The TRUTH, not fear, about required school immunizations
I know I haven’t written in over a week and I probably shouldn’t come out with an entry that is a little cranky, but as we gear up for the start of school I find myself increasingly annoyed with the volume of ads being generated by our state health department and local school districts about whether or not your child will be allowed to attend school next week if they do not have their (chickenpox) vaccine. That is simply untrue. What bugs me the most is that no one seems to think it important to tell parents they do have the option of filing a religious or medical exemption for chickenpox or any other vaccine. You can request this paperwork from your school nurse or your local health agency or you can find it online at in the Alaska School and Child Care Facility Immunization Manual in Appendix C. I must admit that it took me a while to find these forms on the State’s website…they seem to have them buried.
I understand the push to have children vaccinated, although I will never understand the pressure to vaccinate against diseases that are treatable. To me that is vaccinating for the sake of convenience and not public health. I am sure there are those who disagree and I understand their position…I just don’t think they are right. I believe that parents should have access to all available information in order to make informed decisions about their children’s health. That means ads should not be running that tell parents that their children will be barred from school next week if they do not have their shots. That is nothing more than a cheap scare tactic and it is insulting.
I hope all of my readers will make informed decisions about vaccines and their children’s healthcare. I do not expect everyone to agree with the choices that I make. My intention is only to provide additional important information on this topic. What I would hate is for one single parent in Alaska or anywhere to race out and get shots for their children because they are afraid. Shame on federal, state and local officials who subscribe to the risk communication strategy of fear!! And, it makes you wonder why such a hardline approach? Maybe they are afraid of informed parents asking tough questions about the efficacy and safety of all these vaccines they are pushing on our children. I say, keep asking questions, demanding answers and making federal and state health officials uncomfortable. After all, we are the ones who will have to live with the consequences of our decisions, not them.
The adventures and disappointments of traveling with a disabled child
I neglected rubysoup while I was away on vacation and am feeling bad about that. It was a very busy trip…would have been busy for any family, but add the challenges of traveling with a disabled child and it was crazy. Funny thing is, we vacation to rest and relax but find ourselves facing more stress and challenge than normal being away from home and all the things we need to make our lives easier. I often wonder if, in the long run, it’s worth the effort?
One thing I do know is that all my kids enjoy traveling and exploring. My husband and I do all that we possibly can to make sure our vacations are fun and stress-free for them. I wonder at what point in life you begin making that effort for yourselves? My children are still young and it’s important for them to have fun and experience the carefree nature of vacation. I guess the grown-up version will have to wait a while.
As usual, the best laid plans often fall to pieces. Since we chose to fly and use a rental car we knew we would add complication to our travels. Not having the ramp van would be challenging and in order for things to work we had to rent a vehicle we knew we could lift Quincy in and out. We could have rented an accessible van, but the irony is they are excessively expensive and we were on a budget. Anyway, we arranged to rent a Tahoe, which we knew from experience would have enough space for the three kids, all of Quincy’s equipment and supplies and was manageable for lifting her in and out of. Problem was, what we reserved and what we got weren’t the same. We got an SUV that was smaller with barely enough room for all our gear. Additionally, it was a clunker and all the warning lights started flashing about 100 miles into our drive. Finally, to cap it off, the rear liftgate broke and couldn’t be opened so we had to load and unload wheelchairs and gear out the side doors. This was a ridiculous amount of work! We finally pulled the plug halfway through our trip, changed our plans, returned to Seattle and gave the car back. Thankfully, the rental company was horrified and slashed our bill down so much we almost got the vehicle for free.
This put a real damper on our plan for Disneyland. We realized we had planned things that we simply couldn’t do. It was hot, we didn’t have a vehicle and we were tired. We were depressed that we had lost the ability to do what we wanted to do and were being forced to make plans based on what we physically able to do. Anyway, my husband and Quincy flew home…back to the quiet of Alaska and where all of Quincy’s equipment was that makes life easy with her. I took the two younger kids to Disneyland on my own. It was bittersweet. It was fun to share that experience with them but sad that their father couldn’t be a part of it. I did learn immediately that Quincy would not have enjoyed Disneyland in July. It was hot, crowded, and busy and there was little she could have seen or done with the crowds like they were. If Disneyland is something she should see, we need to take her in the off-season. It would have been a disaster to take her even if we had been able to.
