Easter Seals Helps Children with Disabilities – You can too!

With 3 days to go till we do our rappel down One London Place to raise money for Easter Seals, we are falling a little behind on our required goal to participate.

Take a look at the Drop Zone website for more information about all the different drops that have happened and yet to happen!

You can take a look at some photos of previous Drop Zones!  Some amazing photos!

DSCN1162

That’s ME on the right last year coming down the building 🙂

Please support Easter Seals and help kids with physical disabilities succeed!

Everyday people are getting out of their comfort zones for Easter Seals kids!

The 3rd Annual Easter Seals Drop Zone London will take place Thursday, September 12, 2013 challenging participants to raise a minimum of $1,500 in pledges in order to rappel down the 26-storey building at One London Place, 255 Queens Ave. Everyday people will become “Superheroes” for a day by raising much needed funds for kids with physical disabilities, and challenging themselves in an exciting event that is both safe and fun!

Please support Easter Seals and help kids with physical disabilities succeed!

Having always appreciated and been grateful for Easter Seals and their support for the many things my son Patrick has and uses.

We have built a team this year and want to return the favour so to speak and do our best to raise the minimum $1500/pp (and more if possible) and do our part in raising money for this amazing organization!

This will be my 2nd time doing this, and a first for Mark & Dave on our team, but being able to support something that does so much for so many other children/families, it will be our honour to participate!

Please help us reach the minimum donation goal of $1500/pp to be able to participate in this wonderful event and opportunity to give back!

Thank you so much for helping us be able to participate and give back to something so great!

Here is the link to pledge online.  Ask/Share with your friends, family, bosses & co-workers!  We need your help!!

Thank you so much!!

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!!

Passports for Children with Special Needs

So…as I mentioned previously, we had passport photos taken the other day.  With the strict guidelines Passport Canada has regarding photos, I knew it would interesting.

Passport Canada has a page with general information for persons with disabilities.  You can take a look at it here. (Note:  I was quite surprised to see the address/URL for the page uses the word handicap in it.)

I’d like to know what YOU had to do, if anything, for your child(ren) with special needs to get their passport.

I called Passport Canada ahead of time to inquire what I would have/need to do if we couldn’t get a photo with his mouth completely closed.  They informed me I would have to get a letter from a Doctor explaining why.  Okay, I got on the phone with the Ped. Dentist and asked if they would help and provide a letter.  I explained the circumstances and situation and today I got a call back telling me the letter was being sent off in the mail today! THANK YOU Dr. Weinberger!! 🙂

During the photo taking, the photographer had asked me to remove Patrick’s glasses for the glare.  No problem, I took mine off for my photo as well.  She kept asking him to look at her or the camera, and he was, but it doesn’t look like he’s looking at you.  I told her he was and also asked if that would be an issue for their guidelines as well.  She wasn’t sure.  I called Passport Canada (PC) again and asked if there would be an issue with his eyes.  She informed me it would be up to the discretion of the individual office.  Needless to say, I’m looking at getting a letter NOW instead of later, just in case!  It also dawned on me that all children over the age of 11 have to sign their own passports, so I inquired about that as well.  Again, another letter from a Doctor is needed stating why he is not able to sign his own passport.  Patrick can write PAT, but not his full name, nor could he do it in the small space requested by them.

All of this will be worth it to know and see how much he will enjoy the trip! 🙂

Have you had to do anything in particular to get a passport for your child(ren) with special needs.  What do you think about the process?  Do you think they ask too much information?  Do you think all the letters are necessary?  Do you or did you have to pay for these letters?

Please share your experiences, I’d love to hear them.

Have a great evening!

Impressive Disney Planning – Cont’d

For all the changes that we’ve had to make in the past week, our travel agent has been wonderful!  She has been quick with information, bookings, reservations and insurance stuff and more.  The girls are excited and Patrick is waiting for me to make up a countdown calendar to put on his wall.

