This is the time of month when we have about $35,000 worth of medicine in the house.
Actually, that's kind of a low-ball estimate because the boys have put on a little weight, but it's winter time so they are less active. I expect a jump of about $5K here pretty quick. #2 is going to hit a growth spurt anytime soon.
See, the amount of Factor 9 the boys infuse is directly related to their weight. We shoot for infusing about 36 i.u. of BeneFIX per Kg of weight.
How in the world do we figure that out? While some families watch their kids weight with awe and wonder at how quickly they are growing, we watch with awe at how freakin' expensive they are! The boys keep track of their weight in pounds; I divide that number by 2.2 (1 lb. = 2.2 Kg); I multiply that number by 36 (that's the number of units of factor they need per Kilo of weight). Right now they are using roughly 1600 units of factor.
Each unit of factor costs about $.90. So, that's close to $1,500 for each infusion. We infuse each boy twice a week, which is $6,000 per week. Or $24,000 per month. We keep extra factor on hand in case there is a major injury or trauma which would require infusing 100 units of factor per Kilo of weight. So, $24,000 per month adds up to roughly $300,000 per year! Whew.
And, we are paying to a good price for factor. As I said, we pay about $.90 per unit of factor because we purchase it through our local hemophilia treatment center's pharmacy. That pharmacy is able to purchase factor at a lower rate than, say, Caremark, and is therefore (in theory) able to pass that savings along to patients. That doesn't always happen (the discount passed on the patients part) but that's an issue for a different post.
Most families pay closer to $1.00 per unit...some even more than that. In our world, pennies translate into thousands of dollars.
What does this mean to the average person? Not a lot. Except to point out that there are people living average, normal lives with a mountain of medical debt just to be "normal".
When the whole SCHIP veto went down I was really pissed off at individuals who are completely blind about the reality of health care in this country.
Sure, we have insurance that pays our medical bills for us. But that's because we were able to find work and move to a location that had better insurance. What about a family who doesn't have that flexibility? What about single parents? What about children in the foster care system? See, most insurance companies have a lifetime cap...at $300,000 per year, it doesn't take long to hit a 2 Million dollar cap! Or what about families who have high co-pays and deductibles for their insurance? A $5,000 out of pocket max is 6% of an $80,000 income. That's a lot of money...and I chose $80,000 randomly; many, many families are living on much less than this.
Each family is one traffic accident, catastrophic illness or chronic medical condition away from disaster. I don't understand how politicians can tell Americans that we have the best health care system in the world. It just isn't true. And anyone who thinks so has probably never really have to avail themselves of the full spectrum of health care in America.
Politicians hate single issue voters. I'm a dual issue voter. I vote based on politician's position belief in a woman's right to choose and Health care reform.
Showing posts with label hemophilia. Show all posts
Showing posts with label hemophilia. Show all posts
Monday, January 7, 2008
You Paid What??!!
This is the time of month when we have about $35,000 worth of medicine in the house.
Actually, that's kind of a low-ball estimate because the boys have put on a little weight, but it's winter time so they are less active. I expect a jump of about $5K here pretty quick. #2 is going to hit a growth spurt anytime soon.
See, the amount of Factor 9 the boys infuse is directly related to their weight. We shoot for infusing about 36 i.u. of BeneFIX per Kg of weight.
How in the world do we figure that out? While some families watch their kids weight with awe and wonder at how quickly they are growing, we watch with awe at how freakin' expensive they are! The boys keep track of their weight in pounds; I divide that number by 2.2 (1 lb. = 2.2 Kg); I multiply that number by 36 (that's the number of units of factor they need per Kilo of weight). Right now they are using roughly 1600 units of factor.
Each unit of factor costs about $.90. So, that's close to $1,500 for each infusion. We infuse each boy twice a week, which is $6,000 per week. Or $24,000 per month. We keep extra factor on hand in case there is a major injury or trauma which would require infusing 100 units of factor per Kilo of weight. So, $24,000 per month adds up to roughly $300,000 per year! Whew.
And, we are paying to a good price for factor. As I said, we pay about $.90 per unit of factor because we purchase it through our local hemophilia treatment center's pharmacy. That pharmacy is able to purchase factor at a lower rate than, say, Caremark, and is therefore (in theory) able to pass that savings along to patients. That doesn't always happen (the discount passed on the patients part) but that's an issue for a different post.
Most families pay closer to $1.00 per unit...some even more than that. In our world, pennies translate into thousands of dollars.
What does this mean to the average person? Not a lot. Except to point out that there are people living average, normal lives with a mountain of medical debt just to be "normal".
When the whole SCHIP veto went down I was really pissed off at individuals who are completely blind about the reality of health care in this country.
Sure, we have insurance that pays our medical bills for us. But that's because we were able to find work and move to a location that had better insurance. What about a family who doesn't have that flexibility? What about single parents? What about children in the foster care system? See, most insurance companies have a lifetime cap...at $300,000 per year, it doesn't take long to hit a 2 Million dollar cap! Or what about families who have high co-pays and deductibles for their insurance? A $5,000 out of pocket max is 6% of an $80,000 income. That's a lot of money...and I chose $80,000 randomly; many, many families are living on much less than this.
Each family is one traffic accident, catastrophic illness or chronic medical condition away from disaster. I don't understand how politicians can tell Americans that we have the best health care system in the world. It just isn't true. And anyone who thinks so has probably never really have to avail themselves of the full spectrum of health care in America.
