Parent advocacy
H1N1 shot clinics at all of our Anchorage schools is cause for concern for this parent!
I am sending the following commentary to the Anchorage Daily News, but I have little hope that it will be published. I guess the upside to having your own website is that you can be sure your writing gets published somewhere. Since I’ve labored on this for two days, I figure it’s good enough for rubysoup! 
Earlier this month local news reported that the Anchorage School District would be sending home permission slips for parents to allow their children to receive the H1N1 vaccine at school. Few school districts across the nation have opted to run shot clinics in schools. This decision must raise concern among parents regardless of your position on the vaccine. The most obvious question that comes to my mind is why? Anchorage certainly has plenty of health care facilities, private practitioners and pharmacies that I am sure are all willing to provide access to the H1N1 vaccine and are the obvious choice for medical services for our children. When did the school district become such an expert on our children’s health care?
The concerns about the H1N1 vaccine are valid. If the District intends to administer the nasal spray then they will be giving your children a live virus vaccine. Some hospitals in the Chicago area have declined to have their own health care workers vaccinated with the FluMist because of the small, but very real risk, of actually spreading the virus to sick people. According to Tom Skinner, a spokesman for the CDC, “Theoretically someone who had recently received a FluMist vaccination could spread the virus to someone who was profoundly immunocompromised, such as AIDS patients”. How will a school nurse determine whether or not a person is, or is living with someone who is, immunocompromised? The package insert for FluMist does not recommend use in pregnant women because it can cause “fetal harm or can affect reproduction capacity”. What steps will the District take to assure no pregnant students accidentally receive this vaccine?
If the District does not plan to administer FluMist then they will be using an inactivated flu virus by injection. Each injection will contain 25 micrograms of mercury per dose. Is the District prepared to offer a mercury-free version of the vaccine for those parents who object to having a neurotoxin injected into their children? Are they publicizing the availability of this option? If that is not cause for enough concern, how about the fact that to-date there is no clinical trial data on the safety of either vaccine on pregnant women, children with asthma or on the interaction of this vaccine with other childhood vaccines?
Vaccines are a medical procedure. Patients medical records should be reviewed before giving a vaccine to be sure they are not susceptible to having a reaction. Both types of vaccine, for example, are grown in chicken eggs so anyone with an egg allergy should not be vaccinated. Additionally, any underlying or chronic medical condition should be known and discussed with a practitioner prior to vaccination. Will the District have access to our children’s medical records? Who is making sure that parents are given the opportunity to read and review the Vaccine Information Statement or the product inserts? Who will be recording in our children’s charts the shots they received, the manufacturer, the lot number and any adverse event that may occur? Most of the public is aware that we’ve lost our right to sue the pharmaceutical companies or the government when it comes to vaccines, but what happens if the negligence happens at the point of distribution? Will this become potential liability issue for the District?
By providing free, easy-to-access shot clinics in our schools for the H1N1 vaccine, the District is downplaying the serious, valid concerns about safety and necessity of the H1N1 vaccine. Whether or not to vaccinate yourself or your children against a flu that has proven to be relatively mild for healthy individuals is an important decision that should not be made lightly or because of convenience. The Anchorage School District has no business running shot clinics in our schools. They need to use their time, energy and expertise to educate our children and leave medical interventions in the hands of our primary care physicians.
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….
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.
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!
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.
Taking time to thank those who have worked so hard with our disabled daughter
As my regular readers know we have kept Quincy with her elementary special education team much longer than normal. We started our experience with school slowly, initially taking her for short periods of time just to receive therapy services. It was scary for us to think about leaving her with strangers for six hours a day and we needed to ease our way into it. As it turned out the professionals at Larson Elementary have had an extraordinary impact on Quincy life and ours, in ways they probably will never fully understand.
It seems like just yesterday that I clutched my frail five-year old daughter and forced myself to walk into an unfamiliar school to begin the process of integrating her into public education. Quincy is now 14 and I am again facing the same fears as I lay the groundwork for her to start high school.
Yesterday my husband arranged to speak to the staff and faculty at Larson Elementary during their staff meeting to thank them, personally, for taking such wonderful care of our daughter. It was important for us to do this in a private, personal forum where we could take the time to individually recognize those teachers who have had an impact on us and the lives of each of our children. Teachers have a rather thankless job…they take a great deal of criticism and are rarely thanked for their efforts. Most teachers do their jobs because they love educating children. I know that because in a past lifetime I was a teacher and my husband still is. It is a difficult, complicated, rewarding profession and we believe it is important to express our sincere appreciation to everyone who opened their classrooms and their hearts to Quincy.
We purchased an apple tree as a gift to the school from Quincy. It’s delicate, pink blossoms are a perfect reminder to all of Quincy’s unique blend of beauty, fragility, and strength. I hope they plant the tree somewhere where it will thrive and grow and mature and serve as a reminder to those who work at Larson Elementary just how much they touched our lives.
