Red Lights: A Record of Life's Defining Moments

Sentimental Sunday: More Commentary on "Life Goes On"

I finished watching the first season of "Life Goes On" yesterday night.  I really wish that the other seasons were out as I would love to see it all again.  Perhaps someday...

I had a few thoughts while watching the show but was most touched by the show with the dancing teacher who was getting old and had to be put in a care facility to ensure her safety.  Upon getting there, she was made to do all these childish activiies.  Corky questioned it and wondered why she couldn't do what she loved and teach a dance class at this center rather than playing simon says and bingo.

And although this is a show about the elderly, it made me imagine a utopic world wehre all people were allowed self-determination.  I had a meeting with one of my students, her parents and a representative from PDD the other day.  PDD is our government agency that oversees funding for supports that an adult with a complex disability may need.  This lady talked about how once this student was part of an adult program it was important to find and explore the things that she enjoyed doing and to allow her these choices.  I was thrilled to see that there were people in the handing-out-of-money positions who believed in what should be everyone's right: self-determination.

Transitioning three of my students out of my program this year made me realize that I need to do more within my program to expose my students to a variety of activities and placements that will assist in making the transition to adulthood and self-determination easier.  This is where my dream of working in more of a community exploration program for my class is coming from. 

I wish I could put in words the world that I envisioned as Corky asked why this lady couldn't just teach at dance class at the facility that she lived in.  It is not a bold or complex statement and yet one that we stumble across all the time.  We think that the structures that are in place in facilities are the ones that will remain in place and we need to make people fit in to them (or fit in to them ourselves).  Yet, we all have the power to change the world.. to share our talents and gifts and change the structure of what we belong to.  Wouldn't it be a wonderful world if we all remembered this type of flexibility and let organizations/facilities be structured by the very people that make them up?

Two Cent Tuesday: What is Susan Boyle just had a regular old singing voice?

I personally cannot stop watching the you-tube video of Susan Boyle at the "Britian's Got Talent" auditions.  From the snickers and snide looks to Simon baiting her to make her look even more ridiculous then what seems to already be the impression to the moment she begins to sing and everyone is stopped dead in their feet. 

As moving as the story is though it makes me stop and wonder what would have happened if she had begun singing and she was "just ordinary" or "not very good at all".  Would the snickers and ridicule and baiting have been "okay" in society's eyes?  Would it have just been chalked up to "good TV" and Susan would have gone home to her cat in her village?

It has made me think a lot about these types of reality TV shows and how for family entertainment they may be modeling behaviours that we dont' really want our children to learn.  Does someone ask for it just by going out to audition for one of these shows?

Good voice or bad voice, should she not be praised for trying to go and pursue her dream?  Good voice or bad voice, is it not okay for her to go and try to do what her mother encoruaged her to do from her death bed?  Do only people who have amazing talents deserve standing ovations and words of respect?

The story is incredbily wonderful as its exciting to see someone running after their dream and achieving it.  It was great to see the smug looks wiped off of people's faces, the surprise in the judges eyes.  It was wonderful to hear the apologetic words.  Yet its sad because the looks were there to begin with and it seemed to be okay for people to think and feel and act in this manner.

As a mother its hard for me because I don't know that Mikey will ever open up his mouth and have a voice come out of it that makes people stop dead in his tracks.  His biggest gifts are those that only those who are very close to him will ever see.  He will not be able to go on a stage to demonstrate them.  He will forget words when he is talking.  He will never be clasified by society's standards as "talented".

Is it okay for others to laugh at him when he tries to stumble towards his goals?  Is it okay for people to bait him or roll their eyes?

We have not yet experienced this a whole lot but it is always there as a fear in the back of my mind and my heart.

Although I'm thrilled that Susan opened her mouth and the voice of angel came out, I'm also concerned at what would have happened had the voice of a human come out instead.

