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!
Back to the vaccine safety battle…
I was back in Washington, DC again last week focusing on my vaccine safety work. The quarterly meeting of the Advisory Commission on Childhood Vaccines (ACCV) was held on June 4-5 in Rockville, Maryland. My term on this commission was supposed to only be three years, but that mark has come and gone and my replacement has not yet been named, so as long as I am the official consumer representative I will continue my efforts.
I often refer to my work on vaccine safety as a battle and I believe that is a fair term. There are definitely very strong divisions amongst the stakeholders and although we can find common ground it’s probably fair to say our differences far outweigh our agreements. So, in the arena that I participate it is a polite battle or a negotiation, if you will. I always tell my husband that I will do this work as long as I feel like I am effective, I am making a noticeable difference in progressing the safety of vaccines, and that I am not wasting my time, my family’s time or my family’s resources. I’m sure it’s not surprising that I assess these criteria frequently.
For the past year the major focus of my work has been on the Vaccine Safety Work Group (VSWG) for the National Vaccine Advisory Commission (NVAC). This work group has been asked to write a two-part White Paper that focuses on the issue of vaccine safety. I won’t bore you with the details of our work…if you are interested in what we have done thus far you can check out our recommendations for the first half of our task on the NVAC website. But, what I do want to share is that I have spent countless hours in the past year on this project…most of this time is unpaid, volunteer work. As a work group we only make recommendations to the committee that we report to and then hope that they will accept our work, pass our recommendations, and then move them to the Assistant Secretary for Health and Human ASHH) Services. Our VSWG recommendations included language that we really labored over, and included issues that really push the Center for Disease Control (CDC) to take a serious look at the issue of vaccine safety.
On June 2 the NVAC voted unanimously to accept our recommendations. It was really exciting to see that our work held up with minimal change will be moved on as recommendations to the ASHH. It told me that I did not waste an entire year of my life, time away from my family, and even personal financial expense to do this work. Perhaps the pieces of the work that mean the most to me will not hold up beyond this process….that is a very real risk. But, it held up far enough into the process to make a difference. It becomes public record. It will become part of a correspondence with decision makers at the CDC. It will become part of the historic record. That is why I do this work. And that is why I will continue to do it for a while longer.
Adaptive travel: motorhomes and wheelchairs
Our trip to Seward was a lot of fun. My only sibling, my brother, and his wife live in Seward and we don’t get to see each other as often as we would like, so it’s always a treat when we get together. My children adore their Uncle Ron and Aunt Janine and we don’t act too serious when we get to spend time together.
The ramps worked quite well and we are pleased that we seem to be on to a good solution to our travel issues with Quincy. But we have some kinks to work out which isn’t a surprise. There are always kinks when developing a new system. We knew the weight of the ramps was probably going to be an issue. It’s not that Rob and I can’t muscle them around (for a small woman I have an impressive amount of strength in my back and arms from lifting Quincy all these years) but moving them something we cannot do quickly. That is a problem when you are camping and it may be cold or wet or, even worse, buggy. When the ramps are in place, the door and the screen must remain open and so the rig quickly loses all it’s heat and can fill with mosquitoes. A lighter, more nimble, ramp that could be moved quickly in and out of place would really help cut down on this issue.
Also, we initially tested the ramps in our very level driveway, but when we camp our sites are rarely level. We had to raise one side of the motorhome substantially in order to be level, so the ramp was much steeper than we expected. But with a person at both the front and back it was still quite easy and safe to maneuver up and down. However, if Rob or I are alone with Quincy in the motorhome we would need to be sure we were on as level as spot as possible so the ramps aren’t too steep for one person to manage alone.
Rob found some lightweight aluminum ramps online that only weighed 8 pounds and look like a perfect solution to our problem. Only issue is getting them shipped to us. Unfortunately, if you live in Alaska (and probably Hawaii and Guam) most companies freak out when it comes to shipping anything of an unusual size. So, we will have to help the company understand that we are a part of the United States and we get Postal service as well as UPS and FedEx deliveries. We’ve been through this conversation about a million times and I don’t expect it to be a hurdle that we cannot overcome.
My intent is to put up some pictures of our present ramp system as well as whatever modified option we come up with. I am traveling for a week and do not have access to my photo files, but promise to do so when I get home.
Internet issues
I am out of town and having issues with internet access. I apologize for not gettingany posts up this week. I will put up new entries (they are already written) as soon as I have better internet access. Thanks for being patient.
Adapting motorhome travel for a wheelchair passenger
We are one week into our summer vacation and my children have been relentless in reminding me that it’s time to go camping. In fact, my two younger children have been spent every night this week sleeping in the motorhome impatiently awaiting our first trip of the season. I am so glad that my kids still enjoy our family getaways. I am told that some day they will get to an age that spending time on the road with their family in a motorhome will not be something that excites them anymore. I hope that doesn’t happen but, just in case, we are going to jump at every opportunity to camp with them that we can!
One issue we have struggled with as Quincy has gotten older and bigger is how to get her into the motorhome. It can be done with a two-person lift, but it’s tough manuevering up three steps and through a narrow door while carrying her. Someone always has to do this backwards and that takes a lot of coordination and strength. Although this approach works, it does depend on both my husband and I being physically strong and available any time we camp with Quincy. This has made it difficult for one of us to do it alone. So, if we want to go to Homer and my husband wants to go out on an all-day halibut charter, I am unable to move about with Quincy. Or, if I am on one of my DC trips (next week, in fact) then he can’t take the kids the camping without me.
