Category Archives: Education

Genetics again – How interesting!

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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?

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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

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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

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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

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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!

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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! :)

Genetics…finally…drum roll please!!

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So much to update on…where to begin…

I know many have been wondering about what the Genetic testing results were.  I mentioned on Facebook that it was too complicated to get into and put into a status.  I guess I almost need to start from Halloween morning when Patrick went into the hospital and spent 20 days to bring you up to speed as to why genetics was brought back in.  We had not seen Genetics since shortly after Patrick was born.

To make a long story short, the primary reason Patrick went in and stayed in for, was pressure build up in his head.  He was very lethargic, no fevers, and had the odd headache.  When the ‘hole/soft spot’ in the back of his head started to swell/puff out, well…that was the final indication of the seriousness and that he had to be brought in immediately.

During the course of his 20 day stay, he had many procedures and surgeries done.  CT’s, Shunt-o-gram, MRI’s, x-rays, EEG’s, ultrasounds, 4 ICP (Inter-Cranial Pressure) monitors…and 2 other surgeries as well were just a few of the things he went through during his stay.  The 4 ICP monitors and the 2 other surgeries all happened within a 7 day period.

It had been 6 years since his previous hospital stay, the longest time span between stays since he had been born.  This was the 3rd time with pressure issues, but was the worst and most serious.  The Neurosurgeon told us that this pressure had been building over a period of time, and his brain miraculously had been accommodating the build up as it had seemed to be gradual.  Had the pressures he had in his head built up in a much shorter period of time or instantly, they would have been lethal to you or I!  Normal pressures range between 7 – 15ish, some possibly up to 20.  Patrick’s pressures ranged from 30 – 90 at times!

Of course, Patrick being Patrick has never been text book.  He’s been writing his own chapters AND books since birth.  I found out a couple weeks ago, when I took him for his anesthetic consult, that the nurse had Volume 7 of his chart with her!  He puzzles the Doctors, makes them think and even gives them headaches….literally for some as we found out.   I had noticed a pattern over the years with his Neurosurgeon and finally mentioned it to her one day while in PCCU (Pediatric Critical Care Unit).  Every time she would speak to me/us about Patrick, she would physically scratch her head.  Every time!  She was quite shocked and surprised to realize she did this, but also went on to explain that whenever she thought about him, being so complicated and trying to figure things out with him and what was wrong throughout different instances in his life, she actually and physically would get a headache!  He is such a puzzle!  From that point on, she really tried consciously to NOT scratch her head!  We got a chuckle out of it.  J

Doctors from the following areas were called and consulted with and also had follow-up with him after his stay…Neurosurgery, Plastic Surgery (no follow-up), Nephrology, Neurology (no follow-up), Ophthalmology and Genetics.

I will do another post to explain what all had been done regarding the surgeries and what some of the consequences of the stay were and the follow-up, including the current issues we are dealing with in my next post.

I will get back to Genetics, the reason they were brought in, what they did and the results of the follow-up with them.

Genetics were brought in because no one could figure out why this was happening or what was causing it.  They thought perhaps maybe there might be some new and updated information about Patrick’s syndrome that would be helpful to them in figuring this out.

Genetics had good news and bad news.  The bad news was that unfortunately there was no further information on Meckel Syndrome.  Still practically all who were born with it died in-utero, during or shortly after birth.

The good news was that there was now testing for his syndrome!  There are actually 7 different types of Meckel Syndrome now apparently!  The testing was being done down in the states.  Permission from the appropriate persons and all the government stuff that goes with it had to be done for it to go.  Of course I gave ours.

Fast forward to February 2011, I finally get a call from the Genetics office that the results are in and that the Doctor would like to see us in person.  I was told it was too complicated to explain over the phone.  The next earliest appointment was a month away from that date!!

To be continued…

A great blog to share – Love That Max

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For a while now, I’ve been following and receiving daily posts from Love That Max.

Max is a young boy with CP.  Read more about what happened to Max here.

Click here to read a little bit more about the Love That Max Blog.

Follow Ellen Seidman on twitter @LoveThatMax

Find them on Facebook

I have really enjoyed following the life and stories of Max and their family.  I know you will too!

