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?