Day 57 - Isolating a Child with Disabilities Can do Lifelong Damage

Just read an amazing article entitled "Isolating a Child with Disabilities Can do Lifelong Damage".  To read, click here.

The end of the article is what most struck a chord in me.  I count myself lucky that Ciaran and Shay live in this day and age where children with special needs are more accepted and embraced.  That being said, this in no way takes away from my fear and anxieties that they will be defined by their disabilities or their equipment now and in the future or that they may be socially isolated by others because of their disabilities.

The more I think and worry about it, the more I realize what happy and inspiring little souls Ciaran and Shay are.  Their attitudes towards their challenges make me want to be a better and more determined person on a daily basis.  Their love for life and learning is contagious.  How then could others isolate them?  I am learning that isolation is a result of "ignorance".  The "ignorant" children and parents are not ignorant in the negative sense of the word.  They just don't know perhaps how to interact with someone that is different.  I genuinely think that the isolation occurs sometimes for this reason more than any other.  Looking back on my own life, I can remember a number of peers/colleagues that I didn't interact with as much as I could because I didn't want them to feel different or I didn't want them to think I pitied them.  Looking back, I was so in the wrong.  In trying to be empathetic, I was actually isolating.... Because I was not exposed to children like Ciaran and Shay when I was a child, I never got the lesson that individuals like this were actually exactly like me - in nearly every sense of the word.

So a big job in the upcoming months, years, decades is to help others realize how normal kids with special needs are. They really are just like any other kid. They have more obvious struggles than most - but they don't necessarily have more - their struggles are just more evident to the human eye.

At the end of the day, my number one priority is that Ciaran and Shay remain happy, go lucky, confident and determined little things who always strive to be the very best they can be.  As the article outlined, children with disabilities are far from weak - Ciaran and Shay are actually two of the strongest people I have ever met in my lifetime.  I often wish that I could be a little bit more like them.  I have worked with children with special needs for over fifteen years now - I have always been empathetic and compassionate but I can say wholeheartedly - I had NO idea what an incredible journey each of the kids had been on to have gotten them to the place they were at, at that moment in time.  Perspective.

I think I could go on and on.  But I won't.  I will finish in saying - Ciaran and Shay, I hope that you continue to shine so brightly.  I am so proud of both of you and am so in awe of you.

Day 56 - JOY

The boys had an absolutely amazing day today.  Tina came over with Ericka and Alessio.  They showered the boys with love and attention and Ciaran and Shay completely ate it up.  The pictures tell the story much better than I can.  I think the name 'JOY' for this post is so evident in the pics below.

Thank you to the Lunas for an awesome day!  We love you!!!

Day 55 - Dreaming of Summer...

We were supposed to have a snow day today.  We were supposed to get snow and freezing rain.  It didn't happen - so I am cheating and using a picture Cris took last week of the backyard of a winter wonderland...except, I am not digging this winter wonderland.  I know we have had a great winter but I am done.  I'm sick of snowpants, jackets, hats, mittens and boots everyday.  It gets so tiring and adds so many minutes to getting out the door every morning.  Bring on the spring, bring on the spring!!!

Day 54 - Good people

Jessica came over today.  The boys adore Jess.  They haven't seen her since the beginning of the summer, but the minute she walked through the door, it was as if no time had passed.  Seeing Jess, and the boys reaction to seeing her really got me thinking..

We have sooooo many amazing people involved in our lives.  Ciaran, Shay and Rowan are so blessed to have so many quality people who take a huge interest in their lives.  It's inspiring really - they are growing up with role models of all ages.  They are loved.  They are cherished.  They are respected.  They are happy.  They are in love.  There are so many incredible people who are helping to shape our boys - and we feel beyond lucky that each and every one of you take such an interest in our boys - it makes a significant difference - you bring joy, love, and confidence to their lives and for this we are so appreciative. 

Day 53 - The Lokomat

Yesterday was a pretty cool day for Shay and I.  We were invited to be involved in a training session at Bloorview Hospital for the Lokomat Treadmill which is a 500,000 piece of equipment.  An amazingly inspirational foundation called Three to Be (for more info click here) raised enough money this year to purchase a Lokomat for Holland Bloorview to research the benefits of use for children with neurological mobility impairments.  Unfortunately, we are not able to be in the study as we are not affiliated with Bloorview - but it was exciting to at least have a chance to give this incredible piece of equipment a shot.  As per usual, Shay was pretty incredible.  The equipment and cameras were pretty intimidating, as was the fifteen plus people being trained in the room.

I have some really cool video footage but the file is too large to download onto the blog.  I will get my IT guy on it :) 

Day 52 - Worth every penny!

