The Ravenous Bugblatter Beast of Traal, (not) at your service

“…avoid the gaze of the Ravenous Bugblatter Beast of Traal (such a mind-bogglingly stupid animal, it assumes that if you can’t see it, it can’t see you)…” Douglas Adams, The Hitchhiker’s Guide to the Galaxy

I (Tim) made a mind-bogglingly stupid move this week. I was out grabbing lunch, when I noticed someone I knew at one of the tables. He was engaged in a conversation and didn’t see me. And I used that as an opportunity to scuttle to another part of the place where a wall would be between us. If I couldn’t see him, he couldn’t see me.

Now, this guy is pleasant. Funny, interesting, a good guy. But I didn’t want to interact. Not so much as to go by and say a quick “Hey.”

One of care giving’s side effects is to send my introversion off the charts. When I’m not doing all of the required (and often unwanted) chores, I want to withdraw and refresh.

An unplanned conversation, even with a pleasant person, gets my adrenalin pumping as my anxious mind blares, “Oh, crap, where is this going? What’s he going to want? How long is this going to be? Boundary! I need a boundary!”

I realized that this is the same mind-body reaction that takes place when I hear our autistic kid waking up. Usually, I’m up first (well, the dog is and expects me to follow ASAP). When I hear Joey stirring, the mental noise and bodily tension starts: “What mood is the kid waking up with? Is he feeling sick at all? Is there a seizure on the way? Did he have a bed or bathroom accident? Will he take his breakfast and meds cooperatively, or will he fight me over it? Will he get his coat on and get on the bus without hassling Melissa and the driver?”

Except for the bus part, every morning is like that, 365 days a year. And that’s just the first hour of care giving.

We’ve blogged here before about care giving’s disruption of social life. For an introvert like me, it gets to the point where I just about don’t want a social life. Really warped. Mind-bogglingly stupid.

I’m hoping to convince Melissa to share about what it does to an extrovert – she’s noted some ways that it warps her social interactions and I’ll ask her to share that in her own words. If I don’t hide out and avoid bringing it up.

“Try”

Melissa and I are having a bit of writers’ block. Neither of us find our ideas fresh, or at least ready for prime time.

So here are some lyrics from someone else’s current hit song. It’s about romantic love, but there’s quite a bit of cross over to any passionate endeavor and relationship, so it’s right in a care giver’s wheelhouse. If you care, it hurts, but hurt doesn’t mean failure as long as you get up and try…

Ever worried that it might be ruined
And does it make you wanna cry?
When you’re out there doing what you’re doing
Are you just getting by?
Tell me are you just getting by by by

Where there is desire
There is gonna be a flame
Where there is a flame
Someone’s bound to get burned
But just because it burns
Doesn’t mean you’re gonna die
You’ve gotta get up and try try try
Gotta get up and try try try

The video is great, too, and available at the link, but it’s sensual and we don’t know all of the dispositions of our readers. So you can go and watch it if you want. Or just close your eyes and enjoy the words and music. And once you’re feeling refreshed, get up and try, try, try… again.

So What if it’s Weird?

When I told her of my distress, my dear, departed friend Pat used to say “Melissa, just put your hands on your hips, stick out your butt and say ‘SO?'” It was about others’ reactions to our autistic son’s behaviors.

We know that those we care for have a lot more depth than passers-by will ever see. To those people, our special-needs loved-ones are weird. But we also know that we do not have to justify their special needs to anyone.

We have to correct and suppress some behavior. When our son decided to sit in the driver’s seat in the bus and not budge, he had to be forced to move to a passenger seat. When he lashes-out to hit someone or tries to take food from someone else’s plate, he has to be stopped.

However, when he waves a “fidget” in front of his face (a small item such as a short, thin wire covered in felt) in public, or food falls off of his fork, back onto his plate, we act as if nothing happened. Last night, at a restaurant, he constantly grabbed for the small baguettes of bread from across the table and we broke pieces to help him eat slowly. People stared. We had no desire to explain that he’d had a seizure a few hours earlier and was desperately hungry, especially for carbs.

There are times to correct behavior. A restaurant, in our minds is not always the place to do so, especially when we are entertaining guests who understand. We don’t need to explain ourselves to inappropriately staring (redundant phrase, I know!) people that our son is a perfectly wonderful person. We are busy with our guests. He is not harming restaurant property or making loud noises. He is still wearing his jacket and having trouble keeping his food on his fork. We help him without losing track of what our guests are saying. When he finishes eating, he may wave a scrunched-up napkin in front of his face, staring at it cross-eyed if he likes. At least he is not staring at others!

And to our friends living with and caring for special-needs people, please do not be hard on yourselves. If it makes you feel better to hand out cards explaining autism or Down’s Syndrome or any other special need, that is fine as it might help others understand but you do not owe anyone an explanation.

After one of “those” conversations with Pat, she would always end by saying “remember to pray, ‘God of Abraham, Isaac and Jacob, protect the souls of those we love and save those who hurt them, us and others.'”

