Category - disability

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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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Her Voice
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Walk On Walk Star—Celebrating Her First Steps
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Invited—When Your Child With Special Needs Gets A Birthday Invitation

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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Her Voice

  We all want our daughters to have a voice. I need my daughter to have one.  I won’t always be around to speak for her – to explain to others why she may not understand, or to make her understood. Before my daughter was born, deep down I worried there was something wrong. All the prenatal testing indicated she was fine, but sometimes a mother just knows. When she was born, and I held her in my arms, I saw only perfection. I still do. We soon discovered our girl was special. In fact, she’s so unique there isn’t a name for her particular syndrome. She has come miles further than we were told she could. Her future is bright, yet shadowed by developmental and medical challenges. Our daughter doesn’t understand the rude looks or ignorant questions. A stranger’s comment about her “walking funny” results in a carefree smile. Teasing, from a neighbourhood kid earns him a giggle. One day, she will understand and feel the sting of hurtful words and actions. The most important thing I can do to prepare her is to help her to find her voice. My girl is a mess of blonde curls, big brown eyes and pouty pink lips. She’s beautiful. People want[…]

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Walk On Walk Star—Celebrating Her First Steps

  I spend a lot of energy focusing on moving forward, but when I take a moment to look back, I’m amazed at how far we’ve come. Moreover, how far SHE has come.    She wore legs braces to help align her ankles, knees and hips. She worked hard at physio every week. She practiced standing and balancing and taking a step or two holding one of our hands.    Then she took a few steps on her own. It was hard work and it took years and a lot of effort.    And then one day she just did it. Inspired to get up and chase after her new dog, she walked on her own. She fell a few times, but got up and tried again until she got just walked across the room all on her own.  I still get choked up when I watch the video of that magical moment. Walk on, walk star. We’re proud of every step you take.               Click to watch this Walk Star’s First Steps  

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Invited—When Your Child With Special Needs Gets A Birthday Invitation

It happened. Finally, joyfully, my five year old atypical child received her first ever invitation to a typical peer’s birthday party. She tore open the envelope and exclaimed wide eyed, “I party!” “I so happy,” she said while I cried big, sobby tears. “Mummy sad?” she asked, looking concerned. No my sweet girl. I’m not sad. I’m thrilled for you. You deserve so much—fun and parties and all the great things that come with having friends who love you, for you. I want to tell this *mother, the one who sent the invitation, how much this means. I’m sure she has no idea. Avery has carried the invitation around with her all morning and won’t put it down. And now she wants to go out, like right now, and buy her friend a “bir-day pwsent.” The happiness on this child’s face and the excitement pulsing through her body reminds me, because sometimes I forget, that life is truly a celebration.  Party on big girl. *I sent the mom an email to explain how much this invitation meant to us and to sincerely thank her. I also hugged her (hard and possibly a tiny bit too long) at the party.   […]

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