disability
It’s been a while…and it will probably be a while longer….
I haven’t written on rubysoup in quite some time. There hasn’t been any significant reason other than I have been very busy with my work and my family. However, I must admit that I have been rethinking my enthusiasm for the explosion of communication via the internet that has occurred in the last few years. I am fiercely private person who believes in discretion. Sharing my life on rubysoup has been a stretch for me in that regard but my efforts were validated by families like mine that found it a useful. But when you share in a public forum you allow your life to be viewed by all, even the curious or the snoopy…there is little to no control over the audience. I’m not entirely comfortable with that.
I have moved the majority of my communication to Facebook because I am able to control my readers and it allows for a two-way discussion which I so enjoy. Because like many of you, I prefer dialog. I do not presume to be such an expert that I can just talk and expect people to listen, nor do I enjoy that, and that is what blogging is about. I prefer conversation and Facebook allows me to do that with people from all over. Some of my loyal rubysoup readers have found me on Facebook and we are developing relationships which I find fulfilling and enriching.
Social networking sites like Facebook come with their own set of problems. There isn’t much standard etiquette yet about what is acceptable to share and what isn’t. That troubles me. There are lines that get crossed and it takes some getting used to. At what point is it okay to post other people’s business as your own news? I would say never. Also, you can be rolling along having a wonderful conversation thread and suddenly find yourself under attack by someone who disagrees. Just like in life, some people are just more polite than others. At least on Facebook you can control who has access to your posts and if you follow obvious safety rules, particularly when it comes to sharing photos and information about your children, then I believe it is a pretty great forum.
I am not sure I will abandon rubysoup just yet but might try to reinvent it so that it does a better job of reaching it’s intended audience. I want to connect with those who walk in my shoes so we can share our experiences and support one another. We all know how uncomfortable it is to be stared at when we go out in public with our kids or to have to patiently answer people’s questions about our children. For the time being I have no desire to bring more of that into my life with rubysoup. So I need to make some changes.
Until then, feel free to contact me personally via email or send me a Facebook friend request. Let’s keep the conversation alive!
Adaptive skiing in Girdwood, Alaska for Spring Break
Next week is Spring Break for my family and I am really looking forward to it. The push from Christmas to Spring Break is tough in Alaska…I’m sure it’s tough everywhere, but it’s a killer up here where the weather is bitterly cold and the daylight elusive. We are starting to turn the corner, but spring is still a long way off for us. Our days are longer, but the cold is relentless.
It’s about this time every year that I realize I need a vacation. I would love to hit the sandy beaches of Hawaii, but have yet to find the courage to brave a 5 ½ hour plane trip with Quincy…and that’s just flight time. If you add in all the additional time for checking in, getting through security and flight delays it can turn into a full day of travel. That’s just more than either my husband or I is prepared to take on, especially when we are already worn out and in need of our own rest and relaxation.
So, as we do every year, we will stick close to home. Our plan is to ski and play in Girdwood. We hope the weather cooperates and we can spend as much time as possible on the mountain. The fresh air, exercise, good food, and a break from the stresses of work and life will do all of us good.
Someday I hope we can figure out how to travel to exotic, warm places with our family. But, until then I am thankful for that which we do have.
Understanding and appreciating the siblings of disabled children
I was talking to a friend of mine today who is raising two beautiful girls, one who is a young teenager and another who is a “tweener” with autism. We began one of our many conversations about our lives and the challenges we face. One thing we hit on was the balancing act we face to make sure we do everything we can for our disabled children while still meeting all the needs of our other kids.
The siblings of disabled children are unique and special kids. They have great empathy and understanding for anyone who faces challenges. At a young age they learn to recognize seizures and environmental factors that may be unsettling for the siblings, they learn to communicate without language, they learn how to provide comfort and care. They also understand therapy, doctors, medications, hospitals and even emergency rooms. They know their siblings are different and they seem to roll with that…weather whatever comments they may hear with brave faces and hearts. But, they are still kids and in order to do right by them we understand that our focus cannot simply be about Quincy. We must make the time to celebrate their lives, their activities, their achievements. We must make them understand that they are special and that even if our life is somewhat dictated by their sister’s needs they will never take a backseat. We help them to foster lives that are separate from hers, so that they understand the pure joy of “normal” relationships and activities. And, we learn to forgive them when they have situations where they would rather not have Quincy take part. They need that…they deserve that.
