Category - disability

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All Dressed
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When Your Child Chokes
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Do You Have A “Special Needs Script?”
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Warning: This Post May Put You To Sleep….
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Planning For Your Special Needs Child’s Future
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A Unique Teacher Imparts Real Life Lessons
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The Backpack Pack Rat Strikes Again
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Therapy As Play—Joyful Learning
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Include Classmates Who Have Special Needs
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Mother of the Year

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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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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Do You Have A “Special Needs Script?”

Writing a movie script? Fun!   Writing a script for your child to have on hand for when peers, out of ignorance or curiosity, call his younger sibling a “retard“? Not quite as much fun. But it’s important to arm kids who have a sibling with special needs with the words to thwart such attacks. And what about the parents of children with a disABILITY? Parents like me with soft hearts and thin skin. There was a time when I considered having cards made up to hand to strangers who stared or made unsolicited comments. I thought by having the words written out, I’d be better able to explain without getting emotional. Since then, my skin has thickened an inch or two and with time and experience and I now welcome the opportunity to address them directly, and calmly. Usually. More often than not, people are receptive upon hearing the information when delivered in a respectful manner. And yes, the “respectful” tone employed for such exchanges takes effort. Look out Meryl Streep — the Best Actress award goes to… Addressing adults — check. I seem to have that under control. Minus the time when that crusty awful woman shushed us.[…]

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Warning: This Post May Put You To Sleep….

Twenty-twenty-twenty four hours to go I wanna be sedated.   Nothin’ to do and no where to go-o-oh I wanna be sedated…   To clarify, The Ramones want to be sedated. I do not. At all. In fact, the idea of being sedated seriously freaks me out. I’m not talking about urban legend scenarios where you’re put under at the dentist and wake up with your shirt on backwards. I’m talking about the real fear of being unconscious while somebody else monitors your breathing and heart rate. That’s some kind of scary. The only thing scarier is having to sedate your child. Especially when your child has underlying medical conditions that make anesthesia more risky.  In order to perform an EEG on our daughter last week she needed to be asleep. Not fully knocked out, but soundly asleep. She also needed to be sufficiently sleep deprived to elicit the disorganized brain chaos necessary to reveal any abnormal brain waves lurking about. Our neurologist suggested using Chloral Hydrate the morning of the procedure to sedate. We’ve used this drug before without any problems. However, after doing some research into Long QT Syndrome (a potentially serious heart condition our daughter is being monitored[…]

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Planning For Your Special Needs Child’s Future

I’m a compulsive planner which means I need like to know what’s going to happen next; and if I can control what that is, even better. FYI — I know what we’re having for dinner every night for the next two months. When it comes to my children, I have to remind myself to stop obsessively looking forward. However, there are some things that really must be arranged in advance when you have a child with a disability.  Though I hope to be around for a long time to care for my family, even I, the master of control, can’t control that. So as unpleasant as it seems, we recently updated our wills and named our children’s guardians and Powers of Attorney.   We also created a document listing all accounts, assets, debts, passwords, and any other crucial information family members would need in the case of, you know, our demise.   We set up an RESP for our son. He’ll need it to help with law and medical school. After that, he’s on his own. I’m sure his astronaut salary and Pulitzer prize money will be enough to get by on. (What? I tend to dream big.)  So with those details in place, I can relax and just enjoy my kids,[…]

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A Unique Teacher Imparts Real Life Lessons

I started watching this video through “teacher” eyes; interested in what makes this particular educator unique. I didn’t expect to be so incredibly moved by his experience as a parent.  I wonder if his parenting a child who has a disABILITY makes him a more compassionate and intuitive teacher? I can’t see how it wouldn’t. It’s clear he has been able to incorporate his personal struggles and strengths into his teaching. He generously shares his positive attitude and can-do outlook with the world and his students are benefitting.  Sometimes even the most seemingly ordinary people live the most extraordinary lives. And they are often the people who teach us the most important lessons about life.  Watch this. It’s truly wonderful. 