Politicians hate single issue voters. I'm a dual issue voter. I vote based on politician's position belief in a woman's right to choose and Health care reform.
Actually, that's kind of a low-ball estimate because the boys have put on a little weight, but it's winter time so they are less active. I expect a jump of about $5K here pretty quick. #2 is going to hit a growth spurt anytime soon.
See, the amount of Factor 9 the boys infuse is directly related to their weight. We shoot for infusing about 36 i.u. of BeneFIX per Kg of weight.
How in the world do we figure that out? While some families watch their kids weight with awe and wonder at how quickly they are growing, we watch with awe at how freakin' expensive they are! The boys keep track of their weight in pounds; I divide that number by 2.2 (1 lb. = 2.2 Kg); I multiply that number by 36 (that's the number of units of factor they need per Kilo of weight). Right now they are using roughly 1600 units of factor.
Each unit of factor costs about $.90. So, that's close to $1,500 for each infusion. We infuse each boy twice a week, which is $6,000 per week. Or $24,000 per month. We keep extra factor on hand in case there is a major injury or trauma which would require infusing 100 units of factor per Kilo of weight. So, $24,000 per month adds up to roughly $300,000 per year! Whew.
And, we are paying to a good price for factor. As I said, we pay about $.90 per unit of factor because we purchase it through our local hemophilia treatment center's pharmacy. That pharmacy is able to purchase factor at a lower rate than, say, Caremark, and is therefore (in theory) able to pass that savings along to patients. That doesn't always happen (the discount passed on the patients part) but that's an issue for a different post.
Most families pay closer to $1.00 per unit...some even more than that. In our world, pennies translate into thousands of dollars.
What does this mean to the average person? Not a lot. Except to point out that there are people living average, normal lives with a mountain of medical debt just to be "normal".
When the whole SCHIP veto went down I was really pissed off at individuals who are completely blind about the reality of health care in this country.
Sure, we have insurance that pays our medical bills for us. But that's because we were able to find work and move to a location that had better insurance. What about a family who doesn't have that flexibility? What about single parents? What about children in the foster care system? See, most insurance companies have a lifetime cap...at $300,000 per year, it doesn't take long to hit a 2 Million dollar cap! Or what about families who have high co-pays and deductibles for their insurance? A $5,000 out of pocket max is 6% of an $80,000 income. That's a lot of money...and I chose $80,000 randomly; many, many families are living on much less than this.
Each family is one traffic accident, catastrophic illness or chronic medical condition away from disaster. I don't understand how politicians can tell Americans that we have the best health care system in the world. It just isn't true. And anyone who thinks so has probably never really have to avail themselves of the full spectrum of health care in America.
Politicians hate single issue voters. I'm a dual issue voter. I vote based on politician's position belief in a woman's right to choose and Health care reform.
Monday, September 17, 2007
Always More to Learn
Teachers have to go to all sorts of training workshops. We're always learning new things and trying to stay relevant. Mostly. Sometimes we just go to the workshops because we have to have a certain number of Continuing Education credits to keep our licenses active.
Last week I went to a workshop on confidentiality. Specifically, it was a workshop for educators about what constitutes student records, who can have access to those records, release of information stuff and disclosure.
It was interesting from the standpoint of a teacher and also from the perspective of a parent of children with a chronic medical condition who are also public school students.
I've been a strong advocate for parents rights in terms of what a school district must to do accommodate a child with specific health care needs. As a teacher of deaf and hard of hearing students, I advocated on behalf of parents and students to get school districts to have movies that are close captioned, TTD's (telecommunication devices for the Deaf), interpreters at all school functions, and interpreters for Deaf parents of hearing students.
As a parent of children who may or may not be considered "OHI" (Other Health Impaired), it's been important to teach other parents what they can and should ask of their school districts.
In terms of Hemophilia, many of us with children who are school age are very lucky. The vast majority of our kids don't need much in the way of accommodations. However, there is always a very real chance that one of our kids WILL need some sort of accommodation at some point. For example, a child with a knee bleed may need help getting to and from class. A child with a wrist bleed may need a note taker in class. A child with a more severe bleed may need to have a home bound tutor come to the house so that the child does not fall behind in his/her coursework.
All of these things are directly related to the child's medical condition and the impact of the condition (the school might like to use the word 'disability' or 'handicap') on the child's ability to learn.
We should not forget that our children have the right to a free and appropriate public education under the law. An appropriate education for a child with a bleeding disorder may mean something different during times of a bleed.
What does this have to do with the workshop? Well, first, it was conducted by an Attorney who also has a child with some interesting health issues. This attorney is VERY well versed in educational law and really knows her stuff.
She really impressed upon me how important it is to "know your stuff" in terms of what a school district is and is not obligated to provide. I also got to thinking how it's been very rare for me to talk to another parent of an "involved" child who has the advantage of being very well informed of educational law.
Did you know that emails between parents/schools are part of permanent school record? How about HIV status? Hepatitis status? Did you know that in the year 2007, school staff still try to access this information? I wonder what my boys' schools would think if they knew the boys have had routine HIV and Hepatitis tests. Would they jump to conclusions and assume that there is something to worry about there?
