Monday, August 18, 2014

4 Things Zack and AJ Learned This Summer

1.  Zack and AJ can buckle their own seatbelts in the car!  I can't possibly convey the extent of my utter joy in telling them to get in the car, and then just getting into the driver's seat, without bending over each of them to help them with seatbelts!  It is so freeing.  It's one more step toward going to the store like normal people.

(Now if either of them change seats, I'm not sure they'll be able to do it, but as long as they sit in the same seats every time they are in the van, they can both buckle their seat belts all by themselves.  All I have to do is remind them to put down the iPads, use two hands, and focus.)


2.  AJ is almost completely toilet trained for #1.  He's gone in there and done his business without being prompted, which prompted me to quit reminding him, which then caused him to start having accidents again... a vicious circle.  But he can do it, and does.  Now, #2 is another story.

3.  Zack has taught himself how to operate the TV remote.  This might not sound like a big deal, but it's like a computer operator finally learning how to type.  Controlling what is on the TV plays a huge part in Zack's maintaining a comfortable routine.  This small inchstone (as opposed to milestone, right Melissa?) has done as much for calming Zack and reducing the amount of screaming as any medication we've tried.

And it's fascinating, watching what he chooses to watch now that he doesn't have to ask for what he wants.  Most of the time he's like any of us, and he's a surfer - he doesn't know what he wants to watch, he just wants to flip through random channels until he stumbles upon something interesting.  Not all random channels, of course, just 289 thru 303- the Disneys, Nickelodeons, Cartoon Networks, TV Land, and Boomerang.  He also sorts through the list of DVRed shows.

Imagine, though - the next time you are bored and channel surfing.  Imagine that you don't know how to run the remote and you have to ask someone to change the channel every time you want to.  How frustrating that must have been!

4.  AJ has become a funny, outgoing little kid.  Okay, he always has been, but he's emerged further from his shell this summer than ever before.  Anytime anyone announces an intention to go somewhere, he jumps up, slips into shoes, and stands by the door.  He wants to go everywhere, with everyone.  He loves running errands and saying "hi" to cashiers.

He's got a new act in his comedy routine, too.  He puts something over his head, covering his face (maybe a blanket but more likely a pair of shorts, or he pulls his shirt up over his face, sticking his belly out) and holds his hands out reaching blinding, saying "I can't see!  I can't see!"

He has learned to repeat the acts that get the most laughs.


Wednesday, August 13, 2014

Random Thoughts on Suicide and our Love for Robin Williams

I know that no one wants to think badly of Robin Williams for killing himself.  We all want to find a way to - not necessarily justify it, but make him blameless because we loved him so.  So I've been reading so many articles and posts lately about mental illness, and how the people who commit suicide are in such pain that they see no other way of escape, no other relief, and how terrible that pain must be.  Many of them stop just short of stating it's not suicide if you are driven to it by your mental illness.

I know that i have no idea how someone feels when they re at the point where they might commit suicide.  I am the first to admit I don't know how other people feel and I wouldn't judge them for what they do.  Nobody knows what it's like to live as anyone else, unless we could climb inside each other's heads and curl up in their brains for awhile.  All we know is how WE IMAGINE we'd feel in their shoes.  And that's imagination.  We don't even know how we'd truly feel in their shoes - we have to imagine it.   Imagination is powerful and makes us think we KNOW.  We don't.  So I don't judge.

But a part of me has been a little concerned for the last day or so, that teenagers and young folks who might be going through a rough time will read these articles and think, suicide is okay as long as you are really, really in pain.  As long as it's your only way out.

I think we need to be very careful, the message we put out there.  And by we, I guess I mean the media.  In our anxious hurry to show our love for the departed Robin Williams, in our hurry to understand and forgive, we might just be telling people that what he did is okay, because he was mentally ill.

Now, again, I'm not judging.  I have no idea what it was like being him.  He was always so manic, it's hard to imagine that he didn't suffer sometimes from what to do with all that energy.  It was like he was always running on high adrenalin.  Couldn't settle down.  Couldn't make himself stop.

Still.  I feel like, if you have the cognitive processing ability to know that something is seriously wrong with your thinking, you have a responsibility to get yourself help.

But i want to make justification for him, too, because I loved him, and because I know that I don't know what was going on in his head.  So maybe, by age 63, he'd spent so much of his life trying to find a way to calm the mania and at the same time, give everyone what they wanted from him, and maybe by age 63 he'd been down so many paths trying to find help and not really finding it, that he lost all hope for ever feeling better.

When it's an older person who kills himself it is different than when it's a youth.  You know he was mature enough to have thought this through.  

I just hope we aren't telling teenagers that feeling terrible and hopeless and in pain is a reason to kill yourself.

Sunday, August 10, 2014

Here's what's wrong with this world -a rant

I should just stop reading the news and reading Facebook posts because it just makes me sad and mad.