Things are progressing

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Evening Everyone,

Well, it’s been a couple of weeks since my last post, I apologize for that, it’s been quite busy, par for the course here, but still busy. :)

Let me see where I left off……..Oh yes…

4 of the 8 courses required for my Community Advocacy Certificate are done.  I wrote all 4 exams over the weekend, it took me about 20hrs to complete them all.  2 more courses start today, and the other 2 will begin April 1st.  These ones will be 5 weeks long.  We won’t have our marks for a couple weeks.  I’m curious and anxious to know how I did.  I feel like I’ve done well.

I have learned a lot, acquired much information and many resources that will certainly be an asset in helping others and being an even more effective Advocate!  I am enjoying it!

My first Accessibility Advisory Committee meeting for the City of London was last week.  It went well.  I was pleased and quite happy to hear about many of things that are happening regarding accessibility in our City.  I am now on a couple of sub-committees and looking forward to those as well.  Everyone was really nice and it was great having so many people in one spot that all shared a common passion and all working toward the same goal…to make our City more accessible!

I’ve been told and heard from others that London is ahead of the game when it comes to accessibility, ideas and having things implemented.  Something to be proud about indeed!

Last Thursday was also the day I toured another respite house.  This one was through the Salvation Army.  They have 2.  The house I toured could accommodate up to 8 children.  The house was nice, spacious, the whole place was accessible.  They have quite the area of land in behind where they have access to a pool, some walkways, tennis courts, fire pit and more, it was great to see.  I’m thinking Patrick will enjoy this house more than the others.  He is already asking to go and he hasn’t even seen it yet!  When the weather gets nicer, I’ll book Para-transit and we’ll go for a visit so he can see it.  I received my letter with the dates we were approved for, for respite.  One weekend in June, one weekend in July and a week in August, Patrick will also spend a week at his Dad’s (likely July) and he’ll attend Drama Camp in August as well.  It will be a busy summer for him…and for me! J

Las week was also the IPRC meeting at the high school and picking Patrick’s courses for September.  It went well.  We chose 7 courses for the year.  He will have languages, math, drama, vocal music, religion, science, and possibly visual art.  We’ll see how that goes.  If one of the courses doesn’t work for him, we’ll look at others at that time.

As some of you know, I request/ask for 2 meetings a year, what I call Team Meetings, one in the fall and one in the spring.  It’s a time where everyone involved with Patrick gets together and goes over what’s been going on, who’s doing what, goals, comments etc…  I have asked for our last one for this school year to be set for March.  I am waiting for a date on that.  Teachers, EA’s, therapists, Principal or vice, even agencies from the community that we have services with attend, as well as a representative from the school board when possible.  It’s a great opportunity for everyone to get caught up on Patrick and get a sense/idea of where we are at and where we are going and collaborating on what things will benefit Patrick.  With this year being the transitioning year for Patrick, I’m looking forward especially to this last meeting.

Thursday is Grad Photo Day!  I went out last night with my Mom and bought him a dress shirt and a tie for pictures, as they requested.  WOW, was he excited when I got it out for him to try on!! :) Of course I had to take a couple pictures, and he is a camera ham!  He loved it, and I posted a few on Facebook.  BOY! Does he look grown- up!  14 in June already!!  Years ago he didn’t like button up shirts.  He could put his fingers between the buttons and feel his skin and that wasn’t working for him!!  He doesn’t have a problem now it seems, maybe I can start buying button shirts for him now?  I’d have more selection to choose from too!! Lol

It’s amazing how much he has changed and grown the past couple years.  Even with everything he went through last fall, he’s not 100% yet, and I still worry we’re not out of the woods yet some days, but he’s doing well!

Next week is another follow-up with the Ophthalmologist.  I’m happy the Cornea Specialist doesn’t think surgery is necessary right now to remove the remaining damage, as long as it stays below his line of vision.  During the March Break, we will have a follow-up with Genetics.  14 yrs ago there was no blood test for Patrick’s syndrome, now there is.  It had to be sent away down to the states for the testing and to get the results; well they are in and apparently too complicated to tell me over the phone, so they’ve asked us to come and speak to them.  I’m curious about that appointment and what they will tell us.

My mind has drawn a temporary blank at the moment, I must be tired.  I think I will sign off for now and maybe go to bed early, tomorrow is another busy day.

Have a great evening my friends!! :)

2 months in

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2 months into 2011, and what a busy time it’s been and is.

Multiple follow-ups from Patrick’s lengthy hospital stay last fall, and a few more thrown in with other referrals, thought to be considered and necessary.

Wait for it now………………………………

I’m in College!!!

