Caregivers and providers
It’s been a while…and it will probably be a while longer….
I haven’t written on rubysoup in quite some time. There hasn’t been any significant reason other than I have been very busy with my work and my family. However, I must admit that I have been rethinking my enthusiasm for the explosion of communication via the internet that has occurred in the last few years. I am fiercely private person who believes in discretion. Sharing my life on rubysoup has been a stretch for me in that regard but my efforts were validated by families like mine that found it a useful. But when you share in a public forum you allow your life to be viewed by all, even the curious or the snoopy…there is little to no control over the audience. I’m not entirely comfortable with that.
I have moved the majority of my communication to Facebook because I am able to control my readers and it allows for a two-way discussion which I so enjoy. Because like many of you, I prefer dialog. I do not presume to be such an expert that I can just talk and expect people to listen, nor do I enjoy that, and that is what blogging is about. I prefer conversation and Facebook allows me to do that with people from all over. Some of my loyal rubysoup readers have found me on Facebook and we are developing relationships which I find fulfilling and enriching.
Social networking sites like Facebook come with their own set of problems. There isn’t much standard etiquette yet about what is acceptable to share and what isn’t. That troubles me. There are lines that get crossed and it takes some getting used to. At what point is it okay to post other people’s business as your own news? I would say never. Also, you can be rolling along having a wonderful conversation thread and suddenly find yourself under attack by someone who disagrees. Just like in life, some people are just more polite than others. At least on Facebook you can control who has access to your posts and if you follow obvious safety rules, particularly when it comes to sharing photos and information about your children, then I believe it is a pretty great forum.
I am not sure I will abandon rubysoup just yet but might try to reinvent it so that it does a better job of reaching it’s intended audience. I want to connect with those who walk in my shoes so we can share our experiences and support one another. We all know how uncomfortable it is to be stared at when we go out in public with our kids or to have to patiently answer people’s questions about our children. For the time being I have no desire to bring more of that into my life with rubysoup. So I need to make some changes.
Until then, feel free to contact me personally via email or send me a Facebook friend request. Let’s keep the conversation alive!
Getting overwhelmed…
I must apologize to my readers…I have simply abandoned rubysoup because I have been overwhelmed with care-giving and the other responsibilities that go with this crazy life I lead. I need to do better to carve out time to write, but instead of beating myself up about this I have just decided to take a break. Plus, it’s the holidays and everyone is busy. So it will be my goal to start up on a regular schedule with this blog at the start of 2010. After all, there is still much to discuss!!
I thank you for your patience. Most of you are like me, raising a complicated family, and I know you understand that we all hit times where we simply are not in control. This last month has been that way for me. All I can do is react to whatever issue or crisis comes at me and there have been so many that I cannot do much else. But, this too shall pass and I’ve learned over the years to just go with it and not panic….easier days always come back around.
I wish for each of you good health, happiness, peace, rest and love. I hope you can stay away from emergency rooms and doctor’s offices as much as possible. I hope the holidays are full of laughter and appreciation. I will be back in 2010 with all my advice and opinions and thoughts. Until then…take care of those you love and take care of yourselves!
Happy Holidays from rubysoup!!
The importance of excellent special education support staff and remembering Anna Pitts
In terms of public school, the most important person in the day-to-day life of Quincy and students like Quincy with intensive special needs is their aide. The aides are the people that do the daily care-giving and who develop very complex relationships with our children. Quincy has had aides in the past that have become some of my closest and most trusted friends. They are the voices of our children when we are away, the learn to communicate, feed, change and care for our children as well as we do. The importance of a good special ed aide cannot be measured.
The flip side of that, of course, is how damaging a poor aide can be. I have been lucky enough to avoid such a situation, but have heard terrible stories from other parents about how awful a poorly trained aide can be. Having a person in such a position who is not prepared or does not have the heart for the job can set our children back years. I cross my fingers (and do a ton of advocating) at the start of every school year to make sure Quincy doesn’t get put in a situation like that.
