Archives for the month of: June, 2014

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.

My poor husband wonders when I ever quit… I join committees and councils and Boards, on top of working, and being a mom, and trying to be a good wife.
It’s literally in my blood. I have always known the importance of volunteerism, my grandparents were always heavily involved in the Finnish and church communities, my parents, likewise.
Lately, my involvements have been centred and focused around how to build positive and great communities for my kids. How can I make sure that their paths are wonderful?
I joined the parent council (or PTA) at the school when my oldest started school, I joined the Family advisory council shortly after my twins were diagnosed with a disability. My passion is to ensure that my voice and my family’s voice is heard and we are a contributing piece to how our life unfolds.
Today brought this great sense of community into fruition.
I joined my children’s school in a beautiful ribbon cutting ceremony in celebration of the hard work that over 200 members of our school community put blood, sweat and tears into. A complete playground makeover, including gardens, old equipment, new equipment, sod and rock! What amazing feeling to witness such an amazing transformation amongst so many people with the same vision: a beautiful, safe place for our children!
Then later in the day, I sat in a room with a group of strong, powerful women. We women have one strong connection, we have children with special needs. We all walk different paths, but the same in the sense that our children pose unique challenges and diagnoses.
We wanted to create an event where we moms could network and chat and enjoy a few hours from our “lives.” I am pretty sure that it turned out to be a success!
My life has been so blessed with these communities of people.
If I could pass on any words of advice to anyone, build your communities, keep your eyes open and keep yourself involved!
Your life is what you make it. Make it the best it can be!

Yesterday I may have experienced one of the most powerful things in my life yet. An ENTIRE school community, came together to “makeover” our school yard.
The school community has been working EXTREMELY hard to raise funds for much needed playground equipment, and everything came into fruition yesterday.
I walked around in awe at all the hands, shovels, rakes, donations of time, labour, material. Together we were building a beautiful place for our children to be when not at home. Together we accomplished something great!
I applaud all of those who raised funds, gave donations and worked so selflessly to make this happen.
It takes a village to raise a child, and I am so proud and grateful that my children are part of THIS village!

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