When what you prepared for isn’t what’s happened

I know it seems like forever since I’ve posted. Life has been busy with Patrick quite ill. He is on his 2nd admission since January and we are now heading into week 7 of this one. He is not looking at being able to go home till some time after the end of May.

Last year, after Patrick’s Wish Trip and before Christmas, I finally did something I should have done years ago. I created a ‘fan page’ for Patrick on Facebook. It was an easier solution for people who follow him and see what he’s up to and how he’s doing.

I just wanted to post this quick update that we are still here and hanging in. Patrick has been quite seriously ill. All the updates have been posted on his page if anyone would like to follow along.

https://www.facebook.com/notbythebooks

Watch for more…thanks everyone for your support!

Have an awesome weekend!!

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!!

Are you ready to talk about it?

The talk.

The talk no one likes to discuss or have.

The talk no one ever seems to be ready for.

How can you prepare for something that makes so many people uncomfortable?

Let me again say, no one is expecting Patrick to not make it through surgery.  We’ve been told it’s rare that children die on the table.  This is still a conversation many people must have at some point or another.  It’s particularly difficult when it’s your own child.

Patrick’s father was up for the weekend to see him (for those who don’t know, we are divorced, he sees him fairly often) and we had a couple conversations regarding what the other thought regarding resuscitation.  Not an easy conversation.

What do you do?  What do you say?  Many thoughts and questions come to mind.

Some will say he has been through enough.  Some will say he’s always come through.  Some will want the chance to say good bye.  Some will ask would he still be Patrick after?

Some family members have shared their thoughts with us already.

How many of you would be able to make that choice for your child? Do you think you would be able to tell if your child is suffering or not?

Could you make the decision selflessly?  It’s difficult as a parent, because that’s not the way it’s supposed to be!  Your child is going to outlive YOU right!?

We haven’t come to a decision yet.  I don’t think either of us are ready yet to do so.  I want to speak to the Doctors once they have the plan and get their thoughts on everything.  I want to have as much information as possible about this before making that decision.

What we do know is that since Patrick’s last cranial vault expansion, his health has not gone back to was it was prior to that.

We are NOT looking at this and expecting a negative outcome!  We are NOT planning on saying goodbye!

We DO have to be prepared and accept the reality of the situation and make decisions in the best interest of Patrick.

How do you think you would/will cope?  What things would/will come to your mind?  How difficult do you think it would/will be?

We’d love to hear your thoughts/experiences.

 

 

 

 

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!

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.

Heroes in the home

What is your definition of a Hero?  Do you know any Heroes?  Do you consider anyone a Hero?

Have YOU ever been called a hero?

What a way to start off this post asking so many questions.  Wait, I have more!

Are you a caregiver?  A Mom?  Do you look after a family member or friend?  If so, YOU are a Hero!

There are different definitions of a Caregiver.  Wikipedia has an interesting definition of Caregiver:

Carer (UK, NZ, Australian usage) and caregiver (US, Canadian usage) are words normally used to refer to unpaid relatives or friends of a disabled individual who help that individual with his or her activities of daily living.

The words may be prefixed with “family” “spousal”, “child” to distinguish between different care situations, and also to distinguish them definitively from the paid version of a caregiver, a Personal Care Assistant or Personal Care Attendant (PCA). Around half of all carers are effectively excluded from other, paid employment through the heavy demands and responsibilities of caring for a vulnerable relative or friend. The term “carer” may also be used to refer to a paid, employed, contracted PCA.

The general term dependant care (i.e., care of a dependant) is also used for the provided help.[1] Terms such as “voluntary caregiver” and “informal carer” are also used occasionally, but these terms have been criticized by carers as misnomers because they are perceived as belittling the huge impact that caring may have on an individual’s life, the lack of realistic alternatives, and the degree of perceived duty of care felt by many relatives.

More recently, Carers UK has defined carers as people who “provide unpaid care by looking after an ill, frail or disabled family member, friend or partner”. Adults who act as carers for both their children and their parents are frequently called the Sandwich generation.