I personally cannot stop watching the you-tube video of Susan Boyle at the "Britian's Got Talent" auditions.  From the snickers and snide looks to Simon baiting her to make her look even more ridiculous then what seems to already be the impression to the moment she begins to sing and everyone is stopped dead in their feet. 

As moving as the story is though it makes me stop and wonder what would have happened if she had begun singing and she was "just ordinary" or "not very good at all".  Would the snickers and ridicule and baiting have been "okay" in society's eyes?  Would it have just been chalked up to "good TV" and Susan would have gone home to her cat in her village?

It has made me think a lot about these types of reality TV shows and how for family entertainment they may be modeling behaviours that we dont' really want our children to learn.  Does someone ask for it just by going out to audition for one of these shows?

Good voice or bad voice, should she not be praised for trying to go and pursue her dream?  Good voice or bad voice, is it not okay for her to go and try to do what her mother encoruaged her to do from her death bed?  Do only people who have amazing talents deserve standing ovations and words of respect?

The story is incredbily wonderful as its exciting to see someone running after their dream and achieving it.  It was great to see the smug looks wiped off of people's faces, the surprise in the judges eyes.  It was wonderful to hear the apologetic words.  Yet its sad because the looks were there to begin with and it seemed to be okay for people to think and feel and act in this manner.

As a mother its hard for me because I don't know that Mikey will ever open up his mouth and have a voice come out of it that makes people stop dead in his tracks.  His biggest gifts are those that only those who are very close to him will ever see.  He will not be able to go on a stage to demonstrate them.  He will forget words when he is talking.  He will never be clasified by society's standards as "talented".

Is it okay for others to laugh at him when he tries to stumble towards his goals?  Is it okay for people to bait him or roll their eyes?

We have not yet experienced this a whole lot but it is always there as a fear in the back of my mind and my heart.

Although I'm thrilled that Susan opened her mouth and the voice of angel came out, I'm also concerned at what would have happened had the voice of a human come out instead.

Sentimental Sunday: My Big Boy!

Over the last couple of years that we have lived here, Mikey has developed a little friendship with a boy in one of the other condominiums here.  This boy, his mom, Mikey and I would meet out in the park and the boys would play while we visited.  A few weeks ago, this boy came to the door and asked if "Mikey could come out and play".  Mikey got his shoes and coat on and turned to me and said good-bye and walked out the door.  The message that I was not invited on this play date was loud and clear.

Invited or not, I stood in my front window with my own coat and shoes on.  I was on the ready to run out and go and get him if things did not go well. 

As the days went on and they did this a few more times, I began to relax and although I still watched mot of what was going on, I sat on my couch in my bare feet.

Then one day the ball went out on to the road.  I immediately stood up, got my shoes on and ran out the door all the time envisioning my impulsive little boy running out after it at the same time as a car would come speeding by.  Our front area is fenced with a low fence so you have to go to through a gate to get out.  Just as I got to the door, I stopped dead.  There was my little boy stopped the gate, not daring to go out while the other little boy went out, looked both ways and then got the ball and returned in to the fenced area.  There game continued, and I sneaked back in to the house undetected.

Mikey has always been incredibly impulsive and saftey awareness has been an ongoing issue.  When he was 4 years old, he left our backyard and walked down our back alley, across a busy street and about a half a block up to my parents house (with my knowing it).  When he was 6, I was working in the school after school and he went wondering around.  I went to look for him and could not find him anywhere.  After about 15 minutes of running around, a friend of mine came to school with Mikey in tow.  Apparently he had left the school grounds, crossed the street and walked the two blocks it would take to get to her house.  He rang her bell, she opened the door and he prompted walked in and turned her TV on (she has a great big TV that is ever so fun to watch).  For a while I had a STOP sign posted on the door in the hopes that he would gain some control over his need to go out our front door and down the block to check out the neighbors dogs that were often in their back yard.  It seemed I had to guard every door and never turn my back.