I am registered at Lambton College and taking a Certificate Program, Community Advocacy.  February 1st, began with 4 courses of the 8 courses required for the certificate.  The first 4 this month are:  Community Advocacy Techniques (the only mandatory course for the certificate), Canada Pension Plan, Ontario Works Act, and Residential Tenancies Act – Part 1.  March courses will consist of:  Employment Standards Act, Residential Tenancies Act – Part 2, and Human Rights Ontario.  The last course, set to start Apr. 1st will be Ontario Disability Support Program.

The courses for Feb are 4 weeks long.  Mar and Apr’s courses are 5 weeks each.  For the current courses now, there are 25 assignments to be completed by the 25th of Feb, then an exam to be completed by the end of the month.  Assignments are 50% of your mark and the exam is the other 50%.

It’s alot of work, but I’m really excited at finishing this certificate.  The resources and information I’ve already learned are great!!  Quite useful for an advocate!  I have organized my bookmarks into folders and categories with each ‘topic’ and ‘field’ to help locate the resources much more quickly and easier.  I’m continually finding resources that will be very helpful when helping others.

There are other courses available, on other topics that are available to be taken, but only 8 are required for the certificate.  Aside from the Community Advocacy Techniques, being mandatory, you can choose from the rest of the list, courses you think will benefit you and be useful to the people you are/may be working with.

My first meeting with the Accessibility Advisory Committee for the city is next week.  I’m looking forward to that, meeting others on the committee and being able to have a voice on accessibility in the City.

As I mentioned in an earlier blog post, I was also going to tour a couple respite houses and see what they were like.  As of today, I have toured one and the other I will be touring next Thursday.  I know this is a good thing, it’s still going to take some getting used to, for myself and for Patrick, but I think it will be ok.  I’ve heard some nice things about the 2 remaining houses I’ve not seen yet.

I am also on a list to be called for a training date for our local Snoezelen Room.  The do the training once a month and I’m hoping the March date works out for me to attend.  February’s date found me already otherwise busy.  For those who don’t know what a snoezelen room is...

“Snoezelen or controlled multi-sensory stimulation is used for people with mental disabilities, and involves exposing them to a soothing and stimulating environment, the “snoezelen room”. These rooms are specially designed to deliver stimuli to various senses, using lighting effects, color, sounds, music, scents, etc. The combination of different materials on a wall may be explored using tactile senses, and the floor may be adjusted to stimulate the sense of balance.

Originally developed in the Netherlands in the 1970s, snoezelen rooms have been established in institutions all over the world and are especially common in Germany, where more than 1200 exist. The term “snoezelen” (pronounced /ˈsnuzələ(n)/) is a neologism formed from the Dutch “snuffelen” (to seek out, to explore) and “doezelen” (to doze, to snooze).

Ideally, snoezelen is a non-directive therapy and can be staged to provide a multi-sensory experience or single sensory focus, simply by adapting the lighting, atmosphere, sounds, and textures to the specific needs of the client at the time of use. There is no formal focus on therapeutic outcome – the focus is to assist users to gain the maximum pleasure from the activity in which they and the enabler are involved. An advantage of snoezelen is that it does not rely on verbal communication and may be beneficial for people with profound autism, as it may provide stimulation for those who would otherwise be almost impossible to reach.

Snoezelen is used for people with autism and other developmental disabilities, dementia, and brain injury.”

Knowing about this resource and having being able to be trained for the room, I feel will be a benefit to individuals/families that I am helping, should this be a resource that they may find beneficial.  Seeing and knowing what the room is like and does, will help me be more informed and perhaps alleviate any anxiety and/or answer any questions a family/individual may have regarding the Snoezelen Room.  :)

Next week is also the IPRC meeting at the highschool for Patrick.  Both Patrick & I will be in attendance.  We will be going over the transitioning for Patrick and picking his courses for the upcoming new school year.  Apparently, something all the highschools are doing now, is a $50 ‘student fee’ that is payable with registration.  I inquired what this fee was for and what it covered.  Some of the things included in that fee are a student card and a hard cover yearbook at the end of the year.  Ok…I can be cool with that  hahaha  :)

Once I find some time, I really need to sit and write about everything that happened and went on while Patrick was in hospital last fall.  I’m having a few concerns the past week that there may be some issues brewing again.  I’ve placed a call to the Neurosurgery team and am waiting for a phone call to update them and see what they’re thoughts are.

I will go into the rest later on…lunch time is almost over, its time to hit the assignments again.  I finished 2 more this morning! :)

Have a great day all!! :)