Disability Awareness and Sensitivity
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!!
Age-appropriate behavior at Halloween by my disabled teenager
Quincy is fourteen and this year marked the first time that she simply wasn’t interested in Halloween. There was a noticeable change in my other children, too. What I had this year as a teenager who was generally annoyed by the constant ringing of the doorbell and two other children who had moved on from being a fairy princess and a super hero to a gruesome vampire and Jason from Friday the 13th. It’s another reminder that my children are growing up.
Halloween in most of Alaska is always marked by full-blown winter weather and this year was no exception. What we were lacking in snow we made up for in cold temperatures and strong winds. It was bitterly cold…one of the toughest Halloween’s yet. We actually had to give up on walking through the neighborhood and use the warmth of the truck to go door-to-door (aren’t heated seats the greatest invention ever?!).
Quincy was unimpressed from the start. I think she was looking forward to a quiet night in front of the fire watching a movie. Instead, her evening was constantly disrupted by the overall madness of Halloween. Somehow I think that was more about her being fourteen and completely bored with the silliness of her younger siblings than about her disabilities. The only time she got happy was when she was in her room, door closed, listening to her music away from all the chaos.
Sometimes it’s good to be reminded that locked within their disabled bodies exist people who have some very age-appropriate characteristics. I have written about this before, about how I feel bad for Quincy when people speak loudly to her or, even worse, do baby-talk. Sometimes people give her things that are more appropriate for a toddler than a teenager and I wonder what Quincy would say if she could use her voice. I have no doubt she would borrow a phrase or two from her brother, who has picked up some impressive bad language habits in middle school, to express herself. And you know what, I would give her a big high-five and then remind her that profanity is not acceptable by teenagers (or middle schoolers) in our home.
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….
School districts need to offer more to support the families of their special education students
I used to work for an organization in the Mat-Su Valley that helped families deal with all the complexities of educating a child with special needs. Unfortunately that little agency, a homegrown non-profit with a lot of vision but little direction or leadership, really couldn’t sustain itself and I have moved on. But the need for families to have help and assistance has not…that is the sad thing. I continue to be contacted regularly by parents who are seeking information, resources, support and guidance. I wonder why this can’t be provided by the school district itself?
How great would it be if someone from your school district contacted you on a semi-regular basis to just check in? To ask what is working and what isn’t? To see what resources you might need or whether or not you need some support? I find that once our children are in their classrooms and we, their parents, aren’t making a fuss about one issue or another the District is more than happy to leave us alone. And yet, I’m not sure that is what we really want. I would love the opportunity to share my feedback, to ask questions in a forum less formal than that of an IEP, and to provide praise and as well as concerns.
I think our District needs a parent liaison. Not an advocate, but a liaison who shows the human side of the educational process. Who shows that the District cares about their students and their families. I believe most educators (teachers, administrators, support specialists) absolutely do care, but they simply do not have enough time to do any more than is required for their classrooms. It is simply too much to ask of them and the answer is not to add yet another task to their already overflowing plates. In the grand scheme of a school district budget, particularly for special education, this would not be a big expense and the reward for having families become a part of the process instead of feeling alone and frustrated would be immense.
If you know of a District that has a person or department who acts in this capacity, I would love to know more about it. I would love to know about the types of experiences others have had navigating the complicated waters of special education. Please share your experiences with all of us. I am hopeful to hear something, but an expecting silence, because I suspect most districts operate they same way ours does, which isn’t bad, but could always be better.
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.
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 joy and stress of the first day of high school for my intensive special needs child
Monday will be Quincy’s first day of high school. I have spent an endless amount of time over the last six months preparing for this day. As I go over all my lists, it seems that I have everything ready. I have made multiple visits to the school last week, have meet every single person on Quincy’s team down to even the back-up substitute transportation personnel. I have taken down loads of supplies to her classroom. I don’t think there is anything left to do to prepare her for tomorrow. There is no question that this is going to be much more difficult for me than for her.
For the past eight years I have had all my children together in one school. Quincy has had the same team for years…people who know her as well as I do. It became more of a family than a school. This year I have Quincy starting high school, my son starting middle school and my youngest daughter still in elementary school. The comfort of having them all together is gone. The ease of one school, one schedule is gone. My life needs to be mapped out on an Excel spreadsheet to help me track three bus schedule, three lunch schedules, three schools with three distinctly different styles.
I will be burning up the road that runs between all three places. I will worry that my kids don’t have each other to care for. I will worry about being at the wrong place at the wrong time, the wrong place at the right time, the right place at the wrong time… My children are growing up and I couldn’t be prouder. But what I have found raising Quincy is that her getting older doesn’t equate to an easier life. In fact, things are much more complicated and difficult. Most parents enjoy this stage of life because as their children mature it affords them a freedom that they gave up raising babies and toddlers. The are delighted for their children to be old enough to fend for themselves, open lockers, buy lunch, even drive. High school is stressful for them in ways I will never understand, just as it is stressful for me in ways they will never understand.
I am hopeful for a relatively easy start. I hope that in a couple weeks we will have all fallen into a routine that is familiar. I hope that high school, middle school, and 3rd grade will be great adventures for my children. In the meantime, I hope that my hairdresser keeps plenty of my hair color handy to cover all the extra grey hairs that I am certain to sprout in the next couple weeks!
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National Vaccine Information Center (NVIC)
