disability Archives - Page 4 of 7 - Forever In Mom Genes

Disabilities Are Not “Special Needs”

Mar 21 2017

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 Case in point—until recently I didn’t even realize that the label “special needs” was outdated and unacceptable.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

May 06 2016

Anxiety is a pain. Whether we come by it genetically or situationally, it hits all of us at various times in our lives. I’ve written about my struggle with worry—as a parent of a child with a variety of medical issues, I worried about our girl a lot. I looked too far ahead and fretted about the what ifs. I couldn’t stop the catastrophizing. When you live in the past or in the future, you miss the present, and that’s where all good stuff happens. So I did the cognitive behavioural therapy exercises and it made a world of difference. Don’t get me wrong, I still have moments where I freak the hell out, but I know how to reign it in. This whole being mindful thing is a work in progress. Adults coping with anxiety is one thing, but what about children with anxiety? Watching your child worry is like being poked in the stomach with a sharp stick. I’ll unabashedly tell you about my battle with my worry monster, but sharing someone else’s story is offside. But I can say that having a sibling with disabilities can create fear and anxiety for good reason. Watching your sibling choke and[…]

May 22 2014

People say we’re nuts for having so many pets. Three isn’t “so many” if you ask me, but I’m not one to split hairs—even the ones stuck to my black pants. Is life easier without a small herd of animals to take care of? Sure. Is it as rewarding? Not for us. When our daughter was about two and a half and still not walking, one of her physical therapists suggested we find something highly motivating to her to get Avery up off the floor and walking. Avery has always been obsessed with dogs. THIS would be her motivation. My sister-in-law has her own veterinary practice and she found the perfect dog for us—a mutt, part chihuahua, part terrier and part teeny-tiny wolf. He was about three years old, housebroken, quiet, not too big, and a RESCUE DOG in need of a loving home. We would be that home. Within three months of adopting Roger, our girl was walking; then running after her canine companion. A few years later we adopted a second dog, Maya. We even hosted a dog wedding. No seriously, you can witness the Bow Wow Vows here. It can take people a lifetime to[…]

May 01 2014

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[…]

Aug 12 2013

Our son is fully aware that his little sister is different. He knows about her chromosomal disorder and her cognitive and medical challenges. He understands the implications of the R-Word and he’s aware of the range of physical disabilities that exist for so many people. He has been aptly schooled. We’ve shared Avery’s diagnosis and prognosis with him little by little. It’s like sex education that way — you want to provide enough information to prepare your child for what lies ahead, but you don’t want to bombard them with too much, too soon. He is basically up to speed when it comes to his sibling’s cognitive and physical challenges, or so we thought. I honestly assumed he already knew about her pinky fingers. Avery has a genetic condition called Clinodactyly. Clinodactyly is the sideways bending of a finger joint. It is often caused by an abnormally shaped bone within the finger. The pinky finger is most commonly affected. This condition is usually heredity, but in our daughter’s case it’s a result of her genetic abnormality. My best friend actually noticed Avery’s “shorter than average” pinky fingers before I did. That’s a story in itself which I’ll share another time. […]

Category - disability

Disabilities Are Not “Special Needs”

Small Kids, Big Worries

Pets Are Family

All Dressed

Clinodactyly