Thursday, May 10, 2012

The continuing prejudice against kids with "invisible" diseases

My son just left for school.  It's Thursday, and it has been a good week:  this is the second day he's been able to attend school this week.  He went Monday, although I took him in at 10:00am so he could sleep instead of attend study halls.

My son has Chronic Fatigure Immune Deficiency Syndrome.  He's 16, and he's had it since he was about 9.  Symptoms include a moderate to severe case of Pulmonary Orthostatic Tachycardia Syndrome (POTS), severe fatigue, "brain fog," and difficulties with short-term memory imprinting.  He needs to sleep a minimum of fourteen hours per day.  A minimum.

He takes six to seven medications every morning, receives IM shots of specially formulated Vitamin B, and has to have IV therapy once a week/

Most of the time, when he's capable of attending school, he looks like a completely normal, not always serious, sixteen-year-old, because if he was showing symptoms that day he'd be at home.

So it is an invisible disease.

This means that people--including teachers, friends, extended family members, and even doctors (!)--consider themselves free to opine that my son is lazy, or poorly motivated, or faking it, or that we have Munchausens by Proxy.  I've been told by a relative to "just give him a Coke and make him go to school; all teenagers want to sleep in."  I've been told by teachers that he needs to "want" to be able to do his homework at night.  I've been told by medical "professionals" that he "just needs to work through it."

Undoubtedly, if this post is up long enough, I'll be told by some idiot that CFIDS isn't a real disease.

My oldest daughter was severely abused (both physically and sexually) as a child before we adopted her as a young teenager.  Aside from Learning Disabilities, she still (as an adult aged 30) deals with a complex of symptoms from Post Traumatic Stress Disorder that she does not understand.  Medication helps even out the rages and the depression, but the scars don't go away that easily.

Undoubtedly (it has always happened before), some moron will eventually visit this site to tell me that PTSD is another "made up" disease.  Tell it to tens of thousands of Afghanistan and Iraqi veterans, buddy.

I have a friend whose daughter is severely bipolar, to the point where the medications that help level out her mood swings have to be given in such high doses that they result in significant potential physical side-effects.  Her Dad had to take the school district to state mediation to get the "professionals" there to admit that (a) she actually was sick; and (b) that her illness could be crippling enough to cause her to miss significant school time.

Undoubtedly, some jerk will sooner or later point out that what stands between his kid and a good public education is all the money spent "coddling" children like this.

What her Dad and I have in common (and our spouses as well) is that we are highly educated, articulate, pushy, upper-middle-class parents who have the ability to do our research, the access to some of the best specialists in the country, and the resources to support our children as they try to deal with their invisible diseases.  We can attend IEP meetings, we can badger teachers, we can fight back.

Most kids who have invisible diseases don't have these advantages:  they are written off as lazy, neglected, or the product of poor parenting skills.

Even when they are classified as Special Needs ("Other health impaired") the prejudice against them in both the US and Delaware public education system is so enormous as to be virtually unbelievable.

You do realize, don't you, that the Federal government has NEVER fully funded Special Education programs up to the amount required by law.  Not even close.

Nor has the Delaware Department of Education exactly been a leader in this regard.  I could tell you stories, and I could name names.

So as the General Assembly rubber-stamps yet another educrat as Secretary of Education, here's my question, the question that goes beyond ed reform and Voices $ Delaware Education.

When are you going to do, Mr. Murphy, for my son and those like him--the ones with the invisible handicaps?

10 comments:

Hube said...

You do realize, don't you, that the Federal government has NEVER fully funded Special Education programs up to the amount required by law. Not even close.

Interesting. A libertarian complaining about the feds not funding something adequately.

Steve Newton said...

Funny, Hube, I see it as noting that once again the Federal Government made a specific promise and then placed unfunded mandates on the states and local schools without funding them.

I don't think that as a Libertarian I somehow forfeit my right to note the self-centered idiocy of new funding for data coaches when you haven't--in 40 years--appropriated the money you said you would for sick kids.

I'd frankly rather that the Feds just gave it up and admitted they aren't going to pay for the services.

Oh, and my family has paid tens of thousands of dollars for my son's medical care and educational support over the past seven years, and have not asked the school districts for anything other than the instructional accommodations and modifications he needed--none of which actually cost them anything but time.

pandora said...

In the scientific community these are called "orphan" diseases, because they don't get the attention, PR, fundraising, etc.

So very unfair.

People (idiots, morons, jerks) who make such pronouncements have no idea what they are talking about. Instead, they use these situations to question the parents' parenting and the child's "work ethic" - usually to make themselves feel superior. Vile and uninformed.

Living with children suffering from these diseases is heartbreaking... and isolating. Hang in there.

Hube said...

Steve: I am not criticizing your take on the issue other than that it appears incompatible with libertarian philosophy. I agree with you that the feds are a waste of time, esp. if they're not going to do (fund) what they say. Best they just admit it, and fold up their tent, as you say.

You're right about the accommodations needed at teh school/classroom level; however, I'd also point out that, well-to-do involved parents like youself (and I'm not saying you, personally, by any means) use the accommodations law (504) to "game the system" to give their kids an advantage when they really do not need such accommodations.

john said...

Steve,

Thanks for this post. As a father of a special needs child myself, my heart is heavy for these kids. But you know a special love in your life because of it, and it is the most amazing, valuable love I have ever experienced. I trust it is the same for you.

On a lighter note: Voices $ Delaware Education. Can I get an Amen! Love the "Shift-4"!

Steve Newton said...

Hube

Here's the problem--maybe 5% of well-connected parents "game" the system.

And then administrators and teachers like you constantly use that 1 out of 20 as reasons why realistic accommoddations can't be made for kids who need them.

To be honest--you're close to urban legend territory here.

Hube said...

And then administrators and teachers like you constantly use that 1 out of 20 as reasons why realistic accommoddations can't be made for kids who need them.

Like me? Nice ridiculous ad hominem. I wonder, is that like you inferring racism, etc. on the part of those who support NCS ... yet it's perfectly OK for you to make excuses for the worse #s of CSW? Like that? Spare me, already. Your inconsistency is laughable.

Here's the problem--maybe 5% of well-connected parents "game" the system.

Maybe you provide a cite for that.

Hube said...

Furthermore, Steve, when you say admins and teachers "make excuses," are you familiar with the (all too frequent) reality in schools today? With mandated "inclusion" for example, and minimal funding for aides, how likely is a classroom teacher going to adequately -- IOW, the way it should be -- accommodate a student who needs special attention with 1) no additional assistance in a classroom, and 2) with over 30 other kids in the class?

You see, you started out by blaming the feds and funding, but then you said that for admins and especially teachers all it requires is extra time. But funding pays for classroom aides, and 30 other students in a class kinda inhibits the actual time a 504 student may actually need. So ... whose fault is that situation ultimately? The admins'? The teacher's? The state's? The feds'?

Hube said...

Further, are you aware that gifted students are entitled to special accommodations for their gifts? I wonder how many such students are getting all that they are entitled to. Or, if their parents actually know about such.

delacrat said...

Hube,

"...well-to-do involved parents like youself (and I'm not saying you, personally, by any means) use the accommodations law (504) to "game the system"

As a parent of a special needs child, I am not aware of any instances where a parent advocating for a disabled kid's needs could be so cynically described as "gaming the system".

Since you asked Steve to "provide a cite" for his claim, feel free to provide one for yours.