Category - Special Needs

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Skipping To The Beat Of Her Heart
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Tears Sting Even When They’re Not Yours
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All Dressed
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Gymnastics — Inclusive, Fantastic and Elastic!
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You’re Not Still Using The R-Word Are You?
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Precocious Puberty?!
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Brothers and Sisters—special needs
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Derek
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Happy Disability Day?
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When Your Child Chokes

Skipping To The Beat Of Her Heart

  She rarely walks now. She prefers to skip. Sometimes she even skips in a purple tutu. It took her a long time to learn to walk. Less than two years ago she still wore a helmet on the playground, in case she fell.  Now she’s running, jumping and skipping. And when she skips, her strides are only slightly smaller than the grin on her face. She’s proud of herself and with good reason.  I wish I could take credit for her reaching this physical milestone—one that a child with significant gross motor delays might never achieve. Her EAs at school have been working with her on this for months, and it finally paid off. How amazing are they and how lucky are we? I’m so grateful…I could literally skip. Here are 35 seconds of super skipping stupendousness, LIVE and in technicolour.  Caution: This video skips, but in a good way. 🙂

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Tears Sting Even When They’re Not Yours

This post is about how to ease the blow when your child isn’t invited to the party…   My daughter excitedly joined in to sing a boisterous happy birthday to her friend at school this week. She’s all about the good times. It’s an apple-falling-not-far-from-the-tree sort of thing. She went straight up to the birthday girl (who is a sweetheart) and asked, “It’s your birthday! You having a party?”  Making an awkward situation even more awkward (another apple-tree situation) my daughter continued her line of questioning with, “I can come to your party?!” Talk about putting this poor girl on the spot. She is having a small party—only one child from the class was quietly invited. This is totally cool and completely acceptable. But my party girl just couldn’t understand this and she couldn’t let it go. For the rest of the day she kept bringing it up, stuck in a loop of disappointment. Classmates began stepping in to say gently but firmly, “Avery, you’re not invited. Okay?” On the way home from school my girl burst into tears, explaining about the party and that she couldn’t go sobbing, “Why can’t I go toooooo?” sob-sob-snot-bubble-cry All parents have these dagger[…]

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All Dressed

She is perfectly able to dress herself in the morning. Well, pretty much. Buttons and zippers can still be a challenge. Yet I can’t seem to stop myself from “helping.”  Since I realize she needs to learn to do things on her own, I’ve been laying out her clothes and allowing her to get dressed on her own, no matter how long it takes (and sometimes it takes forever).   I need to take this a step further by letting actually her choose her own outfits. But it’s a tough one. For me, not her. She loves picking out her clothes. (This is where the control freak in me starts to really squirm.)   Today I was running late so I let Avery put together her own outfit for school. Oh how I wish I had video of her jumping through her doorway out into the hall, arms overhead, legs outstretched in a victorious V-stand, grinning from ear-to-ear exclaiming, “Tah-dah! I dressed!”    Halloween t-shirt, underwear on backwards and inside-out, one long black sock, one short white sock, no pants. She was ready for school.   We have a strict “you must wear pants in public” rule so I suggested she put[…]

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Gymnastics — Inclusive, Fantastic and Elastic!

  My daughter’s genetic make-up is unusual in many ways and I suspect her DNA also includes a unique elastic gene. The girl lives to flip, jump, roll, climb—basically anything that results in her body leaving the ground for any length of time. Avery was first introduced to gymnastics by her cousin — it was love at first back bend and we knew we had to sign our little monkey up for a local program. By “happy-stance” I met Canadian Olympic Gymnast Jessica Tudos on Twitter and she recommended a gym for us. She said it would be a perfect fit. She was right. Though Avery has developmental and physical challenges, Schlegel’s Gymnastics Centre is fully inclusive. Avery is just another active kid in a leotard climbing a rope. Can I just say how thrilled this makes me?? Several years ago Avery attended a play gym and because of her special needs she was placed in a program with kids half her age. There was poor Avery out on the mat with toddlers. This didn’t do anything to develop her physical or social skills. We quickly pulled her out.  Schlegel’s focuses on each child’s individual strengths and needs. It’s non-competitive[…]

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You’re Not Still Using The R-Word Are You?

  Last year in the school yard, children repeatedly asked my son if his sister was retarded. When he finally told me about it I was ready to bang some heads together. Luckily my child is more mature than his hot-headed mother. He chose to take action by making this VIDEO to present to his peers resulting in meaningful conversations and a greater understanding about what it’s like to have a sibling with special needs. The fact is, children follow so it’s our job as adults to be kind, educated, moral leaders. When adults don’t set a good example we end up with a new generation of ignorant, intolerant adults. Out for dinner recently an adult at our table joked about something retarded they did at work. I was shocked, but I didn’t say anything.  How is this still happening in 2014? If I stay silent I’m part of the problem. This frustrates me. As the parent of a child with special needs am I expected to police the internet and the world around me like an R-word detecting watch dog? I’d really rather not. You might think that retard(ed) is merely a word and that we—the people who love[…]

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Precocious Puberty?!