This week our school district lost an exceptional special ed aide unexpectedly and very tragically. I did not know Anna Pitts personally, but I have seen her working with students like Quincy, I have spoken to parents who were lucky enough to have her work with their children, and I have talked with teachers for whom Anna worked and everyone raved about her. She was a genuinely caring woman who loved her job and the students she worked with. The impact of her loss throughout the school district has been overwhelming. She will never be replaced. She touched so many lives and brought much joy to her work.
My heart goes out to Anna’s family and my dear friend Amber who is Anna’s daughter and an extraordinary advocate for children with disabilities in her own right. There are no words to express how deeply felt your loss is to all of us.
Warm weather makes going to school easy for students with wheelchairs!
With the entire nation suffering from unseasonably cold weather those of us in Alaska are enjoying unseasonably fabulous weather. Yesterday it was sunny and clear and over 60. This is such a treat, considering that October can definitely be the official start to winter in Alaska. In fact, I have a memory of going to bed with my windows open years ago on October 15 and being awakened at 4:00 a.m. by a very loud popping noise. It turned out the temperature dropped to -15 overnight and the baseboard heater under my window had frozen, exploded and was flooding my bedroom. Since then we have been careful to know that our frigid winter weather can blow in overnight as early as mid-October.
But, this week we are riding our bikes without jackets and enjoying the last of the mild weather for 2009. It makes life easy with Quincy. No winter gear, no ice and snow…just another easy week. And, I’ll take all the easy weeks I can get…especially this time of year.
For the rest of you…I hope you get a quick reprieve from the nasty weather you are experiencing. Soon enough it will be up our way and your lives will go back to normal. Forgive us in Alaska for gloating just a teeny bit this week… 
The difficulties and rewards of using respite care for a disabled child
We do not use any agency or state provided services for Quincy. Rob and I are raising her on our own without help. We do this because we value our privacy, we value the privacy of our children, and because we believe that is how children, all children regardless of their ability, should be raised. Parents get the occasional night out with some help from a sitter, but the raising of children is their responsibility. This is not a judgement on those who have chosen to use regular care providers (or sitters) with their children. Sometimes it’s a necessity. People find themselves single parents or have to work odd hours and they must have help, just as they would use daycare for their otherwise healthy kids. I did not use daycare or preschool for my other children, either. It’s just a choice that we made and in no way would I claim that it is right or wrong. It’s just our way.
As our kids grow older my husband and I have come to realize that we do need an occasional afternoon away from all our daily life. But with Quincy’s special needs we cannot just call up a sitter. Someone who comes into our home must have the physical ability to lift and transfer Quincy, must know how to communicate with her, feed her and assess her needs. My other kids are old enough to help translate much of what Quincy needs, but there are few people in our lives that have any idea how to feed her or even give her a proper drink of water.
I have been so lucky to be blessed with a few select people who help us out. I usually try to recruit the special ed aides from the school who have spent the most amount of time with her. Their jobs are usually not high-paying and they are always looking to supplement their income in the summer, so it’s often a nice mix. I do not use care providers through an agency. For us, it is not an option to bring a stranger into our home. I have concerns regarding the personnel screening processes and the overall quality of care that I have seen from the agencies in our community. Maybe I just haven’t found the right agency yet.
Last night my husband and I had a rare date and it was a sweet moment. I like to look at my life in a positive light. When we sat across from one another at the dinner table, sharing a bottle of pinot grigio and holding hands, I noticed other couples who seemed almost bored. I guess the bright side to having so few opportunities to do something as simple as having dinner together make us appreciate and savor the moment more than most.
I am so thankful to have a dear friend in my life who I can completely trust my with children and I will never take her for granted. Having moments like the one last night are just too important and would not be possible with a true, trusted caregiver.
Swine flu, seizures, medication changes, winter…it’s been a long week!!
