Category Archives: Accessibility

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. 😉 )

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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.

The Power of Play- A local Accessible Playground

It’s been a really long time since I’ve done an Accessible Playground! Today I’m going to talk about Stait Park, a brand new accessible playground in my community! For those of you who have been here for a while, you’ll have heard all about this playground and it’s history.. for those of you who are new here, you can read about all of that here:

https://www.facebook.com/pages/Power-of-Play-Fergus/295596937215071

Anyway, the playground opened a few months ago (actually while I was at camp) and I’ve been able to spend some time there. I’m honestly so impressed with how the playground turned out. It’s amazing. So much better than I ever could’ve hoped. It’s impressive.

The amount of thought and work that went into this playground is extremely obvious.

Small slides

Small slides

Tunnel- Awesome for a quick sensory break

Tunnel- Awesome for a quick sensory break

More Braille!

More Braille!

One of those twisty spin chairs- super fun!

One of those twisty spin chairs- super fun!

Jake trying out the rope ladder

Jake trying out the rope ladder

Braille Board!

Braille Board!

The bigger part of the playground

The bigger part of the playground

This is one of my favourite features.

This is one of my favourite features.

TOTALLY accessible!

TOTALLY accessible!

Jake trying out the Pirate Ship Rocker

Jake trying out the Pirate Ship Rocker

Jake practicing his sign.

Jake practicing his sign.

Also, note the rubber ground as opposed to gravel. This stuff is super. Makes pushing wheelchairs so much easier and makes falls hurt a lot less. It’s also super bouncy.

Picture Symbol Board!

Picture Symbol Board!

Sign Language Board

Sign Language Board

This playground is totally amazing. I have some more pictures of the full park but I can’t find them right now. I’ll update this post with them once I find them! I would highly recommend checking out this playground if you’re in Centre Wellington! It’s located on the corner of Garafraxa St W and Provost St.

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

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!

Special Hockey International Tournament 2013!

I know this is a little late but; here it is!

The theme for the tournament “Yes I Can” with a video featuring some of my amazing players.

Last week I had the opportunity, actually, honour to participate in the best hockey event and one of the best Special Needs events I’ve ever had the opportunity to participate in. The Kitchener Ontario, Special Hockey International Tournament 2013! As many of you know, i’m a huge advocate for Special Hockey International (SHI), it highlights true friendships and real sportsmanship while building confidence all in an extremely supportive environment. I coach the Guelph Giants and it remains to be one of the best decisions I’ve ever made.

Each year SHI holds an international tournament and one of the teams hosts this. This year a local team, The Kitchener Ice Pirates, hosted the tournament and it was amazing. Absolutely amazing. We has sixty teams from thirty communities, almost one thousand players, playing in this tournament. Every single aspect of the tournament was well thought out and planned. The hours and hours and hours and hours of work that went into planning this tournament were very evident. It was accessible and accepting to all individuals and really showed what Special Hockey is all about. The SHI league focuses on fun and friendships and this tournament was no different. All players and fans cheered when someone scored a goal, no matter who’s team they played on. Refs set-up goals so that everyone would have the opportunity to score. Penalty shots were given just for an extra chance for someone to experience scoring a goal. Some games, the goalie even took penalty shots! The Ice Pirates did an amazing job hosting the tournament and the organizers, organized an amazing three days. I was very proud to be a part of amazing organizations like Special Hockey International and the Guelph Giants.

For information about SHI (I would highly recommend finding a team in your area): http://www.specialhockeyinternational.org

For highlights and information from Kitchener 2013: http://www.shikitchener2013.ca

And since I’m biased when it comes to my Guelph Giants: http://www.guelphgiantshockey.ca

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