Quincy’s journey through public education has not been without it’s ups and downs, but it is most marked by an impressive group of people who have spent countless hours celebrating her successes and helping us overcome any obstacles that we faced. I don’t want to sugarcoat our experience, because it has been a lot of work on our part as well as that of the District. And it has required constant advocacy and action. But right now is the time to acknowledge everyone who has done their part to make Quincy’s life a happy place. Battles and stresses and worries will always be around the corner, but this is a milestone in Quincy’s to share with so many wonderful people. This is a time to celebrate!
Thinking of mother’s of disabled children on Mother’s Day
Today is Mother’s Day and most of the people in my life that I admire and respect are the mother’s of children with disabilities. When Quincy was injured the direction of my life changed dramatically. My hopes and dreams had to be modified. We all face things in life that force us to make adjustments, some bigger than others. This was a biggie, but not insurmountable.
I’m sure someone somewhere has written a book that assesses and analyzes the steps that we move through when we are faced with live-changing situations. I know there are books about stages of grief and coping with death, but I don’t know if they apply. And, I don’t know if we have all handled our situations the same way. I can tell you that it is a life-long process for me, adjusting to my life and tweaking my goals to fit my reality. This should not be viewed as bad and nothing irritates me more when people express pity for the life that I have. My life is spectacular.
Quincy has changed me. She changes the way I view the world, the way I interact with others, the passion that I put into my work, the challenges I am willing to face. I have more confidence, more wisdom, more strength and more fire today than I ever would have had this not happened in my life.
Mother’s day brings me to think about my network of amazing friends and mothers whose lives are similar to mine. Women with infinite patience, incredible strength and admirable loyalty. Advocate moms are the ones that inspire me the most. We are a group of women who will not be held back . We know our education and experiences raising our children have taught us more than any university or college. We understand the science and language surrounding our children, their diagnosis, their rights and the laws better than most PhDs, MDs, JDs or anyone else with initials after their names. We are smart and we are on a mission .
Happy Mother’s Day to every mom and warrior-mom that I know!!
Extended School Year (ESY) Programs for special education students
One of my regular readers brought up the subject of summer school the other day. It occurred to me that this is an excellent topic to discuss. Our school District offers a six-week Extended School Year (ESY) for special education students who qualify. In our District, the Individual Education Plan (IEP) can state that ESY services are required for one of three reasons; Emerging Skills, Regression Recoupment, and Self-Sufficiency.
For Quincy we usually qualify under Regression Recoupment. If there is a lengthy delay in her physical therapy or occupational therapy services, Quincy will definitely lose valuable skills. So, it’s important for her to have a continuity with her services and this is what ESY provides.
Our ESY session is three days a week, for six weeks. It is divided into a morning and an afternoon session, so the kids are really only in school for about 2.5 hours, three days a week. But, it’s enough time for her therapists to continue to build on her critical skills. Transportation to and from school is also available. The ESY program does not run in each school, but instead at a central location. Luckily for us it is a location quite close to our home (Finger Lake Elementary) and in the past we have provided our own transportation.
Our last day of regular school is May 22, so for us ESY is quickly approaching. I encourage anyone with a child who is receiving special education services through an IEP to be aware of the ESY programs and inquire as to your own child’s eligibility.
The transition to high school…continuing the process.
The weather has turned warm and sunny, the snow has melted, and the sounds of spring are all around us. This also marks the last couple weeks of the school for the kids in the Mat-Su Borough School District. They finish up on May 22, so we are in full swing with end of the year activities. And this includes putting together the pieces of Quincy’s transition to high school for next year.
This is still an emotionally difficult process, but Rob and I trudge through it with as much optimism as we can muster. After all, this is a very exciting time for Quincy. Remember when you were facing your freshman year in high school? This is a very big deal. But, for her parents it is tough. It is tough to know we will be turning her over to a whole new team, new teacher, new support staff, new everything.
The District is doing a pretty good job of easing into the process. I have met Quincy’s teacher and she has been able to spend a couple days observing Quincy’s current team and classroom environment. That is valuable time, as she is able to see for herself what kind of care Quincy requires. Tomorrow a support staff person who will be working with Quincy next year will begin her first of several (I hope) observations as well. It’s difficult to do too much cross-training at the end of the year because teachers and support staff really don’t commit to where they will be working often until late summer. So, it’s pretty extraordinary for us to have these two folks already putting time in getting to know Quincy.
Next week I will meet the principal of Quincy’s new school and discuss our goals and expectations. Again, it’s positive to see so many people take the time to get to know Quincy and her needs as well as helping us get comfortable with her new program. I am grateful to the District for working so hard to make this the smoothest possible experience for Quincy.
And, really, that is what it should be about. It’s not about making the parents feel better, it’s not about making the staff’s life easier, it’s not about other students…it’s about what is best for Quincy. Sometimes it’s easy to lose that focus…the child’s needs get lost among everyone else’s needs. But I think we are doing a good job of keeping everyone centered on Q.
So, that’s my transition update for now. I am pleased with the progress so far. We will be able to take advantage of summer session to do continued training. I am hopeful that next August brings an easy start to a new program…and that Quincy’s only worry is what to wear on the first day of school.
Categories
National Vaccine Information Center (NVIC)
