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.
Adaptive skiing Alaska
It’s time to start what I expect will be one of many posts about an activity that has brought great joy and fun to my family…adaptive alpine skiing. Every day I check the webcams at Alyeska ski resort and count down the days until Nov. 26…opening weekend!! Alaskans are unique…we live in a place of brutal winters and yet we simply love winter. And, what’s more, we love to play outside in the winter. Rob has been a downhill skier since he was a kid and I’ve learned to love it once I started living with him, so our children didn’t stand a chance. Unfortunately, when we realized that Quincy would probably never develop the ability to walk we thought we would have to give up skiing. But, lucky for us Alaska happens to have one of the finest on-mountain adaptive ski programs in the country. Challenge Alaska ski school changed our lives. We were able to use the facility to learn about the equipment and skills necessary to take Quincy skiing. We’ve been part of the Challenge family for at least seven years…first as clients and eventually on our own. We purchased Quincy her own bi-ski and spent hours on the mountain being trained on how to safely use it. Rob has earned his Professional Ski Instructors of America (PSIA) Level I Adaptive certificate and will soon be Level II. On the mountain we have complete freedom…this little family of mine can ski all day long without any one’s help or assistance. Of course, my other children learned to ski about the same time they learned to walk and they have incredible talent. Both of my children are members of the local ski team and spend their weekends honing their racing and free skiing skills. So, every weekend once the mountain opens you know where to find us…tearing up the slopes at Alyeska. Rob, Quincy and I aren’t hard to spot…we are the ones with the bi-ski and the huge smiles on our faces!!
Making Halloween fun for the disabled
Happy Halloween! Today is a very fun day for kids of all ages. It’s a little bit of a challenge for us to find a way to make the day fun for Quincy as well as our other children but we do our best. Usually what happens is Rob and I have to split up and divide our duties. Mostly this is our own fault…we’ve chosen to live in Alaska which is just a tough environment for Halloween no matter what your physical ability. I can remember growing up in the Interior of Alaska and trying to trick-or-treat in sub-zero temperatures and a bit of the thrill was lost. Being a fairy princess loses it’s overall effect when the costume is buried underneath layers of jackets, gloves, hats and boots. But, we made the best of it. Thankfully it looks like today is going to be relatively warm…in the mid-20’s which is jacketless weather for Alaskan kids. So, Quincy’s brother and sister will be able to go around the neighborhood and show off their costumes (Indiana Jones and Daphne from Scooby-doo, to be exact) without much discomfort. Quincy loves Halloween, but we’ve stopped doing the dress-up thing since she’s become a teenager. She loves to hang out at the door and help hand out candy. The wonderful costumes delight her. This year our porch is pretty well-decorated with cobwebs, blue lights, pumpkins and a flashing red danger sign and she loves the visual stimulation. We live an a pretty suburban little neighborhood, which is rather rare for Alaska, and so we will see no less than 300 trick-or-treaters come through in a few short hours. Quincy will get as much visual stimulation as she can take. After a while it will get to be a bit of an overload for both her and her cat and they will snuggle in a quiet room away from all the madness. So, except for the fact that Rob and I have to decide who will stay home and hand out candy and who will escort the kids around the neighborhood, we handle Halloween pretty well. I hope you all have a fun day with your kids and sneak as much chocolate from their goodie bags as you can!!
