazine. The focus of the program is Life Skills and independence. The participants are actively involved in planning and implementing meals and activities. This is such an amazing way to spend some time during the summer. Learn more about Cottage Crashers here: http://communityofhearts.ca/cottage-crashers/

I am genuinely so honoured and proud to be a part of this amazing program. Every community needs a program like this. (I blog for CoH over on their website too: http://communityofhearts.ca/coh-summer-rush-dance-2013/

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Head over to their Facebook Page and see what amazing things they’re up to, today!

https://www.facebook.com/communityof.hearts?ref=ts&fref=ts

Dolls representing people with Down syndrome

Dolls for people with Down syndrome, or “Dolls for Downs” is a pretty cool organization that makes dolls that resemble the features of people with Down syndrome. This movement was started by the mother of a girl, Hannah, who has Down syndrome. She wanted a doll that looked like her. These dolls can be very empowering for people with Down syndrome. There are different dolls available for order, featuring different, hair, skin and eye colour as well as different genders. There is an option when ordering the doll to have the doll feature a scar on the chest, to resemble the scar that many individuals with Down syndrome have after receiving heart surgery at a young age.  There are also different accessories available for purchase such as; glasses, hearing aids and eventually AFO’s.

I am a little partial to one specific doll, Aziza. Aziza was a little girl with Down syndrome from Toronto, ON who I learned about through her mom’s blog. I’d been following her story for a few months because she was adopted by her family and I am very interested in adopting those with Down syndrome. Sadly, Earlier this year Aziza passed away. Dolls for Downs created a doll in her honour featuring her appearance. I think this is an amazing and beautiful way to commemorate Aziza and her journey.

There is some backlash in regards to these dolls, there are some people who believe that these dolls portray a negative stereotype; all people with Down syndrome look the same and all have the same features. Personally, I LOVE these dolls. I think that they show people with differences that not every doll needs to be “typical” and that anybody is “doll-worthy”. Yes, the dolls highlight the main physical features of people with down syndrome. But, I think these dolls show to the world that it is perfectly okay to have Down syndrome. Different is not less.

Read a Toronto Star article about Dolls for Downs: http://www.thestar.com/life/parent/2013/04/16/dolls_with_down_syndrome_prove_

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Read about Aziza: http://mylittlewarriorprincess.blogspot.ca

Visit the Dolls for Downs website: http://www.dollsfordowns.org/index.html

Picture of the dolls from: http://www.dollsfordowns.org/index.html