Tag - #specialneeds #disability

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Tears For Cheers—But Not The Happy Kind
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Disabilities Are Not “Special Needs”
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Sometimes

Tears For Cheers—But Not The Happy Kind

My daughter and her special abilities cheerleading team competed performed at our Provincial Cheer Championships this weekend. The kids loved it and they beamed under the spotlight. It was a beautiful moment in time. It was the kind of acceptance and inclusion we parents of kids with disabilities long for. So why did I leave feeling completely gutted?  The coaches and volunteers who have helped shape this team into a world class cheering force, are amazing. I don’t even have the words to express my admiration. Ironic, since I’m a writer and everything. They believe in these incredible kids and are giving them the opportunity to feel the power and pleasure of working together as a team. This is to say, it’s all good. I am very grateful. But, I’m still allowed to feel the feelings, right? And I’m not talking about the rosy ones. These are dark little suckers.  There were tears this weekend. Yes, some were the proverbial “happy tears” that leak from parental pupils that just can’t contain all the pride. But some were ugly. The ones you hide by pretending to blow your nose or try stop from spilling by holding your breath or swallowing hard[…]

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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  Case in point—until recently I didn’t even realize that the label “special needs” was outdated and unacceptable.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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Sometimes

Sometimes when you have too much to say, you end up saying nothing at all. I’ve tried to write many times this week. But instead of writing a word, I clicked “close” every time.   Sometimes when life is too hard, you shut yourself off. You assure everyone around you that everything is fine and you try to believe it.    I feel guilty because others have struggles much harder than my own. I have a child with special needs. So what? So do many, many other parents. Our story is not unique. Avery is healthy and happy and beautiful and I should feel lucky. Or so I have been told. But some days, instead of lucky, I feel frightened, frustrated, angry or sad.   I’ve always had the attitude that everything will be okay. This is our normal and life is good. It’s not perfect, but it’s good. It seems you can only go on for so long fooling yourself into thinking your life isn’t hard.  My life is hard. Avery is funny and loving, but she’s difficult. She doesn’t understand “danger.” She is always at risk and it’s taxing living in a constant state of fight or flight.[…]

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