So, we live and learn. Living with Quincy is a daily learning experience, that we know. We have learned to assess challenges and accept those that we know are just too big for us to overcome. We have matured in that way. We used to push through anything and be unwilling to accept our limitations. We know better and know that for our own peace of mind and physical health, as well as Quincy’s, there are things that we are better off just not tackling. No apologies, no excuses, no guilt…we will do what we can and if it becomes too hard, too difficult, too stressful, we have learned to let it go.
The two weeks we spent together on vacation were a blast. The week we spent apart was done simply for the benefit of our children. All my children were happy and fulfilled. As parents, we did the best we could to make our kids happy and I know we succeeded. I also know it is damn good to be home…maybe now I can get some rest!!
Airline travel with a child who needs mobility assistance
Well, last week we did the one thing that my husband and I dread the most…we traveled with Quincy on an airplane. We found it to be slightly more economical this year to fly to Seattle and use a rental car for our travels than to make the long drive from Alaska. The flight to Seattle is only three hours from Anchorage, but if you travel much by air you know that a million and one things can happen that can easily double travel time.
I am happy to report that this was the smoothest, easiest travel experience we have had with air travel in quite some time. First, since I rack up so many air miles flying to Washington, DC my MVP status on Alaska Airlines allows my guests and I to check our baggage for no fees. This was pretty significant since we checked six bags including a wheelchair and an adult car seat that were both oversized.
Security went as smoothly as it could. Since Quincy cannot get out of her wheelchair they must take her into a separate area and search her by hand. We have found TSA to be extremely sensitive about this process and are always very gentle and handle the search with dignity. They are also good about allowing either my husband or myself to be present for this process so Quincy isn’t nervous.
My other two children at ages that make them quite self-sufficient on planes. They sat together, ordered their own drinks and meals, and watched movies on their iPods. This is the first time that one of them hasn’t need a parent to assist them which allowed my husband and I the ability to sandwich Quincy between us and work as a team to take care of her needs. She really didn’t need anything. We booked the flight at a time that wouldn’t require a meal for her so other than drinks of water or Pediasure she didn’t need much. Since we cannot change her on the airplane we used a diaper with a extra-absorbent pad inside plus another diaper over that to avoid any leaks or accidents and this worked perfectly.
The uncontrollable factors this time just worked out well for us, too, and I guess I just have Fate to thank for that. The flight crew was incredibly kind and patient. They allowed us to board almost 15 minutes early, they assisted with an aisle wheelchair which made getting in and out of the her assigned seat easy, and they were just very kind to all of us. Also, our bags did not get lost and were, in fact, the first ones off the plane. Finally, our transportation was ready and waiting when we had our bags so we were whisked to our hotel in record time. Overall, it was as nice as it could have possibly have been.
Being less than an optimist, I take that to mean that I should be prepared for all kinds of difficulty on our return trip home. But, I have two more weeks before I worry about that, so for now I will enjoy the sunshine and adventures of our vacation and worry about that another day.
Rubysoup goes on vacation!
I thought I would be able to keep up a regular writing schedule while being organizing and packing for my family of five to go on a three-week vacation. Obviously, I misjudged my ability to juggle multiple tasks. Also, I seem to forget just how difficult it is to prepare to travel with Quincy for an extended period of time. It just takes a great deal of pre-planning and excellent organizational skills.
We leave tomorrow. We are flying…yet another piece to the puzzle that causes me great stress and additional preparation. But, the upside is that in three short hours of flying time we will be in Seattle, and that beats seven days of driving.
I will do my best to write while we travel…to share with you our struggles and our fun. But, I am heading out on a much needed vacation and will probably not write as often as I usually do. We will be gone until early August and I will certainly be back on a regular routine after that.
Thanks for your patience with me. I hope you are all having a wonderful summer and enjoying your own rest and relaxation with your families. One thing I have learned is the importance of taking time to play and get away from all the stresses and worries of everyday life. So, I wish you all fabulous weather and lots of fun…I will be in touch as I find time.
Keeping a disabled child comfortable in temperature extremes: heat!
It has been hot in Alaska this week and it just keeps getting hotter. Today I am pretty sure we broke 80. I realize for many people that isn’t hot, but for those of us living in the North, in the land of the midnight sun, this is considered almost oppressive!