They will grow up to be amazing people who will treat people and situations differently because of their sister. They will have great tolerance and patience. Maybe they will turn to occupations that will help other families or people who face similar disabilities, like therapists or doctors. But, whatever they chose to do I know it will spectacular and that they will make a significant impact in this world. As parents we must make sure that they understand our lives are different from others, but it isn’t a bad thing…it’s just a different thing. If we can learn to celebrate our differences and learn from them, like our children are doing, our world will be a better place.
Reduce the stigma of disability by avoiding the use of labels
Autistic, Cerebral Palsy, Retarded, Emotionally Disturbed, Amputee, Down’s Syndrome, Cystic Fibrosis, Medically Fragile, Seizure Disorder
When I meet someone casually, either on an airplane, at a conference, in the lobby of a waiting room, any place where you find yourself in basic chit-chat with someone you may or may not ever see again I tell them I am the mother of three children, ages 13, 10, and 8. We are a family that loves to ski and to travel. The conversation usually moves from there. I never start out by saying I am raising a developmentally disabled child and two other children. That just isn’t important. I’m just a mother who is ridiculously proud of each of her children for who they are.
We are not defined by the sum of our limitations, but instead by our character.
I write about Quincy and the challenges we face raising her to help others, to share my experiences with people going through the same things, not because I wear being Q’s mom as a badge of honor, or shame or of a martyr (depending on your point-of-view). Can you imagine how much you would hate being introduced to a new person with a tagline about all your limitations? This is my brother, Frank, the one who suffers migraines and fights the disease of alcoholism. This is my aunt, Betty, the one who has hearing loss and high-blood pressure. I don’t think so.
I have friend I have known since childhood who was diagnosed as a child with a eye disease that would eventually take most of her sight. She was fierce about not telling people about her challenges. She was a great athlete, a great student, and grew up to be a great mother, teacher and member of her community. I am quite sure if her parents had introduced her as “our daughter, the one who is blind” there is no doubt there would have been Hell to pay. She wanted to be known for what she could do, not what she struggled to overcome. She has inspired me my whole life, especially after I became a parent of child facing challenges of her own. She has handled her limitations with grace, dignity and privacy. Privacy. That’s what it is about.
If you get to know me well enough, and we develop a trusting relationship, then I will let you into my life with Q. If everyone in my community stumbled upon this blog many would be shocked to know the specifics about Quincy. They would tell you they had no idea. That’s how I like it. So, be careful about when and where you apply labels. Look first at people for who they are and not what their disability is. We all have things that limit us in life, but we all deserve the dignity of not having that be what defines us.
Adaptive skiing and therapeutic recreation
Over the Thanksgiving holiday we skied with Quincy. It was so much fun! Our local mountain got nearly 20″ of powder every night of the four-day holiday. It was skiers paradise and a perfect way to kick off the season!
My husband and I have been trained on how to use a bi-ski and that is what we use with Q. Rob has his Professional Ski Instructors of America (PSIA) Level 1 adaptive certification, so he really does know what he’s doing. The bi-ski (also called a sit-ski) is a device that has a bucket seat attached to two skis with two shorter outrigger skis on the back to keep it balanced. It is operated by a very skilled skier who holds two tether lines and by using those lines can make the ski carve turns to either the right or left.
My role is to assist loading the bi-ski onto the chair lift and then to shadow Rob and Quincy, blocking any stray snowboarder or novice skier who may wander into their path. A collision with another skier is just one of the many hazards we must avoid. Rough, tracked-out conditions can create a bumpy ride and just like with any skier if the bi-ski catches an edge it can tip. It can tip going too slow, it can tip going too fast. I am quite proud to say that we have never, ever dumped Quincy. And that is incredibly important. She places full trust in our abilities and if we fail her it will be very difficult to earn it back. When we trained on the bi-ski we started by using sandbags instead of a child…we dumped plenty of sandbags. Then, we practiced on able-bodied people…it’s always good to experience the equipment first hand so you have a clear understanding of what the ride is like, what is scary, what is fun, etc… We finally began with Q and we’ve been skiing with her on our own for nearly three seasons with a perfect safety record. It’s not to say that Rob and I haven’t suffered through plenty of bumps and bruises…but we suffer them happily for Q. There is no more perfect freedom that being completely independent on the mountain…cruising where we want when we want without anyone’s assistance.
If you ever have the opportunity to volunteer at any therapeutic recreation program, be it skiing or swimming or anything, please try it. There is no better reward than the smile on the face of a child who experiences something they have never done before.
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National Vaccine Information Center (NVIC)
