To my fellow siblings of children with special needs:
I’m going to give you some unsolicited advice.
But first, let me start by saying I’m the proud older sister of a beautiful 12-year-old girl with a severe physical disability. Though I’m nearly eight years her senior, my sister, Lexi, is my best friend. Since her birth, my family’s path has been a little bumpy, but I feel blessed to have Lexi in my life every day.
I don’t think for a minute that my experiences with Lexi give me any license to comment on your life or your feelings. I’ve spent many years trying to explain to parents that even they cannot truly understand what it’s like to be the sibling of their child with special needs. The relationship between a parent and a child is so different from the one between two siblings.
I’d be entirely hypocritical to suggest it’s not difficult to be the parent; I’m awestruck by the strength of my mom and dad every day. But my parents cannot understand what it’s like to be Lexi’s sister any more than I can understand what it’s like to be her mom or dad. In the same fashion, I cannot understand what it’s like to be your sibling’s sister any more than you can understand what it’s like to be Lexi’s. But I do like to think my past 12 years of both angst and joy with my sister have left me with some insight into living in the world of disabilities. So I’m going to share with you a few things I think are important for every sibling of a child with special needs to know.
Your life will be hard. You know this, obviously, but I still think it’s a critical to acknowledge this. Countless doctors, physical therapists, family friends, and, occasionally, even strangers in the middle of the grocery store have told me the hard times are nothing compared to the knowledge and inspiration I will gain just from being Lexi’s sister. I love Lexi more than anything in the world, but being her sister straight up sucks sometimes. It’s more than feeling a pang of jealousy or worry in my heart, and it’s more than the frustration that comes with constantly preoccupied parents. For me, it’s the devastating injustice of having my college fund drained to pay off medical bills. It’s the crippling guilt that comes with watching my mom struggle to take care of my sister when I leave for school. It’s an undying commitment to take care of a child who isn’t mine to take care of. I don’t want you to get the wrong idea because I wholeheartedly believe it’s all worth it. I wouldn’t trade Lexi for anything or anyone. But I also think it’s so important for you to know that it’s OK to feel like disabilities suck sometimes. It’s OK to be jealous and resentful and guilty. It’s OK to be tired of hearing about healthcare and insurance, and it’s OK to wish your life was easier. I certainly feel that way sometimes.
To read more click here: http://themighty.com/2015/01/to-my-fellow-siblings
A Michigan teen trekked 40 miles with his 7-year-old brother on his back to raise awareness of cerebral palsy, the cerebellar degenerative disorder that prevents his sibling from walking himself.
Hunter Gandee, 14, braved blustery conditions during the two-day hike from his hometown of Temperance, Mich., to the University of Michigan in Ann Arbor. His brother Braden has struggled with cerebral palsy his entire life. Hunter toldABC that although he wrestles in 100-degree conditions at Bedford Junior High, “it’s nowhere near how hard Braden works.”
The teenager originally concocted the idea after raising $350 in green wristbands for cerebral palsy awareness month at his school. Afterward he wanted his efforts to reach beyond his classmates. “We want kids to understand Braden,” Hunter told MLive.
He was further inspired by a dream that his mother had of him carrying Braden to Mackinac, Mich., where the family had often vacationed. This led to two months of preparation for carrying his 50-lb. brother on his back.
The courageous duo were joined by other family members for the final portion of the journey, which nearly ended early because Braden’s legs were badly chafing. But after a brief rest-stop and repositioning Braden, the brothers completed the mission in 30 hours.
“We pushed through it,” an exhausted Hunter told ABC. “And we’re here.”
On the walk’s Facebook page, the Gandees express hope that the walk will earn the attention of engineers and doctors for “the need for innovative ideas in mobility aids and medical procedures.”
To see the original article click here: http://time.com/2846313/michigan-teen-carries-brother-40-miles-for-cerebral-palsy-awareness/
Watching Frozen With My Daughters: Disability As Superpower and the Power of Sister Love
My kids are only 2, so I'm still not fully in the loop of kid-culture. Frozen largely stayed off my radar during its run in theaters, because I am NOT crazy enough to take these two to a movie in a theater yet, and I didn't even see trailers because we don't have cable and they don't show ads for movies on Hulu very often. I'd see posts in my social media feeds from moms of older kids complaining about watching it for the umpteenth time, or having the songs stuck in their heads, and I even saw a few videos shared that related to the film, like those self-declared good-looking parents lip-synching. (Tip: unless you're Derek Zoolander, never talk about how good-looking you are.)
All that said, the other day we bought Frozen and tried to watch it as a family. The girls had had a long, late nap that day, so we were looking for a low-key evening activity. And I'd been kind of curious about a movie I heard was about two sisters -- I have a sister and am raising a pair of sisters and YAY SISTERHOOD, you know? I popped popcorn, and all four of us snuggled on the couch and we pressed play. Elmo? the girls asked. And kept asking. Basically, through the entire movie they wanted to know where the heck Elmo was, and if Elmo wasn't in this movie, why were we watching it at all? We didn't even finish before putting them to bed.
To read more: http://www.huffingtonpost.com/sarah-sweatt-orsborn/watching-frozen-with-my-daughters_b_5105525.html
Dylan Siegel, 7, would do anything for a friend -- especially if that friend is his best one, 8-year-old Jonah Pournazarian. The pair has been inseparable ever since they met in preschool, when Dylan learned that Jonah faces a rare battle their other classmates didn't -- glycogen storage disease, or GSD, according to LEX 18. The condition causes Jonah's blood sugar to drop to potentially fatal levels, forcing his parents to follow an inflexible, round-the-clock schedule of feeding Jonah through a stomach tube in order to keep his metabolism stable, according to ABC News.
GSD does not have a cure. And, to Dylan, that is unacceptable. So, back in 2013, when he was 6 years old, Dylan wrote a book to help his friend and others struggling with the disease. But, it's not your typical page-turner, every penny from sales of "Chocolate Bar" -- a term used by Dylan to mean "awesome" -- goes directly to a lab at the University of Florida College of Medicine in Gainesville, Fla., which is working on a cure for the disease. "It is now reality. It's not just a dream that these children can be cured," Dr. David Weinstein, who runs the University of Florida lab, told Fox 17. To date, Dylan has raised more than $750,000 in the fight against GSD. Before the money began pouring in from book sales, funding for Weinstein's research was falling flat, ABC News reported. "Chocolate Bar" has given those suffering from GSD renewed hope for a better tomorrow.
To read more: http://www.huffingtonpost.com/2014/03/12/boy-writes-book-for-charity_n_4949967.html?icid=maing-grid7%7Cmain5%7Cdl28%7Csec1_lnk2%26pLid%3D453593
Please visit website Dylan and Jonah's website: http://chocolatebarbook.com/
Rebecca is an independent publisher working to help siblings of children with emotional challenges.