Archives for posts with tag: cerebral palsy

I put off watching the movie Wonder for a long time. I don’t think it takes a rocket scientist to figure out why. I knew this movie would potentially hit me HARD.

My daughter convinced me to purchase the pre-release and have a movie night.

Part One

I was instantly hit with emotions and ones that I didn’t expect. I surprised myself by instantly judging this family for homeschooling their son for so many years, and THEN deciding to integrate him into middle school.

I was thankful for the strength and support we received when registering the boys for school, and that the idea of keeping them home never occurred.

What I’ve learned, and what I feel we’ve done right, is building an accepting and open, honest relationship around the boys and school. Inclusion isn’t even a term we use anymore, it’s a way of being.

The students are excepting of the fact that the boys are different, and I truly believe that they are all more tolerant of each other because of it. They have grown with understanding that we all bring unique strengths and needs to the table and everyone has value. These kids love and support my guys and want them included in everything, and do their best to make it happen.

The benefits of having “Special Needs” kids included in mainstream education far outways any reason not to, in my opinion.

Part 2

The other thing that really hit me with this movie was the sibling piece. My heart used to ache for our daughter. One of my most painful days was when she exclaimed, “Why can’t my brothers be like everyone else’s brothers!”

The impact (in the movie) on the sister was visible.

We’ve always made certain that our girl was never given responsibilities out of normal sister responsibilities. Although she retrieved diapers and wipes for us for far too many years!

We’ve always tried to make her feel special in her own right, but she’s taken the back seat time and again. She’s become (or maybe always has been) one of the most beautiful, compassionate and kind people I know. The more we move on this journey, the more I know we’re doing ok, that she is going to be okay. I’m confident that we’ve given her the tools she needs to continue to be an awesome person!

The movie depicts some jealousy or resentment perhaps, and I don’t doubt that will happen more than a few times in our girl’s life. I then think to “normal” sibling relationships and am pretty sure that’s happening in those ones too!

Putting it altogether, this movie pulled and yanked at my heart, I think because it was so true to the emotion I have felt in the past 10 years. I appreciate that it has provided a perspective to those not in this world, a tiny glimpse into what a rollercoaster we ride.

And what a ride it is!

Advertisements

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.

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.

%d bloggers like this: