Archives for posts with tag: cerebral palsy

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…

A very wise friend told my husband and I that having a child with special needs would cause us to be in an endless cycle of grief. At first, we thought this to be morbid advice, as grief is understood by most people. We didn’t understand it, nor were we ready to understand it in the early part of our life with twins diagnosed with Periventricular Leukomalacia, causing Cerebral Palsy.
Years later, I completely understand. Today, I fell into an inconsolable fit of grief over a phone call from the school saying they ran out of diapers for the boys. I was at work, and had to sheepishly ask if it was okay that I step out, to buy my 6 year old twins diapers, because it was kind of an emergency. I fell into all the various stages of clinical grief, through the denial “maybe they don’t REALLY need them”, the anger, and the sadness. I went through a whole slew of emotions surrounding the fact that no one else close to me has to bring DIAPeRS to their kids school! No one else I know has to interrupt their day to run to the store! I WAS CRYING OVER DIAPERS!!! DIAPERS!!! For God’s sake, I bawled like a baby in the car from the store, to the school, and back to work.
This may not be the traditional grief that everyone is used to hearing about, but it is grief none the less.
I grieve almost everyday for something that my family doesn’t have, or can’t do, or something my daughter experiences as the sibling of 2 brothers with special needs. I grieve for the boys and their frustration of lack of communication. I grieve because this isn’t what I pictured as a little girl. This isn’t the family that I had envisioned in my head.
Sometimes us Special Needs parents look haggered, and emotionless, and tough. It’s because we have to put up that front very often because every fibre in our being wants to break down and cry.
Which I do VERY often, because I would rather people see the emotion, and not see me as a tough stone like mom.
So if nothing else, know that we all have struggles each and every day. A smile can do wonders, and a hug can heal!

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.

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