4 of our sit down meals are reserved, one for each park, including two character lunches!  One with Winnie the Pooh Gang (whoever of them can make it) and another with one or more of Mickey’s Gang!   The other two reserved meals are suppers, one being a Chinese cuisine and the other Italian.  With the Dining Plan we have, (we have the dining plus plan for free), we get one table seated meal, one quick serve meal and one snack each day we are there.  Heather, our travel agent, called me today with some great news!!  All the restaurants we have our reserved meals with, will accommodate Patrick’s diet as well!  How awesome is that!! 🙂  They will chop/puree up Patrick’s meal for him/us! How great is that?!  That will make some of our meal-times easier! 🙂  We’ve been informed to inquire at any others we attend for meals, as they may accommodate him, but those are not guaranteed!  Regardless, those 4 meals still help.

We’ve been given information about accessing many of the attractions at the parks with regards to accessibility and their alternate entrances for persons using mobility devices.  These entrances also allow a maximum of 6 people from the party including Patrick to stay together.  Since we are now 5 again, we can stay together and enjoy the attractions together!

A couple of the attractions we are looking at, are Kilimanjaro Safaris and the Jungle Cruise, both I know Patrick will love as it will give him opportunities to see many different types of animals.  He is also excited about going on any attractions that are train rides.

Today, we went for passport photos.  I had already called Passport Canada and inquired about what would happen or need to be done if we couldn’t get a photo of Patrick not smiling and without his teeth showing.  They said I would need to get a letter from a Doctor explaining why.  So in the meantime, I’ve put a call in to the Ped. Dentist for a letter with an explanation and why I’m requesting one.

Everything about the trip is booked now.  Plane tickets, Insurance, Resort, Transportation to and from the airport, Park tickets and some of our meals…everything is booked and paid for.  The reality of it is starting to hit me!  All the little pieces of information that we’ve been given and all the answers to all the questions we’ve asked have been answered and answered quickly as well.

I’m a little extra tired tonight, so I’m going to end here for now.  I will post more updates soon.

Thanks for stopping by and keeping up to date with us.  We love to hear from you too!

Have a wonderful evening! 🙂

 

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…. 🙂

 

 

 

 

 

 

Disney, here we come! Start – End!

So this is going to be a journey in itself.  A trip from which to learn and grow from.

Patrick and I have travelled before, but only to Nova Scotia.  This trip will be much different!  A farther distance, another country, a busier place, no comforts of home so to speak.  Not having all the things that make life more accessible and easier will be interesting.

This is a family trip.  8-11 of us are going.  My mother has felt very strongly the past while about doing a family trip.  The time has come to do it and now the organizing and planning has begun.  We’ve been researching for a while, but time is flying by and things need to be put into place now.

We’ve been lucky enough to have been referred to a local travel agent who has experience with booking with the Sunshine Foundation, so we are confident she will be able to provide us with the information we need and to help us book the most accessible trip possible for us.

Already there are so many things to think about.  Accessible rooms (what’s accessible for one, isn’t necessarily for another), washroom facilities (showers etc), meals preparation, laundry facilities, extra luggage for the extra necessities needed for Patrick and also looking at what type of things Patrick will be interested in seeing and how accessible they are.  This is just a start.

It’s not just Patrick that needs to be taken into consideration as I mentioned earlier, there is a fair size group of us.  For me though, making sure we have access to the things that will make this trip more enjoyable for Patrick and I and in turn everyone else as well.

I’m thankful I will have some help, not just from family, but Mom has told me we will be bringing one of Patrick’s respite workers with us to help me/us out as well.  That gives me some relief as well.

I will be blogging about our experience(s) and how things are going with our travel plans and the actual trip as well.

If you have been to Disney World in FL and have first hand experience with travelling with a child(ren) with disabilities, I’d love to hear from you.  Perhaps we can all learn from each other on a variety of things trip and travel related.  🙂

If you have any tips, suggestions or comments on anything you’ve experienced or think I should know or take into consideration, please share.  I’d love to hear from you.

For now, this is the beginning.  Passports need to be gotten for Patrick and I.  That’s another thing in itself, and the bookings will be done within the next week.  For those wondering when we are looking to travel, it’s mid to late January or early February.

Hope you enjoy following our journey, we look forward to sharing with you! 🙂