Not Fabio but he’ll do

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After all my work to get in shape, this cover was rejected.  Dang, wish I’d a thunk up that title, though!

The cover design credit for Raising a Child with Autism goes to Elaina Lee, who worked with our publisher on the concept.

Our initial suggestion was that the cover be more cartoonish and humorous – maybe a confused guy holding a leaky hose over a withered plant.  Our working title was Blooming Idiots, intended to reflect the on-the-job, trial and error (lots of error) learning  that comes through care giving.

But our publisher had a wise insight as release date drew near: Can you imagine a Facebook status or tweet something like, “Just read a #book about #autism called Blooming Idiots” ? People are going to think you wrote a book that calls people with autism idiots.

Darn it, we liked that title.  But the publisher was spot on.  Sampling the title around to potential readers indicated that it provoked a negative reaction, as if we were using the R word.

So, we tried to go artsy and suggested stuff like Our Family Garden.  But that made it sound like a book about, well, gardening.

Finally, the publisher decided to go with a straightforward approach, and Raising a Child With Autism went on the cover.

That didn’t lend itself to our original cartoon concept, so the cover art team went with a sweet image of weathered, older hands and tender toddler hands holding some earth with a sprouting plant.

We had problems with it.   One was that it was too gentle.  Our hands and Joey’s hands didn’t always work cooperatively.  Care giving verged on combat much of the time.  Plus part of our story is how Melissa and I labored together as a couple, and the cover concept featured just old guy hands and no mommy presence.  The artists went back and tried to capture that, but the result was too busy and would have cluttered the cover.

book-coverSo Elaina Lee creatively and rightly shifted the focus to the child, and that’s the cover you see.  No, that’s not Joey.  He would never wear a hat because of his sensory issues.  He is seldom that still and focused.  And as we share in at least one chapter of the book, he can be pretty hard on plants.

But he does smile, he does delight in simple things and our reward as care givers comes through those kinds of realities.  So there’s a sweetness in the cover that rightly draws the caregivers toward the person in their care, and the hope and joy found in new life blooming.

Interested in your thoughts on the cover.  What does it say to you?   And how would you symbolize your experience of care giving?

On the Border

We had lots of friends over last night. Some familiar folks and some new ones, too.

Our son’s paratransit bus pulled up about an hour after company arrived, and Joey came up the walk way with a big smile on his face as he realized that company was here.

Although we had food ready to go, our friends graciously insisted on waiting for Joey (well, the grownups did allow for beer and wine while waiting) and their kids ran out onto the walkway to welcome him home. He ate with the group and then retreated to his room for some private video watching time.

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Joey at a social event.  Creating border space.

Later, he came out of his room, again with a big smile across his face. He didn’t come sit in the group, but stood just outside the living room. He came in a couple of times, accepting the hand of one guest to help him down a step and going around to make brief eye contact with others.

He behaved similarly at his brother’s wedding reception a few years ago, standing at the edge of the dance floor, smiling, but not accepting numerous invitations to join the dancing.

Joey creates these border places that allow him to be part of social occasions. He doesn’t dive in and do all of the typical social stuff, nor does he completely withdraw except for temporary respite if things get too loud for him.

People on the autism spectrum are in part defined by what most of us would call impaired social behavior. But they’re not asocial. They are capable of creating social space that works with their sensory issues.

Our work is to watch for those comfortable border places that allow them to feel connection with others without trying to force expected interactions upon them. As an introvert, I can appreciate that.

Let ’em have their time on the border, I say.

Speaking of being on the border, we have a release date for Blooming Idiots: Amateurs Raising Plants – And A Kid With Autism. It will be October 31st, so right on time for your holiday stylings. Consider getting a copy for a family caregiver you know… we’ll have more details in the near future.

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.

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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.

A tale of two something somethings

Here’s our front walkway.  Yes, the same one where I go to photograph weeds to illustrate the futile feelings and fleeting successes of care giving.

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Yes, it’s neat.  That’s because we came into some money and paid to have it cleaned up.  Care giving is about recognizing your limits and accepting (or buying, or begging for) help.  If I’d started the job, it would still be half done, probably resulting in a picture for another post about how care giving never, ever reaches a point of completion and satisfaction.

Meanwhile, two of the new plants summarize the modern world of therapies for people with autism.

The plants are just a few feet apart, getting the same sunlight, same water, same same.

Yet one is coming along…

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…the other, not so much…

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Those of us caring for people with autism learn that the ultimate silver bullet therapy that turned one kid “normal” simply bounces off of another kid.  Helping a person with autism engage and enjoy life requires intense attention to that person’s unique aptitudes and limitations.

And guessing.  Lots of guessing.

And grace/luck/fate.

And even when you hire a pro to do the planting, one bush grows and the other withers.

 

Mental Exhaustion, or…?

I’m coming off one of those sleep deprived nights that go with having a person with special needs in the house.  I’m sure I’ve shared a zillion such incidents so the details are irrelevant.

Care giving involves emergencies in the middle of the night or when one is already depleted by all of life’s other stuff.  And even without the emergencies, there’s the steady drip of energy into routines of care (aka chores) that turn life into a blur.

I find myself having to check my PC or phone to remember which day of the week I’m on.  Is that advancing age or the fog of extended care giving?

Inventories for depression include a question like “Have you been unable to do things you used to enjoy?”  Hell yes, but is that depression or exhaustion?  Who wants to take a 20 mile bike ride along the river on 3 hours of fitful sleep?

The upside is, you don’t need the expense and (depending upon where you live) legal issues of sitting around stoned. Care giving provides its own kind of burnt bliss. Pink Floyd provides some good mood music,

Comfortably Numb, am I? Or am I actually dealing with

OK, that’s all for now. Got to keep the loonies on the path.

The Blooming Idiots Anthem

Obviously, we use a yard scene as our masthead on this blog, and our upcoming book is called Blooming Idiots.  We draw examples from our amateur gardening efforts to express how care giving itself is a learn as you go, trial and error process. It goes better if we can laugh at ourselves and if we reach out for help, even (maybe especially) divine help.

In the course of daily prayers a traditional Christian hymn came up.  The last verse might have to be recognized as our Blooming Idiots anthem,

There’s not a plant or flower below, but makes Thy glories known,
And clouds arise, and tempests blow, by order from Thy throne;
While all that borrows life from Thee is ever in Thy care;
And everywhere that we can be, Thou, God art present there.

By the way, here’s a guy playing the hymn tune on an organ.  You can at least feel a bit churchy if you didn’t make it to church,