Chronic Illness Form

I finally gave up on having the doctor fax the chronic illness form and just took two hours out of my day, hopped into my raggedy car, and drove it to the school. I couldn't wait any longer after I got the notice today that my son's unexcused absences had reached the five maximum. If I ever find that some of those were indeed excused, it's on. Because that sounds like way too many.

Boy, the angers that rolled off me. Yeah. I kept my mouth mostly shut, however. I did a point and stare routine.

The receptionist foisted me on the nurse immediately. The nurse asks me ridiculous questions that I refuse to answer. I show her the notice. She doesn't deal with that; the district sends those out. Will the form handle that? Well, the district will take it into 'consideration.'

Then she looks me in the eye...and tells me that it's up to me whether or not I take my child home. She wants my son to be kept in school as much as possible.

Haaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaa!

She just didn't know the danger she was in--no, she didn't. Then she blames the teacher for sending him to the nurse's office. I guess that's why she demands that he goes home all the time, too? Then I get a 'Does he have medications?' Yes, his inhaler! At the school. Use it! Why don't you have a brain?

She said other stuff, but I left.

Drastic Steps for His Well-being - Part the Second

When the school called me Tuesday, insisting that my son be sent home, I told them that he couldn't miss too many days. It wasn't right that the school send him home for so many days and then gave me a notice that he had missed a lot of days.

The girl I talked to told me to get his doctor to 1. fill out a form and send medications to school (which resulted in me sending him to school Thursday with a note telling them to use the medicines that he already has at school) 2. fill out a chronic illness form so that a certain number of absences will be automatically be excused.

So they send my son home with the illness form (and also a note explaining why they couldn't handle him at school--I insisted on it). I faxed it to the doctor. The doctor faxed it to the school. I call and confirm that with the doctor. I call the school.

"Did you receive a chronic illness form for --?"

"No, I did not."

"Oh, you didn't? I just called the doctor, and they said they just sent it?"

"Well, I'm sitting here looking right at the fax, and I don't see any form. Oh, you know what? I bet it's because the fax is broken."

Do you believe in God? Because I do. God has brought me through many a terrible situation in my life that I would have not otherwise have survived. Now back to your program currently in progress.

"When will it be fixed?"

"Probably by the end of the day. You know what you could do? Have your doctor scan it, and send me the scan in an email. Okay? Just do that."

"Okay?"
*she hangs up phone*

But I don't know her name or her email address. God's grace brings me through many a bad situation.

Drastic Steps for His Well-being - Part the First

Today I sent my son back to school...with a few changes. Around this time every year my son has asthma symptoms. The nurse calls me, insists that my son is so sick, and demands that I pick him up. They do this for about five or six days during pollen season. Meanwhile, my son tantrums because he's frustrated and suffering.

The thing is, he has asthma medication at school. Before school every year, I run around updating the form, getting new medicine at the pharmacy, and send it in to the school. At the end of the school term, I get back the inhaler. Unopened. Unused.

What in the world is going on here? If they just use the medication, he'd be fine. It works. He does well at home. In fact when I take him to the doctor because the nurse acts like I'm the worst parent on the planet, the doctor usually finds my son's breathing to be normal. Because I use his medication.

So today, I sent my son to school with a note: basically says that he has asthma and allergies and that he is to be kept inside during pollen season. Next are instructions on how to use the inhaler. Last is an indication for how often the nurse can give him the medicine.

You know, since they can't figure it out themselves. Yet every time that nurse calls me, she's giving me unasked for, illegal (that school is just waiting to be sued) medical advice on what meds might control his asthma. But she doesn't have the common sense enough to know to give him his inhaler when he's wheezing? To maybe tell the teacher not to have him outside exerting himself when the trees are full of pollen and it's windy? Oh, but she goes on and on about steroids.

The nerve.

Not Himself

In the struggle to give my son an opportunity that he wouldn't otherwise have, I have shut the door on his potential.

When he was small, he was a typical boy with autism. He screamed and had tantrums and didn't smile so much and didn't like contact. I could barely keep him in school. None of the teachers wanted him in their classes.

I decided that I had to teach my son how to hide his symptoms so that he would be better accepted and so that he could survive in this life. I taught him how to make and keep eye contact. I taught him how to sit still for longer and longer periods of time. I taught him to seek out hugs. I taught him how to suppress his tantrums most of the time.

I taught him how to not be himself.

Only now am I realizing how stupid I've been. At school, when my son is feeling bad and doesn't want to deal with school, do you know what he does? He acts like himself. He screams and throws tantrums.

The teachers throw up their hands and give up on him and send him home. They supposedly specialize in children with autism, but they can't handle my son on the very few days out of the school term when he acts out. "He's not acting like the student I know." Well, you never knew him. Then they simply throw him away; they reject who he really is.

I can no longer abide by this. Why am I teaching my son to act like someone else to make them comfortable when they don't appreciate that? They think I'm lucky to have my son. They're ignorant of all the hard work my son, family, and I have put into his behavior. They think that he's a happy little mistake. They're blind to the truth.

He's not my mistake; he's my blessing.

Migraines Update

Still fighting migraines, but now they are manageable. Thank God. They don't happen every day and when they do happen, they only last a couple minutes, twenty at the most.

I got an allergy test and now I know that I'm allergic to milk (Boo!). Still no word on gluten. Been on an elimination diet since January. I hope to be off by Easter. At that time I will start re-introducing foods to my diet to see about food intolerance. Right now, mangoes, broccoli, and paprika is on that particular list.

