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.
PBS interview on H1N1 vaccines and adjuvants
I have been an advocate for vaccine safety for many years. I have been able to influence policy-level change for vaccine safety by my efforts on federal commissions. But this effort is led by all kinds of advocates and we all bring unique strengths to the table. One thing I haven’t had much experience with, mostly by choice, is working with the media. I generally defer media inquiry’s to those who are more of a public voice for our movement. Barbara Loe Fisher, Jenny McCarthy and others have done a magnificent job of raising public awareness.
As I get further into this process I find myself speaking with the press. My most recent opportunity was last week with a correspondent from PBS who works with Jim Lehrer on the News Hour. She wrote a piece focusing on a controversial concern among safety advocates…the potential inclusion of unlicensed adjuvants into vaccines. In order for a vaccine to work, it has to have a substance in it that hyperstimluatesthe immune systems. Egg-culture vaccines usually rely on aluminum to do this. The newest technology are adjuvants. Adjuvants allow for rapid manufacturing of a vaccine using little antigen. The safety profile of adjuvants has yet to be established. The FDA has yet to grant approval for the use of adjuvants in any US product. Additionally, there is some evidence to show that adjuvants were experimented with in the anthrax vaccine and some who believe this is the cause of Gulf War Syndrome. If you are interested in more on that, I suggest reading Vaccine A by Gary Matsumoto.
With the growing demand for the H1N1 vaccine and the limited supply, the concern for safety advocates has been focused on the potential use of unlicensed adjuvants in H1N1. The CDC has stated from the start of the campaign that they would not do this, but as the supply has been slow it’s been a concern. And with H1N1 being declared a national emergency, it would be easy for the government to issue an Emergency Authorization to allow the use of an unlicensed adjvant in the production of the H1N1 vaccine.
Here is the link to the article written by PBS on this topic, which includes statements from my interview with her.
http://www.pbs.org/newshour/updates/health/july-dec09/adjuvants_11-09.html
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.
Adaptive P.E.–making physical education fun for students with disabilities
Quincy’s class has been bowling all month for adaptive PE. It has been such a blast watching the competition…which is quite fierce, I might add. What I love the most about these types of adaptive PE activities is that they are geared just for students with disability. Sometimes there is value in mainstreaming disabled kids and sometimes there is great value in designing activities just for them. Everyone is having fun, doing there best, using the adaptive equipment without people staring…it’s just a good time.
Pictured below is Quincy with her aide, Bonnie. You can see that a ramp is pushed up to her wheelchair so she can just push the ball down the alley. It’s a pretty cool set-up!
H1N1: What to do to keep our disabled children safe and healthy?
I try not to use rubysoup as an outlet for just my vaccine beliefs, but H1N1 has been pushed to the forefront of our lives and, ironically, for those of us raising children with disabilities it is of even higher priority. Our children have been identified as a high-risk group for H1N1 and, yet, this is not news to us. In fact, our children are a high-risk group for most viral infections, including the seasonal flu. The underlying medical conditions that most of our children face simply make them more susceptible to catching infection and to having a harder time healing once they have fallen ill. This is not the first, nor will it be the last, winter that we will be super vigilant in keeping Quincy healthy…it’s just part of what we do.
With H1N1 it’s very difficult to know how to separate the hype and hyperbole from the truth. It really doesn’t feel like anyone is being terribly truthful. The CDC clearly has an agenda, which is to achieve herd immunity to H1N1 at whatever cost necessary. The public seems unwilling to have their individual health, or the health of their children, sacrificed to achieve herd immunity…many of us want our individual health to be the priority. The media is using this as a political tool, using this singular topic to either support or rail against our current Administration. It’s interesting and frustrating to watch it all play out, particularly for someone who has spent years working on the issue of vaccine safety in an environment where few really cared. Suddenly, everyone cares, everyone is an expert and everyone has an opinion.
But the ultimate question remains: what to do? I try my best to educate people. You should know if you are a high risk group. You should know that being overweight, having underlying medical conditions or being pregnant makes you high risk. You should read the package insert on any drug or medication you are taking, including vaccines, so you understand the risks. You should see a doctor immediately if you are sick…anti-virals have shown to be somewhat effective. You should practice healthy habits, take your vitamins and exercise. You should consult with a doctor or health care provider that will respect your concerns and decisions and is committed to keeping you healthy.
Recently the American Academy of Pediatrics suggested to their membership that if pediatricians have parents who refused to vaccinate their children they should “fire” them as patients. This is an divisive, ugly, polarizing issue. You absolutely will face criticism for whatever decision you make. You should not be afraid. You should not be bullied into doing something you aren’t comfortable doing. I hope we all get through this winter in good health and if you do get sick, I wish you a speedy recovery. I hope that the winter of 2009-10 goes down in history as nothing more than a huge lesson learned about all the facets of immunization and immunization policy, about individual rights, and about informed consent.
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.
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…
Autism: Not in my family, you say? At 1:91 odds, it’s just a matter of time…
A new report released in Pediatrics today shows that the rate of autism has skyrocketed to 1 in every 91 children…one in 58 boys!! Unbelievable. My “world” has been responding to this news for the last several days and I am constantly surprised by the reaction. Why on earth aren’t people outraged by these numbers?! One in every 91 babies born today will be diagnosed with autism. One in 91!! That is an outrageous statistic!!
I know that there is much science yet to be done to rule out vaccines as an environmental trigger, although many people in the healthcare profession would suggest otherwise. I think they are terrified at what it would mean if we actually found out vaccines were at the root of this epidemic. It would mean that they had a hand in making an entire generation of children sick when, in fact, what they thought they were doing was making them healthier than ever. It is a horrible thought and I sympathize with their position. But, enough already! When will the number be too high for us to accept? Will it be one in 50, one in 20, one in 5?!
Here is what upsets me the most. Until you can tell me the cause autism, you have no business telling me what doesn’t cause it. Don’t tell me it’s not vaccine-related until you can give me answers. We can no longer afford to stand by and just hope to Hell that this epidemic doesn’t touch our own families. Not in my family, you say? Well, at 1:91 it’s soon going to be in almost every family in one way or another. Think about this…what happens when this generation of children becomes adults? When they become seniors? What happens when an autistic child develops Alzheimer’s? Do we know? And who is going to care for all these people? Whether it’s in your family or not, you no longer have the luxury to stand by and be passive.
It does not matter from what side of this issue we come at this problem, we simply must work together to find these answers. And, we must be willing to accept the answers and use them to once again have healthy children. We must stop pretending to know what we don’t, to drop the facade of knowledge, and to demand a legitimate focus on finding answers….real answers, not answers that are tied up in liability protection or risk communication, but just simple answers. It’s time to demand the truth however awful it may be.
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.
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National Vaccine Information Center (NVIC)
