Archives for posts with tag: disability

Hi. I used to be like you. I was impatient. I hated waiting. I needed to move. Lines were a peeve. Slow walkers drove me nuts.  And don’t get me started about slow drivers!

Then I became a mother. My first child, our gorgeous daughter taught us that we may not get places on time.  She ran the show.  We learned that babies held power. If we didn’t get home at bedtime, there was no bedtime!

Then we had the boys, our identical twins.  They came early, but time slowed down. 

We waited patiently for them to eat and grow. We waited patiently for them to get strong enough to come home.  We waited 4 weeks and 1 day.  If you’ve never left your children behind, you won’t understand this pain. 

When we brought them home finally, we waited… we waited for them to reach milestones.  They didn’t reach them.  We waited for referrals to doctors.  We waited and waited.  They started hitting milestones. Sat up at 15 months…. commando crawled at 21 months… we waited… we waited for a Doctor to tell us at 26 months that they indeed had a Cerebral Palsy – Periventrucular Leukomalacia to be exact.

We then waited some more.  These boys have taught us more patience than anyone can ever imagine.

We waited for them to stand.  We waited for them to walk. We waited for the walkers we had to order to help them to walk. We waited for them to talk. We waited for leg braces. We waited for meetings for school entry.  We waited for more meetings. We waited for the cab that would drive them to school because they couldn’t walk. 

During all of that waiting… we WORKED HARD… really, really hard.  

We watched our boys take their first steps well after their 4th birthday… we watched them walk away from their walkers.  We watched them learn to climb stairs.  All with tears in our eyes.

We cried because we were told that they may never be independent, never walk, never talk.

They now walk  and run and jump and climb stairs… we are still patiently waiting for them to talk so that people understand…

They now ride the bus!

They get tired, really, really tired from all of the work that they do at school.  They LOVE riding the bus.

Which brings me back to you.  Mr. Impatience.  Please. Please don’t yell out of your window at us.  We are moving as fast as we can.  We are trying our best. As the parents of Drew and Dean we are so thankful of the 98% of commuters that appreciate that some kids are slower to get off the bus… but you, the one guy in line who yells at us… you ruin our moment. 

If I can ask of nothing else, please have patience for kids getting off the bus.  Not just mine, but all of them.  Show kindness and patience.  It will change your life.

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I find myself opening up to complete strangers, with their questions and sympathy, and find it quite normal now.

A conversation, whether it be at work, in a staff room, with another parent, at a hockey game, in the grocery store, usually starts out with talking about kids. It then turns into age comparison, then I reveal that I have twins (insert halo above my head and twinkling stars), then comes the twin fears and wonderment… “Oh you’re busy!” “Are they identical!?” “Boys! Twins!” Then come questions like “Do they play sports?” That’s when I, again, “reveal” that the boys have Special Needs (insert BIGGER halo and more twinkling stars!)

I get the “God Bless Yous”, and “oh, I’m sorry to hear that” and the occasional mortified “oh..”

I’ve grown to live with that.  As a society, as humans, we are curious.  Society hasn’t “lived with” Special Needs individuals for very long.  We just DONT know.  My generation is probably one of the first to have some students mainstreamed, but barely any.  Institutions have just recently shut down in my home province of Ontario, leaving adults who were secluded, now living in smaller group living residences where they have the ability to venture out into the community with support.

My daughter’s generation will be the most empathetic and compassionate generation yet as kids with Special Needs are just the other kids.  The kids with differences.  My boys are just Drew and Dean, and they’re silly and loveable!

I appreciate all conversations despite how offensive they would seem to anyone listening.  Those questions are honest and difficult, and through honest conversation comes awareness and understanding!  Think, if you were always afraid to ask a question, you would never learn!  We as parents of Special Needs kids have a great power to educate society!  Don’t get defensive or offended if someone asks you if your child can walk, or talk, or make friends, or have a good life!  Teach, inspire, create growth in our society who is still learning how to incorporate ALL individuals into daily life. Integration into society is less than 40 years old…

All of our conversations are important and insightful and learning opportunities!

