rubysoup.com

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.

Tags: disability, stigma

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.

Tags: Adaptive skiing, developmental disability, disability, physical disability, skiing, therapeutic recreation

Accessibility is all about dependability

I was reminded today how much accessibility for those who are disabled is directly linked to dependability.  If you require assistance either from equipment, special transportation, or service providers, to do the things in life that most people can do on their own then you understand that dependability is the key.  If you cannot depend on your equipment to work, on your transportation to operate or your service providers to do what they are paid to do then you are stuck, unable to do what you need to do.  This is one reason that Rob and I are fiercely independent when it comes to Quincy.  We have been burned time and time again by service providers who are not dependable.   If you cannot count on help, then you must learn to do without help.  As an able-bodied adult I understand of the challenges that might cause someone to be unable to do what they’ve promised. A hairdresser gets sick and cancels, cars break down, schedules get change…but I can roll with that.  I can roll with it because I am able to do things for myself.  But, with Q I am much more unforgiving.  If you are in the business of assisting those who need assistance then you damn well better understand that you must be dependable.  Do not tell me you are sorry.  Do not tell me you’ll do it another time.  Do not tell me it is out of your control.  Do not tell me it will never happen again.  Just do your job, do it every day, do it with care and attention and, most of all, do it dependably. Then you are providing true assistance and accessibility for those who need it.  If your service is not dependable then all you are really doing is reminding those who need assistance that they are at your mercy and that is unkind, unfair and insulting.  If you are a service provider please understand and respect this responsibility.  Do your very best over the holidays to be dependable for those you serve.  Holidays are the time that they need it the most and will be the most hurt if you fail them.

The hardship and reward of vaccine safety advocacy

It takes me 12 hours of travel time to get to Washington DC and the same to get back home.  Twenty-four hours of travel to attend 12 hours of meetings.  Don’t get me wrong…it’s worth the effort.  There is simply nothing more powerful than a personal connection when you are working to make significant change on national vaccine policy.  To put a face to Quincy’s story and to engage in intelligent and productive discussions about vaccine safety is invaluable.  But, I liken the effort to childbirth.  Anyone who has had more than one child knows what I mean.  The only reason women go through childbirth more than once is because the joy of having children somehow miraculously replaces the reality of the pain of childbirth.  Basically, we forget…just long enough to find ourselves back in a situation we swore to anyone within earshot we would never, ever do again.  When I am in DC I have the opportunity to work with all kinds of amazing, influential people.  Attorneys who are preparing to argue before the Supreme Court, people who have advocated so effectively on behalf of those who have been injured that they have had movies made about them, Judges who make rulings than can change lives forever, scientists who science I find dubious but nonetheless must grudgingly respect for their own devotion to their side of this issue.  As I sit and talk and work with so many fascinating people I have these moments that seem surreal.  Seriously, I am a jeans and t-shirt soccer Mom from Wasilla who spends more time plowing my driveway with an ATV than I do riding the Metro or wearing a suit.  It’s funny to watch myself navigate this other world that is so distant from my reality.  I am like two completely different people and I know that my worlds will never, ever collide.  No one in my hometown or State really knows what I do and no one in DC will ever venture to Wasilla to see my life.  It’s a funny place to be, but one that I enjoy.  I am so humbled to have the chance to work on the issues that I so strongly believe in.  My input is listened to, considered and ever so often incorporated into the fabric of policy.  It makes what happened to Quincy have purpose…that her daily struggles are not in vain.  We are all handed challenges in life and it’s what we do with them that molds who we are.  I am so angry at what happened to Quincy, but I have to channel my anger into productive change to make sure this will never happen to another family, another child.  So, every few months I drag my butt onto those very long flights, ask my incredible husband to shoulder the ridiculous burden of handling the entire family on his own for a few days, and go back to fight the good fight.  There is not a shadow of a doubt in my mind that it is worth it.

Rubysoup goes to Washington

I usually try to post an entry on Monday or Tuesday of each week.  However, I am in Washington, DC this week doing advocacy work on vaccines and vaccine safety.   My schedule is very, very busy and I will not have time to write until I return.  So, I apologize for the delay and will have a new piece for you to read by the end of the week.  Thanks for your patience.