Right tool for the right job

So Joey, our autistic son, was out of sorts Monday morning. His weekend was “different” and on the autism planet “different” = “bad, undesirable, fail, unwelcome, must be destroyed.”

He spent Saturday night in a respite apartment, giving mom and dad a night out and beginning our family preparation for the day when he will move into a group home. The stay went just fine, but after reflecting at home he decided to express his, um, issues with our little weekend plan.

He tried to swat the dog, then took a swipe at dad. He bellowed angry words and noises.

Then he got on the paratransit bus, plopped himself in the driver’s seat, and wouldn’t get out.

The patient driver negotiated but couldn’t get him to move. Tim was en route to work and Melissa can’t budge Joey physically. But she had a brainstorm…

Joey’s older brother (also a Tim) was home from college for the MLK weekend. He was sleeping, but Melissa went and roused the lad…

A153487_017As an older brother, Tim wasn’t one to put up with Joey’s stuff in the same way mom and dad would (e.g. getting thrashed). Tim (the younger) played football, wrestled, power lifted and listened to angry metal bands, among other skills. So he put a few big brother take downs on Joey several years ago, and Joey learned to be compliant with him. Although loyal to the autism planet’s ways, Joey’s made concessions to life on the Tim planet.

So Tim showed up in the bus door, and Joey was quickly in an appropriate seat and on his way.

No deep lesson with which to leave you. Just the thought that sometimes people in our care need to be held to the same standards as the rest of humanity. And that sometimes care givers, by disposition, habit, training or other inhibitions, aren’t the best tools for that job. So it is prudent to have an array of tools available.

Jailbreak

Hard to believe after my blog run of pity parties, meltdowns, dirges and melodramas, but I’m here to report that Melissa, Joey and I all got out of jail and lived life differently, at least last Saturday.

Joey had a respite night in a staffed apartment provided by his community based program. He was a bit dubious of the idea, and it took some patient work to get him to go, but the staff tell us he did very well. He was grumpy with us on Monday morning, but he’s like that with most changes of routine. He was back to his sweeter self by Monday night.

Jan 19 sudan eventMelissa and I went out to dinner. We attended a fun fundraiser for a cause we support, and stayed ’til midnight. We were able to laugh, enjoy a Bluegrass band, socialize, and do some good for the world.

Then we went to an open-’til-2 a.m. pub, to have their “Celtic Cider” (hot apple cider with a shot of Jameson Irish Whiskey) on a freezing night. It was a people watching hoot. The bar had an “80s Ski Party” theme, with music from that decade and revelers in horrific neon ski clothes. So we got to roll our eyes about 20ish women cramming cellulite into spandex and enjoy the fun of just hanging out to an irresponsible hour because we could.

We talked about how long it’s been since we had any span of time with that kind of freedom. It was welcome and, even though I’m still feeling sleep deprived, we’re both still smiling about it.

ABCDEFGHIJail

One of my jobs (like a house full of kids, I know they’re all there but can’t keep track of them) had some customer service training the other night. It included a Myers Briggs personality test for each person in the department.

This particular test yields a four letter code describing a person’s natural and preferred ways of relating to the world. I’m not going to try and unpack it all here, as there are all kinds of letter combinations describing all kinds of people. I think I scored something like INFJ. Or LMNOP or something.

It’s enough for me to tell you that Myers Briggs, like other personality assessments I’ve taken for this, that and the other job, accurately shows me to be something of an introvert, refreshed by quiet, private time, preferring to think things through rather than just jump in and do, and much in favor of order over chaos. I like patterns and big ideas over micro details.

Yes, cue the laugh track. I’ve let my life become anything but… well… my life.

Quality quiet time is out the window. When I’m alone I usually give in to emotional exhaustion rather than enjoy the space. I spend most of my time reacting to others and handling the tasks and chores assigned me. It starts when the dog pokes at me to take her outside well before the morning alarm goes off, and pretty much keeps up until I sit in a stupor and fall asleep in the evening. The in between affords little time for big ideas; it’s mostly the kind of detailed chores that I enjoy about as much as our autistic kid enjoys using his fine motor skills (hint – he won’t hold a pencil).

No skateboarding.  Take off your belt for the metal detector.  Etc.

No skateboarding. Take off your belt for the metal detector. Etc.

Melissa isn’t in a place to blog right now, and I hope I don’t misrepresent her here – but I’m 99% sure that her Myers Briggs would show an extrovert, enjoying active time with lots of people. Exactly what her condition prevents. Her life isn’t her life, either.

It’s way too early on a Saturday morning. I can’t sleep and I’m sitting here talking out loud on the keyboard, trying to get at the stress and maybe purge a bit of it.

Whatever one’s personality type, illness and care giving can create a jail-like environment, locking one into a lifestyle deprived of natural preferences and behaviors while forcing submission to unwanted and uncomfortable routines.

Anger (part 2 of ???)

For our autistic son, anger shows up when he can’t make himself understood. Which is pretty often since he speaks in round about ways. When he decides to use words at all.