What about the fact that my kid told his principal that he hated hemophilia - and then the principal assumed that the statement meant that my son was depressed? Did that go down on some record somewhere??? Who DOESN'T hate hemophilia? Duh. We hate the disorder...the disorder isn't the child...and I'm very comfortable that my kids know the difference.
Anyway. I'm really glad that I met this Attorney. And I'm certain I'll be contacting her again to ask if I can pick her brain about a few other things. And if I meet someone in the community who needs some help in this area, I know exactly who I will call.
Last week I went to a workshop on confidentiality. Specifically, it was a workshop for educators about what constitutes student records, who can have access to those records, release of information stuff and disclosure.
It was interesting from the standpoint of a teacher and also from the perspective of a parent of children with a chronic medical condition who are also public school students.
I've been a strong advocate for parents rights in terms of what a school district must to do accommodate a child with specific health care needs. As a teacher of deaf and hard of hearing students, I advocated on behalf of parents and students to get school districts to have movies that are close captioned, TTD's (telecommunication devices for the Deaf), interpreters at all school functions, and interpreters for Deaf parents of hearing students.
As a parent of children who may or may not be considered "OHI" (Other Health Impaired), it's been important to teach other parents what they can and should ask of their school districts.
In terms of Hemophilia, many of us with children who are school age are very lucky. The vast majority of our kids don't need much in the way of accommodations. However, there is always a very real chance that one of our kids WILL need some sort of accommodation at some point. For example, a child with a knee bleed may need help getting to and from class. A child with a wrist bleed may need a note taker in class. A child with a more severe bleed may need to have a home bound tutor come to the house so that the child does not fall behind in his/her coursework.
All of these things are directly related to the child's medical condition and the impact of the condition (the school might like to use the word 'disability' or 'handicap') on the child's ability to learn.
We should not forget that our children have the right to a free and appropriate public education under the law. An appropriate education for a child with a bleeding disorder may mean something different during times of a bleed.
What does this have to do with the workshop? Well, first, it was conducted by an Attorney who also has a child with some interesting health issues. This attorney is VERY well versed in educational law and really knows her stuff.
She really impressed upon me how important it is to "know your stuff" in terms of what a school district is and is not obligated to provide. I also got to thinking how it's been very rare for me to talk to another parent of an "involved" child who has the advantage of being very well informed of educational law.
Did you know that emails between parents/schools are part of permanent school record? How about HIV status? Hepatitis status? Did you know that in the year 2007, school staff still try to access this information? I wonder what my boys' schools would think if they knew the boys have had routine HIV and Hepatitis tests. Would they jump to conclusions and assume that there is something to worry about there?
What about the fact that my kid told his principal that he hated hemophilia - and then the principal assumed that the statement meant that my son was depressed? Did that go down on some record somewhere??? Who DOESN'T hate hemophilia? Duh. We hate the disorder...the disorder isn't the child...and I'm very comfortable that my kids know the difference.
Anyway. I'm really glad that I met this Attorney. And I'm certain I'll be contacting her again to ask if I can pick her brain about a few other things. And if I meet someone in the community who needs some help in this area, I know exactly who I will call.
Tuesday, September 4, 2007
Exceptions to My Rules
So, our inservice with #1's new Jr. High School staff went well. I let him lead the discussion; I started off explaining that he has hemophilia and then let him explain what that meant. I could tell from the expressions on the faces of the staff that they were impressed with his ability to explain what it's all about.
He started off simple: "Hemophilia is a Bleeding Disorder. My body doesn't make a factor that's needed to stop my blood from clotting." Then he mentioned his liver specifically and that he does infusions twice a week to give himself the factor he needs. WE (both of us!) talked about some of the things we worry about most - head bumps, falls that could injure joints, and things like that. He also shared that he won't bleed faster than someone else, it just doesn't stop.
All good.
Last Thursday #1 came home and said that at lunch he'd scratched the roof of his mouth with a chip (a Sun Chip, to be exact) at lunch. Little, itty bitty scratch...no biggy. It kept bleeding and he hates that "quarter" taste in his mouth. He ate a Popsicle, pressure with gauze and an Amicar mouth rinse * and all was fine.
Friday morning he calls my husband and says that it's starting bleeding again, not a lot, but the taste is bugging him. So my husband goes to school with the infusion stuff so #1 can do a poke. But my husband only took one butterfly needle...and #1 missed (the first time he's missed in months) so my husband drives home and brings a needle back, they finish the poke and all is well. It's the first time my husband has had to show up at school...now he knows the rule of packing triple of everything!
At supper over the weekend my husband asks #1 "Who was that guy that walked through the nurses room while you were poking" and #1 says "The principal".
So, today I picked #1 up from school (he usually takes the bus) and the principal was outside so I decided to introduce myself to him (he couldn't be part of the inservice, he was out of the building). It's important for me to get some "face time" with everyone in the building that the boys come in contact with. (It's not a hemophilia thing, just a fellow teacher thing. We always remember the parents who make a point of introducing themselves - put the kid's face with the parent's face.) I remind him who I am, who #1 is and that he walked through during the infusion.
I - jokingly - say "I guess I forgot to tell your staff about the dangers of chips". And the principal says (very seriously) "Let #1 know that when he goes through the lunch line, he can tell the ladies that he can't have potato chips". Uhhh......
I reassure him that I'm joking about the chips and that #1 has broken an arm, jammed a thumb and done any number of bone-head moves, but you just never know what will end up being a pain in the neck.
