Just before the holidays a very young, very medically fragile disabled girl at Quincy’s school died from the complications of her disability.  It is one of those things my husband and I do not discuss.  Our hearts break for the family and the fear strikes home for each of us.  Today I read about John Travolta’s son, Jett, dying from complications of his seizure disorder.  I realize that there are so many parents out there like me who will read about this tragedy and internalize it for days.  We will cry in private where no one can see us, we will not discuss it out loud, and we will share the family’s grief knowing that but for the Grace of God that could be us.

Most parents like us know this fear and face it regularly.  It is what separates us from other parents.  It is what causes those outside our world to judge us as “crazy”, “irrational”, or my personal favorite, “over-protective”.  The judgements are fine…guilty as charged, as long as you understand that my behaviour isn’t baseless but is borne of legitimate fear. Parents raising children who are healthy will tell you the story of momentarily losing sight of their children in the playground or at the mall and that ten seconds of cold fear they felt until their child was found.  That is their singular experience and for that they are blessed more than they will ever know.  That is a fear that parents raising children like Quincy face all the time.  It is something we live with…each of us in our own way.  We find a way to function and to bury the fear to appear normal, but it is always there, popping up in nightmares or on mornings when you open the paper and read about another family losing their child.

If a family like the Travolta’s can lose their child, a family who can afford to provide every safety measure they can, then we know it is more about Fate and not about effort.  Normal families like mine must sacrifice sleep, work, vacations, and a million other things too depressing to list to provide the kind of care Quincy needs.  And, in the end, we know that it will be up to Fate to decide how long we get to love her, learn from her and share her with the world.  I hope she beats the odds and outlives me…but I will live every single day knowing it is a gift that I am eternally thankful for.  Today I whisper a prayer for the Travolta’s and all other families out there who must face their reality far sooner than any parent should.

Despite being -5 at the base and almost -10 at the summit today we bundled Q in every concievable layer and article of clothing, from hand and toe warmers to balaklava’s and went skiing.  The mountain is actually in incredible condition…the groomers are smooth and the snow is really fast.  And, the upside to miserably cold weather is that there aren’t any lift lines to stand in.

We would do a couple runs and then get inside to warm up and then head back out for a couple more…our day went that way and it was great.  Quincy had a blast!  But, the main reason I share all this is because I wanted to follow up my last post by showing photos of the bi-ski in action.  After several attempts I got a great shot of what Rob and Quincy do to ski together.

Rob uses the tether lines to steer the bi ski.  A little pressure on either line will cause the bi ski to carve an arc across the slope.  Quincy’s bi ski is manufactured by Enabling Technologies which can be found at superlite.org.  Woody and his team were fantastic to work with as we designed a ski to fit Quincy’s needs.  They are true professionals and I would recommend them to any disabled athelete interested in obtaining adaptive equipment.

Our holiday vacation is quickly coming to an end and we have enjoyed it thoroughly.  My only regret is not writing quite as regularly as usual.  I plan to do better once we get back into our regular routine.  I am looking forward to all that 2009 will bring to our lives and wish each of you a very healthy and happy New Year!

But, this is a great opportunity to show you some images of the bi-ski that we use.  This first photo is the ski with wheels that are used for transport.  The wheels allow us to move it around without scratching up the skis.

This next photo is the ski with the outriggers in place of the wheels which is how it is used on the mountain.  The outriggers allow for balance as the ski arcs a turn.

My plan was to follow up these photos with some images of Rob tethering Quincy down the mountain, but I obviously didn’t anticipate the weather conditions.  Next time we are out, I promise to take some photos. 

This last one is Quincy just before we headed out for our last awesome day of skiing…

 By the time she is all bundled up and strapped in she will be impatient to get outside and start skiing.  But, it’s important to take the time to gear up properly, both for warmth and safety, and Quincy has learned to be patient.

Our children act, look and behave differently and most of us have them in a world that understands this.  Holiday gatherings will bring together people who are uncomfortable around our children or who simply have not had the opportunity to get to know them.  I hope to share some thoughts that might ease the tension for everyone.Our children love the holidays as much as any other child.  They delight in the sights and sounds, they love having family around, they want presents as much as the next child.  But, when our children are excited and happy they will be loud, they will holler at inappropriate times, they will throw their limbs around.  They will do this at church, in restaurants, at fancy gatherings…if this embarrasses you do not show it.  Do not be embarrassed by how our children express delight.  Be proud of them and hold your head high when their happy sounds disrupt. 

Communicate to children in a manner that is age-appropriate.  Just because a child does not communicate in the way most of us do does not mean that they do not hear or understand you.  Speak to a toddler like a toddler, a teenager like a teenage, an adult like an adult.  Do not speak loudly or slowly unless they are deaf or ask you to slow down.  Allow plenty of time for response…our children usually need extra time to process your comments and respond.

Some children have behavioral issues that are a result of their diagnosis, such as autism.  You may see our children meltdown and you will see us handle it the way we know is best.  Do not judge our children’s behavior or our response.  Our children are not misbehaving in the way you might think…they respond to situations in a way that is inappropriate because they do not process the situation the way we do.  They are not spoiled or being bratty…they are doing the best they can and we will care for them they best way we know how.

If you only take one thing from this post let it be this…if you are lucky enough to experience any of the situations I have listed above then understand that this is a very good day for the family.  It means their child isn’t in the hospital, isn’t laid out by a seizure, or isn’t too medically fragile to be with others.  It means we haven’tasked you to change a diaper, administer meds, handle a feeding or give up sleep to help them through the night.   It means our children are alive.   That they are healthy and happy and thriving.  And that is a blessing that families like mine will never, ever take for granted!

