One week to Drop!

Training is tomorrow!! We become super heroes NEXT Thursday and rappel down 26 stories to raise money for Easter Seals!

They have been such a great help for Patrick over the years and we need this program to be able to stay around to help ALL families with children with disabilities!!

This means a lot to me!

Please don’t hesitate!! You can donate up till next Thurs!  PLEASE help me reach my goal so I can participate next week!  Any amount will help!  Donate online by clicking the link below or writing a cheque made out to Easter Seals Ontario.  Cash and email money transfer is acceptable as well.  Email me for details.

CLICK HERE TO DONATE!

Thank you so much!

Come on out to One London Place next Thursday and watch all the Super Heroes do their part for Easter Seals!!

Hugs my friends!

How did you start your day? (updated)

First video blog! 🙂 They will get better I promise! 🙂

London Drop Zone 2012Click the ^above^ picture to watch this blog post!

Have you ever thought about what exactly you do in a day?

Have you ever thought about how easy your life is?   Easy you say? My life easy?

Take a moment and think about what you did this morning when you got up and started your day.

You got yourself out of bed – you went to the washroom – you brushed your teeth – you had a shower – you got dressed – you made coffee/tea – maybe you had time to read the paper or check emails before jumping into your car and heading to work, the gym, shopping or where ever.

Does any of this sound familiar at all? I’m positive some of it applies to many.

Now…imagine this…

You’re lying in bed awake, ready to get up.  But wait…you can’t!  You have to wait for someone to come help you get out of bed.

Perhaps you’d call out to someone to come help you…but wait…you’re not able to speak.  Maybe you use an augmentative communication device to speak for you, you might be able to use it to help you get someone.

Now…someone has arrived to help you get up.  Maybe they even need to help you get dressed.  Perhaps you need help using the washroom.  If you need help for these things, you’re going to need help in the shower as well, right?

What if you couldn’t eat anymore?  What if you could, but it wasn’t recommended you do, due to health risks it would cause if you did.  Imagine being fed through a tube in your nose or your stomach.  Not being able to taste food anymore!

Those a just a few thoughts for you to think about at the moment.  Stop and really think about it.  What if that was you?  How would you feel?

Now let’s see, based on the above questions, let’s surmise that you aren’t able to walk, so you would likely be in a wheelchair.  (Let’s make a little side note here that there are many types of disabilities and not all of them require use of a wheelchair or other assistive devices).  Let’s also assume that because you can’t eat orally, you have a g-tube with which you get your nutrition.

Did you walk to your car or to work or the gym today?   There are literally thousands of people who weren’t able to.  Have you ever thought about getting around in a wheelchair?   Think about some of the places you go and take a visual as to how accessible they are?  Are there ramps?  Automatic buttons for the doors?  That are in reach?  Are the doorways wide enough for your wheelchair?  Are the things you use everyday within reach for you?

Seems like a lot to think about so far doesn’t it?

On the other side of the coin so to speak, what if you were the one who was helping that person everyday?   Circumstances are different for everyone and every situation it’s true, but suppose you had to get someone else ready to for their day before you could get started with yours.  Oh wait, this is how you start your day.

What if you were the parent and this was your child?  There are thousands of families that do this everyday!  This is their life!

How would you cope/handle things?  Do you think you could?   Without complaining?

Imagine all the things you will have had to learn and the all the things you’ll continue to learn.  All the Doctors, therapists, nurses, teachers, suppliers of equipment and things your child needs.  All these people remember are multiples!! In other words, there are a number of doctors/specialists, there could be anywhere from 1-5 therapists, multiple nurses and teachers and a limited number of suppliers for your equipment and supplies needed.

Think about work.  Is your boss wonderful and patient enough to let you answer those calls from the school where you might be needed?  How about all the doctor’s appointments and tests/procedures your child may have?  What about the hospital stays?  Staying 24/7 at the hospital with your child because no one knows your child like you do!  No one there would understand your child’s communication either.  Who is the best advocate for your child?  YOU!!

watch the video for the rest….

Here is the link for Easter Seals Drop Zone 2013 🙂

http://my.e2rm.com/personalPage.aspx?registrationID=1810209&registrantPreview=1

Thank you so much!!

Disney Planning Cont’d

Well our numbers have decreased, but we are still going!  Flights are booked and the rest will be finalized next week, just waiting for confirmation invoices and info.

