Debts
Seriously, anything that could did go wrong. Woke up just after midnight as my insomnia flared up, so the bad day got a nice early start.
First, we noticed Xan was getting a rather bad rash. This started the usual jumping through hoops and second-guessing it always does, as we try to figure out what's going on and how serious it could be, should we try to get him to the doctor and deal with all that. The rash looked like he had gotten a shotgun shell full of sand, little bumps all over his chest and back. Didn't seem to be itchy, wasn't leaking anything, wasn't bloody. Seemed to ebb and flow every time we checked, never giving us solid progress or retreat. No fever, no loss of appetite, no nothing else, just that rash. We kept him from school Tuesday and Wednesday to make sure it wasn't contagious, to keep an eye on him and see if one of those other problems flared up, and to be able to apply Cortazine off and on and keep an eye on him to make sure he didn't try to wipe it off or anything.
While this was starting up, a routine virus scan on our one working computer flashed up a Trojan warning. This isn't great news any day of the week, but take a wild guess what we had just done...online...the day before?
Our taxes. So if anyone had managed to plant something on our computer, they now had the mother load of information, from addresses to social security numbers. This is the kind of thing that could have made Mother Teresa and Buddha curse and throw stuff wildly.
The TV has decided to become a pessimist, making everything it shows darker and darker and darker. We caught the finale of The Walking Dead, and the last scene...we had NO IDEA what was supposed to be in the background. All we could see was the moon. (Not spoiling anything here, but it was a kinda important plot point from the comics.)
Tracy's Droid phone died. It had most of the information about the Walk for Autism on April 28th on it.
Fridge began leaking. Car started making odd noises. I had a recurrent problem start to flare up again and had to go to the doctor. Had TKD testing that night so I couldn't rest.
I commented to an online friend "Ever suspect you're the subject in some alien's experiment to see what the magic number of blood pressure is to make your eyeballs actually shoot out from your skull?"
We made it through. But now, I'm calling in the debts.
If you guys had a good Monday, you owe me. So here's what I want you to do:
First of all, try to come to the Walk for Autism on 4/28 at Oxford High Stadium. As always, e-mail me if you want more info, want to help, anything. BHRobin@aol.com
April is Autism Awareness month, so read up on autism, send me questions to answer in a post, and try to do something nice for people who have it.
We'll be bagging groceries on 4/21 at the Golden Springs Winn-Dixie to raise money for the Autism Society of Alabama - stop by, say hi, tell me you read the blog and donate.
Above all, appreciate the good time when they're there and be patient with someone else who may be having one of my Mondays on another day of the week.
And remember, that no matter how bad your day has been, lots of people out there would willingly trade you for it, and throw in their left kidney to boot. That can be hard to remember, as can the fact that this too shall pass, but it helps you make it through long, hard days.
Independence
The other one was my son's teacher, and what she asked me sent me into a light depression that ended up with me posting a Facebook update that had several friends sending me carefully worded e-mails checking on my mental status.
And it wasn't what you're probably thinking.
She asked me what I saw Xan doing as a job, and I froze. Locked up. I had no idea. My immediate thought was a traffic jam as I tried to think of a job that his nonverbalness wouldn't be a problem for. And I was stuck.
The teacher handled it beautifully, taking a beat and telling me that she felt he had a real aptitude for computers and programming. Which is totally true. But I didn't think of it and she did. She also politely reiterated that perhaps I was a little too protective of him and perhaps wasn't helping him.
With that tied into my not being able to think of a job for him...it was a bad feeling. I wallowed in it for some time. Still in it a little.
I've talked about how I know I can be a little too careful. I'm scared of him getting hurt, getting lost...too many things. I told the teacher there was no way I could do what I call 'all-or-nothing' stuff, like dropping him off and not making sure he went in the school. If he bolted and no one saw him...
But there is stuff I could do. She recommended letting him ride the bus, and she said that if I let him do that she really felt he would start talking about his day.
