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.
4th International Public Conference on Vaccines and NVAC webcast link
It’s a gorgeous day and it’s been a good week. The bus situation seems to be back to normal and I will be thankful for each day that goes by smoothly. Quincy has been quite healthy and happy this week and we have gotten back on a schedule that weans her off Depakote. We are just going slow and making very minor drops to the dosage and she is handling it well.
My other children have struggled with feeling lousy this week. I believe the over-hyped H1N1 scare doesn’t help. The school district and the schools have gone overboard to sound the alarm and, in my humble opinion, have scared the crap out of the kids and their parents. Any poor child who sneezes is sent home. My kids are healthy and tough, but they have been sent home from school more this week than any other time that I can remember. It’s rather absurd, but better safe than sorry I supposed.
My whole world of vaccine advocates is converging in Virginia today for the 4th International Public Conference on Vaccines being put on the agency that I volunteer for, the National Vaccine Information Center. I am sad to be missing the event this year, but I have been to DC nearly once a month since June and just couldn’t squeeze in yet another trip. But this would have been a good conference to attend and I hope to make it next year. I hear that it is incredibly energizing and uplifting to spend two days surrounded by people as passionate as I who work on the same issues. I have so many contacts and friends across the country that I work with daily on this issue that I’ve yet to meet in person. So, next year this will be a must-do for me.
I am posting a link to the webcast from my last two-day meeting in DC. It’s probably quite boring for most of you, but it does prove that 1) I actually do work when I go on these trips and 2) that this work is important and complicated. At the start of the first day I was officially sworn into my new position by the Assistant Secretary of Health and Human Services and towards the end of the second day I ranted a bit to the CDC about the safety profile of the H1N1 vaccines. So, I suppose those are the “highlights” from two very boring webcasts. If you find yourself with insomnia, you might want to view them by clicking here.
Special needs bus service to public school
Aaaaah….my favorite topic: School transportation a.k.a. special needs bus service. What I have come to learn is issues regarding transportation are mostly related to the contractor who is actually running the buses and not the school district itself. At least that is the case with our school district. My district liaison for busing is quite an advocate for Quincy and I have come to greatly appreciate her assistance in dealing with transportation issues.
The school year started very smoothly and the bus personnel did a great job of being prepared and keeping Quincy safe and happy. I should have known it was just a honeymoon period. Our awesome driver turned out to be a sub and after about three weeks he was replaced by the permanent driver. Then our awesome bus monitor moved off the route last Thursday. Today is Tuesday and since the monitor moved I have seen at least five different faces on Quincy’s bus…just one sub after another, sometimes a different person from morning to afternoon. And, to make matters worse, I suspect the regular monitor moved off the run due to the less than friendly nature of the driver. So, I have a grumpy driver and a revolving door of sub monitors who have little training and no experience with Quincy…this is not a good thing.
Next step, take my concerns to the district. The district isn’t happy to hear that the contractor is running things this way and has immediately jumped in to straighten these issues out. It is so nice to have an advocate at the district who immediately understood that this isn’t acceptable and started doing what was necessary to facilitate the necessary changes.
So, I’ve been told things will be better. I’ve also been told not to be shy about voicing valid concerns. Anyone who knows me knows that won’t be a problem. I am cautiously optimistic that this situation is corrected immediately. And, I must give props to the school district for making sure Quincy is treated safely and properly. Fingers crossed….
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….
Important meetings on vaccines and vaccines safety, including the H1N1 vaccine, Sept 15-16 and 17-18
I am heading out early Sunday morning for a week of meetings in DC. The National Vaccine Advisory Commission (NVAC) meeting will be Sept 15-16 in Washington, DC. Pre-registration for those who wish to attend in person closed on Thursday because the conference room was filled to capacity. Up to 500 participants are expect by phone. Because of the unusually high interest (due mostly to the H1N1 vaccine) this meeting will also be webcast. The meeting agenda and webinar information can be found on the National Vaccine Program Office (NVPO) website.
The quarterly meeting of the Advisory Commission on Childhood Vaccines (ACCV) will be held Sept 17-18 in Rockville, MD. Meeting information, including the agenda and call-in info, is supposed to be available at the Vaccine Injury Compensation Program (VCIP) website, although at last check nothing had been posted.
This will be my last meeting as a consumer representative on the ACCV and my first meeting a voting member and consumer representative for NVAC. Consequently, I will be in DC all week. Although I have good intentions of writing on rubysoup, I know the reality is that I won’t have the time. These trips are jammed pack with little to no downtime, so you probably won’t hear from me until the week of Sept. 20.
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.
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 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)
