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  And if we get quiet and withdrawn, just know that are thinking about them and don’t try to coerce us into being cheerful.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

Genetics again – How interesting!

During the admission earlier this year, genetics were brought in again due to something seen on an MRI Patrick had done while in hospital.

 

As most already know, Patrick was diagnosed with Meckel Syndrome.  At the time of his birth, there were no tests for this syndrome.

About 3yrs ago when Patrick had his cranial vault expansion, genetics was brought in to see if they could shed some light on what was going on with Patrick.  Was there any more or new information regarding Meckel Syndrome?  Was there anything else they could think of that could possibly be the cause of what was happening with him?

We found out then, there were now tests available for Meckel Syndrome!  I signed papers to give permission to have his blood sent for testing.  It had to be sent to the states and would take up to 3 months approximately for results to come back.

Fast forward a few months to the results of those initial tests…

There are actually 7 different tests!  Meckel Syndrome can be found on 7 different genes now.  When the results came back negative for all 7, we were quite surprised!!  This wasn’t the end though!  The Genetist was shocked on some of the results and wondered how he was going to tell us.

Apparently, 2 other damaged genes were discovered in this process.  Guess what?? Neither of these had ever been seen or documented before! Ever! Anywhere!  So we were asked to sign forms to take more blood so they could store his DNA and send it for more in depth testing and that the government would cover the cost of any and all further genetic testing for Patrick.  (It will likely take years before anyone finds anything out about these 2 new damaged genes.  We’ll be lucky if it’s in our life time)

Done!

Fast forward again to earlier this year…

As I mentioned, after an MRI during this admission, something was noticed on the scan and genetics was brought in again.

In one of the pictures from the MRI, you can see something in Patrick’s brain that looks like the shape of a tooth.  A molar tooth!

 

The Molar Tooth Sign

It’s NOT an actual tooth!!  The easiest way to describe it, is type of malformation in the brain that just LOOKS like a molar tooth, hence its name.

The molar tooth sign is a classic sign/symptom for Joubert Syndrome.

Joubert Syndrome is another rare, recessive syndrome that hasn’t been around very long, and they are still doing research to find out more about it.

 

Meckel Syndrome vs Joubert Syndrome

Both of these syndromes, as mentioned, are rare.  They are recessive as well, which means they don’t appear very often.

There is no history in either myself or Dave’s family of anything like either of these syndromes, but the genes are carried in the families and can present themselves whenever nature decides to.

*Let me just interject here, that every one of us carries thousands of bad genes!  Every one of us has a 25% chance of having a child with any of those thousands of ‘bad’ genes.  It also takes BOTH the sperm and the egg to be carrying those same genes for the syndrome or whatever to make itself known.  In other words, both the sperm and egg that created Patrick carried these particular genes.  If only one of them carried them, Patrick would likely just be a carrier and not have any issues at all.*

Research and information show both Meckel Syndrome and Joubert Syndrome ‘share’ some common genes!  And while Meckel Syndrome usually has a not so good mortality rate, Joubert’s is good!

There is continued testing being carried out for both these syndromes, and over the years, more is expected to be learned and found out about each.

The shocker from blood work taken earlier this year for genetics?  Now positive for one of the genes for Meckel Syndrome and negative for Joubert!

So what does this mean?

Patrick has the Molar Tooth Sign!  That is classic symptom for Joubert!  What do we tell doctors and everyone else who asks about this now?

The Answer is…

Patrick DOES have Meckel Syndrome!  And while so far the tests for Joubert say negative, he DOES have the classic symptom for Joubert!

Patrick has Meckel Syndrome AND Joubert symptoms!

That’s what we tell people now!

Did you get all that?  Please feel free to ask questions if you like.  It’s not the easier thing to understand for sure.

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.

Cont’d – One of those appointments

Well, you know how Friday went, or rather didn’t go.  Now here’s the rest of the story.

Shunt-o-gram was scheduled for 1230pm Monday.  A phone call from Paul in Nuclear Medicine informs me that Anesthesia had no information or knew about the test being done.  It is rescheduled for Tuesday, the same time.

Another call from Paul shortly after informs me that Dr. Reed (the Dr they want doing this, and frankly me too) will not be in hospital Tuesday afternoon.  Shunt-o-gram rescheduled again to Wednesday for 1pm.