My life is much more livable than it has been, that's for sure. I'm doing Lent this year and since I don't have much to give up, I'm adding a whole bunch of things to start doing. Like blogging. ;)

I'll be praying three times a day. Writing letters to my family every day. Reading the same book of the Bible every day (Colossians). Writing every day. Blogging every day. And writing a poem every day.

When I put it all in one paragraph. This seems like a lot...

Digression: It's raining tonight like it's Mississippi. Lightning flashing--almost the whole works. No thunder though... Oops. There it is.

Chicken & Watermelon

My husband told me something extraordinarily funny: he won't eat watermelon in public. He thinks that  doing so would perpetuate a stereotype. He likes watermelon as well as any other fruit, but that particular one has too much negative meaning.

"Yeah, and then I'll bury my face in a wedge and spit out the seeds like a machine gun." He'd then demonstrate the seed spitting--side to side in an ignorant way. It was a messy eating of a person who doesn't know much. What would always make me laugh was how vehement he would look while doing it. "I's sho duz like me some waddermelons!" he'd say, pumping a fist to the side. Sometimes he'd add an irrelevant "Massah!" for effect.

There's sadness mixed in his portrayal. He can't be who he really is. If he reaches for watermelon, there's all of this judgment and contempt attached to it. It becomes a spectacle. Even if no one else around him would think that and he knew that, he'd know that image was in the collective mind. He wouldn't even eat any at a church friend's home because he said he can't in front of white people. His main problem was that it was still on the rind. It being cubed and in a bowl would have let him keep some dignity, I guess.

The simple act of showing like for a certain piece of food becomes a dilemma. I remember from my high school days an incident that occurred during our lunch. They had cooked too much fried chicken (they usually ran out of food) and since they didn't want to throw it out, they offered more portions to the students. Well, the principal came to the "black tables" first. I don't remember any of us accepting the offer, although some white kids did. We never mentioned what had happened among ourselves either. Why talk about the mundane?

Racism isn't the problem here. It helped to cement those stereotypes we can't quite run from, but that's not what I'm feeling now. It doesn't seem as if we can ever escape the past; we wear it on our backs like dowager humps.

There's all kinds of things that I don't dare do or say around those who aren't my closest friends (some of my closest friends are different ethnicities) because I don't want to be laughed at. I don't want to put an image in someone's head who doesn't know better that they will carry around with them and spread. It's beyond making a fool of me; I'm worried about making a fool of us. I think that's a little of what my husband faces when someone sets a plate of watermelon or fried chicken in front of him.

Just Stop

Please. Just stop.

I don't want to talk about "the election." Stop making this so miserable for me. I do not care who won or how he will ruin this country. I don't care.

You're telling me way too much about yourself. You're telling me what you really think of me, of my family. That isn't a good thing. It hurts my heart and frightens me.

We throw such hate at each other, scooped up from inside of us (don't worry; your supply won't be depleted). You fling it while telling me to get over it. It's just an opinion.

Your opinion stinks. I can't get it out of my clothes and my hair. I'm unallowed by tradition to state mine; this is what you get to dictate. I'd like to change those rules and you hate that. I don't need to know this. I'm trying to be your friend.

So please stop.

The Problem with Rap

"As long as it's not rap."

Then there's the awkwardness of people trying to look at me or my husband from the sides of their eyes. Trying to gauge our reactions without us noticing. But of course we notice. We see the false preoccupation with lint on shirts or pants or hair. We feel every scrape and creak of the chairs we sit in. All around us bodies make to go places, but are confined, going nowhere and everywhere at the same time.

We are black and so we must like rap. Are we offended? Not in the way one would assume. Rap is not my favorite genre of music, for one. Yet when people sneer at the thought of it, I become a target of that disdain, whether or not that was the intention (and sometimes that is the intention). At that point, I wonder what else this person is intolerant of. What else is presumed of me that they'd rather not exist?

Update 2: A Time to Fight

That psychologist has not called. I am not surprised nor angered by this. It's only what I expected of her and this school district. I'll find other avenues to get what I need for my son.

Whatever happened to professional courtesy? Even if you find the concept of morality outdated, everyone should be concerned about integrity. I hope she doesn't think I will accept her excuses when they come (they always do). Trust has been revoked.

However, I'm moving on.

Update: A Time to Fight

At my son's IEP meeting, I talked with his team about removing "intellectually disabled" off his IEP. I got the old run around about how he could lose services elsewhere (like from SSI-- which is none of their business). I asked if it would affect his services in this current school district. They told me no.

So I asked them to remove it. The psychologist said she would call-- a week ago. Looks like that was for nothing. I guess I'll get around to asking the teacher what's up with that psychologist.

Tired doesn't even begin to describe my state of mind.

A Time to Fight

In less than a week, my son's IEP meeting is scheduled. I dread it while, at the same time, anticipating it. I have things I need to say, and I've been trying to build up my courage to say them. I don't won't to be caught up in anger or frustration either. I want to speak calmly and truthfully about what I want and what my son needs.

I may fail.

California or Bust

Right now, we're leaning more towards "bust." How will a family with two small children move to an incredibly expensive city (live in Mississippi for a while and everywhere and everything will seem "incredibly expensive") with no money, with only a glimmer of a job, and with no place to stay (as of yet)? Magic, of course.

We save up money. However, circumstances happen. The car breaks down. Gas prices rise. One of us loses a job.