So, it has become evident that for our independence we need a better solution. Our first issue is the wheelchair. The travel chair we use for Quincy is very wide, wider than even her daily wheelchair, and it’s difficult to get through even standard doors and thresholds. Her regular chair is skinnier, but heavy and there is no way to store it. One thing about raising a child like Quincy, who has been disabled since she was an infant, is that we have tons of equipment that we have used over the years. So, we started looking through that inventory and found a smaller travel wheelchair (one that folds up) that is skinnier than her current one. Quincy has gotten tall over the years, but is still very skinny, so the only real issue was to modify the smaller chair to accomodate her height and that was easily accomplished by adding a headrest extender.
Once we found a wheelchair that would fit through the motorhome door then we were left with finding a ramp. We found two steel folding ramps at Lowe’s that are mostly likely designed for loading a riding lawnmower into the bed of a truck. They are steel and that makes them fairly heavy and we would still like to find something lighter, but for the time being we have a solution. If we put the ramps up to the door and we use the smaller travel chair, then we can simply wheel her right in to the motorhome. Then, we just transfer her into a car seat, fold up the wheelchair and the ramps and store them in the cargo storage and we are off!
As with any new system that we develop to make our lives easier with Quincy we know there will be glitches. So today we will head out for a weekend camping trip to give our new system a trial run. This will give us the opportunity to work through all the unexpected issues that might come up while we aren’t far from home.
Last summer as we journeyed down the Alaska highway we saw a Class A Diesel pusher coach that had modified it’s front passenger door with a lift. It was owned by an elderly couple, the wife was wheelchair bound, that were spending their retirement years traveling the U.S. It was really cool. Someday, when my younger children have grown and moved on, I can see Rob and Q and I traveling the States in a rig like that. Until then, we will continue to make our smaller, more humble motorhome work the best we can so we can all be safe and have fun as we adventure out to see new places and new things.
An inspirational reminder of the potential of disabled children
Last week marked the end of another successful school year for my children. It’s hard to believe we are already in to our summer vacation. Having my family around 24-7 and enjoying endless warm, sunny days has thrown a bit of a wrinkle into my writing schedule. I can see that I am going to have to be a bit more disciplined in carving out time to write and share.
I do not have hands-on experience with autism, although I advocate endlessly for families who have concerns regarding autism and the possible link to vaccines. It is not a world I live in, but I have many friends who are raising amazing children who have autism or are on the spectrum. A very dear friend and colleague of mine, who lives in Virginia, has been quite an inspiration to me in my work. Her son, Sam, has profound autism. She faces a daily, on-going struggle to raise Sam and develop his full potential. Technology has allowed me to form strong bonds with many people, like Vicky, but does limit my ability to interact with their families and their lives. I have never met Sam, but I know much about him.
One day Sam told his Mother that Hotel California was his favorite song. He had apparently heard it on the radio. After hearing 3-4 more times, he sat down at his piano and played a nearly flawless rendition of the entire song. Whether you are raising a child with disabilities or not, you must watch Sam’s performance…you will be moved by the genius that is within this boy who, in many ways, is locked away from the world.
Here is what Vicky sent me, including a link that will allow you to watch Sam’s moving performance.:
Click here for the Age of Autism story and clips related to Sam’s
outstanding performance before a large noisy crowd at the Autism One
conference in Chicago on Saturday, May 23rd. This was his national
debut and there were at least 500 parents and professionals in the
audience and he was a calm and composed as can be.The link also goes to an essay that I wrote about one of the songs
that Sam sang, U2’s, Sunday Bloody Sunday, a well-known political
protest song. As I expected, this song sent the crowd over the top.
The autism community - especially those of us whose children were just
fine until they got a set of vaccinations - are about as battle-weary
as can be. My essay, titled “How Long Do We Have To Sing This
Song” (a line from the song) reflects that state but it also states
that the vaccine-injured communities are still engaged and will
continue to fight for the basic human right to voluntary, informed
consent based on sound science and not ideology. As I gear up for my
next round of meetings with Federal officials to overhaul the broken
vaccine safety system, just know that Sam’s courage and songs like
Sunday Bloody Sunday are the fuel that keeps me going and renews my
commitment to make sure that the system protects the health of everyone.In case you missed the original piece that got this whole thing going
- here’s the Hotel California link that is referred to in the
introduction.Also, Sam has now been asked to play at two additional national
conferences: National Autism Association, Ft. Lauderdale, FL 11/12-15
and the 4th International National Vaccine Information Center
conference, Reston, VA 10/2-4.And, lastly, he’s been asked to host a monthly radio show on Autism
One radio - he want’s to call it “Jam With Sam”.
My thanks for Sam and Vicky for showing us that we can never underestimate the true potential that lies within our children with special needs and for reminding me why my work is important and necessary. Sam, you are a star!!
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Recent Posts
- Raising children with disabilities and how it can affect a marriage
- Summer sandals that keep feet protected for children in wheelchairs
- Alaska SeaLife Center–great sensory input experience for the developmentally disabled
- Making our motorhome accessible
- Seward, Alaska: a great accessible community to visit!
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