Mikey in malls and on shopping trips has also always been a challenge.  I cannot count the number of times that he would run off - times even when he was giggling thinking it was a great old game.  In the grocery store he has thrown and broken things and he has driven a cart right in to the back of another lady who was just minding her own business shopping.

I've always tried to find the balance between restricting him completely and giving him enough freedom to learn the skills that he will need in this world.  Yet there have been many times where I've thought that this is a losing battle.  We would practice walking - letting him get a bit ahead... me asking him to stop and then praising him like crazy when he did... and running after him just as crazy when he didn't.

The other day as we left the store and he was walking beside me without holding my hand ever so nicely.  He watched for cars in the parking lot and went and stood by his door when we got to the car until I could unload things and get the door for him.  In that moment I had flashbacks to the old "hand on the car" trick where again I would remind him over and over to wait with the hand on the car so that he would have something more tangible than just waiting. 

Then I opened the door, he climbed in and buckled up his seatbelt.  I closed the door and as I walked around the back I did a little victory dance.

The greatest gift that Mikey gives me each day is a reminder of what life is about.  Growing and learning and blossoming and celebrating... at whatever pace is right for each person!

I wanted to end this by saying "I love you baby boy" but I'm thinking "I love you big boy" is more appropriate :).

Two Cent Tuesday: Susan Boyle

Anyone who knows me knows that I can't resist throwing in my "two cents".  So I figured I need to set aside a day each week to do it.  And of course, I will probably not restrict myself to doing it only once a week.

Ironically the thing I wanted to give my two cents on kind of left me speechless so I will just share the best I can and borrow someone else's words to help explain my feelings.

Link: You Tube - Susan Boyle on Britian's Got Talent

This video has made its way around the world and I was incredibly touched when I saw it.  I tried to put in words what I was thinking as a result but really it just was what it was - a great feeling.  A feeling of watching someone doing something that came from their very soul.  There was also a beauty in the message of where beauty and perfection come from and what they are. 

One of my favorite quotes that I've seen about this whole story is the one that follows.

"Susan is a reminder that it's time we all looked a little deeper. She has lived an obscure but important life. She has been a companionable and caring daughter. It's people like her who are the unseen glue in society; the ones who day in and day out put themselves last. They make this country civilised and they deserve acknowledgement and respect.

Susan has been forgiven her looks and been given respect because of her talent. She should always have received it because of the calibre of her character."

Source: The beauty that matters is always on the inside...

Inclusion and "Setting the Direction"

I think I've mentioned in a previous post about "Setting the Direction".  Its an Alberta initiative to set a new direction for special education.  I have attended all consultations to this point (as well as read much of the material presented).  I believe that this is very much human rights driven and can agree with much of what is being put out there "in theory".

From the first round, the government came up with a set of "pillars" that special education should be built on.  I was a bit disturbed that they couldn't even go to the point of talking about "foundation" when they were looking a pillars.  It seemed a bit short sighted to build pillars that were not set on a foundation.  I'm sure I will have much to say about all this over the next few months as they finalize their plans and start implementing it all as early as the beginning of next school year.

One of the pillars is "inclusion".  Its an odd word really and when you talk to the regular education teacher about it, the definition of inclusion appears to be about the physical space that a child sits in for approximately 16 000 hours of their life (the time they spend in school).  Or to put in percentage terms, for approximately 2.5% of their entire life (based on someone living approximately 70 years).

It concerns me that this is often what the definition of "inclusion" gets reduced to.

We have an association here called the "Association for Community Living" whose mandate is to make people understand the bigger picture of inclusion. 

Mikey spends less than half of his time at school in what some would call "inclusion".  He spends no core academic time in a setting with the grade 4 class (the class he is a part of).  This time is spent in a setting that is much more suited for him on the learning front.  He is making great gains in this room and he has a teacher who has the time and resources to ensure that his curriculum is properly modified to meet his needs.  He works hard in this room and makes great advancements.