And I also reassure him that chips aren't a danger.
DOH!
*We have found that if the boys are having oozing in the mouth, rinsing with severl cc's of Amicar for several minutes (we shoot for 5) works well. When then swallow it they both complain of upset stomachs. My boys have hemophilia B. Sometimes what works for one doesn't work for another.
He started off simple: "Hemophilia is a Bleeding Disorder. My body doesn't make a factor that's needed to stop my blood from clotting." Then he mentioned his liver specifically and that he does infusions twice a week to give himself the factor he needs. WE (both of us!) talked about some of the things we worry about most - head bumps, falls that could injure joints, and things like that. He also shared that he won't bleed faster than someone else, it just doesn't stop.
All good.
Last Thursday #1 came home and said that at lunch he'd scratched the roof of his mouth with a chip (a Sun Chip, to be exact) at lunch. Little, itty bitty scratch...no biggy. It kept bleeding and he hates that "quarter" taste in his mouth. He ate a Popsicle, pressure with gauze and an Amicar mouth rinse * and all was fine.
Friday morning he calls my husband and says that it's starting bleeding again, not a lot, but the taste is bugging him. So my husband goes to school with the infusion stuff so #1 can do a poke. But my husband only took one butterfly needle...and #1 missed (the first time he's missed in months) so my husband drives home and brings a needle back, they finish the poke and all is well. It's the first time my husband has had to show up at school...now he knows the rule of packing triple of everything!
At supper over the weekend my husband asks #1 "Who was that guy that walked through the nurses room while you were poking" and #1 says "The principal".
So, today I picked #1 up from school (he usually takes the bus) and the principal was outside so I decided to introduce myself to him (he couldn't be part of the inservice, he was out of the building). It's important for me to get some "face time" with everyone in the building that the boys come in contact with. (It's not a hemophilia thing, just a fellow teacher thing. We always remember the parents who make a point of introducing themselves - put the kid's face with the parent's face.) I remind him who I am, who #1 is and that he walked through during the infusion.
I - jokingly - say "I guess I forgot to tell your staff about the dangers of chips". And the principal says (very seriously) "Let #1 know that when he goes through the lunch line, he can tell the ladies that he can't have potato chips". Uhhh......
I reassure him that I'm joking about the chips and that #1 has broken an arm, jammed a thumb and done any number of bone-head moves, but you just never know what will end up being a pain in the neck.
And I also reassure him that chips aren't a danger.
DOH!
*We have found that if the boys are having oozing in the mouth, rinsing with severl cc's of Amicar for several minutes (we shoot for 5) works well. When then swallow it they both complain of upset stomachs. My boys have hemophilia B. Sometimes what works for one doesn't work for another.
Tuesday, August 21, 2007
Too Good to be True?
Whenever I share my perception...OUR perception...of how the boys are doing and what life is like with hemophilia, it feels strange. It feels like people think I'm making it up. I know a few other families who have kids who seem to be well adjusted like mine but there are far more who struggle.
My kids self infuse and have self-infused since age 8 and 7. They wear medical bracelets and have since birth. They share openly with their peers, adults and others about hemophilia. They have never "faked" a bleed (knock on wood). They don't have joint bleeds. They don't have breakthrough bleeds.
We have left them with babysitters, family and friends for extended periods without incident. We have taken them on several trips and never had a problem.
I dunno. Sometimes it seems too good to be true. And I feel like I'm going to jinx us if I say it out loud. But then I have to remember what I've forgotten. All the shitty ER visits. Facing off with the hematologist about starting prophy. Transitioning from port pokes to arm pokes to self infusion. Driving 1200 miles so they could go to a camp we felt confident in.
And then there's the whole moving from one state to another. But a lot of that stuff caused my husband and I grief, hopefully not so much the kids (except the move). I'd like to think the boys have remained relatively unscathed. Unusual senses of humor? Twisted? Too big for their britches? Oh, sure. But that's not hemophilia related. That's just us! :)
We do...each and every one of us...know exactly how fortunate we are that things are manageable. We've met people in far worse situations. That's a good thing because it makes us chuckle when others (clotters - as a commenter wrote) say "Oh my goodness, that must be so hard.
I suppose there's always my idea for a new "savings plan" for the family. I think parents should be able to pre-pay their kids' therapy. This way, if I have to do something (on purpose or on "accident") that may mentally scar them, I can just deposit an extra $50 in their therapy accounts to make up for it.
Tax-free therapy. I'm thinking it's the wave of the future.
My kids self infuse and have self-infused since age 8 and 7. They wear medical bracelets and have since birth. They share openly with their peers, adults and others about hemophilia. They have never "faked" a bleed (knock on wood). They don't have joint bleeds. They don't have breakthrough bleeds.
We have left them with babysitters, family and friends for extended periods without incident. We have taken them on several trips and never had a problem.
I dunno. Sometimes it seems too good to be true. And I feel like I'm going to jinx us if I say it out loud. But then I have to remember what I've forgotten. All the shitty ER visits. Facing off with the hematologist about starting prophy. Transitioning from port pokes to arm pokes to self infusion. Driving 1200 miles so they could go to a camp we felt confident in.
