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…. 🙂

 

 

 

 

 

 

What is Accessibility to you?

Wikipedia defines accessibility as the following:

“Accessibility is a general term used to describe the degree to which a product, device, service, or environment is available to as many people as possible. Accessibility can be viewed as the “ability to access” and benefit from some system or entity. Accessibility is often used to focus on people with disabilities or special needs and their right of access to entities, often through use of assistive technology.”

The dictionary has an interesting definition of accessibility:

1. Easily approached or entered.

2. Easily obtained: accessible money.

3. Easy to talk to or get along with: an accessible manager.

4. Easily swayed or influenced: accessible to flattery.

 

Both have offered a very broad, general definition.  What does accessibility mean for you?

For many people who live with disabilities, accessibility can mean the difference between being able to get out of the house to attend to the daily chores/outings/events and things typical for many people, or NOT being able to get out or get to many places to do what many take for granted, go to work, go shopping, visiting, etc…

Accessibility means different things for different people.  We all need to have accessibility to some extent.  You may be thinking, “I don’t have a disability!”.   Disability or not, we all use things everyday that help make things ‘accessible’ to us.  Think about it.  Can you think of 3 things you use every day that help you do things and get places?

How many times have you used the automatic door openers to enter buildings?  That’s accessibility!  How many times have you chosen to take the ramp instead of a few stairs?  That’s accessibility!  Have you ever used a ‘jar gripper’ to help you open jars and other lids difficult to open?  That’s accessibility! Do the taps in your kitchen or washroom have ‘lever-like’ knobs instead of the usual ’round’ ones?  Believe it or not, that’s also accessibility!

More and more I think about how things are looking and how they will be, accessibility-wise, with regards to my son.  Where can I take him that will be accessible?  What if he wants to go places with his friends more as he continues to get older, and it’s not accessible?  My thoughts already go to even just the simplest things like going to family dinners.  Not everyone has an accessible place.  At 14yrs old, he is too big to be carrying on my own.  Even to do a 2 person lift, how many doorways are wide enough to accommodate?

1 in 7 people in ON have a disability and that number will increase as our population ages. The Accessibility for Ontarians with Disabilities Act was passed in 2005.  Its goal is to make Ontario accessible for people with disabilities by 2025.  Through province-wide accessibility standards, they will improve accessibility by identifying, breaking down and preventing barriers to accessibility.

In the near future, I’m going to take a look at accessible housing to begin with.  How many homes are actually accessible?  What does the market consider accessible? (Yes, it will be different for each person’s needs, but in general, their definition)  Are the accessible houses affordable for those who actually need them?

I’m also going to look at transportation.  It’s availability; it’s cost and is what’s in place working? Is it enough?

If you know someone in either of these areas that would be interested in meeting with me, discussing this and even possibly giving me a ‘guided tour’ to see what’s out there, please contact me, I’d be pleased to meet you.

I will be writing about the information I find for articles and for my blog.

Water in my brain – A Child’s Explanation

Last year I wrote an article about Hydrocephalus for information purposes and to add to the resource guide Sylvia McGrath and I have been writing the past couple years for families/individuals who have chronic illness, learning disabilities and/or special needs.  Section One (A-I) is done, available online and in the Canadian Library Archives.

I was asked to write about it, from a childs point of view.  I chose to take the route of explaining it how I think my son would explain it to one of his friends or to another person in general.  I wrote using terminology/words that I think most would understand.

As we know with most children, there aren’t too many details when it comes to stuff like this.  Things are typically explained as much and in as little time as possible so they can continue on with whatever they were doing.

As I mentioned, since my son has Hydrocephalus, I used him to write this.  I look forward to your feedback and comments.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Hi, my name is Patrick, I’m 14yrs old and I have ‘water in my brain’.  In the hospital, they call it Hydrocephalus (Hi-droh-cef-a-lus).

All of our brains make ‘water’.  The doctors call it, CSF (Cerebral Spinal Fluid).  For most people, the ‘water’ gets soaked up in our bloodstream and then goes away when we go to the bathroom.

For me, the water doesn’t soak up.  It keeps collecting and fills up the spaces inside my brain called ventricles (ven-trick-culls).  When there gets to be too much water in them, I feel a lot of pressure in my head and I get bad headaches.  Sometimes my eyes go funny and sometimes I even fall asleep.

The doctors have fixed it though, so I don’t feel pressure all the time or get headaches all the time.  They put 2 shunts in my head.  A shunt is a little thing they put in my head that has a dial and some small tubes attached to it.  One tube goes from the dial into my ventricles, the other goes from the dial down into my stomach.  You can’t see them when you look at me, they are underneath my skin.  The doctors set the dials, and when the pressure in my head gets too much, the shunts ‘turn on’ and take the water out of my head.  The water gets pumped down to my stomach where it gets soaked up there instead of in my head.

I go for Cat Scans (CT’s) once a year to see how my ventricles look.  It’s a big round machine that takes pictures of your head.  You have to lay very still when they take the pictures.  It doesn’t take long at all if I don’t move.

If the pictures show my ventricles are bigger than normal, the doctor will do some other tests to make sure my shunts are working ok.  If they look ok, then I go home and come back in a year so they can see how I’m doing.

 

 

Written Oct/11 by:  Renee MacLachlan

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….

A new name and a new look!

Focusing The Voice has been changed to Resource Connection!

The new website is live and being updated with a new look and more information, connecting you to the resources you need and want. Bear with me as I work on it. 🙂

I’m gradually making all the changes necessary to all other links etc.

For now, you can still find us by using focusingthevoice.com, but you will be immediately re-directed to the new site http://resourceconnection.ca

I look forward to the exciting new changes and helping you find the resources you want!

See you soon!! 🙂