The new GroClock that we bought last week is a sure hit.  For the past week, Shay has NOT gotten out of his bed once in the middle of the night - hurray!!!!  He has woken up a few times and called for us - when we got to his room, he asked for water and all was good.  The latest solution is a bottle of water beside his bed.  Life is so much more manageable when we have all have a good night sleep :)

Day 51 - Family Day - A day in pictures...

Today was Family Day.  Today it was just the five of us.  We had an amazing day.  We kept ourselves busy - playing, learning, laughing and loving.  I love days like this - it was absolutely perfect.

Day 50 - Adelaide and Orion's 1st Birthday

Today we went to our friends John and Michele's twins first birthday party.  They had a pool party at Variety Village in Scarborough.  The venue was awesome! Made life so much easier yesterday having such an accessible building. We see more and more how much this makes a difference in the boys dispositions when we are out - they love their independence as they just want to run around and do their thing just like everyone else.

I included a pic of the Value Village sign - I love how they preface their services for people of all abilities...such a positive spin.  I find I get very frustrated these days when less positive politically correct terms are used to describe differently abled individuals - I am sure I am just more sensitive than I used to be, but sensitive I am and sensitive I will continue to be...

Day 49 - Visit with some of our favourite people

We had an impromptu visit with a few more of the boys' favourite people today - Mark and Marcy.  The boys were beyond excited that Mark and Marcy came for a visit to play with them.  It's funny - when "our" friends come over - the boys automatically assume that "our friends" are here to play with them for the day.  And to be honest, the type of friends that we have - that is exactly what always happens :)

Lucky little people!

Day 48 - Happy Belated Birthday Bev!

Happy Belated Birthday Bev!  We love you more than words can say.

Day 47 - Poignant

No picture today - just a quote that really resonated with me. 

Day 46 - Hopefully a solution to sleepless nights...

Shay has had a number of sleepless nights lately.  Last night, he was up from 2am to 5 am.  His legs are  starting to get really tight and his tone is starting to kick in more and more even in his sleep.  I think that his tone is twitching him awake sometimes.  It also does not help that he is congested and has a bad cough.  Poor little man!!!

When Shay wakes up, he takes it upon himself to climb up the stairs to let Cris and I know that he is up.  Hence keeping us up too.  Today I found a perfect solution - the Gro Clock.  The Gro-clock uses fun images of the stars and sun to communicate when to go back to sleep and when it's time to get up.  It is set to be a blue background and a star - when it is nighttime and Shay and Ciaran should be sleeping.  In the mornings, when the clock turns yellow and they see the sun - it is their cue that it is time to get up to enjoy the day.

It is a brillant idea!!!  The question is - will it work for the boys???  Shay clearly understood the concept tonight - I guess time will literally tell if the clock is a hit or a miss.  Wish us luck!!!

Day 45 - Happy Valentine's Day!!!

Valentine's Day was sweet this year.  The boys were beyond excited to look through their Valentine's bags and to read their Valentines.  Let me correct myslef, Ciaran loved reading his Valentines - he knows how to spells all of his classmates names - so it was quite cool watching him pick up each Valentine and read who it was from.  Shay on the otherhand was more enticed by the candy - I have always said that they are completely different beings :)

Day 44 - One of these things just doesn't belong...

Can you guess who is not sporting a new hair-do?

Day 43 - Are you serious?

I can't leave Rowan alone for a minute.  He is constantly on the move and is always one step ahead of me.  We have some serious baby proofing to do at this house.  A priority on our to do list!

Day 42 - On Saturday we swim :)

Saturdays we have our swim lessons at the YMCA with Sam and Shauna.  The boys look forward to Saturday all week.  The girls are fantastic with Ciaran and Shay - we are so lucky to have so many amazing resources for the boys right within our community!!!!

Day 41 - A visit with Ovo

Today Rowan and I went to Toronto Grace Hospital to visit Cris' Dad who is palliative care there.  Rowan and his Ovo spent nearly an hour of quality time together.  For a whole hour, Rowan sat in his Ovo's embrace and smiled at him, danced for him, hugged him, rubbed his leg, and snacked while his Ovo took a few cat naps.  It was a pretty incredible experience really - Rowan does not usually sit still and today he did for the entire visit.  He was calm and attentive almost as if he knew his Ovo was sick and his time with him was very important. 

I am so glad that I had a chance to go and visit today.  With all the bugs in our house, I have not seen Cris' Dad since Christmas.  Fortunately Cris has been able to go and visit him a couple of times a week and brings one of the boys down to visit on weekends.  Ciaran is obsessed with his Ovo.  He can ask over 100 times in a day about his Ovo - it is very endearing.

Ovo absolutely adores his five grandchildren.  When Ciaran and Shay were young, he would steal them off to another room so he could play and laugh with them.  Watching Ovo with any of his grandchildren always warms my heart.