Archives for posts with tag: community

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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My poor husband wonders when I ever quit… I join committees and councils and Boards, on top of working, and being a mom, and trying to be a good wife.
It’s literally in my blood. I have always known the importance of volunteerism, my grandparents were always heavily involved in the Finnish and church communities, my parents, likewise.
Lately, my involvements have been centred and focused around how to build positive and great communities for my kids. How can I make sure that their paths are wonderful?
I joined the parent council (or PTA) at the school when my oldest started school, I joined the Family advisory council shortly after my twins were diagnosed with a disability. My passion is to ensure that my voice and my family’s voice is heard and we are a contributing piece to how our life unfolds.
Today brought this great sense of community into fruition.
I joined my children’s school in a beautiful ribbon cutting ceremony in celebration of the hard work that over 200 members of our school community put blood, sweat and tears into. A complete playground makeover, including gardens, old equipment, new equipment, sod and rock! What amazing feeling to witness such an amazing transformation amongst so many people with the same vision: a beautiful, safe place for our children!
Then later in the day, I sat in a room with a group of strong, powerful women. We women have one strong connection, we have children with special needs. We all walk different paths, but the same in the sense that our children pose unique challenges and diagnoses.
We wanted to create an event where we moms could network and chat and enjoy a few hours from our “lives.” I am pretty sure that it turned out to be a success!
My life has been so blessed with these communities of people.
If I could pass on any words of advice to anyone, build your communities, keep your eyes open and keep yourself involved!
Your life is what you make it. Make it the best it can be!

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