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Epilepsy
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Disabilities Are Not “Special Needs”
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Are You Happy? If Not, Why?
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25 Quotes About Parenting A Child With Disabilities
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It’s Important To Protect Your Blog

Epilepsy

Sometimes I forget our daughter has Epilepsy. But only for a second. We’re incredibly lucky her seizures are suppressed by medications, but it’s impossible to forget the traumatic years when they were not.  Avery’s first major seizure happened when she was three and a half. I shared the story of what happened in every painful detail. I’m sharing the link again HERE. Even after all this time, I find it difficult to read. Even though it was nearly eight years ago now, those seizures just before Avery turned five were brutal.  Every year since she has an EEG to assess the seizure activity in her brain. And every year while we wait for the results we hope for the news that there is no seizure activity or that the electrical abnormalities remain unchanged, in equal measure.  It may sound odd to hope for no improvement, but if her brain activity appears normal the neurologist will take her off anticonvulsants. And this could mean more horrifying seizures.  When neurons discharge inappropriately they cause abnormal electrical impulses in the brain. This results in seizure activity which can lead to abnormal motor activity or convulsions, and loss of consciousness, and if not controlled as soon[…]

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Disabilities Are Not “Special Needs”

It’s taken a decade of research into genetics and specific diseases and disabilities for me to gain even a fraction of understanding of my daughter’s syndrome. I still have no idea what I’m doing half the time. And I make plenty of mistakes.  Case in point—until recently I didn’t even realize that the label “special needs” was outdated and unacceptable. I’m immersed in this community, yet I was unaware. And if missed this, maybe you did too? I’m not easily offended. I curse, I make gross jokes. I try not to take what people say too seriously and I try to cut people some slack when they say the wrong thing. We all slip up. Words don’t tell the whole story. Our actions and intentions define who we are.  But, when we are told point-blank that something is offensive, we should pay attention. Isn’t it our responsibility as compassionate citizens to do no harm whenever possible? And seriously, updating our vocabulary costs us nothing. Let’s take the r-word for example. I’ve written about it quite a bit over the years. The word itself is harmless. It means late or delayed. When used appropriately, it should cause no harm. But it does.[…]

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Are You Happy? If Not, Why?

If you’re happy and you know it, clap your hands. What, no clapping? Aren’t you happy?!  Well, don’t let that make you sad because not many of us are consistently happy. According to the studies anyway. Science has us pegged as a sad sack of SOBs just trying to make it until cocktail hour.  My daughter however, she’s perpetually happy. She gleefully claps her hands all the time for no apparent reason. It’s like a happiness explosion where her joy just can’t be contained and the sudden burst of happy claps is a way to let it out.  I consider myself a very happy person, but I can’t say I feel “happiness explosion happiness” in adulthood very often. But alas, nobody is as happy as Avery. She doesn’t fit the typical mould. She doesn’t worry. She doesn’t know fear. And there’s zero hate in this kid’s world. It just doesn’t exist for her. I’d say she’s 90 per cent happy—9 per cent ‘meh’, when she’s tired or told, “No, you can’t host a play date right now.” And 1 per cent legitimate sorrow, usually when she’s missing a loved one. The rest of the time, bliss.  I get the sense[…]

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25 Quotes About Parenting A Child With Disabilities

Parenting a child who has a disability definitely has some unique challenges. Here are a few quotes that never fail to deliver a ray of sunshine on the cloudy days. Enjoy and please feel free to add your favourites in the comments.  1. “Motherhood is about raising and celebrating the child you have, not the child you thought you would have.  It’s about understanding that he is exactly the person he is supposed to be and that, if you’re lucky, he just might be the teacher who turns you into the person you are supposed to be.” ~ Joan Ryan 2.  “One of the great things that any community can do is not teach tolerance, but live tolerance, not talk respect, but live inclusivity.” ~ Michael Pritchard 3.  “The best and most beautiful things in the world cannot be seen or even touched- They must be felt with the heart.” ~ Helen Keller 4.  Don’t focus on what she can’t do. Focus on what she can do. Like a boss. ~ Lisa Thornbury 5.  “Parents of children with special needs create their own world of happiness and believe in things that others cannot yet see.” ~Unknown 6.  “Sometimes the things we[…]

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It’s Important To Protect Your Blog

You might not be a Blogger (not all of us are, it just seems like it) but chances are you’ve journaled, or kept a diary or calendar of milestone moments, or made a photo album to preserve special times. That’s what this blog is for me.  Yes, I write the occasional sponsored post and get paid to heave my “digital social influence” around here and there, but this space isn’t about that. It’s personal. Personal, yet shared publicly across the internet. I started blogging shortly after our daughter was born, ten years ago. I blogged before most people knew what a blog was. I started writing about what life was like as a parent of a child with complicated medical issues and uncharted special needs. I was scared and looking for answers. Writing helped connect me with other parents going through the same thing.  It was also a way for me to keep track of significant milestones—surgeries and illnesses, and firsts, and major accomplishments, and all the feelings. It’s funny, I’ll look back at an old post and be all, “Wait what? She had Scarlett Fever? I totally don’t remember that!”  As the years passed, this blog became a way[…]

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