At the gas station

I was filling up my car the other day, and decided to go into the convenience store to get a bottle of water.

A young Black woman was coming up at the same time.  I held the door and let her go in first, which is what I would do for anyone.  

She gave me a strange look.  Her eyes looked almost angry, but that wasn’t quite what she was giving off.  Being a take-the-weight-of-the-world-on-my-shoulders-kind-of-guy (what caregiver isn’t?), I wondered what I’d done to offend her.

So I’m over at the cooler debating brand and volume of bottled water, and she walks up to me, still with a rather serious face, and hugs me.  Then her face softened into a smile and she left.

All I can figure is that an old White guy holding the door for her was an unexpected courtesy.  American Blacks are a tiny part of the populace here in Sioux Falls; we do have a significant population of recent African immigrants from various countries.  Either way, she’s probably felt like a fish out of water, and maybe been on the bad end of some hot insults or colder but just as hurtful gestures of annoyance or disrespect.

What’s it have to do with care giving?

Caregivers and the people in our care are the ones who block the supermarket aisle with our contraptions or behavioral havoc.

We are the ones bringing embarrassing noise or antics to your restaurant dining experience.

We’re the ones who look just fine but get ahead of you in line at Disneyland.

Some of you say stuff – on a trip to Disneyland we got a “So what’s wrong with him?” about our son – others of you just snort or roll your eyes or look daggers at us.

And some of you hold doors, or smile, or say an encouraging word.

Can’t promise to stop and hug all of you in the latter group, but you do change the emotional course of a day.

Thank you and ((( ))) <— (I think that’s a sign for hugs… forgive me if it’s an obscenity or something.  I’m old.)

 

Wild Kingdom

Here’s how Merriam-Webster describes a natural phenomenon that takes place in our house:

symbiosis

The incredible bit of animal behavior went unrecorded.  Using our formidable research skills, we were able to reconstruct the event from evidence.  And a good guess.  And stuff.

Here’s the story:

We had these cookies the Joey really liked, but if he got into them, he would eat the entire package.  

In an effort to ration the cookies, we put them up on a shelf beyond Joey’s reach.

This worked for a good while.

Then one day, I reached up for the cookies only to find the package empty.  It was in its place up on the high shelf.  It wasn’t just empty – there weren’t even crumbs.  Not in the empty package, not on the shelf, not on the counter below or on the floor.

How did Joey perpetrate this?

Well, he didn’t.  Not alone.  There was symbiosis.

Joey grew enough to reach the shelf.  So the cookies ceased to be out of reach, and Joey helped himself.

But he’s not a neat eater.  How to explain the clean scene?  Who or what cleaned up the crumbs?

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There was another species sharing Joey’s environment.  It had the natural capacity to clean up dropped food, even crumbs.

Although I never saw them pulling off a cookie hunt together, I did manage to capture this photo of them in close proximity in the wild.  It was not easy to get this photo, because Joey normally ignores the other species.  People with autism can go either direction; some are drawn to animals and some remain aloof from them.  

Joey, being the more highly evolved species, showed a preference for social order and control of his environment by returning the empty package to its place on the high shelf.

At least that’s my assumption.  I can’t come up with a hypothesis that would explain the dog doing that.

I have observed her stealing some chocolate covered cherries that Melissa gave me on a holiday.  And she left the wrapper on the floor.

 

 

 

Balancing Act

A friend who is an ordained minister shared this intriguing article, in which a pastor wonders about how to baptize an autistic teenager,

“…one of the requirements we have at our church is that everyone who is being baptized will give a short verbal confession of faith in the baptistry as to his or her faith in Christ and salvation experience. But here’s my problem: We have a severely autistic teenager in our congregation who isn’t comfortable talking very much at all and is certainly not comfortable talking to people who are not his parents. He communicates mostly with his parents via iPad. And so how do we interview him for baptism?”

The theological question parallels a very human question asked by caregivers: how do I balance my acceptance of someone who is “different” with expectations that he/she learn and practice typical behaviors?

wallenda-walk-over-the-fallsIn Christian thinking, the baptism balancing act is always “How much do we rely on the grace of God, giving someone eternal life as a gift, and how much on the response of that person, showing that God’s gift has been received?”  As you can imagine, that’s been worth centuries of controversy.  It is behind the differences between churches that will and won’t baptize infants, for example.

Same goes for care giving.  To what extent is a “good job” identified by a loving, supportive environment, or by results in terms of a life showing “normal” skills and achievements?  What’s the balance?  

In our case, our best results have been over on the love and acceptance side.  Even medical professionals have praised us for that contribution to Joey’s life.  But he’s definitely lagging in life skills.  Some of that is autism; but it is compounded by a very human stubborn streak and dislike for “work” (which Joey seems to define as any task involving more than two steps or about ten seconds.)

Balance is, of course, about giving some weight to both sides of an issue.  It means that the reality includes both.  But balance is always a state of tension, not perfection.  Which to my mind adds just a bit more weight to the need for qualities like acceptance, grace and love.

Turning another corner

Road_Sign_Left_Turn

A letter came from our local school district last week. It notified us that Joey’s three year IEP (Individualized Educational Program) meeting will be due in October.

But this one included a waiver form. Since Joey will turn 21 in February and age out of the school system in June of the coming year, the district’s assessment is that the meeting need not take place, and can be waived with our consent.

We didn’t have to think about it. We signed the waiver and, as if a sign from the heavens, the mail man was pulling up to our box just then and I was able to send it post haste.

If you read caregiver blogs, or teacher blogs, or if you know caregivers or teachers, you know that IEPs are, at best, regarded like tax time. In many cases, they are dreaded as venues for marginally productive conflict.