This morning, all was going well getting him ready for the paratransit and me for work. Once Joey’s had breakfast and meds, we’re pretty much ready for me to leave (“Dad has to go to work” is one of his favorite phrases) and for Melissa to come out and watch for the bus with him.

So as Melissa joined him on the couch, I said, “Joey, who’s that?”, which is a way we prompt him to acknowledge the presence of another person.

Instead of the expected and happy “Hi, mom,” he glared at me and, in a deep, menacing tone started bellowing “Who’s that?” back at me, over and over.

Melissa spoke to him with some tenderness, and I asked him if it was time for “Dad has to go to work,” and that seemed to stop the situation from escalating into who-knows-what-kind-of-hell.

Later, via text and a phone call, Melissa let me know that she had established communication with him and found the source of his anger. It ran something like this:

Melissa: Joey, how do you feel?

Joey: Happy. (His inflection said anything but happy).

Melissa: Did you want mom to come out here sooner?

Joey: Yes.

Melissa: Did I take too long to come sit with you?

Joey: Yes.

Melissa: So you’re angry at me.

Joey: Yes.

By establishing communication, Melissa eased Joey’s frustration and the resultant anger.

The communication also kept me from frustrating myself (and getting angry) by letting my imagination wander around producing “causes” for Joey’s anger, blaming myself or some set of unrelated circumstances for what was a pretty simple case of, “I want mom to come sit with me now” (which of course he won’t say unless prompted).

It also spared Melissa from worrying that Joey and I had some kind of confrontation or other upset before she came into the room – imagining that something had gone wrong and that I wasn’t taking time to warn her as I rushed off to work.

The constant effort of care giving, as an astute commenter noted yesterday, can rub one’s last nerve raw. Care givers and those in our care can imagine all kinds of insults, bad intentions and stupid stuff when we are at our most run down.

Communication is one form of calming, cooling medicine for our nerves, to prevent outbreaks of anger.

Anger (pt. 1 of ???)

Dr. Bruce Banner (The Hulk) is not alone in his anger issues.

Care givers get plenty angry, as I’m sure you’ve detected in some of my rants on this blog.

The people in our care get angry, too. If nothing else, constant pain will mess with one’s emotional state. Throw in loss of freedom and control, and the occasional strong medications, and you have a prescription for everything from mild grumpiness to all out rage.

When both the person needing care and the care giver are stressed, we misread each others’ anger as personal attacks. That’s seldom an accurate perception.

Most of our anger is raw frustration with the situation that engulfs both parties: prolonged pain, lack of sleep, effort without results – stuff that’s neither person’s fault but for which both people feel guilt.

The person under care is ashamed of being in need, and of the difficulties this brings to their care giver. So if the care giver is angry about – I dunno, a broken appliance at the end of a long day – the person under care assumes that the anger is directed at him or her for being a problem.

Care givers are ashamed of our inability to make it all better. So if the person under care is in a bad mood from a day of constant pain, we are prone to assume that the anger is a criticism of our effort.

I don’t think I’m out of line saying that Melissa and I have had plenty of these misunderstandings. After more that two decades of marriage, I’m just starting to recognize her pain-based anger and not take it as a critical attack.

I’m sure we’ll revisit this subject from time to time. We don’t have a brilliant series in mind. Unlike Dr. Banner, we’re not angry all the time. But it gets the best of us often enough that it bears reflection and, God willing, yields something worth sharing for the benefit of others.

A family first? Or not?

As we regroup after last week’s health struggles, from which Melissa is feeling better but not all the way back, we realize that a long anticipated event is sneaking up on us.

This coming weekend, our autistic son will spend his first night away from home and without us. (Melissa and I have had a few nights away over the years, but always with someone to watch Joey in our own familiar home.) This time, we will make use of a respite night through his community program, in which he will spend the evening in one of their apartments. The staff are taking him over to see it and talk about it during the week. He’s grown in his ability to understand information about upcoming events.

This is a family first, and part of our overall preparation for the day when he will move into a permanent residential placement.

But lots of question marks accompany the plan:

Will he hate it, and go bonkers the next time we try it? Or will he love it and not want to come home?

Will any health emergencies complicate the weekend? Joey still has the occasional seizure, for instance.

Will Melissa and I be able to have fun at an event planned for that night? Or will our own depleted energy levels pin us down at home?

Care giving? It’s, like, always talking in, like, questions? You never know, like, how things will turn out?

It’s like this guy is running our lives:

Meow

We’re coming out from under this last hellish week.

Melissa is feeling better, but certainly not 100%.

Joey is glad to have her back in his morning routines. In the living room, waiting for his paratransit bus, he said, “Hi, Mom, how are you?” He said it with a tone like our cat’s meow when we’ve been away. It conveys, “OK, glad you’re back, but don’t take off like that again.” Autistic people can do wonders with inflection.

2013-01-09_18-49-34_493He’s definitely glad to get his version of normal back. He was pretty tired of 24/7 dad. And dad was just plain tired.

Thanks for your prayers and kind, encouraging words. They mean a lot.

Send ’em up on a regular basis, because weeks like this last one are a regular feature of giving and receiving care at home.