Chicken = Nothing

Yesterday Melissa (Mom) attended Joey (son with autism)’s annual planning meeting at his community agency.

The staff and she encountered several of the ways he keeps people from making him work, which is to say, asking him to do anything that his mind does not want to engage at the moment.

As it was Friday, Melissa asked him an easy question, What are you having for breakfast tomorrow?  Joey knows full well that Tim (dad) always gets him a Saturday morning donut.  He knows when it’s Friday and he anticipates this.  So he said,

Chicken.

That is his blow-off answer to any food question.

Joey, what did you have for lunch today?

Chicken.

What treats do you want in your Christmas stocking?

Chicken.

Parents of neurotypical teens will recognize this:

What did you do at school today?

Nothing.

Joey uses chicken for breakfast the way others’ teens use nothing happened at school.

Not all people with autism play this game, but for Joey it is a persistent way of enforcing personal boundaries.  Or of creating an ad campaign that made him a bunch of money that he’s not sharing with us:

Mysteries of Memory

I found this picture while picking up after Joey.

Axtell

Sometimes I’ll catch him sitting with it, smiling and even seeming to converse with it.

That’s him in the green shirt in the front row.  It is a middle school class from the middle 2000s, so around ten years ago.

He keeps it like a treasure.  He speaks the names of people in it.

Joey has this amazing long term memory.  He can recognize places we visited in his childhood.  He holds onto names and details quite well.

This is perplexing, given that he can’t attend to present tasks without constant redirection or give simple answers to questions about what he did in the last few hours.  (Of course maybe the latter is just him being stubborn.)

I’m reminded again of a prominent psychiatrist at Texas Medical Center who said, “We know more about outer space that we do about the brain.”  That’s part of the aggravation and wonder of autism: the mind is wired mysteriously.  It takes a person to most of the same destinations as a neurotypical mind, but by some very different paths.

Care givers are blooming idiots, learning those paths as we grow with those in our care.

Seizure Disorders

Last night I was out tinkering with some uncooperative lights by our front door.  A neighbor came up and invited me to come over to a gathering around a wood fire in the driveway next door – a group was there and they wanted to “get to know the mysterious people in the gray house” (that’s us).

It was a pleasant gathering and a good chance to explain my hermit-like existence.  Care giving means keeping a close watch.  Our adult son with autism had seizures set in when he entered his teens, and there’s just no leaving him alone in the house.

The neighbor who invited me over perked up – turns out his adult son, who is not autistic, just started having seizures.  Opened quite a door toward getting to know about one another’s families, that.  He and his wife worry that they can’t keep constant tabs on their son, who is athletic and likes to take swims in lakes by himself, among other behaviors that wrack parents’ nerves.

I know a clergyman in another state who called when the same problem intruded on their family.  Their son, despite seizures, graduated from medical school and got married.

Apart from the neurological damage that can accompany seizures, the danger of falls with head and neck injuries creates stressful isolation and hyper-vigilance for care givers.  Trying to stay in proximity to another person, “just in case,” warps both social and emotional life.  Melissa and I couldn’t sit around the neighbors’ fire together – one of us had to stay in the house to watch Joey while the other socialized.

Seizures leave a lasting mark on care givers, too.  Here’s a bit from our upcoming book (really, we’re just waiting on the cover art… release is imminent), Blooming Idiots.

One of the worst stings our family suffered was Joey’s teenage onset of grand mal seizures.  The first one came with no warning and we thought we’d watched him die right in front of us. It is a sickening memory.

Although Joey’s seizures are less frequent since he got past puberty’s brain chemical chaos, one will sneak up on him now and then. The big danger is head or neck injury from a fall.

Any loud noise will make us scramble to respond. I noticed my anxiety rising at a gym, when the really big lifters dropped their massive weights at the end of a set. The kaboom of metal plates hitting the floor sounded too much like a Joey seizure in progress.

One night at home, Melissa heard a crash and rushed out of our bedroom to help Joey, only to find it wasn’t Joey down. It was me. I’d gone to help Joey dry off after his bath and slipped on water he’d splashed out of the tub.

I was fine, but Joey’s reaction wasn’t what one might hope. He was laughing. I mean cracking up. To him, it was like a pratfall in a comedy. He thought I was doing something to entertain him. It was up to Melissa to say the right things like, “Are you OK?”

If you have family or friends who are caring for a person with a seizure disorder, it means a great deal to give them a break.  Learn to recognize seizure onset so you won’t panic, and find out about the proper first aid.  Giving a care giver some down time won’t totally purge the stress we carry, but it reduces it, at least for awhile.

More than that, it can save a life.

Soon there will be presents

Let’s start with some vocabulary :

Perseveration

Thanks, PsychCentral

The idea from which our son is unable to switch is that there’s a particular video he desires as a Christmas present.  Or birthday present.  Doesn’t really matter, he’s just trying to establish that the next time that presents are exchanged, he wants this video.

So he’s nagging Melissa in particular, and the repetition of words that has ceased to be socially relevant or appropriate is,

Soon there will be presents.

Oh, there are other phrases he works into his pitch.  But when he says the above, you know the pitch is coming and that’s all you are going to hear for several minutes.  Or hours.  Or the weekend.  Or long stretches of time between August and December.

He also brings in gestures such as running his fingers, clean or not, through Melissa’s hair  or, literally, bending her ear to make sure she’s attentive to the socially irrelevant and inappropriate words.

I made the mistake of leaving a gift for our friends’ kid unguarded.  Joey assumed it was our cave-in to Soon there will be presents and began to unwrap it.  Fortunately he recognized it as not the right shape and weight to be a video cassette so he abandoned the effort without destroying the wrap job.

But it’s the thought that counts or something.

No Language or Sex; Lotsa Violence

Living with a person with autism can mean very little verbal interaction and a reduction in intimate time and space. It can also open a can of whoop-a** on ya.

When our son Joey was a little guy, he would have violent meltdowns. These could come from frustration because we didn’t understand something he tried to get across to us or anxiety because he couldn’t understand something we tried to communicate to him.

One incident left Melissa with a scratched cornea. I was flogged with a rope dog toy. Another time it took both of us plus our older son to pin Joey to the floor until the fury subsided. He would kick, bite, punch, throw objects – we couldn’t ignore a single appendage if we valued our safety.

I caught this very good video on Twitter. It’s less than four minutes long and worth a viewing. It’s specific to caregivers of people with Alzheimer’s, but describes a hazard faced by many kinds of caregivers:

You have to fight your own nature as well as the person beating on you. You have to stay calm and gentle while under assault. It is a physical ordeal and emotionally exhausting.

It is freaky to face a physical attack by someone you love and are struggling to care for.  The emotional wounds can linger longer and more painfully than the bodily bumps and bruises.