  My friend wrote this thoughtful post about our responsibility as mature adults to talk to our kids about…ahem, you know, the birds and the bees. (Hello 1957.) She’s absolutely right. Whether our children are educated in these matters at school or home, we need to provide them with the facts necessary for them to make safe and healthy choices—for their bodies and for their tender hearts. I remember the “talk” when I was growing up. Back then these awkward talks were isolated moments in time. Instead of slowly doling out the details as our children mature, giving them age appropriate info as needed, our parents sat us down at the age of eleven-ish and dumped the facts of life into our laps. My mum did a great job. She sat me down in our kitchen and told me what to expect as I developed. I didn’t make eye contact as she explained about a garden and some kind of complicated seed planting situation. Despite the Better Homes and (lady) Gardens metaphor, I understood. I also felt reasonably comfortable going to my mum during my teen years with questions. Luckily, I didn’t have many that couldn’t be answered by my[…]

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Brothers and Sisters—special needs

  I fell head over heels for each of my children instantly. When my son met his baby sister for the first time, he stroked her downy soft hair and vowed to always take care of her. Sure, they may tease and squabble and possibly bite leaving behind little teeth marks, but mostly they are faithful friends. I thought I couldn’t possibly love them more until the day when the ambulance came. My youngest needed help and my oldest child, blurred out of sight, was brought back into focus with the words, “Mummy, don’t worry about me. I’m fine. Just please, please let her be okay.” Standing with his back pressed firmly against the wall out of the way of the paramedics, I warned him about the mad rush of people who would be coming any minute, and cautioned him to stay out of their way. He was holding his sister’s pink bear, which he later handed me to bring along to the hospital. I knew in that moment, that he loves his sister as much as I love them both, and my heart ached under the weight of that realization. My son has loved his sister from the moment[…]

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Derek

  I don’t watch a lot of television. Unless it’s guaranteed to make me laugh or possibly think, I usually skip it. A friend recommended a new show on Netflix called Derek starring Ricky Gervais.  The first episode had me confused. It wasn’t funny at all. I kept expecting Ricky to turn to the camera ala “The Office” and make some humorous comment. It didn’t happen. And what was with the main character? I wasn’t sure what to make of him at first. Everyone raved about the show, so I watched another episode. I’m so glad I did. Derek is a beautiful story about a man with autism who has found his place in the world.  As the parent of a child with special needs, this gives me comfort. “Despite how he looks, he is kind and sweet and sincere. He’s perfect. He’s just perfect.” says Gervais of his character Derek. Though Derek is unique in how he looks and acts and walks and talks, “kindness comes along and trumps it all.”  I’ve often said that my daughter is the kindest person I know. She loves big with all her heart. She’s a people person. She like Derek, she adores[…]

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Happy Disability Day?

  Today is International Persons with a Disability Day. I’d never actually heard of it until it popped into my Twitter stream. It seems there are “DAYS” of recognition for everything now—like “Wear Brown Shoes Day” (coming up tomorrow in case you’re interested), There’s also: Ninja Day Learn Your Name In Morse Code Day Battery Day (sounds like a great opportunity to relax and recharge) Cat Herder’s Day (otherwise known as parenting small children day) Pigs In A Blanket Day (assuming they mean the food, not “let your Guinea Pig sleep with you”) Talk Liketh Shakespeare Day Hug A Plumber Day (Just don’t get cheeky with their, you know, bum crack) Bird Day—Reminds me, I need to send a pigeon a Happy Bird Day card… And there many other obscure and silly days that completely make my day. In case you think I’m making these up, the entire calendar of DAYS is right here. I don’t know who came up with Disability Day. Is it even real? It certainly is for our family as we “celebrate”and embrace diversity every day. Disability Day, recognized by the United Nations, was established to help break barriers and open doors in hopes of creating[…]

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When Your Child Chokes

  Not all parents of children who have a disability of some kind obsess. Admittedly, I do. I struggle to tame the worries that invade my thoughts and I tend to hover over my daughter. (Think helicopter blades whirling furiously over head, bubble wrap dispenser on the ready.) My child has global development delays, speech and gross motor issues, and seizures. Despite her diagnosis she has made incredible progress. For a child who doctors said may never walk or talk, she is doing both — in your face, science. Our girl is no longer a baby. She is active and bold and curious. To deny her independence and the chance to explore would be cruel, so I hold my breath and let her go. Up the stairs by herself; higher on the swings; in the pool, close by, but liberated from her water wings. As it is for any child, loosening their reins allows them to reach further. So despite my racing heart, I’m trying to give her space to grow. My other child, Avery’s big brother, laughs when I remind him to chew his food. To him, grapes are juicy mouthfuls. To me they are ominous orbs of imminent choking. I’m not completely insane though — I stopped cutting[…]

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