And then there's the whole moving from one state to another. But a lot of that stuff caused my husband and I grief, hopefully not so much the kids (except the move). I'd like to think the boys have remained relatively unscathed. Unusual senses of humor? Twisted? Too big for their britches? Oh, sure. But that's not hemophilia related. That's just us! :)
We do...each and every one of us...know exactly how fortunate we are that things are manageable. We've met people in far worse situations. That's a good thing because it makes us chuckle when others (clotters - as a commenter wrote) say "Oh my goodness, that must be so hard.
I suppose there's always my idea for a new "savings plan" for the family. I think parents should be able to pre-pay their kids' therapy. This way, if I have to do something (on purpose or on "accident") that may mentally scar them, I can just deposit an extra $50 in their therapy accounts to make up for it.
Tax-free therapy. I'm thinking it's the wave of the future.
Friday, August 17, 2007
Educators and Hemophilia
It's the beginning of the school year. Which means hairy scary for parents, students, and especially teachers. I am one and
have some of each so I feel tri-hairy scary.
I'm getting my classroom together. Setting up bulletin boards; putting those big sheets of butcher paper up and making the blank bulletin boards look nice and neat. It's not easy! The school I teach at has a VERY, VERY limited budget. We are grant funded and subject to the whims of the state legislature. We'll always have funding, but we never know how much.
I'm identifying my goals for my various students this year. And I teach high school resource (special education). So my goals for my students must help them achieve the goals they have on their IEPs. An IEP is an Individualized Education Plan. This plan is set up based upon the "qualifying condition" that has made the student eligible for special education services. Somewhere along the way, it was determined that the student needed extra services to make that student succesful in the classroom. Each and every public school student is entitled to a free and appropriated public education. What makes a student a "special education" student is that what is deemed appropriate for most students isn't appropriate for this student because of some qualifiying condition.
A specific learning disability, a behavior disorder, a physical limitation (it's not appropriate to ask a student with cerebral palsy to have to handwrite answers to a test), an emotional disorder, etc...that's what counts as a qualifying condition. Each year goals are written for the student and specialists are designated to help the student meet those goals.
My students have lots of goals, needs, accomodations....etc. And then there are the students who have other issues that make school a challenge, but don't qualify for special education services. Like a student with asthma or diabetes. Or one who is pregnant. Or who lives with his Grandma's neighbor in the basement and can't get to school on time because the alarm doesn't work, they don't have a phone and the dog has to be fed before the student can walk to school. (You laugh? Oh...the stories I could tell)
Anyway, each year millions of classroom teachers eagerly plan and prepare their bulletin boards and make the room inviting and appealing to students. We think about the things that will make a student comfortable and ready to learn. We try to figure out a way to organize their papers and assignments so that when parents call with questions, we can find the information they are looking for quickly.
I personally spent about $100 today just on stuff I can't get my school to pay for. Stuff like making my all file cabinets hanging file cabinets. You know...those metal frames you add to the drawers? We buy those. Those plastic "in-boxes" that students put their homework in at the end of the day? I bought 4. White board markers? I buy those. 3 Ring binders to put student work in? I bought 6 today. I bought paperclips and staples too...I need to buy my own stapler and electric pencil sharpener, too, but I didn't like what they had at the store.
I bought a "boom-box" for my room because the vast majority of my students work better when there is some music playing in the background. I use classical music often. If the class completes their work and is cooperative, I let them pick a CD to play. But if they are REALLY squirrley, I put in a little kid CD like Raffi or nursery rhymes....they hate it. I can get them to get back on task pretty quick if I have to pull out the "baby CD".
People that don't teach have no clue how much teachers spend on the "little things" that make an empty room a classroom. Those cute little note pads teachers send notes home on? Some come from gifts from parents, but we usually buy those. Those cute cut outs that teachers put student names on? We buy those. Colorful pens? Markers? Gel Pens? Cute scissors? We buy those. Classroom games? We buy those.
[Hey, by the way - instead of another mug, cute apple candle, Christams ornamet, bath gel, or novelty pair of socks, your kid's teacher would much rather have a gift certificate to the teacher store ($5 is fine, too), or a gift certificate to the video store, pizza place, grocery store...gift certificates are the bomb! We never, ever expect gifts from our students. We are touched that you think of us and greatful for your gifts...but after the first couple years of teaching, we have a lot of teacher themed stuff. And we really do have lives outside of school.]
We work to organize our teaching materials so that there is little "down" time in class. There's nothing worse that not being able to find the hand-out that you need. We check the lightbulbs in our overhead projectors and buy new markers. We make sure our computers still work and even though I'm using an ancient Gateway I still make sure I have internet connection so that I have something to reward my students with (computer games are big) when they do well.
We have to listen to the new and exciting things our principle wants to implement and figure out how we can work that in to our day. We have meetings about the new state laws and mandates and take that paperwork back to our room and try to find a place to file it where it won't be lost so that we'll remember when it has to be turned in.
We read the information from the Federal Government about how good or bad our school is and what we will have to do to ensure we keep all of our funding.
We check through all the items we ordered at the end of the year last year and see which things were approved and which weren't and then we modify our classroom plans accordingly. We see that the new LCD projector we wanted - that all the stuff that all the other schools have but we don't - wasn't ordered and we figure out how we are supposed to expose our students to new technology when we can't even get a decent photocopy machine in our building.
I take some time to wipe off the desks and remove as much of the grafitti as I can. What I can't remove, I try to cover. I especially hate the swastika on the back of a big file cabinet in my room. I've got it covered right now, but I don't know how long that will last.
In the midst of all this, I'm calling my own children's teachers and asking them for a few minutes to tell them a little about the boys and what they can expect the impact of hemophilia to have on their daily lives. I assure the counselor that I only need about 10 minutes, I just want some "face time". I mostly want to reassure them that even though the big, scary word "HEMOPHILIA" is on their records, we (my husband and I) aren't going to ask more of them.
If only every parent of every child with a little something "extra" had the experience of being a classroom teacher.
If only every classroom teacher had the experience of being a parent who has to reassure a school full of people that their child won't spontaneously blow up on the playground.
Public education has been getting such a bad rap for about 10 years. Most of the negative stuff comes from people who've never taught a thing in their lives. I hope that my children's teachers don't feel overwhelmed with my kids and one more thing to worry about. I sure go out of my way to tell them specifically what we expect.
Parents get a bad rap, too. No one wants to raise their kids to be brats. I don't expect my kids' teachers to be nurses....
Just a little sympathy, empathy and compassion on all sides would be and welcome thing.
What I expect my children's teachers to do about their hemophilia is very simple.
Rule #1 - Listen to my children. They've never faked an injury or only pretended to need ice before. I'm well aware that this may happen at some point. Let me be the one to make that call. Trust me, my punishment for faking will be far worse than what the teacher could come up with. However, the consequence of a teacher THINKING he's faking when he's not are worse than either of use could come up with. Give him the ice. Let him call me. I'll deal with that end.
Rule #2 - When in doubt, call me.
Rule #3 - Even if you're not in doubt, call me.
Rule #4 - If you don't like me, call his doctor.
Rule #5 - Don't mess with my kid. Don't single him out. Don't discuss his bleeding disorder aloud (with the class, other students) unless you have his explicit permission.
I think it's pretty easy.
Let's hope their teachers do, too!
have some of each so I feel tri-hairy scary.I'm getting my classroom together. Setting up bulletin boards; putting those big sheets of butcher paper up and making the blank bulletin boards look nice and neat. It's not easy! The school I teach at has a VERY, VERY limited budget. We are grant funded and subject to the whims of the state legislature. We'll always have funding, but we never know how much.
I'm identifying my goals for my various students this year. And I teach high school resource (special education). So my goals for my students must help them achieve the goals they have on their IEPs. An IEP is an Individualized Education Plan. This plan is set up based upon the "qualifying condition" that has made the student eligible for special education services. Somewhere along the way, it was determined that the student needed extra services to make that student succesful in the classroom. Each and every public school student is entitled to a free and appropriated public education. What makes a student a "special education" student is that what is deemed appropriate for most students isn't appropriate for this student because of some qualifiying condition.
A specific learning disability, a behavior disorder, a physical limitation (it's not appropriate to ask a student with cerebral palsy to have to handwrite answers to a test), an emotional disorder, etc...that's what counts as a qualifying condition. Each year goals are written for the student and specialists are designated to help the student meet those goals.
My students have lots of goals, needs, accomodations....etc. And then there are the students who have other issues that make school a challenge, but don't qualify for special education services. Like a student with asthma or diabetes. Or one who is pregnant. Or who lives with his Grandma's neighbor in the basement and can't get to school on time because the alarm doesn't work, they don't have a phone and the dog has to be fed before the student can walk to school. (You laugh? Oh...the stories I could tell)
Anyway, each year millions of classroom teachers eagerly plan and prepare their bulletin boards and make the room inviting and appealing to students. We think about the things that will make a student comfortable and ready to learn. We try to figure out a way to organize their papers and assignments so that when parents call with questions, we can find the information they are looking for quickly.
I personally spent about $100 today just on stuff I can't get my school to pay for. Stuff like making my all file cabinets hanging file cabinets. You know...those metal frames you add to the drawers? We buy those. Those plastic "in-boxes" that students put their homework in at the end of the day? I bought 4. White board markers? I buy those. 3 Ring binders to put student work in? I bought 6 today. I bought paperclips and staples too...I need to buy my own stapler and electric pencil sharpener, too, but I didn't like what they had at the store.
I bought a "boom-box" for my room because the vast majority of my students work better when there is some music playing in the background. I use classical music often. If the class completes their work and is cooperative, I let them pick a CD to play. But if they are REALLY squirrley, I put in a little kid CD like Raffi or nursery rhymes....they hate it. I can get them to get back on task pretty quick if I have to pull out the "baby CD".
People that don't teach have no clue how much teachers spend on the "little things" that make an empty room a classroom. Those cute little note pads teachers send notes home on? Some come from gifts from parents, but we usually buy those. Those cute cut outs that teachers put student names on? We buy those. Colorful pens? Markers? Gel Pens? Cute scissors? We buy those. Classroom games? We buy those.
[Hey, by the way - instead of another mug, cute apple candle, Christams ornamet, bath gel, or novelty pair of socks, your kid's teacher would much rather have a gift certificate to the teacher store ($5 is fine, too), or a gift certificate to the video store, pizza place, grocery store...gift certificates are the bomb! We never, ever expect gifts from our students. We are touched that you think of us and greatful for your gifts...but after the first couple years of teaching, we have a lot of teacher themed stuff. And we really do have lives outside of school.]
We work to organize our teaching materials so that there is little "down" time in class. There's nothing worse that not being able to find the hand-out that you need. We check the lightbulbs in our overhead projectors and buy new markers. We make sure our computers still work and even though I'm using an ancient Gateway I still make sure I have internet connection so that I have something to reward my students with (computer games are big) when they do well.
We have to listen to the new and exciting things our principle wants to implement and figure out how we can work that in to our day. We have meetings about the new state laws and mandates and take that paperwork back to our room and try to find a place to file it where it won't be lost so that we'll remember when it has to be turned in.
We read the information from the Federal Government about how good or bad our school is and what we will have to do to ensure we keep all of our funding.
We check through all the items we ordered at the end of the year last year and see which things were approved and which weren't and then we modify our classroom plans accordingly. We see that the new LCD projector we wanted - that all the stuff that all the other schools have but we don't - wasn't ordered and we figure out how we are supposed to expose our students to new technology when we can't even get a decent photocopy machine in our building.
I take some time to wipe off the desks and remove as much of the grafitti as I can. What I can't remove, I try to cover. I especially hate the swastika on the back of a big file cabinet in my room. I've got it covered right now, but I don't know how long that will last.
In the midst of all this, I'm calling my own children's teachers and asking them for a few minutes to tell them a little about the boys and what they can expect the impact of hemophilia to have on their daily lives. I assure the counselor that I only need about 10 minutes, I just want some "face time". I mostly want to reassure them that even though the big, scary word "HEMOPHILIA" is on their records, we (my husband and I) aren't going to ask more of them.
If only every parent of every child with a little something "extra" had the experience of being a classroom teacher.
If only every classroom teacher had the experience of being a parent who has to reassure a school full of people that their child won't spontaneously blow up on the playground.
Public education has been getting such a bad rap for about 10 years. Most of the negative stuff comes from people who've never taught a thing in their lives. I hope that my children's teachers don't feel overwhelmed with my kids and one more thing to worry about. I sure go out of my way to tell them specifically what we expect.
Parents get a bad rap, too. No one wants to raise their kids to be brats. I don't expect my kids' teachers to be nurses....
Just a little sympathy, empathy and compassion on all sides would be and welcome thing.
What I expect my children's teachers to do about their hemophilia is very simple.
Rule #1 - Listen to my children. They've never faked an injury or only pretended to need ice before. I'm well aware that this may happen at some point. Let me be the one to make that call. Trust me, my punishment for faking will be far worse than what the teacher could come up with. However, the consequence of a teacher THINKING he's faking when he's not are worse than either of use could come up with. Give him the ice. Let him call me. I'll deal with that end.
Rule #2 - When in doubt, call me.
Rule #3 - Even if you're not in doubt, call me.
Rule #4 - If you don't like me, call his doctor.
Rule #5 - Don't mess with my kid. Don't single him out. Don't discuss his bleeding disorder aloud (with the class, other students) unless you have his explicit permission.
I think it's pretty easy.
Let's hope their teachers do, too!
Monday, August 13, 2007
Legalese
So we are in the midst of doing a project for a company about living with a bleeding disorder.
Only "they" don't want us to say Bleeding Disorder, we are supposed to only say Hemophilia.
Except this project will be shared with a very large audience of people who live with and treat people with a wide range of bleeding disorders, not just hemophilia.
Which makes me frustrated because my goal in participating in educational pieces is that as an educator and parent, I want everyone to benefit. We should be inclusive rather than exclusive. When someone tells me I can or can't phrase someting a certain way it makes me more adamant about doing so.
Only "they" don't want us to say Bleeding Disorder, we are supposed to only say Hemophilia.
Except this project will be shared with a very large audience of people who live with and treat people with a wide range of bleeding disorders, not just hemophilia.
Which makes me frustrated because my goal in participating in educational pieces is that as an educator and parent, I want everyone to benefit. We should be inclusive rather than exclusive. When someone tells me I can or can't phrase someting a certain way it makes me more adamant about doing so.
Wednesday, August 8, 2007
Hemophilia Education
When the boys were little, especially when #1 was born, there was a fair amount of information available about what hemophilia entails. There was one book in particular that I read cover to cover. It was informative and filled with personal anecdotes.
There were also books and pamphlets put out by the National Hemophilia Foundation, various homecare companies, and drug companies. No one source really hit the nail on the head, but combined we had a fairly decent picture of what was in store.
Or so we thought. Looking back, none of the materials were totally accurate. The "bible" of hemophilia literature, put out by another mother painted a grim picture. And none of the materials really focused on Hemophilia B specifically. We were told that Hemophilia B was different than Hemophilia A and that we would have an easier go of it. Which is true, but that doesn't make a new parent feel any better.
Sure, we B's bleed less frequently. Sure we had a recombinant product pretty quick. But that's still the only recobinant product we have. Product choice? Not if you want a recombinant product. And if you have hemophilia B and an inhibitor. Nighmare city.
And in terms of what's available NOW for new families? I don't know if it's really that much better.
I primarily see one voice in the world of hemophilia educational materials. It's one mother who has managed to corner the market. And what frustrates me is that she doesn't experience hemophilia very much like those of us who deal with severe hemophilia. In my opinion her family's experience is not what most of us deal with. And there's little to nothing from the older members of the hemophilia community.