I must say I’m a little impressed with some of the information that is available on the Disney site regarding accessibility and information for multiple disability types.  I will also say, it involves ALOT of clicking to go through everything!  I’ve printed out over 60 pages of information to go over rather than having to click around and find my way back to it all.  Here are some of the pages on their site:

More clicking throughout these pages to get more detailed information is required, but these pages are a place to start.  They have printable guides for each of the parks, which when printed out, is quite small in font size.

You will read quite a bit about how you should plan ahead as much as possible, and I completely agree.  For myself, I like to be as prepared as possible, know exactly what we’re getting into and how to best organize things to make things as relaxing and enjoyable as possible for everyone.

We are fortunate enough to have both respite workers coming with us to help out.  It’s amazing how much arranging and planning you have to think about to pull a trip like this off.  I’ve been doing the bulk of it thus far with laying the ground work and making sure we will be in accomodations that will work for everyone, especially Patrick.  Mom has appreciated this very much.  It’s a little more stressful, for me anyway, having someone else do it when they don’t ‘live it’ like you do every day.  I’m sure many will agree, when it comes to things like this, you feel better knowing that the necessary things are in place to ensure a good time when you have had input.

We have a great travel agent!  Heather has contacts and has worked with the people who arrange the Sunshine Trips for the kids.  She has used those contacts to help plan our trip as well.

I would suggest, as would Heather, to make sure you double check your booking and explanations of what type of accommodations you need and are getting.  We have found Disney really needs to update their website and look at some of their terminology.  They also need to better train their agents.  Twice Heather has called to double check bookings and been given mis-information.  We had to change our accommodations this morning as the accessible room we were given at one resort was not what they told her yesterday and it didn’t work for us.  We are thankful she has been diligent and making sure everything we need is in place for us.

Medical insurance is another thing we needed to look at.  Patrick had done so well for about 6 years, but in the past year, his health has not improved back to what he was previously.  For those who don’t have coverage with other companys or through work, there are some fairly strict guidelines to go with the coverage.  It is wise to check into exactly what you are/will be covered for to make sure there are no surprises.  One of the girls has medical insurance through her work, but still needed to have the coverage added for this trip.  Basically for us, as long as Patrick doesn’t end up in the hospital or have any change in medication between now and the trip, AND it isn’t for the same reason’s he was just in for, he will be covered.  Keep your fingers crossed, because if there were to be issues, they would likely be for the same issues.  Send a few prayers up for him 🙂

Heather has also looked into extra luggage for us for some of the extra stuff needed to bring for Patrick, and also found out I’m able to bring the Chopper with us as long as it’s in the checked luggage.  With Patrick’s medication needing to be refridgerated and such, they are supplying a small fridge for us at no cost because it’s for medical needs.  They have arranged accessible transporation for us from the airport right to our resort and back again when we leave.

We are working on some other details while waiting for the final confirmation numbers, but things are moving along fairly well at this point.  Aside from the ‘hiccup’ with the accommodation (which has been sorted) and the particulars of the medical insurance (didn’t surprise me), we are quite happy with things so far.

Our travel time falls during a week that offers a free Dining Meal Plan, which is great, and as recommended MANY times about reserving your sit down meal as far ahead as possible as they fill up quickly, Heather will do that for us next week.

Next week is passport photos for Patrick and I, and going through the information I found and printed to see what attractions and rides are accessible, which require transfers and which one’s Patrick would be more interested in seeing.  We already know he’s very interested in Animal Kingdom, so that’s a given. 🙂

One more note before signing off for the night.  My sister’s SIL (sister-in-law), gave me a site to take a look at also.  They also have some great information and more photos of rooms and attractions and accessibility (Disney has very few accessible room photos, and I’ve not seen any accessible ride/attraction photos at all so far).   allears.net

It just so happens, when I shared this site with our travel agent, her contact with Sunshine Foundation, gave her the same site 🙂

Feel free to email any comments, suggestions/feedback.  I’ll be happy to reply.

Till next time…. 🙂

 

 

 

 

 

 

Wish Granting Organizations/Programs – What do you know?

The Funding Process – What you should know!

Technically, I should have started writing about this last summer when I first started doing this.  It’s been a year now, and with all I have learned, especially the past few months, I felt this should be shared; so anyone else going through the same processes could possibly have that extra information before-hand and know what will BE expected and what TO expect.

I am speaking about getting an accessible vehicle and going through the processes of applying for the grants that are available to help.  Who would have thought this would take so much and give you stress?  This is supposed to help make things easier, isn’t it?

I am in the middle of all this, so to speak.  I have approvals from 2 of the 3 main grants offered.  What I have learned in, more so in the past month, is unreal!  I thank a couple of gentlemen, Renaud from Motion Specialties and Glen from Goldline Mobility and Conversions, for being so great and forth-coming with information about these processes, that no one else seems to tell you.  I’ve learned a lot from these guys in the past month or so.  Thank you!