Both “sides” (and this is what the process can create) have valid horror stories to relate. Parents see achingly necessary services denied to their child; educators see requests for a treasure chest of exotic resources.

We are just relieved to be done with that part of Joey’s life. We’ve had good things come out of his years in public education, and certainly many great people who cared about him and blessed his life; we’ve also had our share of frustrations and bureaucratically denied opportunities that have set him back.

At any rate, we are turning into a new chapter of his life, with less of the adversarial stuff.

As Melissa posted on Facebook,

I learned today that there will be no more IEPs. Ever. If you know what this means, CHEERS!

Joey and the death of Robin Williams

The breaking TV news about the suicide of Robin Williams stopped Melissa and me in mid-conversation. It just shut us up and made us sad. At least one newscaster looked like she’d been in tears.

Over dinner as a family, as Joey downed two big Jimmy John’s tuna subs, we realized that we would not have to explain this to him. I thought I should say something (boy, how many disasters start that way), but thank God I refrained.

Joey loves Mrs. Doubtfire and Disney’s Aladdin, and he knows that Robin Williams is the star of those flicks, because the previews say so and Joey repeats what they say as Gospel truth.

One of the strange blessings of his autism is that Joey will not be part of generalized human sorrow. As long as he has TV, video, DVD, YouTube or whatever technology comes along, he’ll have Robin Williams. He has no reference points to comprehend “That face you see and voice you hear isn’t with us anymore.”

Cold, clinical explanations are clear that autistic people tend to lack empathy. So, Joey won’t be moved to grief (or, for that matter, anger or any other strong feeling) by the news of the day.

In some ways, that can be reinterpreted as a blessing. He won’t live in fear of Ebola or whatever the news says he should fear. He won’t be whipped into a frenzy against any particular group of people.

I’m rambling, I know. No deep conclusions in this – just some observations. And I’m glad I shut up and just observed and didn’t fill the dinner conversation with useless words. And I’m glad that Joey isn’t twisted this way and that by all of the stuff that twists the rest of us.

#FirstWorldProblems

It’s been hard to blog of late. Things at home are well, but horrors in the world out there are mesmerizing.

One of my favorite Twitter hashtags is the title of this short post. It’s used when describing the way so many of us, in our reality of relative peace and prosperity, go ballistic over stuff like waiting at a long red light.

As I watch the scenes from more than one country, seeing the normal things of life (and even life itself) blown up, it becomes hard to sit down and tap out my “struggles” as a caregiver.

I’m not saying, “Oh, well, could be worse.” (If you want to have a caregiver unfriend or possibly kill you, try saying that one.) I’m just relearning the art of counting blessings.

Thankful that medical, community and educational infrastructures, with all of their flaws, limits and costs, are intact here instead of bombed to rubble.

Thankful that the Paratransit bus, for which Joey and I must wait anywhere from 10 minutes before to 45 minutes after his scheduled pick up time, comes to get him at a nominal cost every day, instead of having to run into the desert or up a mountain because a mob wants to kill us.

Thankful that the supermarkets are open any which way I drive, forcing me to decide which one to pick and then what items to select from a multitude of 24/7 choices, instead of waiting for relief planes to drop supplies from the sky.

Thankful that there are no leftovers because Joey ate all the hot dogs I grilled out on our deck, instead of having to eat prepacked food in a bomb shelter or a refugee camp.

Thankful that we have bottled water by the case in case we don’t like drinking the always available tap water, instead of watching one another die of thirst.

Thankful that Joey can get up in the middle of the night and turn on his computer or movie screen, and that the light doesn’t attract a death squad or missile strike.

Caregivers get tapped out physically, spiritually and emotionally. But with whatever drops are left in the tank, lets be sure to pray for those for whom our #FirstWorldProblems would be significant upgrades.

Autism

A prayer blog posted this simple offering for people living with autism. It’s formed from an ancient blessing – Adonai is Biblical Hebrew for “Lord.” Grateful for this thoughtful effort.

Lent & Beyond

Numbers 6:24-26 Complete Jewish Bible
‘Y’varekh’kha Adonai v’yishmerekha.
[May Adonai bless you and keep you.]
Ya’er Adonai panav eleikha vichunekka.
[May Adonai make his face shine on you and show you his favor.]
Yissa Adonai panav eleikha v’yasem l’kha shalom.
[May Adonai lift up his face toward you and give you peace.]’

O Lord, may it be so for Your children with autism, especially ______.

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The Incredible Lightness of Being… Joey

He’s light work, really, autism and all.

We’ve chronicled plenty of the demands and challenges of raising a son with autism, but let me take a moment to speak up for some of the gentle offsets.

It’s Saturday. What’s 20-year-old Joey want? Keys to the car? A car of his own? Money to spend on a girlfriend? The latest evolution of handheld gadgetry?

No. His one request is this:

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$5.50 at the local market.

Oh, and he needed these:

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$29 at Payless. The ones he’d worn for the last few years were starting to come apart. We noticed that. He didn’t bring it up.

He never brings up clothes. We have to notice when stuff is threadbare or doesn’t fit.

Now, in all fairness, his older brother (not a person with autism) was very frugal and waaay easy as kids go. Sure, he’d say, “Hey, I need new jeans,” but that meant he’d outgrown the old ones that he’d worn as long as he could. (IOW, he would never be one to say, “Hey, I need this cool thing everybody else has.”) So his character made him incredibly light given the horror stories others tell about teenagers.

The other incredible lightness of Joey is that he’s going to eat that whole pizza. And stay hovering around 130 lbs. That’s just cosmic injustice.