Yet... any student in grade 4 in his school knows htat he is very much a part of their class.  Mikey is never left out... and in fact most of the students ensure that he is front and center for everything.  This past spring he went skiing for the first time on the grade 4-5 ski trip.  When I picked him up, he was all smiles and giggles and a large group of students were gathered around him telling me right along with him what an amazing job he had done on the ski hill.

There was a time in Mikey's schooling where he would have been labled as "fully included".  His work was modified to work with the curriculum that the class was doing and he spent all of his time at school physically in the same space as his same aged peers.  Yet he didn't always appear to be included to me (or to him as his self confidence seemed to spiral to a point where he could not function well).

I think there are kids all over the board (in regards to what their "functioning level") is that can handle being in a group of kids all day every day and then there are ones that learn differently and need a different setting to learn.  Mikey fits in the later - partially because of his learning struggles but I think mostly because of his personality.  Its okay to learn this way.  I have just gone through conversations with people from our central office about the same issue for myself.  There has been a huge push lately for "professional learning communities" to work together on all professional development activities.  This is not the best way for me to learn.  Although I see the need for it in small doses, for me to really achieve any type of "professional development" I need a lot of reading and reserach time.  There is nothing wrong with this and I am not decreasing how much I'm included by doing this at times.  I still belong in the group we call "teachers" even when I find a way to learn that better suits me.

At this last round of consultations our group talked long and hard about the fact that language might be an issue in moving forward... that the word "inclusion" seems to have become about what physical space a child is in and the true definition gets lost.  We tried to come up with a new word.  We couldn't.  But it is something that continues to haunt me.  The word is just so steeped in misconceptions.

I guess I end this post by saying I am at a loss.  It is something that nags at me and I guess I just need to continue to explore it until it all makes sense.

Some thoughts about April 20

I know it is not quite there yet but wanted to post this while it was in my head.  April 20 is known by some to Hitler's birthday.  In "Cannibas Culture" 4:20 is considered a time to open smoke pot.  This time has been used in protests for many years.  Some link this to Hitler's birthday... other link it to a movement at a high school in California in the 70s - it was the time classes let out and also the time when students would meet to smoke pot. 

No matter what the date has significance.  In particular, it had significance for two teenagers in Colorado as they picked it as their date to attack their school back in 1999 - 10 years ago.

I remember the day well.  I was in the middle of my homestudy interviews to adopt Mikey.  I remember wondering if I really wanted to be a parent in this world. 

One year later (April 20, 2000) is the date that Mikey's adoption papers went before a judge here in Medicine Hat.  It was a day of celebration as we became bound legally as the family that we had been since the moment I found out about Mikey back in June 1999.  April 20, 2000 is one of the happiest and most significant days of my life.

On April 20, 2007, my father woke up and went downstairs in his home to do his regular exercise.  He came up quickly, telling my mother that he wasn't feeling well and he needed to go lay down.   My mother suspected something was horrible wrong and she phone 9-1-1.  My father had had a heart attack.  Suddenly I realized my own parents mortality.  My father stayed in hospital for just over a week and continues to live much of life that he had before this date.  But we all have become a bit more aware of the gift of life.

On a personal level, I have experiences two life altering events on this date and I know as the date draws nearer, I will be doing some reflecting on this.

Universal Design for Learning (UDL)

It started out as an architectural concept.  Universal design was meant to be making plans to ensure that all people could have access to all areas in any given building or space.  So ramps and elevators were put in.  It soon became evident that much of this was important for people other than those who were labeled "physically disabled".

And from it grew a concept now known as Universal Design for Learning.  It has grown from concepts like "differentiated instruction". 

Many of the workshosp that I've gone to over the past 3 years or so center around the concept of "Universal Design for Learning". 

