Archives for posts with tag: special needs parenting

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!

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I walked away from dropping my kids off at their first day of school feeling absolutely elated!  If any of you have been following along with my life, you will know that first days of schools have been nerve racking and stressful! 

My daughter, is entering grade 5.  She is one of the most beautiful people I have ever met.  She is strong, funny, independent, responsible and gorgeous.  I have no worries for her other than someone breaking her amazing spirit!

My boys, twins, are starting Grade 3.  They have Cerebral Palsy, and a Developmental Disability.  They are handsome, funny and loving.  They, however, are harder to read than a book in Japanese!  We have had our challenges!    

Each year, the first day of school brings nerves and apprehension.  Will their new teacher love them? Will they get good EAs?  Every year, so far, has been different, every year I’ve had to explain the boys.  I’ve made 1 page profiles, I’ve created behaviour plans, I’ve had Daddy stay the morning to make sure everything is good…

This year I walked up to the school and saw the same EAs, the same beautiful ladies, waiting for the bus to arrive to greet my kids!  I have never been more excited to see two faces than I was this morning!

Not to go on about how wonderful these ladies are (they really are), and how wonderfully they work as a team together AND with my boys…. But, as a parent, it creates this cozy feeling of comfort.  I DON’T have to explain mannerisms, communication, behaviours.  I DON’T have to wonder how their day went.  I KNOW that my children will come home happy.  I know that the respect is their between us all. And MOST IMPORTANTLY I know that those EAs are there because they wANT to be!

Being a special needs parent means that you have to let go of stuff you never thought you would.  I am relying on OUR TEAM to help support the boys as they learn new words, learn how to play with others, and learn how to use the toilet (among many other things).  Things I always thought I (with my husband) would be teaching them.

It’s one thing to see your children be comfortable and secure with their caregivers away from home, but it’s a completely different level where I feel secure and happy about where they are.

I thank all of the beautiful people (school staff, therapy team, recreational supports) not only in our lives but all of my fellow families lives, for being the compassionate caring individuals you were put on this earth to be! YOU ARE NOTICED and TRULY APPRECIATED!

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…

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!!!

As we go through life we morph into who we are meant to be.
We are the child our parents want us to be, we are the rebellious teen who are parents DON’T want us to be, we are the geek, the popular girl, we are academic, sporty. For the first 20 odd years we try to figure out who we are.
Add a few more events and challenges, and some of us end up as mothers.
Then, suddenly the person who you thought you were is once again challenged!
Becoming a mother creates this vortex of insecurities and worries, and changes how we act within our world, because now we’re not existing just for ourselves, but for our families.
I believe all my mommy friends will agree that we have those moments where we sit and scratch our heads and wonder what happened to the person we thought we knew, and wonder how we can be a new version of our old selves.
I think the important piece to consider is how to give ourselves the time to BE ourselves. To remember to do things for ourselves, things we enjoy, things to pamper ourselves. To BE our new mommy selves, we have to accept and LOVE our new lives and the huge responsibilities we carry, but also maintain enough of our OWN selves – be it old or new. To be happy with it all, we have to start with ourselves.
So ladies, book an appointment for a new hairstyle, call an old friend, find a new hobby (blogging is fun!), but remember to find the balance of old and new, just for YOU.
How are you balancing YOU?

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