NOW the fun began when we arrived at Nuclear Medicine on Wednesday.

Anesthesia arrived thinking Patrick already had an IV in place for sedation.  We came from home, as outpatient, obviously he had no IV.  There comes the next big undertaking.

It is unbelievable how strong Patrick is! It takes at least 3 to hold him while they try for an IV.  Poor guy has Mom’s veins, so they are small and collapse, which doesn’t help of course. FIVE tries to get an IV this day.  They had one at one point, but they didn’t secure his hand/wrist enough and they tried to inject something to calm him down, he fought and moved and the IV came out.

Finally after getting an IV and using half a roll of tape to secure it to him, we were set to do the test.

The next issue was figuring out where in the shunt the needle should go.

Let me take a short side-track here and try to explain what happens for a shunt-o-gram.

Shunt-o-grams are done in Nuclear Medicine.  It is a sterile procedure and everyone in the room wears masks and such.  The area where the needle goes is shaved down, cleaned and sterilized.  It typically involves inserting a butterfly needle into the reservoir of the shunt (depending on the type of shunt, some are inserted in the programmable area apparently).  Pressure measurements are taken and some CSF (Cerebral Spinal Fluid) is taken and sent off for testing also.

A small amount of radio-active material is then injected into the shunt.  He is then moved under a machine (similar to one used for bone scans).  As it flows through the tubing of the shunt, the flow is watched on a screen and pictures are taken periodically as it goes through.  This screen is a white background and the material shows black as it travels through the shunt.

They are watching that it moves through well and disperses well at both ends.  If you begin to see dark ‘blotches/spots’, it could mean a blockage.

After checking previous x-rays and scans, it was sorted where Patrick’s reservoirs were located and the test began.

Keeping Patrick sedated is another story in itself.  Since last fall, it seems Patrick metabolizes those drugs quite quickly.  It takes A LOT to sedate him and keep him sedated.  For a 14yr old boy who is only 92lbs, it has been taking more than an adult dose to keep him out long enough to do many of these tests.  For this test, 3 drugs were used, the main one being Propafol.  He needed 80mg more than they would normally give an adult (which is 200mg) to get him through the test.  Wow!

Thursday being called in to discuss the test, resulted in finding out that both shunts appear to work, although the left one is sluggish.  Both dispersed, albeit slowly, but they did.  The tubing is intact and in suitable places. (after the shunt-o-gram, they sent him for a shunt series – an x-ray to see where the tubing was and where it ended)

So the question is.  If both shunts are working, his ventricles should be normal size.  If one is working better than the other, then that ventricle would be smaller, but that’s not the case.  ALL of his ventricles are enlarged.

Update:  Patrick was admitted to hospital yesterday (Friday)

More to come…

Summer so far

Patrick’s Summer – 2011

Patrick is having a busy summer.  Quite a number of appointments this summer, new orthotics are being made and looking at some different ideas for seating to keep him sitting up straighter and better in his wheelchair, along with a number of other follow ups regarding his potassium levels and his blood pressure.  We have recently found out that Patrick’s kidneys are only working 60-70% normal, so he is being followed closely to keep an eye on their function.

Casting for new Orthotics

Patrick started attending respite this summer, two weekends and 1 week away throughout June/July and August.  He has been enjoying them.  The week in August is the first time for that length of time he’s been away with people he didn’t know.  He’s had a couple rough moments, but overall enjoying himself.  He has gone to the movies, bowling and gone on some walks, done crafts…attempted some swimming and more.

Patrick will be attending Drama Camp again this year.

This program is put on for children using Augmentative Communication Devices, through Thames Valley Children’s Centre and The Original Kids Theatre Company.  There were 2 sessions, morning – for those attending for the first time, and afternoon – for those who have had experience already attending.

Patrick will attend the afternoon sessions, going down to the theatre with one of his respite workers via para-transit, Monday to Thursday for a week.  Friday morning they put on the performances.

They are doing 3 plays.  The True Story of the 3 Little Pigs, Sounds of the Night and The Eighth Dwarf.  Each child has their lines for the plays programmed into their communication devices prior to the camp.  Patrick reminds me every day to go over his plays with him, so he can do his lines! All the plays were written and directed by one of the Original Kids.

