So I recently wrote a guest blog post for Bloom, a special needs parenting blog affiliated with Holland Bloorview Kids Rehabilitation Hospital. Find it here
I am completely humbled and amazed at the number of people that found the link and read it! Today, again, a colleague at work stopped me in a lunch room to comment on how much she loved the post and forwarded it to everyone she knew! Like, HELLO?!? Me? You read about me?!
I absolutely don’t write for the public, I honestly do not. I have found a quiet passion and hobby in writing. I feel that it is a beautiful avenue to express myself, and get all of these extra ideas and thoughts out! I’m not sure if it’s a “mom” thing, but I feel like with the endless ‘To-Do’ lists, appointments, schedules, my brain can’t handle extra things floating around!!! And I don’t always have someone available to chat with! This is my conversation. Sad, I know, but lately I’m beginning to realize that I’m NOT having this conversation alone.
In a world where we feel so isolated sometimes, as parents of Special Needs kids, admittedly often self inflicted, it is nice to know that I am being heard.
We all have stories to tell, we can all learn from those around us.
I am blessed to have people interested in what I say, and I thank you all!
I am living life with gratitude.

The WordPress.com stats helper monkeys prepared a 2014 annual report for this blog.

Here’s an excerpt:

A San Francisco cable car holds 60 people. This blog was viewed about 1,500 times in 2014. If it were a cable car, it would take about 25 trips to carry that many people.

Click here to see the complete report.

There is something powerful about getting in front of a group of people and talking about yourself. To be completely open and honest, and let people know what your world is like.
I’ve recently had opportunity to do so on a few occasions, and I feel empowered!
How else can we change the perceptions of others without allowing them to view ours?
You see, I’m not professing that I’m doing things right in my life, but I’m definitely learning to understand and accept myself!
I was asked to speak to a parent group, one for parents often just coming into the slightly intimidating world of special needs parenting. A friend, a local Social Worker, emailed to ask if I would be interested in coming and speaking on the month’s topic “Stress and Coping”.
For those of you who know me well, know about my stress levels, and probably had a quiet chuckle that I was asked to do this particular topic. I am open about my stress and vent to those friends I am comfortable with, as we all should.
I think we all have varying levels of stress, in different parts of our lives, and we all cope differently to each of those stressors.
My philosophy with stress is , that to truly cope with it, is to be true and honest about it. We need to know that we can’t eliminate all stress, but we can cope. We don’t have to always cope gracefully or quietly, but we can do things to alleviate most stress.
Now what I told these parents are tidbits of wisdom that so many parents before me, had passed down to me. Maybe I’ll list them for you:
*don’t sweat the small stuff, really- you have bigger things to focus on!
*don’t lose sight of yourself, your child, your family. What others label you or your child as doesn’t have to change who you are, whether individually or a “unit”. Make your new normal!! ( and try to LOVE it)
*its ok to feel sad, stressed, angry, etc! We’re still human! Nothing will change that. Dwelling on any of those emotions will only keep us longer from the BEST emotion – HAPPINESS
*remember who you are as a couple , minus the kids. It’s so easy to fall into “team” mentality, and lose sight of why you decided to create this crazy family in the first place. Make the time for you as a couple!!!
*find some time for you, and just you. You may not get the time to go for a run, or go to a yoga class everyday, and you may not get that nap you want, but whatever fits in that moment, during that day, do it!! It may be enjoying that piece of chocolate you snuck when the kids weren’t looking, or sipping a glass of wine while cooking….
And finally…
BREATHE. Just remember to breathe.

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.

I decided this summer that if I was going to stay sane, and ultimately everyone else ( because of course I am the centre of the universe, lol), I needed to seriously consider doing things for me. Yep people, we, as mothers (and fathers) can do things for ourselves. From a personal perspective, it’s not only important but necessary.
My job allows me to be off the entire summer with my children ( gotta love school boards), but that means 9 weeks of 24/7 mothering, no day job to break up your day.
I know some mothers are completely capable and thrilled to do just that, but I recognize that I AM NOT the stay at home type! Don’t judge me, I don’t judge you.
This summer I made one of the best purchases ever! FOR MYSELF! I bought myself a Stand Up Paddleboard (SUP). I have wanted one for years, and this year I got one!! I haul that thing everywhere and use it for whatever time I can hop on it. I feel free! I feel adventurous! I feel rejuvenated!

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If I could make a recommendation to any parent, please, find something you enjoy and embrace it!!!
I also decided I was going to amp up my golf game… prior to children I golfed a few times a year. After children, only once a year… This past spring my mother bought me a voucher pack for the golf club (literally in my backyard.) I’ve been golfing AT LeAST once a week and LOVE it (but hate it it, don’t get me wrong!) this is something that I do! ME! It totally helps that it’s 4 hours away from my family!!
What I also did was enrol my daughter in a kids clinic so that she could learn how to golf. Then it’s something we can do together!
I think we all need to find balance in our lives, and I’ve written about it before. We need to make sure that we don’t forget who we are! How can you show your child the world if you don’t show them what makes YOU happy?!?
Trying to live a more balanced life has allowed me to become happier as a mother!

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(My daughter learning her swing!)

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!!!

There is an element of positivity you need to adopt when you’re a parent of a child or children with special needs. If you don’t try to put a positive spin on things, you would cry over everything.
For example, one of my boys came home the other week with MAJOR road rash on his face and knee. The teacher sent me a message to tell me that at the end of the day he was excited to be outside with his class and was running and fell on the pavement. I could have been upset about the fact that he had horrible scrapes on his face, but I thought ” hey! He was RUNNING!” Something we weren’t sure he would EVER do since being diagnosed with cerebral palsy several years ago.
Today, I sat in the school library, during the boys kindergarten celebration ( the school has historically not done a graduation), and I sat and cried. Most of the moms were crying because their babies were “graduating” kindergarten, I cried because it was one of the moments where I realized how DIFFERENT my boys were from their peers. While the other kids sang song and recited poems, my boys smiled at the crowd of smiling faces and squealed. It was a very difficult moment for me, seeing what other peoples “normal” was.
I LOVE my boys, and I LOVE what they bring to the world. They bring strength, and love and humour, but they are definitely different.
I guess my point is that although I look at the positive in my life, it’s difficult, it can’t always mask what’s REAL.
* note that I don’t feel this complete but need to get this piece out!!!

Cristian Mihai

good_writersWhen I was sixteen I thought I was a good writer. I had won a National writing competition with a magical realism novella, and the sister of a long dead, famous Romanian poet we were studying in high-school told me I wrote just like him.

This kind of gets to your head, especially at that age. This novella I had written received lots of praise from some of the best writers in the country. Published writers, award winners, people who owned publishing houses. And most of them didn’t even know I was only sixteen.

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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.

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