HAPPY HOLIDAYS FROM RUBYSOUP TO ALL THE EXTRAORDINARY PARENTS RAISING WONDERFUL CHILDREN WITH SPECIAL NEEDS!!

We have tried a million different ways to keep Quincy’s hands warm in the winter.  For quick trips outside my best option has been to simply slide a pair of fleece socks over hands.  I still have to take care of all her little fingers, but at least socks are stretchy and soft and I don’t have any finger or thumb holes to fight with.  However, if she is outside for any extended period of time, like when we go skiing, socks simply aren’t warm enough.

We have purchased super over-sized mittens and cut the cuffs but we find that if something is too easy to put on then it is too easy for her to throw off.  We have tried socks over her hands and then trying to slide them into mittens but that can be incredibly bulky.

Finally, a solution from my favorite company!  Check out these thumbless mittens with zippered cuffs from Adaptations by Adrian:

http://adaptationsbyadrian.american-data.net/Merchant2/merchant.mvc?Screen=PROD&Store_Code=ABA&Product_Code=132_137&Category_Code=mittens

These are so great….they are really warm and soft inside, but have a waterproof exterior.  The zippered cuffs allow them to be snug on the sleeve so Quincy can’t throw them off.  But, best of all, I can just lay Quincy’s hand in the mitten and zip it up!  No more pushing hands into little mitten holes!  So, thanks again to Adrian for another great product!  Keep ‘em coming!!!

Proper training isn’t just about the use of adaptive equipment, medical equipment, or administering meds, but must also include disability awareness and sensitivity.  I have noticed that often this seems to be lacking.  Caregivers, be it therapists, teachers, personal care attendants or even therapeutic recreation instructors must create trust with those that they are working with…they must create trust and they must protect that trust.  Children who cannot communicate or use their bodies to protect themselves or control themselves must feel completely safe in the hands of those they rely on.  If you betray that trust you will have broken a bond that may never be repaired.

I have seen Quincy shut down on people quicker than you can flip a light switch.  As soon as she is put in a situation that scares her or hurts her she is simply finished.  More than once over the years we have had to replace therapists because we know all too well that once Quincy doesn’t trust someone she simply will not work for them.

Last week an adaptive ski instructor took a young client down a particularly difficult run at our ski resort and dumped him. The instructor’s general attitude was that of a typical, healthy young man…no pain, no gain.  It’s not fun if you don’t push the envelope.  I wonder if that instructor has ever strapped himself into a bi-ski, strapped down his arms so he couldn’t use them, put himself entirely at the mercy of some hot-shot instructor who thought it would be cool to  jump into a black diamond run and possibly dump him?  I doubt it. 

The developmentally disabled process experiences differently than the rest of us.  Their trust is built differently, their fear is felt differently, and their ability to recover from something frightening is different.  You must understand that trust is everything and it should not be taken lightly…it must be protected and respected.

Rob and I have never, ever had an accident with Quincy in the bi-ski and I truly doubt we ever will.  We are too well-trained, too cautious, too overly-protective and, most importantly, we absolutely understand that if we scare her we may never get her back on the mountain again and that would be heartbreaking for all of us.

If the hospital is concerned about immunization rates of their staff they then need to get on-board with the groundswell of public concern about the safety of these vaccines.  Rates will not improve until people renew their confidence in the CDC and the safety of vaccines.  The problem is much more complex than something that can be fixed by force.  No one should have to chose between their employment and their very valid concerns for the own health.  People are smart and they have the right to make their own choices when it comes to their personal health.  We have the right to question treatment options.  No one has the right to threaten us in order to force medical decisions upon us.

When will the medical establish and the government realize that in order to keep our communities safe and to maintain on overall high rate of vaccination they MUST make our vaccines safer?  They must listen to the concerns of the public and focus their science on these concerns.  There is no better way to fuel the fire of mistrust of the public than to threaten.  For the sake of every single nurse who works for Providence I hope reason will prevail.  Otherwise good people will lose their jobs or good people will gamble with their health…it’s a lose-lose for anyone who has even the slightest concern about the efficacy and safety of the flu vaccine.

The U.S. News and World Report just published an online article (I believe it maybe be published be in the February 2009 issue) on the current scrutiny of vaccines which can be read at http://health.usnews.com/articles/health/childrens-health/2008/12/11/vaccines-get-new-scrutiny.html.  I was interviewed for this article and cited, ever so briefly, at the end.  Overall, I would say it is a fair article about vaccines and public concerns…it is certainly better coverage that most mainstream media have given to this topic.  If vaccines are of interest to you I would encourage you to take a little time to read the article.

Children like Quincy do very little weight bearing activity and because they do not move their bodies as much, or in the same way, as other kids their systems suffer.  The cocktail of medications they take can make this even worse.  For Quincy we do several things on a daily basis to combat constipation.  First, we try to always feed her meals that are high in fiber.  I also use Miralax daily in her water.  This product seems to be easiest to manage and isn’t fast-acting.  Through trial and error we have learned what dosage to use to keep her regular without having any surprises.  Finally, we will often give her an evening snack of a Pediasure with fiber to keep her regular and help with her other nutritional needs.

Even with all our efforts, sometimes she just gets backed up.  I have no idea why this occurs.  We are religious about being consistent with our efforts.  And still, sometimes it just doesn’t work.  We keep daily records on Q, to make sure we keep track of her meds and other important issues, so we know when it’s been a few days.  At this point there isn’t much left to do but the ever-dreaded enema.  They work.  It is always a last-ditch option but there are times when there is simply no other option.  Impacted bowels can be incredibly painful for our children and are a lot more miserable than an enema.  So, keep a box or two of Fleets in your medicine cabinet.  It’s not expensive and it is effective. Fighting the battle with constipation is worthwhile…Quincy sleeps better, eats better and feels better when her system is working properly. 

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.