Alberta Education has recently put out a document entitled "Setting the Direction: Towards a System Re-design" Discussion Guide.  In this guide, they define UDL as follows:

Universal Design for Learning (UDL) is a set of principals that guide the design of flexible learning environments, resources and activities to accomodate individual learning differences.  UDL is intended to increase access to learning by reducing physical, cognitive, intellectual and organizational barriers to learning, as well as other obstacles.  A UDL approach calls for creating curriculum, learning environments and resources from the outset that provide multiple means of representation to give learners various ways of acquiring information and knowledge; multiple means of expression to provide learners alternatives for demonstrating what they know; and multiple means of engagement to tap into learners' interests, challenge them appropriately, and motivate them to learn.

Sounds like the utopia of education to me and you can bet I will be writing more about it in days to come.  Just wanted to share it for now :).

Joy-Joy

I've been tagged by Betsy (Bits of Betsy) to share my story of the first person that I knew with Down syndrome.  Betsy's started this me-me herself after sharing a wonderful story about Jake.  Here is my story...

I grew up in a small town.  There were a couple of kids who I would see around town whose names were Suzy and James.  Suzy was much older and she used to come to the swimming pool when we were little kids.  Later, when I was a teenager, there was this cute little blonde boy who just seemed to be roaming.  He was a very independent little boy but would wonder in to places that we all knew one shouldn't wonder in.  Once there was a teacher who had bought a whole bunch of little bags of chips for the school store.  She left them in the backseat of the car through the morning with plans to go and get them at lunch time.  When she went out at lunch time, there was James sitting in the backseat with about half of the bags open munching away on the chips. None of us never got to really know either of these children as they didn't appear to attend school and once they got a bit earlier they simply disappeared out of our town.  I learned years later, after adopting Mikey that both had eventually went to live in group homes.  I am not goign to write about these people for my me-me as I never really knew them... I only knew of them.  I could not tell you much about them except that Suzy liked to swim and James like potato chips.  Instead, I will fast forward several years and tell you about Joy-Joy... the girl who changed my life.

When I was 23 years old, I moved to Kelowna, B.C. for my first fulltime teaching job.  I got the job about 4 days before I was supposed to start teaching and I frantically threw everything that I could fit in to my car and off I drove to my new life.  I was an extremely niave little town girl and knew no one in Kelowna but I was so excited to be facting this new part of my life.  Upon arriving in Kelowna, I stayed a couple of nights in a hotel while checking out "roommate wanted" advertisements.  By the time, I started teaching,  I was sort of settled in the place that I was going to live in.  Our first day of work was with just the staff and I quickly got to know a few of the people.

Within days of working there, I heard the story of how one of the men on staff had lost his son just that past April.  His son had Down syndrome and had died before his first birthday of heart complications.  I didn't think much more of it until just around Christmas, he announced to everyone that they were going to be adopting another child and this one would also have Down syndrome.  Eventually, some of the staff members put together a baby shower and we all congregated at their house.  This is when I met little Joy.  She was about the cutest little girl I had ever seen.  My first thought was related to her radiating sunshine.  As she was getting passed around all over the place, I didn't get to know her very well. 

The next time I remember being around her was our year end party in June.  We had it out at the beach and a bunch of the guys bought boats.  Joy's mom and dad wanted to go out on the boat and I offered to watch their kids while they did.  I ended up with just Joy as the other children went out with them.  Joy was eating a banana and we had our first interaction.  She reeled me in, hook, line and sinker!

That fall, I had to deal with something that involves someone else and is very private so I will not share the details here except to say that it threw me into a place of depression that I have never been in before.  The people involved in this situation were well known to both me and the family of Joy.  I was hundreds of miles from my family and it seemed that things progressed to the point that I turned to his family to be my suragate family in these times.  And they welcomed me with open arms. 

As I began to spend time with them, I got to know Joy much better.  She was an imp of a girl who made me smile when nothing else in the world would.  I would often watch her in my darkest times and be reminded that it was important to live in the moment and let things go.  There were days that I would get out of bed only after thinking about this tiny little girl.  It quickly became evident to me that I had much to learn from this little girl who many in society would deem as insignificant. 