Let me begin by giving the top 3 main grants available that one can apply to for an accessible vehicle.

Easter Seals – up to a maximum $3000 – strictly for modification.  Also note, individuals are only entitled to $3000 a year through Easter Seals to cover whatever needs/equipment there might be.  If anything totals more than that maximum, other funding sources will need to be looked at.

President’s Choice Children’s Charity – up to a maximum of $20,000 – PC is a little more lenient in that once modifications are paid for, any remaining of that can be put towards the purchase of the vehicle.

Let me interject a very important point here before I carry on:  Modifications come FIRST!!

March of Dimes – up to a maximum of $15,000 – again, strictly for modifications.  (March of Dimes has the HVMP – Home/Vehicle Modification Program.  The amounts are the same for both, $15,000 for Home modifications and $15,000 for Vehicle modifications)

To apply for any of these, you will be asked if you have applied to any other funding that is available to you.  If you haven’t, you must, for your application to be considered.

Follow along as I update you and take you through this process.  I will be adding what has happened thus far and what I’ve learned and continue to be learning about this process.  It’s a lot I must say and much I’m sure many aren’t aware of!

Stay tuned….

Special Olympics

Special Olympics is humanity’s greatest classroom, where lessons of ability, acceptance and inclusion are taught on the fields of competition by our greatest teachers – the athletes”

 

Special Olympics Canada

http://www.specialolympics.ca/en/

Special Olympics International

http://specialolympics.org/

Special Olympics Ontario

http://www.specialolympicsontario.com/

 

MISSION STATEMENT

To provide year-round sports training and athletic competition for individuals with intellectual disabilities.

Special Olympics promotes opportunities to develop physical fitness, demonstrate courage, experience joy, and develop skills and friendship with their families, other Special Olympic athletes and the community.

Over the past 40 years Special Olympics has grown from a modest program serving local athletes to become the world’s largest movement dedicated to promoting respect, acceptance, inclusion, and human dignity for people with intellectual disabilities through sports.

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The purpose of this article is to bring attention and information of this great program that is available in most communities.  The benefits are great whether you are an athlete, coach, support staff or volunteer.  Your life will be enriched and forever changed.

Last summer, I had the wonderful opportunity to volunteer for the 2010 Special Olympics Summer Games held here in London, ON.  It was a time I’ll never forget!

London did an amazing job hosting and it showed in the faces and comments of the coaches, athletes and support staff.

The games created fun times and proud moments for the athletes, their teams and friends and family.  Many achieved goals, broke personal records and made new records for themselves and/or their teams.

Meeting so many wonderful people, athletes, coaches, support staff and other volunteers made this experience so amazing!  The athletes were the best!!

An Uncle of mine coaches a couple of the teams in Halifax.  When we have our family reunions they always consist of a softball game between the family and the athletes.  It’s something everyone looks forward to every year.  On top of that is a yearly BBQ my Uncle holds for them and many of the family are there to lend a hand in the preparations and happenings of the day.

There are 14 sports, and many Athletes do more than one!

http://info.specialolympicsontario.ca/programs-policies-procedures/14-sports

  • 5 Pin Bowling
  • 10 Pin Bowling
  • Alpine Skiing
  • Athletics (Track and Field)
  • Basketball
  • Bocce
  • Curling
  • Figure Skating
  • Floor Hockey
  • Golf
  • Nordic Skiing
  • Power-lifting
  • Rhythmic Gymnastics
  • Snowshoeing
  • Soccer
  • Softball
  • Speed Skating
  • Swimming

There are Regional, Provincial, National and World Games held.  Provincial Games are held on a rotating basis over a four-year period.  National Games are held every 2 years on a rotating basis. Athletes are selected from national competition to advance to World Games also held every two years on a rotating winter and summer basis.

Listed below are links to the District sites for Special Olympics, followed by a link to find Special Olympic programs by Community.

 

Central Ontario District http://central.specialolympicsontario.ca/

Eastern Ontario District http://east.specialolympicsontario.ca/

GTA District Sitehttp://gta.specialolympicsontario.ca/

Northern Ontario District http://north.specialolympicsontario.ca/

South Central District http://southcentral.specialolympicsontario.ca/

South West District http://southwest.specialolympicsontario.ca/

 

Special Olympic Programs by Community – http://directory.specialolympicsontario.ca/Community-Programs/

 

 

Special Olympics are proud to be affiliated with The Ontario Law Enforcement Torch Run.

http://www.torchrunontario.com/

The Ontario Law Enforcement Torch Run is a community-based, province-wide event that sees the “Flame of Hope” carried across Ontario by members of law enforcement agencies from across the province.  The objective of this and other events is to raise funds for and awareness of the Special Olympics movement in Ontario.