A general definition of a carer/caregiver is someone who is responsible for the care of someone who is mentally ill, mentally handicapped, physically disabled or whose health is impaired by sickness or old age. To help caregivers understand the role they have taken on, “Next Step in Care”[2] outlines the following:

You are a caregiver if you:

  • Take care of someone who has a chronic illness or disease.
  • Manage medications or talk to doctors and nurses on someone’s behalf.
  • Help bathe or dress someone who is frail or disabled.
  • Take care of household chores, meals, or bills for someone who cannot do these things alone.[3]
It’s my Duty Isn’t it?

With an increasingly aging population in all developed societies, the role of carer has been increasingly recognized as an important one, both functionally and economically. Many organizations which provide support for persons with disabilities have developed various forms of support for carers as well.

What is YOUR description of a Caregiver?

As caregivers, I don’t think we give much thought to what we do.  We just do it.  It’s natural, it’s what we do.  We become masters of multi-tasking, juggling appointments, preparing lunches and making meals, transportation, cleaning, laundry and more.  We are teachers, doctors, nurses, chefs, handyperson’s, therapists, advocates/speakers, to name a few, all wrapped into one.

When was the last time someone complimented you on everything you do?  When was the last time someone thanked you for all you do?

When was the last time someone called YOU a Hero?

It’s not always easy or comfortable to hear those words, because to us it’s what we do all the time.  It’s our life!   It’s still feels good to hear them though, when we do.

Often people ask me; ‘How do you do it?’  My response of course is, ‘Do what?’  They reply;  ‘Do everything you do with/for your son, and all the things you are involved in.’  What is our usual reply to a scenario like this?  This is my life, I just do it.  Just like you do everything you do in your life and for those around you.

Being Mom to a child with disabilities, we face challenges that many others don’t have.  We all have different challenges in life we go through, but some are more specific, I’m sure you understandwhat I mean.  I hope you do.  We don’t look for pity.  We don’t want you feeling sorry for us and all we go through.  We are proud, just like you!   It’s difficult for many of us to ask for help and/or support for whatever it is we might need.  Although there are days we think we must be superman, we know we aren’t.  It’s tough for us to take time for ourselves, but we learn, slowly and it’s something I don’t think any of us perfect.

A week or two ago, one of my son’s workers asked my permission to nominate me for an award through CCAC (Community Care Access Centre).  I wasn’t sure what it was about or for, but she needed my permission to submit my name.  Since things have been so busy with Patrick the past month, all I got was that it had something to do with being a caregiver.  I gave my permission and honestly didn’t think about it again, till this past Friday when I received a letter in the mail from CCAC.

An initiative of South West CCAC and the healthline.ca

Congratultions!

We are pleased to inform you that Michelle S. has nominated you for a

HEROES IN THE HOME Caregiver Recognition Award!

There is a special celebration  on October 20th to receive this award.

WOW!  How sweet of Michelle to think so much about me to feel I would give justice to and deserve this recognition.   I really am blessed!  The girls who come work here, love working for/with Patrick and I.  We become like family and care for and about each other.

How amazing someone thinks of me as a Hero!  It’s an indescribeable feeling.  I’m just me after all, always am, have been and always will be.

I am very grateful for everyone in our life who loves and supports us.  I am grateful for all the things, whether big or small that anyone does with and for us. I often wonder how I could ever repay everyone for all the kindness, love, support etc that they have shown us.  It truly is overwhelming some days and I don’t think I could find enough words to express it.

For tonight though, I will say thank you!  Thank you to all of you!  May you know you are loved and thought of fondly often.

For tonight, I will check on Patrick before I crawl into my bed, and fall asleep knowing that someone thinks I’m a Hero.  And I will let myself have warm fuzzy feelings, even if it’s for a short time because tomorrow I will wake up and do it all over again.

Let me leave you with one more thought…

YOU are a Hero too!!