We are shaping the world for our children…

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I’ve written before about inclusion. I’d like to take the opportunity to bring it up again, seeing as February is “Inclusion Month.”
The term inclusion to me is tainted. It comes with so much confusion, and anxiety, when really it is SO SIMPLE!
My definition of inclusion is this : treat everyone as though they have something to contribute to your life and society around you.
Inclusion doesn’t need to be muddled with policy and paperwork and all of that jazz!
Inclusion is understanding that not everyone will be a rocket scientist, a star athlete, an ‘A’ student, a public speaker, a janitor, a McDonalds burger maker!
We all have our place in society, we are all different, we are all raised differently, we all have something to contribute!
I support “inclusive education” for my boys because, although they don’t follow typical curriculum, and can’t skate with the class, and can’t tell anyone what their favourite toy means to them, they are providing everyone around them a sense of life without a voice and limited motor abilities. They are living life with COMPLETE joy. They demonstrate LOVE for EVERY. SINGLE. HUMAN. BEING!
This generation which we are raising will be the MOST tolerant yet!! They will understand and whole heartedly accept that WE ARE ALL SPECIAL!
I am so grateful for my family every single day. Even though there are great challenges, I know that I am surrounded by something special.
I know it is difficult to change the misconceptions and attitudes we have been raised with, but understand how simple the term is.
Please, I ask, ponder it for just a moment and share the word.

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A popular term or phrase in the last decade or so, has be “inclusion.”
To every single person, it can mean something different, and in every context as well. I don’t want to get into the technicalities or definitions of inclusion, but share perspective.
I recently had a conversation with a fellow PTA mom at my kids school. After an afternoon of telling our story ( we had never had a moment for her to ask her questions), she paused.
She asked, “Can I tell you something?”
I urged her to do so.
She told me that she was so thrilled and honoured to have her daughter in the same class as my boys and her other children in the school. She explained that my boys, and my family have given her family a great gift of understanding and compassion that no one else could teach. No teacher or no program could give her daughter that.
THIS is what inclusion is about in my books.
NOT my boys being a involved in something, BUT others being involved in my boys.
NOT my boys working themselves into a world they don’t fit into always, BUT others understanding and learning and taking something from THEIR evolving worlds.

There is an element of positivity you need to adopt when you’re a parent of a child or children with special needs. If you don’t try to put a positive spin on things, you would cry over everything.
For example, one of my boys came home the other week with MAJOR road rash on his face and knee. The teacher sent me a message to tell me that at the end of the day he was excited to be outside with his class and was running and fell on the pavement. I could have been upset about the fact that he had horrible scrapes on his face, but I thought ” hey! He was RUNNING!” Something we weren’t sure he would EVER do since being diagnosed with cerebral palsy several years ago.
Today, I sat in the school library, during the boys kindergarten celebration ( the school has historically not done a graduation), and I sat and cried. Most of the moms were crying because their babies were “graduating” kindergarten, I cried because it was one of the moments where I realized how DIFFERENT my boys were from their peers. While the other kids sang song and recited poems, my boys smiled at the crowd of smiling faces and squealed. It was a very difficult moment for me, seeing what other peoples “normal” was.
I LOVE my boys, and I LOVE what they bring to the world. They bring strength, and love and humour, but they are definitely different.
I guess my point is that although I look at the positive in my life, it’s difficult, it can’t always mask what’s REAL.
* note that I don’t feel this complete but need to get this piece out!!!

The reason I advocate for my children is to eliminate speculation. I want to tell people who we are, so that judgement isn’t passed on to us unfairly.
I advocate so that people don’t walk away saying “wow, what’s wrong with them?!”
My own fears bit me in the butt the other day.
I met a woman in a wheelchair, she was probably over 300 lbs. after speaking to her for some time, she told me that she has a disease (that I cannot remember), that causes her body to retain fluid and create fluid around her organs. She painfully told me that people assume that she is “fat” because she eats too much, but explained to me how her body and this disease is failing her. She brought to my attention how “the system” greatly supports children, but she struggles as an adult to receive all the supports she needs.
I walked away feeling educated. I walked away feeling ashamed.
If someone who works so hard to advocate for the lives of others, can make such a harsh judgement, it scares me to think of society as a whole.
If I’ve learned anything it’s to not pass judgement.
We have NO IDEA what a person has been through, or the path they’ve walked. Please give everyone you meet a second and third chance.
We all have our struggles.
Everyone walks their own path, everyone needs special attention. If we were all meant to be the same, we wouldn’t have been brought into this world different.
Wouldn’t it be grand if we all accepted each other for face value? If we didn’t have side thoughts, if we didn’t pass judgement…
Hopefully I, myself, have learned from the experience, and I have changed the opinion of just ONE other.

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