We haven't had a real conversation with Xan ever, a real give-and-take. We don't get to hear what he did during the day, he doesn't tell what he really wants, likes or dislikes. Don't know what he dreamed last night, who his favorite character on TV is. It's REALLY not good to wonder if I've actually made it less possible for him to talk to us.
And what if my being careful - to be nice to myself - is holding him back? Have I traded keeping him safe for keeping him dependent? Am I the perfect example of the most extreme helicopter parent ever?
Yeah. See why I posted that update? (which, by the way, a quote from one of the best bands ever, the Drive-By Truckers. Also, try Lucero - the owner of CD Cellar recommended them, and they are great.) (Hey, this post can't all be down, can it?)
I have a lot to think about.
Remember, the Walk for Autism is April 28th. We have some gift certificates to auction off, from Think Toys and CD Cellar. You can also sign up online as well now...E-mail me at BHRobin at aol.com for more info.
Change
Maybe it was a one time thing, maybe not. We shall see.
In other ways, he's changing. I can't kiss him anymore when I drop him off at school in the morning. Used to be able to give him a little kiss on the top of the head as I walked off, and then last month or so when I tried to do that he did some kinda fish-out-of-water twist that seemed to move his head around in an Exorcism-like maneuver while keeping his hands still protectively clutched on his food. From that time on, if I attempt to kiss him, he pushes me away in the universal "Jeez, Dad" sentiment.
THAT, I did expect. Surprised it didn't come sooner, honestly, given me being me.
In many other ways, he's still the same. Still likes certain songs, more of my aural bent than Tracy's. Still wont to stay up REALLY late and be a bit cranky when I wake him up in the morning. Still kinda behind on a lot of things, still a genius, still very nonverbal, still loves twirling.
But he's growing up and changing.
Maybe for parents of autistic kids, especially ones who are more obviously autistic than others, growing up can mean different things. With luck, patience and a lot of support, it can mean actual growth and accomplishments - getting them to do more things, better things, independent things. It can mean watching them change physically, getting bigger and stronger and faster, and while taking pride in it (did I subtly mention Xan's already up to my chest, and he's only 10?) also thinking in the back of your mind, that part that catalogs things in a more harsh light, that IF he gets a lot taller and stronger trips to the dentist and doctor may start involving a tranquilizer. And that you really don't want to be caught in his head butts anymore - that small bruise could inflate into a concussion. Many other things, some common across all our differences, many unique to each family and even each child in that family.
Everything changes, nothing stays the same...except for that always-there worry.
DON'T FORGET: Walk for Autism is April 28th at Oxford High Stadium. You can now go walkforautismal.com to register up yourself or a group, and as always, you can e-mail me at BHRobin at aol.com for more information.
Life
You know, life.
In some ways, in obvious ways, I may be more busy than many parents. Having an autistic child means you get breaks that last, maybe, eight hours or so, when they're sleeping. Maybe. Even in the middle of all the things I listed above, I still have to keep an ear and eye out for Xander, for our protection and his.
For example - one night last month the toilet overflowed when he was using it. I happened to notice several flushes in a row, we raced in, and found the bathroom floor was doing double duty as a puddle. We were able to clean that up with a minimum of damage, but how did it happen? Dunno. Perhaps it was just one of those things. Maybe Xan jammed it up with too many tissues. We don't know. We could assume one or the other, natural or accidental or intentional, and act accordingly: no punishment for naturally one of those things, a discussion about what to do if something happens for accidental, or punishment if he did it intentionally. We settled for keeping a closer eye on him to make sure he didn't do it again (if he indeed did it at all) and explaining he should have come and gotten us. This is probably the worst of all possible worlds - if he DIDN'T have anything to do with it, we're overbearing and annoying the heck out of him. If he DID have something to do with it, it's a much lighter punishment than flooding a bathroom should earn.
But that's life - acting as best you can with incomplete information.
