Archives for posts with tag: family

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.

Advertisements

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…

* bloggers note-After hitting a slump in blogging I asked my friends to write my first line for me.  

The best part of my day is when I sneak upstairs and check on the kids before I head to bed myself.  I love creeping up to the edge of their beds, to see their content little faces snuggled into the pillow.  

Jeff (my husband) used to tease me, because even after I’d gotten into bed, I’d run up to their rooms just to tuck them in one last time.  

Our days are so hectic sometimes, that I want to make sure they get one last little kiss, and a whispered ‘ I love you.’  It’s also the time where I see them at their sweetest.  Macartney often has her stuffies tucked around her, and a look of such contentment, that it lets me know that she had a great day.  Very often, it’s when I witness the special twin bond that the boys share- they’ll either have snuck into one bed, and are snuggling, or simply sleeping in twin unison- in perfect twin form across the room.

Seeing them all, resting peacefully, reminds me that no matter how busy and crazy our lives get, we make it through, another day will come, and that our lives are a blessing, because there are three beautiful babies I get to kiss goodnight.

I’ve often been told that my husband and I are the “right fit” for having kids with disabilities…. I’ll let you ponder that statement for a moment…
Now, I can completely understand where people are coming from when they say this, because my husband is a Developmental Services Worker, who works with individuals who have intellectual and/or physical disabilities. I, myself, work with children of all abilities, to provide intervention to improve their communication and language abilities.
So, on paper, in technicality, I guess, yes, we are qualified to handle kids with disabilities.
I don’t want to offend anyone who may have told me this in the past, because, truly, I understand the sentiment, and I understand it’s difficult to say something, in fear of offending me (I’m a little sensitive at times.)
But …..I’ve thought about this statement over the last few years, because every once in a while, it pops up again.
I can tell you, no matter what type of education and training you have, you are never ready for ANY child, let alone, a special needs child.
I believe we ALL have the capacity to love unconditionally, no matter how our children grow. We love them through thick and thin.
I’m sure any one of you could raise a child with special needs. It would be much different, but… You could do it!
I can’t tell you how life is WITHOUT because I don’t know, but it’s not really that different. Yes, you look around and wish your kid wasn’t the one wearing diapers. And, you wish that your child could play more independently without worrying about his safety. Most of all, you wish your child could tell you what’s wrong and how his day is going.
But I can tell you something that I think we all do, and most of us do really well!
We SURVIVE!
We are all flying by the seat of our pants! None of us know what tomorrow will bring, none of us know how we will react in a new situation. ALL of us DO HOPE that we are doing the BEST JOB WE CAN, and our children become the best human beings they can be!
I thank you all for the confidence you have in me (and my husband), but really I have full confidence that you would deal, and will deal with what gets thrown at you too!!!

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.

20140227-183810.jpg

It’s so easy to get caught up in life and forget the simplest things. Stop and take a moment…
Every morning when I wait for the bus, I hope that it comes during a quiet moment. I live on a “Main Street” and there is always traffic. I used to panic about holding people up as I loaded my 3 children onto the bus safely.
My boys, in case you’re new to the blog, have Cerebral Palsy and a developmental disability. They learned to walk a little over a year ago (they’ll be 6 next week), and they were granted bus privilege 3 months ago. Of course, living in Canada, means they have a daily workout to climb onto the bus in all I their snow gear!! As easy as it would be for me to carry them onto the bus, it’s important for them to maintain their independence and make effort with this task.
This process usually only takes a few minutes but some days we have dozens of cars backed up either way.
One day I started to give a wave in every direction, as a simple thanks (I discovered recently that my husband does the same thing!)
My purpose for this is to hope that those people who may be grumbling about their ride to work being delayed, will give a small smile, knowing that I appreciate their patience. I wish I could stand at the end of my driveway with a sign “If you only knew what a great accomplishment this is, it would melt your heart.”
By living with gratitude for the small things, life feels lighter.
I think the more people and things we are grateful for, the more people feel appreciated, even for the small things, like waiting for a family waiting to get on the school bus…

%d bloggers like this: