Is Rape Insurance Worth It?

(or, what I do when I’m bored on a Saturday morning)

Insurance, n.: coverage by contract whereby one party undertakes to indemnify or guarantee another against loss by a specified contingency or peril.

There has been a lot of talk lately about what has been dubbed the Rape Insurance law in Michigan, which recently went into effect. The law came about because sincere pro-lifers did not want to be party to abortions through paying their money into an insurance pool that covered them.  The idea was to separate the insurance pools for pro-life and pro-choice supporters.  Those who believe in supporting choice for others, or who believe they would/could make that choice for themselves, could elect to purchase the abortion coverage rider, and those who believe it is wrong in any circumstances would be comfortable that their money was not paying for any abortions. This is not a bill having anything to do with insuring against rape. It discusses insuring against the need for an abortion.

There are some gray areas.  Situations where the mother’s life is in danger are in one possible gray area where even some on the pro-life side believe a woman should be able to have a life-saving abortion.  Situations involving miscarriage are another: A procedure known as a D&C is commonly used when a woman is diagnosed as miscarrying, and some have classified this as a kind of abortion and used that classification to deny service or payment.  As far as I can tell, the “rape insurance” bill covers the first gray area with an specific exemption when the mother’s life is in danger. I have not been able to find any evidence that it covers the second gray area mentioned above, but the only reports I’ve seen are from opponents of the law claiming that it “could” prevent payment for medically-necessary D&C procedures; without evidence, I have to discount that claim.  So the only thing left to discuss at the moment is what everybody generally considers an abortion: ending an established pregnancy that does not appear likely to end on its own and does not threaten the mother’s life.

We’ve defined the bill; now let’s define insurance.  What we call “insurance” when it comes to health care today really isn’t.  The “insurance” we now all are required to carry is more of a health maintenance plan, a payment plan, a way to distribute all health care costs among the population.  Insurance, on the other hand, is like a bet between the insured and the insurance company: the insured is betting that they will require expensive medical care, and the insurance company is betting that they will not require this expensive medical care.  If the insured is right, they get back more in payments for health care than they paid in premiums.  If the insurance company is right, they never have to pay more for that health care than they received in premiums.  Both parties are in it to make money, essentially.

Remember that nobody who has not bought into the insurance pool is covered for any procedure whatsoever.  You can’t say that your premiums are going to benefit another person who can’t pay because that person has to pay, or they aren’t in the pool.  So I just had to wonder: would it be worth it to me purchase the rape insurance rider, so that my health insurance would pay if I needed or desired any procedure resembling an abortion?  (Assuming that I felt this was a path I could ever take, of course.)

The only cost I’ve seen so far suggests that the rider would be 32 cents per month, or a total of $153.60 for a 40-year reproductive life from 12-52 years of age.  (Since there would never be a need for an abortion before menarche or after menopause, obviously purchasing the rider during these periods of life would be a losing proposition for a woman.)  This would provide insurance coverage for an abortion equivalent to other insurance coverage.  With my own health insurance plan, this means that I would pay 100% for an abortion before meeting my deductible, 10% if I have met my deductible but not my out-of-pocket cap, and 0% if I have met my out-of-pocket cap for the year.  We usually meet the deductible by April, and about half the time we hit the cap before the end of the year.  Depending on when my need for abortion would occur, 25% of the time I would pay 100%, 63% of the time I would pay 10%, and 12% of the time I would pay nothing at all.

The average cash cost of an abortion in Michigan, pharmaceutical or surgical, appears to range from $300-$700, so I’ll take the median of $500 for my calculations.  With my insurance coverage, I might have to pay all of that $500, or only $50, or nothing at all.  Assuming my abortion need would be equally likely to occur at any time of the year, my statistically-probable cost for the abortion is $156.50.

Statistics say that I have a 25% chance of being raped at some point in my life.  Only half of my life includes reproductive years, though; any rapes occurring outside that 40-year span could not result in a pregnancy.  In addition, there are only about 5 possible fertile days in each menstrual cycle, and each sex act during a fertile period has only about a 25% chance of resulting in a pregnancy.  Assuming that I never use birth control, and discounting any time that I spend actually pregnant, postpartum, or in lactation-induced amenorrhea (which for me this life was actually a total of 6 years), that leaves me with 2400 fertile days over an 80-year (29,200-day) lifespan, or 8.2% of my life.  I have about a 0.5% chance of suffering a rape that results in a pregnancy.

I’m going to discount right here the possibility of having a pregnancy where the baby was sure to die after birth.  I have disabled children already as well as children who had a pretty good chance of dying at birth, and I can’t personally imagine not giving any child every possible opportunity to beat the odds.  That’s not to mention that I just don’t participate in most of the testing that would result in that kind of in-utero diagnosis.  So I’m going to save myself the math on this one.

So, I have 0.5% chance of needing a procedure that is likely to cost me $500 without insurance and $156.50 with the insurance.  The insurance will cost me $153.60 over my reproductive lifetime, which means that if I need this procedure once, I will likely pay $310.10 for it with the insurance coverage, possibly as much as $653.60 if I need it at the wrong time.  If I choose not to purchase the additional coverage, and I instead place that 32 cents into a savings account every month like the one I currently have, I would have $156.71 at the end of 40 years (boy, do interest rates suck these days!).

I have to say, that’s a tough call.  I have very, very, very little chance of personally requiring an abortion, and I can’t see a circumstance where the cost of the abortion would be prohibitive, especially knowing there are places that operate on a sliding scale or payment plans for times in my life when cash was tight.  The odds are in my favor that I will come out ahead by not purchasing the rider, and the insurance company has a strong incentive to offer this rider because they are likely to come out ahead on anybody who purchases it, especially considering that anti-discrimination laws and people who just don’t pay attention mean that the rider will probably be purchased by more people incapable of getting pregnant that by those who are.  Recent reports state that most insurance companies were not planning on providing this rider as of the time the law went into effect; however, I suspect that most were simply waiting to see if the law was going to be killed before going into effect, so they could save themselves the paperwork and programming to implement the special rider.  I can’t see most companies forgoing this opportunity to make more money, so I expect most companies will be adding this rider to their available policies very soon.

The Kender Report

Kender has had a busy week. On Monday, he went under anesthesia for an eye exam, which showed nothing new. Dr. Trese said we could start backing off one of the three eye drops Kender takes every day, which is happy news.

The bigger event was Wednesday, when Kender went under anesthesia again, this time for dental work.  At five years old, Kender has never had a successful dental exam. Until just last year he wouldn’t even let us clean his teeth regularly. Since we started using a spin-brush and singing a song, he lets us brush his teeth so well that the dentist could find no fault with our cleaning job.

The damage of years past was already done, though. Dr. Meyers gave Kender eight filling, four caps, and one baby root canal. The root canal in particular means he’s probably been in pain from his teeth for who knows how long. How exciting that we found and fixed yet another source of pain for him, and sad that he was in pain at all.

Two surgeries in one week were a little rough on Kender. He was droopy for a couple of days, much slower to wake up than usual, and one evening he even ran a brief fever. Today he seems to be back to his usual self.

I am so excited about the potential developmental leaps Kender may make now that his teeth are fixed, much like the incredible progress he made in 2012 after his eye pain was relieved. I want to say I see changes already, longer speeches and more paraphrasing replacing straight mimicry. In reality, it’s probably too soon to see any definite improvement, and I need to sit back and relax. A hard thing to do sometimes!

Blind Binarism

This post has been sitting in the back of my mind for a while.  It started with a post about disability binarism, the idea that everyone is either completely disabled or completed abled.  On its face, most reasonable people would agree that this idea is as silly as the idea of people being only black, white, Hispanic, Asian, etc., when it comes to race, when obviously you have a ton of people who are some mix of two or more races.  However, that question that keeps popping up on surveys and forms and the census and seemingly everywhere these days asking everybody to quantify their race with only one box shows that black-and-white attitude toward race obviously still exists.  The same is true when it comes to disability, and especially to blindness.

What do you think of when I say somebody is blind?  For most people, the image that comes to mind is somebody who is completely blind and can’t see a thing, even light and dark.  What if I told you that the vast majority of blind people I have known actually have some vision?  There two legal definitions: “Visually Impaired” is a best-corrected acuity of 20/70 or worse in the better eye, and “Legally Blind” is a best-corrected acuity of 20/200 or worse in the better eye.  There is a huge spectrum between legally blind and total vision loss.

Someone with partial vision may be able to read normal print held in their hand, but unable to see the blackboard in a classroom.  They may be able to walk around, avoid obstacles, and recognize faces, but not be able to read the menu at McDonald’s.  They may able to see during the day but not at night, or vice versa.  They may not have stereo or color vision.  They may see the world as if through a permanent fog, or through a broken glass, or in a funhouse mirror.  They may be able to see the sidewalk but not the curb, the countertop but not the steps, the table but not the chairs.

Blind binarism and ableism come into play when a person seems on the surface to be able to negotiate the world as well as a sighted person.  Binarism says that this person is, therefore, “not blind” and does not need the tools and skills of a “real” blind person.  This is a big deal because this attitude exists not only among the general non-blind public but also among some of those very people whose job it is to educate and train our children in the skills of blindness so that they can become independent, functional, and productive adults.  Every month, sometimes every week, our blind homeschooling community welcomes a new refugee from the government school system, a family that has been told their child doesn’t need Braille even though they can’t read regular print, that their child doesn’t need to learn to use a cane even though they trip over every curb and step, that their child doesn’t need to know the skills of blindness in the kitchen or around the house even though they might injure themselves or be unable to live independently if they don’t.

This attitude also affects how blind people choose to function in the world.  Should I carry my cane into this new place so that I can be sure of not falling over something, or should I wing it so that I won’t be identified as blind?  Or, conversely, should I carry my cane into this place that I know well enough not to need it just to spare my family from being berated by somebody who thinks we don’t need our handicapped plates?  Do I use Braille on a daily basis for those things for which it makes sense, or do I struggle to use declining vision so as not to appear disabled?  Do I fight for the accommodations I need in the workplace to function on a level with my peers, or do I settle for lower wages and substandard employment and a government check?  There is a lot of pressure on “high partials” to pass for sighted, to blend in with the sighted world and not cause trouble.

All the visually impaired people in my family fall along this spectrum.  I have one daughter who is not legally impaired but has low vision in one eye, another daughter who is not quite legally impaired but can’t see well enough to drive (that cutoff is usually around 20/50), one son who is impaired but mostly functions as sighted since he is not in school, and another son and husband who are partially sighted in one eye and have no functional vision in the other eye.  None of them look blind when people first meet them, unless they notice my husband’s or my son’s deformed eyes.  All of them are impaired to some extent, though, and benefit already from using various skills of blindness at various times. All of my impaired children are being taught the skills of blindness, as their condition can be suddenly degenerative, and they could need these skills later in life.

It’s not all or nothing.  There’s a lot of gray.


An article over at the New York Post on end-of-life care caught my attention this morning.  You really have to read through the whole thing to get the full impact of it.  The issues raised here resonate with me, in both my experiences and my beliefs.

There was a time when I would have told anybody to do anything necessary to keep me alive.  I think we all do at same point, as we go through that phase of feeling immortal.  I even left that instruction behind, along with others, the last time I went in for surgery.  I would not say that any longer.

Back in 2007, my grandmother died.  Her last years were spent in a flurry of progressively invasive medical care as one body system after another failed.  I thought for several years that she would die any time, and I would expect to get that phone call saying, “Your grandmother is dead. She died in her sleep.”  Instead, I would hear that grandma had a heart attack, spent time in the hospital, got more drugs, and went home.  Now grandma is in congestive heart failure, she had another hospital stay and got some different drugs.  Now her kidneys are failing, so she needs dialysis and more drugs.  She had strokes, mini-strokes, illnesses that turned severe.  It was one thing after another, and I’m glad that I was out of state at the time and couldn’t see her regularly.  The thought of my feisty, crafty, Betty Boop-loving, gumbo-cooking grandmother reduced to that state of living past her body’s time limit makes me very sad.

At one point, Grandma got so sick with what I think was a respiratory infection that she ended up in the ICU on a ventilator, and the doctors weren’t sure she would make it.  She did make it that time, but as soon as they extubated her, she said, “Don’t you ever do that to me again!”  (I wasn’t there, only hearing about it second-hand, but I can just see her face and hear her tone of voice when she did it…Grandma was PISSED!) I talked with my mother about letting her go, about letting her die peacefully instead of trying to fight it so hard.  It wasn’t our decision though, and I have to accept that my grandfather was not about to let go of one second with his beloved that could be gained by intervention.

I have other stories I could tell.  I could speak of the things I saw done to my mother when she was in Critical Care during her chemotherapy treatments, the indignities she suffered, the way every doctor seemed hell-bent on treating her as a statistic in their own subspecialty instead of as a whole woman with integrated body systems, the way it was so hard for me to get the information I needed to make decisions for her when she was incapable.  I could speak of the stories told by my friend Angel back in Texas about his experience with cancer in his teens, what it felt like to be resuscitated by paddles after cardiac arrest, how he never again wanted to be saved or rescued or placed in intensive care.

Ultimately, though, the stories will never be enough.  All of this comes down to our attitude toward death as a culture.  We have removed ourselves from death, banished Her from our perceptions thoroughly.  We mourn and cry at the deaths of those who have lived full lives and died at their due time, as if death does not come for us all in the end.  Death is never natural anymore; it always has a cause, and that cause is always preventable.  No death is ever acceptable.  We live in a padded-room society swaddled in rules, regulations, safety precautions, and securities, determined that life-everlasting must be possible if only we do all the right things.  Then, even after we die, we embalm, we entomb, we fill the bodies with chemicals and then enclose them in expensive, waterproof concrete grave liners, maybe even steel-lined graves, in the expectation that at least the body will never rot even after the spirit has left.

I may not be the gothiest goth you ever met, but I have regarded myself as goth for a long time for one simple reason: I accept and embrace death and the darker things in life.  I wish that society could come just a little over to the dark side with me, enough to bring balance back into our culture.  I’ll grant you your padded-room life if you want it, as long as you don’t impose it on me and my family.  In return, I’d like to have some respect for the end of life, the expected end we all face.  I still want to rage against Chris’ death and expect to spend a long, long time still coming to terms with it.  But I want grandparents to die at home, in their beds, surrounded by family, not in hospital filled with tubes surrounded by medical professionals and beeps and lights.  I want it to be easier for a terminal patient to say, “Enough!” and stop treatment, going home to die or even choosing to hasten death on their own terms.

And when old people die, I want to celebrate their lives and share memories with those still alive, not be expected to cry and mourn over something that is a perfectly natural part of life.

My mother told me that she wants me to scatter her ashes from the top of the Mt. Crested Butte ski lift when she dies.  I like that idea.  Myself, I think I want a green burial somewhere quiet and peaceful, or maybe an illicit burial in my kids’ backyard with a tree planted on top (then I can be a vicious libertarian rule-breaker even in my death!).  I plan to celebrate all the wonderful parts of my mother’s life when she leaves us for good, and I hope somebody throws one helluva wild party when I go.  No crying allowed.

Well-Meaning Advice

There is little more frustrating in life than to be given advice that has already been tried, maybe even failed.  It happens all the time.  New mothers get it in truckloads, advice for breastfeeding, sleeping, feeding, comforting, walking, toys, that advice never ends.

It also comes in difficult situations.  Chronic pain.  Disability.

Or what happened last week.

Those giving the advice mean well, I know.  You can’t really get upset at them for trying, because all they want to do is help.  They’re thinking that maybe they’ve got the one little piece that you just haven’t heard yet, that maybe they’ve got something that can finally help.  I know.  I’ve been on the giving end of this exchange many times, and it’s always because I just want to help, and sometimes I do know things others haven’t learned yet.

batslapTo be on the receiving end of this exchange, though, is to feel like screaming and throwing things in frustration.  Sometimes hearing that well-meaning advice feels like a knife wound, because you’ve done that, you tried that, and then the feeling comes that maybe you didn’t try hard enough, maybe you didn’t do it right, so it really is your fault anyway.  Sometimes you want to yell at the person in question, give them that Batman-Robin smack and say, “But I DID that already! It doesn’t work! Don’t you listen?!”

Those of us in chronic pain have generally tried absolutely everything we can get our hands on legally (and maybe illegally, too).  We’ll chase down the craziest rumors in the hopes of finding that one magic trick.  And yet we still have to listen to the litany of the same recommendations every time somebody new finds out about our pain, from Advil to stress management to “get more sleep.”  We hear it over and over until sometimes we’re afraid to tell anybody about our pain, we stop getting any help at all because we’re so frustrated at getting what seems to us like the same useless help all the time.

I have a five-year-old son who has never pooped in the potty.  Believe me when I say I have tried everything I can dig up or think of.  He’s blind and autistic, he just hasn’t made the connection, and I can’t figure out how to make the connection for him.  It’s the same as with pee, and with that what I had to do finally was force the issue and reward him for being on the potty, and he got it.  It’s not control, it’s not power, it’s not a game or a joke.  We’ve done the dolls, we’ve tried books and movies and tablet apps, none of which he interacts with.  We’ve talked, we’ve demonstrated, we’ve tried all of that.  More than anything, I would love to find that one person who has the magic secret that will fix this, but every time I reach out about it, I get the same advice.  So I don’t talk about it much.

Then there’s Chris.  The level of frustration here is overwhelming, because it’s not just pain, it’s not just cleaning excrement off the carpets or making baby food.  People frakking DIED, and those of us left behind feel like we failed somewhere.  Again, we get all kinds of advice, not for Chris obviously but to try out next time we find ourselves supporting someone like her (which I hope I never have to do again, but I will if I see it, I will).  The same frustration goes through my mind when I hear the things that we did recommended to us as something that might have stopped her death.  Did we not do it right?  What gaping hole did we leave in the shield wall we tried to build for her?  And if it wasn’t good enough for Chris, maybe it won’t be good enough next time, and I’ll have to watch it happen all over again because I didn’t do it right.

To those on the receiving end of this kind of advice, know that you are not alone, you are not the only one fighting this frustration.  You are under no obligation to those who give you advice, not in whether you take it or how you take it, but just remember that most people give advice out of a genuine desire to help.

To those giving this kind of advice:  Try to understand when we lash out in frustration, and know that it is not really you, we don’t want to push you away, we’re just expressing the turmoil we feel in not being able to find a solution of our own.  Give us a little space, and then please…come back and try again (maybe without more advice, though).  Be there for us.  We need your support even when we can’t use your advice, even when we go turtle and hunker down and try not to bother anybody with our pain.

Update: The referrals have been sorted!

I posted yesterday about the craziness surrounding my children’s doctor referrals mostly in order to tell about Kender’s “analysis” of the situation, but a lot of people seemed to get concerned and were invested in hearing the outcome.  I am very very happy to announce that, after many phone calls to many doctors’ offices, I actually got a personal phone call from my rheumatologist, and everything got sorted.  Her staff sent me to the wrong clinic!  Now we know which doctor to go to, and I know this doctor has Dr. Beals’ approval, and I think we’re finally back on the right track, even though it will probably be many more months before any of my kids can actually see a doctor.

Makes Me Crazy

Back in July when I first got my hypermobility diagnosis, I asked Dr. Beals if she would be willing to see and treat my children.  She said that she doesn’t normally see children, but that she would make an exception in our case in order to keep us all under one roof as we learn more about our variant of the disorder.  I called Dr. Joe‘s referral specialist, requested the five referrals to Dr. Beals for suspected hypermobility, and waited for the appointments.  Dr. Beals has a months-long wait list for new appointments, so I expected to be waiting a while.

Last month, Dr. Beals’s office staff called me and said that she had changed her mind.  She didn’t want to see my children herself, but she wanted to send us to University of Michigan’s pediatric rheumatology department.  I asked a lot of questions, because I was very disappointed to be splitting the family up and traveling across the state like that, but Dr. Beals’s staff reassured me that she had referred to this clinic before, and they would treat my family the same way Dr. Beals herself would.

The next three weeks were spent playing phone tag with Dr. Joe’s referral specialist, with voice mails and missed calls and her not even being in the office when I came in with my kids.  Finally last week we synced up and she got the referrals going to U of M.  This morning, I got a phone call to schedule appointments.

The phone call was from U of M genetics.

Baffled, I tried to find out how we’d gotten here.  Apparently a Dr. Fleck in pediatric rheumatology decided that we needed to go to genetics instead.  The guy I spoke with in genetics said that they don’t really do treatment, so we’d have to bounce back out of their office anyway, and when I mentioned that I had one child already in need of chronic pain management he said that would be yet another clinic.  Now we’re looking at taking five kids to three clinics halfway across the state, and none of the clinics are going to see everybody on the same day like Dr. Trese does.

Brian called while I was on the phone, and when I called him back to explain all this, Kender was eating his oatmeal and singing/humming Nickelback’s Burn It To The Ground.  Right when I finished the explanation, Kender suddenly busts out really loudly with, “That shit makes me bat-shit crazy!”

Yes, Kender. Yes it does.

What I really need right now is to get Dr. Beals, Dr. Kozlowski, and this Dr. Fleck to get on a single conference call and hash out with me what everybody is thinking and what needs to happen.  We used to get this in the NICU.  We got enrolled in a study when the triplets were born about coordination of care, and as part of that study, once a week we got to sit in a conference room with all of the various doctors and specialists treating the triplets.  The doctors explained what they were doing and how the triplets were handling life, we got to ask questions, and everybody left undoubtedly on the same page.

I think we could use a little of that kind of coordination today.

Socially Acceptable Venting

I’ve been having a pretty tough day today with Kender. I’m taking advantage of the few brief moments here and there when he is silently pouting to type this out.  I need to get this out, even (or maybe especially!) on a bad day like today, because sometimes I feel like I have no voice.

We have made and still make a lot of alternative choices in our lifestyle and our parenting.  We chose to have children with a disabled parent.  I used medications to reset my hormones and restore my fertility instead of continuing to use fertility drugs.  We chose out-of-hospital births. We chose breastfeeding and cosleeping, cloth diapers and rags.  We chose to use convertible carseats  from the beginning instead of carriers, and slings instead of carriers and strollers much of the time.  We chose natural medicine as much as possible, with personalized vaccination schedules and avoidance of antibiotics.  We chose to homeschool, even when we found out our children had disabilities.

Every single one of those choices is outside of the mainstream, and so whenever we are having trouble with pretty much anything, those are the first things that people suggest we change.

It doesn’t seem to matter if the problem would even be fixed by the solution suggested.  To people who do not share our choices, our choices are the problem.

It reminds me of the problems that fat people face when going to the doctor.  No matter what their health complaint is, they are told the answer is losing weight.  I’ve been told this myself.  I’ve been told that I should lose weight in order to fix a medical problem that causes weight gain…now there’s an infinite loop for you!  Other people have been told to lose weight to fix anything from strep throat to broken bones.

If Kender were in the government school system, it would be completely acceptable for me to complain about the IEP process, about the school refusing to teach him Braille or to use a cane, about how many medications he needs in order to be nice and quiet and compliant, about how getting the schools to actually provide him with an education is a full-time job.  When we homeschool, though, we’re not allowed to complain about how expensive Braille materials are, or how difficult it is to contain him, or about being tired, or anything else.  No matter what my difficulty is, to some people the answer is that he should be in school.  As if somehow that would make all the problems go away, rather than magnifying them or replacing them with an entirely different set of unsolveable problems.

When our lifestyle choices are questioned, there is no consideration for our individual concerns.  There is no consideration for where we live, our past experiences with the establishment, our goals in life, our children’s unique needs.  Everything comes down to, “You are different, and you do not deserve any sympathy or help until you conform and become like everybody else.”  Every problem is reduced to some choice that we’ve made that is obviously the source of all our problems.

Fat and sick? You must become the socially-acceptable Not Fat before you can be treated for your health problem.

Libertarian and lost your job? You are not worthy of charity if you do not support government programs.

Homeschooling a disabled child? The only possible solution is government school.

Trying to find out what makes your child tick instead of medicating him? Sorry, does not compute.

Dealing with a difficult situation and have no support system? You need to change your religion so you can go to church and get help.

Do people who respond this way have any idea of how demoralizing it is to be told these things? How dehumanizing and impersonal it feels to be told that you, your personality, your preferences, your life, your SELF are the source of all your problems?

It’s no wonder that some of us draw into ourselves, that we withdraw from online message boards and real life support groups.  When every time we reach out, we are slapped in the face, eventually we are going to stop reaching.

IEP Torture

We had reasons for homeschooling from the beginning, reasons that had nothing to do with disabilities, especially since we had no reason to expect any disabled children. (Remember how the doctors told us Brian’s blindness was not genetic?) We had reasons like my experience being the smart one, the geek, the outcast, the loner, the one who was picked on.  We had reasons like Brian’s experiences with exclusion and bullying and how he resolved them (with violence, not recommended).

What I hear from other parents of autistic and blind children and their dealings with the government school system just makes me more determined to keep my children home, no matter the cost.

I have had a touch of dealing with the government schools and the IEP process myself.  When we first started suspecting that Caitlin was on the spectrum, we approached the local school district for an evaluation, wondering if some kind of therapy would be beneficial to her and help her bridge that social-interaction gap.  We were told that she was on grade level for all her academic accomplishments, and therefore she didn’t, and never would, qualify for any services no matter what her disabilities were.  Later, when she was in third grade, we put the triplets and Liam into school for about six months to see if it made my life any easier.  At that point Caitlin had her official Asperger’s diagnosis, and again I approached the school requesting services to help her with her social and interpersonal skills, to help her integrate and belong.  I was told she didn’t need any help, but that they would keep an eye on her and let me know if she did.

As much as ten years later, I am still finding out from Caitlin about the things that happened to her that I was never told about, despite my explicit requests for an IEP and services.  The times she was actually pulled out by the special ed teacher along with the deaf and developmentally-delayed children.  The times she was excluded from recess, the bullying she put up with.  None of this was ever communicated to me by the school or her teachers, who apparently thought it was okay to change their stance and suddenly provide some kind of services without consulting me first.  I may never know what all happened to her, what all they did to or for her, because she really was unable to tell me about it at the time.

The next time I dealt with IEPs and government school services was when I found out I had blind children, especially with Kender.  I found out that all the teachers for the visually impaired (TVIs) and orientation and mobility (O&M) teachers had non-compete clauses in their contracts forbidding them to do private work.  Beyond that, they were so overloaded and overworked that most of them couldn’t have taken on private students even if they had wanted to, and the schools were laying off and buying out more teachers every year.  When we sat down to do IEPs for Jarod and Kender every six months, the process was excruciating, requiring all sorts of detailed evaluations. Kender had to be marked off on developmental skills checklists that were completely inappropriate for a blind child (recognizes faces? knows his colors? follows along with picture books?).  As Kender got older and it became obvious (should have been from the beginning) that we were going to insist on homeschooling him even though he was blind, the teachers stopped really trying to provide services and instead spent all their time trying to tell me all the reasons he should be in school.

I hear so many awful stories.  IEPs that are routinely broken by the schools. Teachers who belittle and abuse their students.  Children with autism and sensory processing disorders who are restrained with force. Visually impaired children who are denied access to Braille instruction because the TVI doesn’t even know it anymore. Visually impaired children who are denied access to O&M instruction and how to use a white cane because the school doesn’t want to deal with it. Autistic children who are passed from grade to grade with no real instruction, then given a “certificate of completion” instead of a high school diploma before being abandoned to spotty adult mental health services.

What makes me so sad and furious is all the parents who believe that their only option is to work within this system that seems so determined to thwart them and abandon their children.  Parents who have been convinced that only the government and its specially-trained certified instructors are capable of teaching their special-needs children, even though the evidence shows they are often neither fully trained nor willing.  So many parents believe that teaching their normal, healthy, on-target children is a job that can only be accomplished by professionals.  It’s even worse among special-needs parents.  So they believe they have no choice but to stick with this system that is broken, and because they are a captive audience, the system has no incentive to improve services.  It’s a vicious cycle, resulting in a downward spiral of worse services and worse education, turning out more and more children who are incapable of functioning as independent adults, and neither side is willing to break out.

My only thought when I hear parents telling these IEP horrors stories is Why? Why do you stay with this system? Why don’t you just pull out? Why would you sacrifice your children to this game the government schools want you to play?  I don’t understand staying in.  I’m out, and I will stay out.  I won’t play that game.

The Kender Report — Kender Does Zumba!

An amazing thing happened yesterday.  Kender participated in a class!

A friend of mine teaches lots of Zumba classes, and she offers several at the homeschool co-op in which we participate.  She encouraged me to sign Kender up for her youngest Zumba Kids class on co-op days, even if all he did was curl up and listen to the music like he’s done before.  Honestly, I am not going to spend $35 for Kender to listen to music.  I can provide that for free, and we do it a lot at home.  I said that we would try it out, though.

At first, it was exactly what I expected.  He didn’t want to go in the room. Then he didn’t want to leave my lap.  He wanted to be held, he wanted to curl up on the floor.  I kept encouraging him to get up and go out there.  I walked him over and tried to lead him through a limbo game, but that only got him shrieking.  I sat down and let him wander, assuming child’s pose in front of the speakers, checking out the tumbling pads in the corner, playing with the blinds.

Then the miracle happened.  Kender stood in the middle of the floor for a minute, and then slowly started imitating the teacher’s movements, stepping back and forth, spinning around, waving his arms a bit.  It only lasted for part of the song, but it had me and her both nearly in tears, it was so amazing to see.  Kender went back to curling up and listening for a while, but a couple songs later, after some other kids had come into the class, Kender opened back up and copied them for part of a song, crawling around on his hands and knees and spinning.

After the class, I continued to see more interaction and tolerance of others.  We went up to the community room, where the other kids had already gotten into the toy box we bring full of balls, puzzles, Perplexus, legos, and more.  He spent well over an hour hanging out at the toy box with the other kids, pretending some blocks were phones, singing songs, etc.  Normally he won’t spend more than a few minutes playing that close to the other kids, preferring to wander around the room and climb on the furniture, stealing food, playing with the window blinds and the doors.  Again, an amazing and really cool thing to see.

When we went to leave for the day, we had to walk past the room where the Zumba class had been.  I had my hands full with a box, Kender was right behind me, and the van was parked right outside the door, so I hurried out and tossed the box in the van, expecting Kender to keep mosying on down the hall.  Instead, in the 30 seconds or so I was gone, Kender found the Zumba classroom (which now had a non-homeschool dance class starting), gone inside, plopped himself down on a mat with the other little kids, and the teacher had called the office over the intercom to report the little blind child who had wandered in!  Yet another thing I would not have expected him to do, especially the part where he paid attention to the other kids and joined them on the mats.

The rest of the afternoon, we heard bits of Zumba songs in what Kender was singing.  Last night, when I asked Kender to go tell Daddy about his Zumba class, this is what happened:

Needless to say, I have no problem whatsoever spending the $35 to keep him in the class for the rest of this term.  I am excited to see what he does next!