The bug I'm suffering through, as it decides whether or not to go all-out or simmer at a light misery, makes me tired. So it's harder to bound about checking on Xan, or helping Tracy with the walk, or even doing everyday things. But life doesn't accept excuses, so I still have to do the best I can with what I've got to do it with. Even if it seems I'm draqging forty extra pounds or so around.
Yet, life goes on and hitting the pause button isn't an option. And I do have it easier than many - if Xan's in school I can rest up, catch my breath and build up some energy to make it through. Several people don't have that option. So I am appreciative of the advantages I do have.
And the advantages Xan has. Even though working with him can be a challenge for everyone's temper, he's already passed his 4th grade stuff and working on fifth. He's very good at not getting into dangerous things, so usually the worst things we have to worry about are messes and damages, not poisoning or ER visits. And as I written before, there are times when he does seem to get that daddy doesn't feel good, so he should back off his demands for food or TV or whatever. It's amazing how a little peace in the middle of tough times can be more fulfilling than a long stretch of peace over many days of ease.
I assume, anyway, since long stretches of peace here probably don't meet many people's definition.
So life goes on. And we keep on trying to live it, one day at a time.
Walk for Autism is April 28th, at Oxford High. If you want to help in any way, send me an e-mail at BHRobin at aol.com.
Grades
Still a ways to go but at least he's making a good start.
Those are moderately easy grades to make - can he add, does he write, can he read and answer questions? At the least it's simple to tell pass/fail - a binary yes he can/no he can't division. Maybe telling how well he can do those tasks is a bit more of a challenge, but at least you can start from a good base of certainty.
Other areas are harder to judge. I still help him in the mornings to get ready, helping him shower and get dressed and all that. COULD he do it himself...maybe. A few times on weekends I've said you have to do everything by yourself, and just stood there and told him what to do. It took a while - a long while in some cases - but he did. But unless I want to wake up practically before I go to bed and get him up soon after that, we can't do that on days we have to be somewhere. And some of that may not truly be the fault of him not being able to or not wanting to - he covers his ears in the shower, and I suspect that the falling water noise in that enclosed space may have a bad sound for him. (For those of you wondering why we don't do baths instead, he's decided he doesn't like to sit down in those for some reason, which makes cleaning a bit difficult and splashy.) It's hard to tell exactly where the line here is between he can and he can't.
When we go shopping, I've been letting him buy things he wants - Milo's tea, or a Sprite - and giving him money to pay for it; making him carry it to the register; put it on the belt, pay for it; get the change. The cashiers where I shop know Xan and that he's autistic, so they're very patient and work with him. He still needs some guidance about taking the change, because generally he feels the quicker he can grab that tea or Sprite the better. But he's getting the hang of it, or at least the hang of the motions of it. I'll have to see whether or not he gets the whole idea little by little, so I can't really give him a grade there.
Those things I can handle, or at least accept. Some parts of life can't be pegged as pass/fail. But what about what I do - do I make him do too much, or too little?
I've been told - rather sharply and completely justifiably - to stop helping Xan at breakfast at his school. I would always start to open his drink carton for him and let him finish it, but finally his teacher pointed out he did that himself every lunch, so why didn't I just go ahead and let him do it at breakfast? A fair point.
The household stuff I help him with - I'm always stuck between making him do it on his own, or helping it/doing it for him. It's the balance of getting him independent vs. being able to get where we need to go when we need to be there. I'm not sure where I fall on that, or if I pass or fail.
He's made progress, but I have to look at getting him ready to act on his own more and more. This isn't easy, with all kinds of mixed feelings there - 'can he do it?'; 'can he do it right?'; 'can he do it safely?'; 'can he do it today?', on and on. Pushing him too little leads to dependency, too much leads to frustration, fits, and a refusal to do anymore.
It's a tough balancing act, and right now, I'm not sure what grade I would earn.
Don't forget - autism walk April 28th, at Oxford High stadium. We're starting to get in gear and get more stuff set up and going. If you want to help, e-mail me at BHRobin@aol.com. Hope to see you there.
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