School bus transportation for special needs students

I have had issues establishing Quincy’s bus transportation to school.  The District is now doing what they should do for her, which is to provided door-to-door transportation from our home to school, but believe me it was a major battle to accomplish this.  It was not a battle to have bus transportation included in her Individualized Education Plan (IEP)…that was easy.  It was a battle with the people who coordinate Transportation for the district to bring a bus up our driveway for Quincy’s pick-up.  We have a short, sloped driveway.  A small bus can back-up it without any trouble.  The problem is that the bus contractor only uses full-sized busses with wheelchair lifts.  They cannot bring a bus of that size up my driveway.  Thus, the stand-off began.  We live in Alaska where the weather is downright brutal during the school year.  The district Transportation people told me they would only pick up Quincy on the street at the end of our driveway.  Quincy cannot be exposed to a -25 wind chill sitting on the street waiting for a bus.  Nor is it even possible to push a wheelchair up or down an icy, snowy driveway.  However the school district Transportation people looked at my yard said they would not come up my driveway.  I told them she would not be picked up on the street.  Long story short…I won,  but it was bloody.  I won because there are always good-hearted people who work for any company that are as frustrated as any of us about bad business and injustice.  I won because an employee of the bus company called me, asked to remain anonymous, and told me that the contractor had at least three small, 4-wheel drive buses with lifts that they were using for other students.  I won because armed with that information I knew that the district Transportation people were not concerned about Quincy but about the aggravation of having to re-work their bus schedules.  I won because it is the law that the school district transport my daughter to school…in fact, the district receives a lot of federal money to do that.  If we refuse bus service you can bet the district won’t refuse these funds.  I hate using the term “I won” but I think anyone reading this that has had to deal with school districts and their children’s rights to an education would equate many of their struggles to a battle.  It was a battle because in order to get the district to do what the law required I had to pull strings, I had to get angry, my blood pressure went through the roof, I cried, I lost sleep.  It’s amazing to me that sometimes even people employed to care for our children are the ones who can be the most insensitive.  I have great respect for the district employees at Student Support Services who have really been committed to seeing that Quincy gets the education that she needs.  Among this department are some amazing, professional, and sensitive people.  Ironically, the folks who contract the bus service, as well as the bus drivers and their monitors have been really incredible people, too.  It just the middle-men, the folks who handle Transportation for the district, who could use some training on disability awareness, sensitivity and even Wright’s Law.  Maybe they should be required to read rubysoup every day.  But, I’m afraid if they read this posting I may not see another bus in my driveway for a month.  Oh well….

Feeding a child with a limited ability to chew

Quincy has an excellent swallow reflex which we’ve been told is rather unusual for a child as disabled as ours.  What it means is that she does not have to be tube-fed.  The use of a G-tube for feeding comes with complications and it’s nice to not include those in her already complicated life.  However, Quincy doesn’t chew or use her teeth much…when she is given food she simply tastes it and if she likes it she swallows.  If she doesn’t she just leaves in in her mouth, mouth open, until it falls out.  Then she will clamp her mouth shut and refuse any more bites.  Luckily she is not a picky eater.  She appreciates flavor and variety…our only challenge is to find foods that are soft-solids that she can swallow without choking.  She is able to eat almost any pasta dish, especially if it has a heavy sauce.  She can eat casseroles and soft Mexican food, like enchiladas (one of her all-time favorites).  She eats oatmeal for breakfast (our favorite is Kirkland organic instant) and I pack a Stouffers frozen meal, like meatloaf with gravy or mac-n-cheese, for her school lunches.  We have found that finding food she will eat isn’t terribly difficult.  But the issue of feeding her can be.  If she is having seizure complications or medication interactions she seems to lose her appetite.  It’s quite a challenge to put calories into a child who has no desire to eat.  It’s times like these that, when all else fails, we can always resort to the occasional Pediasure.  Pediasure is great for the calories and nutritional content but also for the added fiber.  Constipation is a constant battle and any time we can add fiber to her meals to keep her regular naturally the better.  Quincy drinks water…that is her preference.  We must squirt little sips into her mouth from a water bottle.  It’s a slow process and requires a lot of attention and patience during the course of a day to make sure she gets all the hydration she needs.  Dehydration can lead to issues with her medications and also complicates the constipation issue further so it’s incredibly important to be sure she gets plenty of water every day.    What is great about Quincy is that she generally loves good food with lots of flavor.  She is very appreciative when I make the effort to make a big, home cooked meal.   Thanksgiving is one of those times because almost everything we make, from the main dish to dessert, is something she will enjoy.  It really is much more fun to cook for Q than my other children…she complains a lot less and generally eats a lot more.  She is the absolute perfect big-sister role model for them!