Each child was paired with one of the Original kids for each play to help them along when necessary.  The first 3 days were spent rehearsing the plays.  Thursday was dress rehearsal day.  Friday morning both groups, morning and afternoon, put on their plays for family and friends at the Spriet Family Theatre, downtown in the Covent Garden market.

All the kids have a great time!  They receive a certificate, a poster, a shirt, and a program.  Wonderful memories indeed!

We will be starting to work on our school time schedule for mornings and bedtimes to help get a head start on the routines he will be using for school.  He’s going into high-school; it will be a big change for him.  We went out a couple weeks ago to get his school uniforms.  He’s been counting down to school all summer!  He is excited and happy that school will be back soon!  He can’t wait to see his friends and the EA’s!

Trying on School Uniforms for Highschool

 

People First – Not disability

This is my little rant for today!

How many times have you heard someone speaking about or describing someone as a ‘disabled person/child’?  How many times have YOU yourself used that terminology as well?

Have you ever been given a ‘name’, nickname or otherwise for something you did that you didn’t like or care for, yet people still refer to you by that name to this day?  This hopefully gives you a little bit of an idea of what I’m trying to say here.  It’s not exact, but the context is similar.

What can’t people look at the PERSON first!?!  That’s who they are after all.  A person/child…who happen to have some challenges and/or have a disability(ies).

I DO NOT have a disabled child!!  I have a CHILD who happens to have a disability!

He is NOT ‘that kid’!  He is NOT that ‘disabled child/boy’!  His name is Patrick…and if you ever have the pleasure and honour of meeting him one day…you will meet a great young man, with many wonderful qualities who will bring a smile to your face like no other!

I don’t want you feeling sorry for me either because my son is who he is.  I’m very proud of him!  Accessibility may hinder some of the things he can do and access, but he can do whatever he wants to do and try!   He just might have to do it differently!

People with disabilities don’t want you feeling sorry for them.  They deserve respect like everyone else.

Society is slowly changing it’s outlook, realizing and accepting that we all have the same rights, and that making our cities as accessible as possible for everyone is certainly the right thing to do!  Whether the disability is visual, physical, mental and even sometimes invisible…just to name a few…in God’s eyes there are no differences…just people!

We should all look at people and things through God’s eyes…imagine how great that would be!!

Thanks for letting me rant/vent today!  If you have any comments/stories to share, or any questions, please feel free to comment or email me.  I’d be happy to reply!

Let me end by sharing the 2 Gold ribbons my son brought home from track and field yesterday!  Does he look proud or what!!  I know I am! 🙂

Have a great day friends!!

Community Advocacy Certificate complete!

I am very pleased and happy to have been able to complete 8 courses in 3 months, and with great marks! 🙂

The Community Advocacy Certificate through Lambton College offers the chance to learn and gain some great information and resources through online learning.  There are a number of courses offerered for the certificate, 8 are needed to complete the certificate.  The only mandatory course for the certificate is Community Advocacy Techniques.  Each course is 4-5 weeks in length.  There are 7-9 assignments for each course, and a final written assignment/exam.

The courses I took are as follows:

  • Community Advocacy Techniques*
  • Ontario Works Act
  • Ontario Disability Support Program Act
  • Canada Pension Plan Disability Benefits
  • Residential Tenancies Act – Part 1
  • Human Rights in Ontario
  • Employment Standards Act
  • Consumer Protection Laws, Part 1

The course is not being offered again now till Fall 2011.  Information on it, in the meantime can be found here, http://www.communitylawschool.org/community.  Later in the summer the Lambton College website will have the listings as well.

It was alot of work, and I was able to gather so many resources and so much information, I really enjoyed taking it!  I’m looking forward to using the information and resources and advocating for families/individuals in whatever way I am needed.

I’m looking at more courses/workshops/seminars etc… that offer more information on Advocating, accessibility and  any other information that will/can help me help families/individuals with disabilities and special needs navigate through the various circumstances that come our way.

One course a few of us Advocates here in London are interested in a new course being offered this fall at Durham College.  It’s the only college offering it in Ontario.  http://www.hcs.durhamcollege.ca/EN/main/programs/accessibility_coordination_grad_cert.php  Right now it’s only offered full-time and in Oshawa.  I have emailed though and asked about the possibility of it being offered for distance learning.  I know there are many who would love to take this as well.

Ok…time for supper!  Have a great night!  I’ll be back! 🙂