The Ontario Law Enforcement Torch Run is making a difference by raising funds for Special Olympics Ontario, and all funds raised are directed into community Special Olympics programs.  As well, the torch run involves law enforcement personnel in a community based, province wide program.  The torch run sets up community partnerships with sponsors, Special Olympics volunteers and local supporters, to reach a shared vision of helping athletes.

Special Olympics Ontario uses the funds raised to support three major initiatives:

  • Competition funding for communities hosting provincial and regional competitions, including travel and registration costs
  • Staff support, including SOO field staff
  • Support grants to new programs, competitions such as Hometown Games and programs in need, which amounts to approximately $250,000 per year

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The Special Olympics Programs are an amazing opportunity for youth and young adults to participate in a sport of their liking (some more than 1 or 2), make some great friendships, feel pride and accomplishment, attend some great social events, and enjoy new opportunities.

The joy and smiles on all of the Athletes faces is infectious and you can’t help but be taken in as you are surrounded by the warmth, happiness and pride!

Take a few moments to read some of the testimonials from the Athletes, coaches and family at the following link.

http://www.specialolympicsontario.com/default.asp?contentID=48

 

If you would like to become a volunteer for Special Olympics, here is where to start!

http://www.specialolympicsontario.com/default.asp?contentID=21

 

Facebook – http://www.facebook.com/specialolympicsontario

Youtube – http://www.youtube.com/specialolympicson

 

Augmentative Communication

*Did you know….

  • that 1 in 10 Canadians has a speech, language or hearing problem
  • an estimated 4% of the preschool population has a significant speech or language disorder
  • 8% to 12% of school children have some form of speech or language impairment
  • communication disorders in school-aged children are often misdiagnosed as learning disabilities or behavioural problems, and can be very difficult to treat in later years.  Children with behavioural problems are ten times more likely than other children to have language disorders
  • a child should use 200 or more words by the time they are 2-3 years old and by the age of 4 1/2 their vocabulary should consist of approximately 2000 words
  • speech and language disorders are strongly related to failure in reading and writing
  • drop our rates in students with communication disorders is 43% compared to 23% in non-impaired students

    *The Ontario Association for Families of Children with Communication Disorders: http://www.oafccd.com/

 

What is Augmentative and Alternative Communication (AAC) and who uses it?

 

Augmentative, sometimes referred to as alternative communication (AAC) is a method of communication used by individuals with severe speech and language disabilities, those who have cerebral palsy, autism, ALS, suffered from a stroke, etc.

Some people have complex communication needs associated with a wide range of physical, sensory and environmental causes which restrict/limit their ability to participate independently in society. They and their communication partners may benefit from using AAC methods.

Having a severe speech problem affects many aspects of a person’s life. It may affect one’s ability to live in the community, direct one’s care, find employment, discuss sexual matters and report or prevent abuse

AAC is for those individuals who are unable to use verbal speech yet are cognitively able or when speech is extremely difficult to understand. These individuals will use gestures, communications boards, pictures, symbols, drawings or a combination of all of these. An individual would point to a single meaning picture – for instance if the individual was hungry, the picture may look like somebody eating. If the individual is also physically impaired, a head pointer may be worn to indicate the picture, which would relay the feeling.

The methods of AAC will vary and be personalized to meet the needs of the individual. Many forms of AAC will have an Assistive technology component, which will come in both high-tech and low-tech strategies. You don’t need special skills for understanding an individual who is using ACC, as the processes are self-explanatory.

AAC refers to ways other than speech that are used to communicate. Most people who use AAC have a variety of communication systems. Depending on their needs and skills they usually include a number of aided and unaided communication systems.

Unaided AAC systems might include:
Voice; nodding and shaking one’s head; facial expression; pointing or looking at desired objects; gestures; sign languages.

Aided AAC systems might include:
Communication displays (comprised of written words, letters or phrases, pictures or symbols); devices which speak or print out messages; call bells etc.

There are specialized AAC Services available to assist people in determining the AAC systems which best meet their needs and skills.

Here is a list of centres in Ontario for Augmentative Communication, http://www.accpc.ca/aboutaac-ontarioservices.htm

 

This information is for just that, information purposes only.   If you have questions and want more information, consult your Speech and Augmentative Communication Therapists.