The challenge of seizure control

Controlling seizures is one of the most difficult, complicated hurdles we face with Quincy.  There is no magic formula…it is a dynamic, ever-changing situation.  There seems to be little rhyme or reason as to why she will have excellent control for stretches of time and then it all just goes to Hell.  There are some factors that are obvious, like whether or not she is fighting an illness or if she has had a tremendous period of growth and simply needs a higher dosage than before.  But, for those simple factors there is a multitude of factors that cannot be measured.  For one, Quincy takes a cocktail of seizure medications.  So you have to try to figure out which one might need to be increased.  Also, you need to consider how do the meds work on their own and how do they work in combination with the others?  And then we walk a fine line between wanting to keep her meds at a level that will control seizures but not so high as to have her be sleepy and drugged-out.   Some of her meds can’t be increased to a higher dosage without being toxic so if they are no longer effective then we must go through a very extended process of weaning her off while slowly bringing on-board a new medication that may or may not work.  I think her pediatric neurologist once referred to seizure control as voodoo and he couldn’t have been more correct.  Quincy has been on almost every seizure med out there and some that aren’t even out there but that we’ve had to purchase from other countries.  I mention this because up until a few weeks ago Quincy was having a great stretch of seizure control.  When she has these stretches she is alert, active and attentive.  But then we lost it and the seizures returned.  They wipe her out physically and then her struggles begin.  So today we begin a dosage increase with one of her new meds and hope that it will do the job, that it won’t over-medicate her, that she won’t suffer side effects and that our voodoo science will produce the magic formula that gives her the relief that she needs.  If not, we will tweak the formula another way…always striving to unlock Quincy from the seizures that control her so she can have a bright, clear mind and a healthy, happy life.

Vaccines and public concerns

My daughter, Quincy, was injured by a vaccine.  She was a perfectly healthy, happy child and within six hours of her 2-month DPT she began seizing uncontrollably.  The result of that singular incident changed her life and our lives forever.  Because of this, I have devoted myself to holding the government and the pharmaceutical companies responsible for safer vaccines…vaccines that do a better job of protecting our communities from communicable, infectious disease while at the same time not harming our otherwise healthy children.  Until there is a commitment to providing vaccines with as close to 100% effectiveness with zero risk  as possible I will continue my work.  We, as parents, have every right to demand that the bar be raised much higher when it comes to many, many vaccines we are being told to give to our children.  Today I serve as a consumer representative to the Advisory Commission on Childhood Vaccines (ACCV) and as a vaccine safety expert and a consumer representative on the Vaccine Safety Work Group (VSWG) of the National Vaccine Advisory Commission.  Both positions allow me a voice heard by decision makers at Health and Human Services.  It is a difficult task, as my views as a consumer represenatative are generally balanced by multiple representatives from health care, the pharmaceutical industry, and government and my story is not one that is popular.  But, I firmly believe that change will occur and I hope I will continue to be given the opportunity to shape that change.  Although I will not use my blog to persuade your opinion about vaccines in one way or the other, I will use this forum as a way to inform people of the opportunities available to give their own input into the process.  There are many divisions within the government that are working on the issue of vaccine safety and they all, at one point or another, will request public input.  I truly believe in this process and in the importance of people voicing their concerns.  Next week I will again make the very long journey to DC to attend the quarterly meeting of the ACCV.  This meeting is open to the public and allows opportunity for public input.  Specific meeting information, including directions or the toll-free teleconference number, can be found by clicking on my ACCV link.  Additionally, the VSWG will hold a series of public meetings in November, December and January that will seek public input into the Immunization Safety Office 5-year Scientific Agenda.  If you have an interest in participating please find information at the HHS-National Vaccine Program Office website (found by clicking this link).  And, finally, my role is to represent the consumers, people just like you who are raising children and struggling with your own questions about vaccines and their safety.  Feel free to contact me directly to provide input or ask questions and I will be sure that your concerns are heard and your questions are answered to the best of my ability.

Disability caregiver care

My intention with this blog is to be as consistent as possible with my writing.  My plan has been to write at least three times a week, preferably on Mondays/Wednesdays/Fridays.  However, I missed yesterday and I have such a lame excuse…it was the first day of the Nordstroms Half-Yearly Sale.  Yep…I am that shallow.  I have been a die-hard Nordstroms shopper since I was old enough to shop.  This year, with a tough economy and a much tighter budget, I am happy to report that I didn’t spend much.  But, it’s just the pure pleasure of walking around, checking out beautiful new clothes, smelling new fragrances and touching the leather of the new purses that makes me happy.  I am actually a fairly economical woman, with most of my purchases coming from Target, Costco, and Wal-Mart but deep down this Alaskan chick appreciates the finer things in life.  Rubysoup is about my experiences raising Quincy, but it is about me, too.  Maybe if I share little pieces of me from time to time then my readers will feel like they know me…maybe can even relate to me a little better.  Because, although my life is exceptionally different from most because of all the responsibility and challenges that I face with Quincy, there is a lot about my life that’s quite regular.  Tomorrow I will get back to my mission of sharing my knowledge about disabilities with you…but today was my escape and we all need to escape every now and then so we can appreciate all that we have.  So, splurge on a pair of shoes, buy a mocha and or sing at the top of your lungs when you are alone in your car…it will make all the diaper changes, medical bills and health issues seem just a little less easier to handle.