Independence and disability
When you are raising a child with multiple physical and developmental disabilities, a child who has struggled since birth or infancy, you find yourself slowly progressing into the world of adaptive equipment. But, it takes a long time. When our children are babies and even toddlers, there is so much mainstream equipment available, like car seats, cribs, bath chairs, strollers, etc… Quincy didn’t grow or develop as quickly as other children her age and so we were able to use regular baby and toddler equipment for a very long time. But, at some point we began to realize that we would have to move beyond this world and venture into the world of adaptive equipment. This is a difficult step for several reasons. First, there isn’t a manual to tell you where to go for help…you just find yourself with a need and no idea how to fill it. Suddenly the jog stroller was simply too small and there wasn’t anything left on the shelf at Wal-Mart or REI that Quincy would fit into. But, figuring out where to go and what is available is really hard. And, the world of durable medical equipment retailers could be likened to the world of used car dealers. It’s not exactly the warmest, most compassionate environment to walk in to. Second, Rob and I have always waited until the last possible moment to actually switch to some kind of adaptation for Quincy. I will do my best to explain this. It’s difficult to accept that your child will not be able to do something that most children can. You hang on to every hope that they will overcome their challenges. But, at some point you realize that they will need help. This is an emotional stage for parents. It means you have to accept the reality of your child’s limitations and you also have to accept that you can no longer do things for them by yourself. So, to the outside world the idea of purchasing a ramp van or a specialized wheelchair or a bathing system may seem like an easy decision, but it isn’t. It’s a complicated, difficult decision. Parents have to be allowed to make these decisions when it is best for them and their child. They should be respected for the time that it takes, for the care that they have used in making their choices, for how well they have handled the enormous responsibility that they face very day. I would suspect that this is similar to the difficulties faced by those caring for the elderly. I can only imagine just how fiercely I will hang on to my independence when I am fully aware that I am losing it. Once you give something up, you rarely get it back. This is the same way that I am with Quincy. I have come a long way in thirteen years with Quincy…we have a ramp van (but I’ve yet to give up my own vehicle…just can’t quite make that leap yet), we have a bathing system, we have wheelchairs and ramps, we have standers and seating systems and therapy equipment, and yet there’s still a lot we don’t have. I will always hold out hope for Quincy’s development and always wait as long as I can before letting go of another piece of independence.
Adaptive winter clothing
This morning our temperature was 6. Yup…6. That’s tough weather to raise any child in, but it’s particularly challenging for families who have children in wheelchairs with various other disabilities. Over the years I have struggled to find the best combination of cold weather gear that will keep Quincy safe and comfortable when she is outside but is also easy to dress her in. When she was little snowsuits were great…you could just slide her in one, zip it up, plop her in a wheelchair and head out. But, Quincy is now the size of a small adult and snowsuits just aren’t practical. Getting her into one resembles more of a WWF wrestling match than care-giving. Often what Rob and I do is design what we think would be the best item for Quincy and then we research endlessly on the Internet to find something close. Because we live in a climate that gets incredibly cold, we have to find gear that is much more insulated than most. It’s easy to find rain and wind ponchos, but to find gear that is wind and water-repellent at subzero temperatures is hard. Our research brought us to this great website, adaptationsbydadrian.com, which has really helped us find what we have been looking for. I use two of their products every day. This morning Quincy wore her pink, down puffy jacket by Obermeyer which is easy to put on and easy to cinch down with the wheelchair straps because down is so soft. Then, I covered her legs with a Leg Cozy which is lined with polar fleece but has a water-resistant outer shell. Finally, I cover Quincy and her wheelchair with a hooded, polar fleece lined Wintercape. It’s difficult to keep a hat on her, but the hooded cape does a great job of keeping her head warm and covered. Quincy is protected from head-to-toe with this gear and is probably warmerthan the rest of us. We still struggle to find winter boots that we can get on her feet. We have to purchase oversized boots so we can get them on, but we then struggle to keep them on. I haven’t quite found the answer to that issue but am constantly trying new products. With Quincy it’s all about zippers. If something can zip all the way open then we can get it on and zip it into place. If it has to be pulled on, it doesn’t work well. Adaptions by Adrian makes a fingerless mitten that zips all the way open which instantly solved our struggles to keep her hands warm. You can’t push a child’s hands into mittens or gloves unless they know how to move their fingers into place. The mittens that zip open so you can place her hand it and zip close are perfect! One other thing to note…because this company was started by parents raising a child with CP they really understand our specific needs. Not only are the items functional, but they are also stylish. The have great colors, like pink and purple and red, so Quincy can be warm and pretty every day which is equally important. So, a big thanks to Adrian and his family for helping us keep Quincy stylish and warm during our long, dark, cold Alaska winters.
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