It’s been a long two weeks but I am slowly getting my life back in order. My trip to Washington D.C. was intense. Make no mistake, the efforts by the government to handle the swine flu “pandemic” are serious. Whether you believe it is warranted or not, the CDC is full-force, full-steam-ahead on this issue. There was nothing fun or easy or lighthearted about spending a week in the thick of these discussions.
Add to that the stress of being away from my family and it was tough. Quincy had a seizure meltdown when I was away so my poor husband, already shouldering the work of two full-time adults and working every day, had to handle that crisis as well. In our preparation for me to be gone we failed to realize that Quincy would be doing a fairly important step in her wean down of Depakote/increase of Banzel. Had we thought it through more carefully we would have postponed that step until I was back home. But, we didn’t and sure as you can count on rain in Seattle she had trouble. It was easily fixed with a med adjustment, but anyone raising a child with a seizure disorder knows that an “easy fix” entails lengthy long-distance conversations with neurologists and nurses and then much time and patience to allow the correction to work. Quincy was a total trooper about the whole thing and my husband, my Warrior-Man, handled it perfectly.
A week away usually means a few days home to get caught up. But, this time it meant a full week. It was just one of those weeks. Every time I turned around something went wrong or broke. Add to that temperatures that dropped to below freezing at night and a snow line that began creeping down the mountains. We had to make sure snow tires got put on vehicles, the motor home got winterized, outdoor plants and flowers dealt with, and our home was ready for winter. Then, we had to have our carpets cleaned due to a misfortunate accident with a huge cup of coffee and a stain I couldn’t remove. We have kittens that need to be spayed. Mid-term progress reports came out and we had school issues to work on. My husband didn’t get home until after 8:00 two nights this week due to a Challenge Alaska Board meeting and a school Open House. Oh…my…God!! Some weeks are tougher than others and this week has been a full-blown bitch. But on the bright side, if this week was so tough, the odds that next week will be smooth are pretty high. So, I’m going to keep looking at my glass half-full and hope for the best….
Headrests and bed head…a tough problem to deal with!
I am having trouble writing as often as I would like. I underestimated just how crazy my life would get with three kids in three different schools this year. I want to be involved in each of their school experiences and that requires a lot of travel time and some serious schedule coordination. In addition to that, my term on the Advisory Commission on Childhood Vaccines (ACCV) ends this month but I have been appointed to an even more important and influential commission called the National Vaccine Advisory Commission (NVAC), so my days of free advice and counsel to the federal government have been extended for another three years. Anyway, today’s post isn’t about vaccines but I thought an explanation about the infrequency of my writing was necessary.
This is intended to be a more practical post. My most recent day-to-day battle seems minor and yet causes Quincy great distress. Quincy spends a great deal of time in a wheelchair or lying down and the result is chronic bedhead. But she has an incredibly sensitive scalp and hates to have her hair combed. To make matters worse, some of her seating systems are made of a rubber-type material which does nasty stuff to hair. So we have this constant battle to keep her hair smooth and tangle-free when she is constantly rubbing her head against material that mats it up.
I have used every hair product known to man and there is no magic solution. I think for boys this isn’t a big problem because they wear their hair short. I have recently been purchasing the softest, smoothest pillowcases that I can find and placing them over the headrests that are the biggest problem. It has helped a lot. The smoother the headrest surface the less hair tangling and matting. It’s a simple solution to a problem that has been plaguing us for years. It’s not the perfect answer, but I think I am on the right track. Silky soft pillowcases, salon shampoo and conditioner followed by high-qulaity detangler…it all helps. And this is really important. Quincy is fourteen and looking good and having fabulous hair isn’t trivial. I refuse to cut her beautiful curls so I am on the hook to find a solution to this constant, nagging problem.
H1N1 and other fears: the complexity of making serious medical decision for our disabled children
Vaccines are my thing…I think most of my readers know this by now. It is what brought me into the world of disability. God (if there is one) gave me a healthy, perfect daughter. It was a man-made whole cell pertussis vaccine that took her from me and led me down the path I walk today. It was my choice as Quincy’s mother to vaccinate her…to do what I thought was best. It turned out to be a bad decision. I no longer take any decision regarding my children’s health lightly. I have learned the hard way that if there is a risk, and there is always a risk, then that risk can become reality in an instant.