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The Backpack Pack Rat Strikes Again

  My girl loves herself a backpack. Or a purse. Or better yet, someone else’s purse. So if yours is pink or has a butterfly on it, you’d best keep one hand on your handbag at all times. In typical female fashion, she stuffs her bag full of completely unnecessary items. I wrote about her handbag hoarding tendencies here along with a list of the typical contents of her bag on any given day. Our backpack pack rat often comes home with things she’s collected at school: her teacher’s sunglasses, a classmate’s pencil case, somebody else’s journal, one sock belonging to some poor sockless child, sheets and sheets and sheets of paper, a creepy doll, a glue stick…and the list goes on. To be clear, she’s not stealing. She has no concept of it. She merely likes to collect items and is happy to dole out the goods to her friends and family. She also attempts to bring things from home to “share” at school. I’ve intercepted many household items stowed away in her backpack, destined for some epic Show and Tell session. I’ve retrieved her brother’s homework, water bottle and one of his Crocs before she made it out the door.[…]

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Therapy As Play—Joyful Learning

  When your child achieves a new milestone, it’s a true wonder. You think, “How are they doing this all by themselves?? Where’s my camera?!” Whether you share these pivotal moments; blog them, Instagram them, Facebook them, scrapbook them or simply hold them in your heart, they’re worth celebrating. My daughter started grade one this year. Though cognitively she is approximately age four, she’s holding her own with her peers. She relies less and less on her Educational Assistant (who we are so thankful for by the way) and she’s making decisions, following routines, and learning with increasing independence. From being warned that our child may never fully integrate into a class of her peers, to…this? I can’t express how thrilled we are. So how did she come this far? An initial diagnosis isn’t always the eventual reality. Sheer determination and moxy also factor in. Never underestimate moxy. It’s fierce.  Family and friends have also been instrumental by providing us with the support and confidence we’ve needed to see us through challenging times. My father-in-law refers to us as, “Team Thornbury.” He’s right. We are a team. We just need jerseys.  And finally, our community. If our child had been born[…]

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Include Classmates Who Have Special Needs

My child is different. Her genetics make it so. Due to a random stroke of fate, a chunk of her DNA is missing. Nobody knows why.   But old friends don’t search for what is missing. They just see what’s right there in front of them—the joyful light surrounding this happy girl. They love her big laugh and even bigger hugs. They embrace her mischievous streak of curiosity. They accept her just as she is.   But new friends, some adults and children, hesitate. “What’s wrong with her?” they ask in hushed voices…which we can totally hear by the way.    There is nothing wrong with her.    She may have trouble communicating succinctly. She might stumble over her words or repeat herself, but she has something to say. She wants to contribute to the conversation.  She doesn’t always understand when you’re making fun of her or that you’re leaving her out, but as she gets older, she is more aware.  When your child, with a disability or not, comes home from school in tears because they had nobody to play with at recess, it stings.  She doesn’t need to be invited to everything. (Side Note: Number of parties she was[…]

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Mother of the Year

When Heather lost her three year old son Zack, she didn’t stop being a mom. Though her heart was broken, Zack’s brothers needed her more than ever. So she embraced them and loved them as mothers do while she made a plan to keep a promise; the one she made to Zack and to herself as they said goodbye. She vowed to keep his memory alive and to have Elmo, Zack’s comfort and joy, speak his name. And that’s just what she did. Heather tirelessly raised money to create a room (two rooms in fact!) in Zack’s name at York Central Hospital. She also persevered until Kevin Clash (the puppeteer who IS Elmo) knew how much Zackie loved him. Kevin knows and he was touched. And Elmo did speak Zack’s name. Heather is healing with her family and she continues to tell Zack’s story, not only to keep his memory alive, but to help other families deal with the pain of losing a child.” Heather and I became friends online. We bonded over our special needs kids and soon discovered we had many other things in common. When my daughter was in hospital shortly after Zack died, Heather kept tabs on[…]

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