Once Joy was old enough to swim, I would head over there at least once a week and pack Joy in my car and off we would go to the swimming pool for a swim.  Although for much of the week, I was in a state of depression, these times at the pool would heal and energize me and give me the power to keep moving through things.

A couple of years after having this family become my family in my heart, they adopted another child with Down syndrome - Christopher.  He also very quickly moved in to my heart.

It was this same family that first suggested to me that I should adopt a child with Down syndrome.  Its amazing how people move into your life at the moments that they are meant to.  And its amazing how one tiny little girl had such an impact on the path of my life.  Her name - Joy - is perfectly suited as that is what she brought to me in a time when I didn't know any other joy.

Age Appropriate

There has been much discussion amoung the learning assistants in my classroom of late related to the concept of age-appropriateness.  Its been interesting to listen to them while they speak about this during their breaks and down times. 

My class consists of students who range in age from 8 to 18 but developmentally can function as low as about 9 months.  These studnets osilate between teenage and toddler in their behaviours and interests. During leisure times, a student can be watching Barney one moment and getting her hair and make-up done the next... and find equal fascination with both activities.

I was thrilled to hear that all of the people who work in the room believe in the need for age-appropriateness on some level and I was also thrilled to see that they all came to recognize it as an issue that was not fully black and white as they began to discuss it.

There are many things that Mikey still enjoys that most almost 9 year olds would no longer enjoy.  He still would rather watch Barney and the Wiggles than things like Transformers and Spider Man.  Yet he knows htat wearing spinder man shirts will get more "wows" from his peers than wearing Barney ones and so tends towards wanting to wear those clothes that put him on par with his same aged peers. 

As the discussion continued into his third day this week, one of the assistants turned to me to see how I thought of all of it as I had just sat and listened to that point.  My response was one that I do not often give... that I wasn't completely sure of where I stood on it.  Before parenting Mikey, I would have had more difinitive views.  Somehow though, deciding what is appropriate or not approriate for someone no longer fits in to a conversation related to "age-appropraite" as if someone else is making the decisions than I'm not sure we can term it as "age-appropriate".  In the end, I said what mattered to me was that people with disabilities are treated in an age appropriate manner - that adults and teenagers are not disciplined as if they are children... that decisions are not made for those with disabilities... that discussions about a person's future include that person...etc. 

As for Mikey... I've decided that is age-appropriate for him to choose his own leisure activities... and if he chooses Barney then so be it!

Before I head to bed...

Mikey still sleeps with his little fists cuddled up by his face.  I catch my breath each evening as I open his door to peek in on him before I go to bed when I see him still looking so very tiny with his little fists right up by his face.  So much of the baby that I brought home over 8 years ago now is gone that when I find a glimpse of it, I hold it tight to my heart.

I have a few friends who have just had babies recently and it gets me to thinking of those first days when I had him at home.  It seems like it was only yesterday but here we sit just a couple short months from his 9th birthday... halfway to being a legal adult in these parts.  I have spent much time thinking about his future lately.  As he has grown up, I have learned that I am less and less confident about the road ahead of us and keep relearning the lesson of living in the moment that I'm sure I'm meant to learn.

The whole concept of living in the moment has been on my mind lately.  Its funny because its one of those stereotypes that I often cringe at but I was linking it to the fact that so many people view children with Down syndrome as so loving and forgiving and are fascinated by the fact that people with Down syndrome do not often hold a grudge.  As I watched Mikey struggle with time concepts the other day, I got to thinking that perhaps it is more related to this idea of living in the moment than anything else.  He does not stay angry beyond when that is finished (although sometimes it takes a long time for it finish) because he is in the moment.  The old red light rears its head again!

And with that said, it is time for me to get to bed.  Our week is much less busy but I have been doing battle with a fever and some type of cold/flu all day.  I'm hoping that I will feel better come morning so that I can go to work.  We will see how it all plays out :).