I think new parents need to have all the facts; especially concerning the HIV/Hepatitis crisis that hit the hemophilia community. And that's very much glossed over these days. I don't think that our educational materials stress the importance of blood safety nearly enough. I think that this information should be part of hemophilia 101. While the drug companies and NHF may not want to rehash their mis-steps and failures, it's vital that they own up to it all so that consumers can make sure it never happens again.
In terms of educational materials, I've seen many ideas proposed and brought "to the table" only to have those ideas twisted and molded into someone else's vision of what families need to know. I've seen materials edited and "dumbed down" because someone thought we consumers wouldn't understand all those big words. I guess I resent that one voice or person seems to be regarded as the model of parental advocacy and the last word in what is or is not appropriate to teach families. I don't like the notion of others deciding how much or what type of information is available to consumers.
I think we should raise the bar and ask people to expand their knowledge and understanding rather than assume they can't handle it. I don't think that any one person or organization should have a monopoly on educational materials. Let's open the door to some new ideas and information sources.
My boys want to hear from the generations ahead of them. They want to know what's in store from the guys who have been there and actually experienced these things. They don't want to hear a Mom's perspective on the teen years or college years. They want information by and for that age group. And I want it to. How we live and how I deal with their growing up will be different from another Mom's experience. I want to hear a young guy talking about how he chooses to tell his friends and potential girlfriends/boysfriends about living with hemophilia.
But maybe that's just me.
There were also books and pamphlets put out by the National Hemophilia Foundation, various homecare companies, and drug companies. No one source really hit the nail on the head, but combined we had a fairly decent picture of what was in store.
Or so we thought. Looking back, none of the materials were totally accurate. The "bible" of hemophilia literature, put out by another mother painted a grim picture. And none of the materials really focused on Hemophilia B specifically. We were told that Hemophilia B was different than Hemophilia A and that we would have an easier go of it. Which is true, but that doesn't make a new parent feel any better.
Sure, we B's bleed less frequently. Sure we had a recombinant product pretty quick. But that's still the only recobinant product we have. Product choice? Not if you want a recombinant product. And if you have hemophilia B and an inhibitor. Nighmare city.
And in terms of what's available NOW for new families? I don't know if it's really that much better.
I primarily see one voice in the world of hemophilia educational materials. It's one mother who has managed to corner the market. And what frustrates me is that she doesn't experience hemophilia very much like those of us who deal with severe hemophilia. In my opinion her family's experience is not what most of us deal with. And there's little to nothing from the older members of the hemophilia community.
I think new parents need to have all the facts; especially concerning the HIV/Hepatitis crisis that hit the hemophilia community. And that's very much glossed over these days. I don't think that our educational materials stress the importance of blood safety nearly enough. I think that this information should be part of hemophilia 101. While the drug companies and NHF may not want to rehash their mis-steps and failures, it's vital that they own up to it all so that consumers can make sure it never happens again.
In terms of educational materials, I've seen many ideas proposed and brought "to the table" only to have those ideas twisted and molded into someone else's vision of what families need to know. I've seen materials edited and "dumbed down" because someone thought we consumers wouldn't understand all those big words. I guess I resent that one voice or person seems to be regarded as the model of parental advocacy and the last word in what is or is not appropriate to teach families. I don't like the notion of others deciding how much or what type of information is available to consumers.
I think we should raise the bar and ask people to expand their knowledge and understanding rather than assume they can't handle it. I don't think that any one person or organization should have a monopoly on educational materials. Let's open the door to some new ideas and information sources.
My boys want to hear from the generations ahead of them. They want to know what's in store from the guys who have been there and actually experienced these things. They don't want to hear a Mom's perspective on the teen years or college years. They want information by and for that age group. And I want it to. How we live and how I deal with their growing up will be different from another Mom's experience. I want to hear a young guy talking about how he chooses to tell his friends and potential girlfriends/boysfriends about living with hemophilia.
But maybe that's just me.
Wednesday, June 27, 2007
Numero Uno
I thought about blogging for a while. But didn't really think I had anything to say. Or anything to say that anyone would read. I've always journaled paper and pen style. Now that I type way faster than I can write blogging seems like a way to keep journaling, just quick-like.
We'll see.
What's a Girl-Bleeder? Bleeder is a term used to describe folks who are "free-bleeders", hemos, hemophiliacs...etc. Usually one would call me a carrier and a symptomatic carrier at that. Whatever. I didn't know I "WAS" any of those things until #1 son was born and subsequently diagnosed with severe hemophilia.
Flash to the Talking Heads..."How did I get here?".
Yeah, seems I'm the mutant. I carry the gene that causes our type of hemophilia on one of my lovely X chromosomes and then passed that beauty on to my kids.
Oh well. Finally an explanation for my god-awful heavy periods, bruising, pink toothbrush, etc.
Anyway. That's why I'm a girl bleeder.
We'll see.
What's a Girl-Bleeder? Bleeder is a term used to describe folks who are "free-bleeders", hemos, hemophiliacs...etc. Usually one would call me a carrier and a symptomatic carrier at that. Whatever. I didn't know I "WAS" any of those things until #1 son was born and subsequently diagnosed with severe hemophilia.
Flash to the Talking Heads..."How did I get here?".
Yeah, seems I'm the mutant. I carry the gene that causes our type of hemophilia on one of my lovely X chromosomes and then passed that beauty on to my kids.
Oh well. Finally an explanation for my god-awful heavy periods, bruising, pink toothbrush, etc.
Anyway. That's why I'm a girl bleeder.
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