It is as much of a challenge keeping Quincy comfortable in the heat as it is in the cold. I do not live my life confined to a wheelchair, but my suspicion is that it can’t be terribly comfortable to sit in one position when you are very hot or very cold. Those of us who are able to walk can move around, find shade, brush away bugs, find a breeze…but when you are at the mercy of others to understand how to make you comfortable it can be quite frustrating.
Quincy really isn’t a fan of the heat. She does like the feel of moving air and is can be made comfortable when placed in front of a fan. I love those little portable fans that you can buy…when she’s really uncomfortable I can whip one out of my purse and give her a little breeze.
I do the best I can to keep my girl comfortable. Tons of fluids, fans, shade, sunglasses, sunscreen…the same drill for my other kids. She is just a little more demanding and a little less patient when she gets too warm. I hope she can get used to it…we will be taking her to Disneyland in a couple weeks and you can bet it will be warm in Anaheim in July!!
Raising children with disabilities and how it can affect a marriage
Summer is such a busy time for my family as it is for all families with children. I’m sure my readers have noticed I have slowed a bit in my postings on my blog. I really hadn’t intended to change the pace of my writing, but can’t believe how quickly time slips by. I was checking the date of my last entry and was stunned to see how much time had already passed.
Making me even busier than usual is the fact that my husband is out of town for more than a week. This is the longest we have ever been apart in twenty years of marriage. Not only do I miss his company, I do find my task of keeping three children alive, healthy and happy that much more challenging as a “single parent”.
Rob and I just marked our 20th anniversary and it seems like a good time to reflect on how raising a disabled child can affect a marriage. When you get married and decide to have children, the image in your head is never the reality, even if you have a healthy baby. Babies are demanding and exhausting. We are inundated with photos of perfectly fit celebrity moms traveling the world with their children and we learn quickly that is far from reality. Without nannies, personal trainers, and assistants raising children is a full-time job that usually requires putting your personal health, fitness and sanity on the shelf for quite some time.
For those of us who are raising children with disabilities, the strain of being a good parent to our other children, a good wife to our spouses and a parent who can handle the daily stress of raising a child with exceptional medical challenges can be immense. I have seen many marriages fail under these circumstances. I did not know when I married my husband what kind of a father he would be…we were young and idealistic and hadn’t faced a single challenge in our lives. There was no way to even begin to predict what kind of partner he would be when faced with the circumstance of watching his firstborn, healthy daughter fall completely apart medically immediately following her first vaccination.
We struggled with guilt, exhaustion, denial, fear, grief. We had to readjust our hopes and dreams, I had to give up a career I loved, my husband had to make career decisions based on what was best for the family instead of what was most personally fulfilling, and our personal fitness and well-being became a distant concern. We had to learn to develop a supportive and loving relationship with each other despite the difficulties that we faced. We had to decide together that this would not take us apart but would make us stronger. In twenty years we have had some dark days, to be sure, and even now we make sure we take time to take care of each other as well as our children.
I do not presume to have the answers to how to hold it together when you face such a tremendous crisis in a marriage. We muddle along the best we can. But, if I do have any advice to share it is this…raising a child with disabilities is hard. It’s messy and scary. Do not let high-profile, successful moms raising children with disabilities, like Jenny McCarthy or Sarah Palin, make you think that it is realistic to have it all. There is a trade-off with every decision they have made. Do the best you can and be proud of who you are. Just as we see our children to be beautiful and smart and delightful we must view ourselves the same way.
Twenty years with my husband is a gift that I will not take for granted because for us this is just the start!
Summer sandals that keep feet protected for children in wheelchairs
Summer shoes are tricky for Quincy. She needs a sandal, like the rest of us, that allows lots of air to her feet on the warmer days. But, she also needs protection for her feet, since she spends all of her time in a wheelchair. Wheelchairs are well padded, but they still have bars and supports that can be kicked by feet. So, we always try to find shoes that keep her heels and toes protected. This gets tricky with sandals because they are often difficult to put on her foot or the toes are open and the heels are almost always uncovered.
