A Wish List – Bereavement is not contagious

During our Grief Group Wednesday night, our facilitators gave us a copy of a Wish List that they had come across a few years ago and have been sharing with theirs groups.  Many of us found it really great and quite applicable.

Not all will apply to everyone, but many do apply.  For example – taking/getting them out.  This will help many, but not everyone.  Each individual is at a different stage in their grief and will know when they are ready to do certain things.

For anyone who has lost someone close, you may find it quite helpful also.  We wanted to share it with you.  The author is unknown.  There are some different versions out there, but this is the one we chose and like.

 

A WISH LIST

  • I wish you would not be afraid to speak my loved one’s name.  They lived and were important and I need to hear their name.

 

  • If I cry and get emotional if we talk about my loved one, I wish you knew that it isn’t be because you hurt me:  the fact that they died causes my tears.

 

  • You have allowed me to cry and I thank you.  Crying and emotional outbursts are healing.

 

  • I will have emotional highs and lows, ups and downs.  I wish you wouldn’t think that if I have a good cry my grief is all over, or that if I have a bad day I need psychiatric counseling.

 

  • Being Bereaved is not contagious, so I wish you wouldn’t stay away from me.

 

  • I wish you all the “crazy” grief reaction that I am having are in face very normal.  Depression, anger, fear, hopelessness and questioning of values and beliefs are to be expected following a death.

 

  • I wish you wouldn’t expect my grief to be over in 6 months.  The first few years are going to be exceedingly traumatic for me.  As with alcoholics, I will never be “cured” or a “formerly bereaved”, but forevermore be recovering from my bereavement.

 

  • I wish you understood the physical reaction to grief.  I may gain weight, lose weight, sleep all the time or not at all, develop a host of illnesses and be accident prone, all of which are related to my grief.

 

  • Our loved one’s birthday, the anniversary of their death and the holidays can be terrible times for us.  I wish you could tell that you are thinking of us and them on these days.  And if we get quiet and withdrawn, just know that are thinking about them and don’t try to coerce us into being cheerful.

 

  • I wish you wouldn’t offer to take me out for a drink, or to a party, this is just a temporary crutch and the only way I can get through this grief is to experience it.  I have to hurt before I can heal.

 

  • I wish you understood that grief changes people.  I am not the same person I was before my beloved died and I will never be that person again.  If you keep waiting for me to “get back to my old self” you will stay frustrated.  I am a new creature with new thoughts, dreams, aspirations, values and beliefs.  Please try to get to know this different me – I’m the one who’ll be here from now on.

Author Unknown

Bereavement - loss of child

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!!

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!!

Minimize admissions – maximize quality of life

A quick update.  I’m sorry I won’t be going into it all right now, but I am just too tired and need to get to bed.  Patrick’s respite workers are finding it tiring when here as well.

Patrick is being admitted tomorrow morning to hospital.  A Shunt-o-gram is being done and the idea is that during this admission, the G-Tube and possibly the 24hr EEG will be done as well.  This admission will likely be approx 2 weeks, give or take a few days depending on how everything co-ordinates.

Trying to do as much as possible in an admission to prevent the back and forth between hospital and home.

A lot has gone on and been talked about and discussed yesterday and today and I will try to update when I have time while in hospital with Patrick.  I really need to go to bed now.  I still don’t have everything ready for tomorrow!

We welcome all thoughts, prayers, support and hugs and thank you for them as well.  Visitors are especially welcome to come see us.  Message/text/bbm or call to find out what room we are in.

Goodnight my friends, tomorrow is a long day, be in touch soon!

 

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!

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