Today we face the amped up threat of H1N1 influenza. We have the CDC and the federal government using intense pressure to have us vaccinate ourselves and our children. There are many theories out there about all this. Here are some facts to ponder: The federal government has spent nearly $2 billion dollars to purchase vaccines from pharmaceutical companies. The vaccines began clinical trials two short weeks ago…when they are offered to the public they will be virtually untested and will have a questionable safety profile. Insurance companies have joined with the federal government in the vaccination campaign. Insurance companies do not make money when they have to pay claims for doctor visits, medication and hospital bills. The H1N1 virus is mild at this point in time, but it does take a stronger hold on those with underlying medical conditions.
So, as parents of children who are medically fragile we must face this threat and make our own decisions. Do we use a vaccine that hasn’t been thoroughly tested? Quincy was given a vaccine that had been on the market for almost two decades and still suffered tragic consequences. Do we refuse the vaccine and risk our children getting ill? Who do we believe?
My advice is this…do your homework and educate yourself as much as you can. One thing you can do is watch what is occurring in the southern hemisphere where it is winter (the flu virus thrives in cold weather, which is why it was mostly dormant in the summer) and see what is being reported. In the age of the Internet it is quite simple to read newspapers from all over the world. Watch the trends in your community. Talk to a doctor or health care professional that you trust. Many health care professionals are voicing concerns about using an untested vaccine and you may be surprised at their advice. Purchase lots of hand soap, Purell and Kleenex and teach your children the importance of washing their hands and avoiding the germs of others as much as possible..
Parents shoulder the burden of their children’s health care decisions and it is an enormous responsibility. You must understand that we do the best we can. You have to forgive yourself if your choice leads to a result that you didn’t expect. We don’t always win. Quincy is living proof of that.
Expecting excellence from schools for our special needs children–an endless job for parent advocates
We are in day 4 of the new school year and Quincy’s move to high school has gone about as well as can be expected. Her high school is a very big place, with nearly 2400 students but built for roughly 1700. Even after being a high school teacher for 8 years, I would be lying if I didn’t admit that it’s a little intimidating being in the halls during passing. But kids are kids and, for the most part, everyone is respectful and nice. Long ago, as a teacher, I used to be mistaken for a student…I notice that doesn’t happen anymore. My years as a parent have left me with the start of some well-earned lines on my face that definitely tell the world I am no longer a kid.
I have been lucky enough to have Quincy’s aide from last year be with her this week to do training with her new team. This is working fairly well. Next week will be more stressful than this week because Q’s transition support network will be finished and she will be on her own with her new teacher and aides.
I miss the happy, fuzzy place that is elementary school. The high school intensive special needs classroom setting is pretty clinical. The other students in Q’s class appear to be more physically and medically fragile than her. This is a change for me. I am used to Quincy being the biggest challenge in the room and now I find her in a room full of kids with challenges even greater than hers. It’s probably good for her to be with classmates she can relate to but it makes the classroom seem more of a care facility than a learning environment. This is not meant to be critical of anyone, but an honest reflection on the difference from one program to another.
I hope over the course of the school year the room gets cheerier, brighter, noisier and full of a lot more laughter. Right now it is a rather serious, quiet space. But, again, this is only day 4 and people are still just settling in to their positions and getting organized.
To be honest, I don’t like sending Q to school much. I wish I were independently wealthy. I would bring specialists, therapists, artists and musicians to my home. I would have them spend one-on-one time making her day a rich, happy, enlightening experience. Maybe I should buy a Powerball ticket. Oh yeah…no lottery in Alaska. Darn!!! Guess I’d better just put on my parent advocate hat and keep pushing my local schools to expand their vision and strive for excellence with their special needs students.
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!!
Categories
National Vaccine Information Center (NVIC)