But, to our delight, we have found that the sandal that our other children (and my husband) prefer for their feet works perfectly for Q. It’s the Keen Newport H2. These are great shoes! They cover the heel and have a protective toe box, are fairly easy to slip her foot into, and come in tons of fun colors! The only downside, if there is one, is the price. They are priced around $45 like a good pair of shoes. But, if you shop at the end of the season or wait for sales you can usually pick up a pair for less.
I love the tan marks these shoes make on Q’s feet, too. It’s always the sign of a great summer when we take off her shoes and she has stripes all over her feet from wearing her Keens. So, her new shoes arrived today and I expect lots of sunshine and warm days to follow…isn’t that how it works? 
Alaska SeaLife Center–great sensory input experience for the developmentally disabled
On any of our visits to Seward, we must take Quincy to the Alaska SeaLife Center. It is an amazing experience for people of all abilities, but for Quincy it is truly unique. She is simply captivated by watching the fish, otters and sea lions from the large, underground glass tanks. We can sit for hours in front of Woody, the giant male sea lion and watch him swim graceful arcs past Quincy in his tank.
Aquariums and hands-on learning centers are great places for children with disabilities to experience. Most of these places encourage children to touch and feel and smell and, for children like Quincy, the sensory input is powerful. Plus, aquatic centers have a wonderful sense of calm about them, which is something else that Q is drawn to. There is a serene, almost hypnotic, feeling that comes from sitting in front of a tank of beautiful fish.
We usually walk to the SeaLife Center so we use our large jog stroller for Quincy. She is very comfortable in it and the facility is large enough for maneuver easily with the larger stroller. This is Q and I in front of the sea lion tank. We are waiting for Woody, the very large adult male sea lion, to swim on by.
Here is Woody as he approaches Quincy and I. It seems as if he is looking right at us each time he swims by…I’m not sure he really is, but it feels like it.
In this image we are lucky enough to have both Woody and a female companion swim by us at the same time. It’s amazing the size difference between the two!
This is our favorite spot…Quincy and I can spend most of our time sitting right here just enjoying the show.
Making our motorhome accessible
We are back from another camping trip with the motorhome and this time I was able to get some photos of our ramp system. We’ve yet to follow through on ordering some lighter weight ramps, but I still wanted to show what our current system is like. It worked well again this weekend and is definitely something that Rob or I can do if we are alone, although having a second pair of hands definitely makes things much safer.
Ramps have been put into place and Quincy is in her “ramp chair” ready to come out of the motorhome…
We drop the wheelchair down in to the stepwell, which isn’t difficult, and then she is ready to come down the ramp. My handsome assistant is my husband, Rob.
Ta-da!! We are safely down! I think Quincy should be a little happier about the whole process, but I guess she was content in the warm motorhome and not all that thrilled about a walk in the brisk, coastal breeze. Sometimes, she is a typical teenager!
Seward, Alaska: a great accessible community to visit!
Seward, Alaska has proven to be another great community to visit if you are disabled or are traveling with a disabled person. We have found that there is much to do here with Quincy.
The boat harbor is a wonderful place to stroll around. There is a great bike path that runs the length of the community so we can stroll from one end of town to the other with Quincy at a safe and leisurely pace. The harbor has great shops and a wide boardwalk from which we can watch the boats and enjoy all the sights and sounds.
One of Quincy’s favorite places in Seward is the Alaska SeaLife Center which is an extremely accessible facility. The SeaLife Center has created a unique experience where we are able to watch sea life from underneath the surface of the water. Quincy is completely captivated watching the sea lions, otters and diving birds from their underground tanks. It is something to stand next to a glass tank and have a massive sea lion swim right on by! It also has an area where Quincy can touch sea life, like starfish and sea urchins. The sensory experience at the Alaska SeaLife Center is something delightful for all ages, but even more so for children like Q who depend on sensory input.
In addition to these attractions Seward also has a great community playground for the kids to play, wonderful restaurants that are very welcoming to families like mine, and, if you are the adventurous type you can always climb Mt. Marathon. The view from the top is breathtaking. But, be warned…it is a very challenging climb! We always enjoy gracious hospitality when we visit Seward and that, combined with great accessibility, definitely gives it a place in my rankings of Great Accessible Communities. If you get the opportunity to travel to Alaska, be sure to make Seward one of the places to visit!
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National Vaccine Information Center (NVIC)