This morning I first read about a mother of a 24 year old guy with Fragile X who spent some time at a baseball social event, for a team where he serves as "manager" (an honorary position, and I should probably also put honorary in quotes here, because it's not really given in an effort to honor.  From what I've seen, when a person with cognitive disabilities is given a position like this, it's a halfhearted attempt to include someone who doesn't have the ability to understand the rules and play the game, but wants to be involved, so they throw this bone at him, and then sit back and feel like they've done a good deed.)

Sorry, I'm a little annoyed and disappointed and got off on a tangent there, and I don't feel like editing or cleaning up this post, so I'll just keep going.  Anyway, this 24 year old guy knew very well he wasn't really part of the team and his mother had to sit there and watch him, watching the others, knowing he knew he wasn't one of the gang and feeling ignored, and alone.

It's one thing for people to ignore the kid.  It's another for him to know it.

I don't know that it's the team's fault.  They are behaving the way they were raised, and doing what is comfortable and natural for them, and that is, socializing with people they know can communicate back in the same, predictable, easy way.  They don't know how to talk to people with cognitive disabilities, so they don't.

I think we have all done it.  We were all young and lacking in social confidence, once.

So I don't know what the answer is here.  Part of me wants to tell the mother to take him somewhere else to socialize, somewhere he'll be accepted and appreciated, with people who will make him feel good about himself.  Another part wants her to make sure he is out and about where society sees him and has to deal with him, because isolation won't help the rest of this world learn how to live with this kid, and others like him.  But I certainly don't like the idea that he feels bad, and I don't like the idea that we might have to sacrifice our own kids' happiness and confidence in order to educate the rest of the world.  There's no easy fix here.

The second thing didn't hit home quite as closely, but it irritated me anyway.  I was just reading about how race car driver Tony Stewart hit and killed another driver last night during a dirt car race, and races will go on today, and Tony Stewart will race, and it's business as usual today in the world of racing, with everyone of course sending the requisite "thoughts and prayers" to the family of the guy who was killed.  Thoughts and prayers, my butt.  I always wish there was a better way to say that, because everyone says "thought and prayers" and the words seem hollow and meaningless.  And in this case, I thnk they totally are.  Business as usual, huh?  I don't think Tony Stewart is alone in blame for this tragedy, the guy who was killed acted like a reckless idiot - but they all did.  The sport in itself is centered around reckless idiots, in my opinion.  Racing around in loose dirt in a pumped up car that is practically deliberately built to flip and roll and be difficult to maneuver?  That's what I see.  Everyone who does it is a reckless fool.  But whatever.  To each his own.

But where's the respect for human life here?  For each other?  In both cases?  Are we a modern, civilized society?  Not so much, in a lot of instances.

Monday, July 28, 2014

Fighting Tooth and Nail!

We need nail trimming and tooth brushing tips and advice.

I've had miles of advice throughout the years.  I think I just need a refresher.

We've been implementing (or rather trying to implement) the "ready, not ready" method where I don't push too hard to clean or trim teeth or nails, which are both such sensitive sensory experiences, until the boys tell me they are ready.  I say "ok, tell me when you are ready," and they are supposed to, at some point, tell me they are ready and then comply.

Only with Zack, he is never ready.  "Ready, not ready" to him just seems to mean "oh good, I'm off the hook, they aren't going to force it."

I got AJ to let me trim a few of his nails by waiting until he said he was ready, and the promising him two chips per nail.  Every time he lets me get one nail trimmed, he gets two Doritos.  (Furthering the teeth problems, incidentally.)

So that worked for one.  After that, he just keeps telling me he is ready, but then he jerks his hand away before I can clamp down on the trimmer.  He told me to do my own nails, so I found one that wasn't bitten to the quick and trimmed it for him to see.

Made no difference.  He repeatedly tells me "I'm ready!" and offers me his hand, only to yank it away as soon as I get the trimmer in place.  Regardless of the promise of chips, he just can't bring himself to be still for it.

And his nails are luxuriously long and gorgeous.  I'd be having a great time with them, and some sparkly green polish.

They aren't working on him, though.  I have thought about trying to catch him asleep and doing it.  That doesn't help us with the problem of how to push past the sensory issue, though it does get the nails trimmed.  I'd have to be awful careful, though; even medicated, he's a terribly light sleeper.

And teeth brushing.  Equally painful for AJ.  Zack actually isn't too horrible about it.  He doesn't like it and doesn't do a great job, but he isn't impossible.  AJ, however, my sensitive boy, will fend you off like a ninja.  Honestly, if the people who diagnosed him with fine motor delays could see how expertly he avoids the toothbrush in my hand....  He'd make an amazing swordsman.

So.  I'm opening the floor for new ideas.  Because I'm fresh out.  And tired.
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