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.

Good for LEGO

The popular LEGO building block toy company just included a figure in a wheelchair.

Lego Wheelchair

Photo by Promobricks

The new character is intended to give a feeling of acceptance to children living with disabilities, according to this article.

I see other possibilities for children, grandchildren, siblings and other kids who interact with the special needs of family and friends.

Play is a great opportunity to give the typical, able bodied children imaginative insight into care giving.  LEGO play might be a child’s first recognition that a figure in a wheelchair needs wider access doors and ramps instead of stairs as block buildings snap together.

It is a chance for adult care givers to ask questions about how the LEGO figures interact in scenarios the children create, helping stimulate awareness of how special needs involve the entire family and the community beyond.

Good for LEGO for taking this step.

Eclipse(s)

Next week Melissa and I reach our 25th wedding anniversary. Yep, silver. Big milestone.

“Which day of the week is it?”

“Tuesday.”

“Oh, you’re home. What should we do?”

“Dunno. What would you like to do?”

“Well, Joey limits our options…”

It’s true. We can’t plan a big evening with the lad around, although in fairness we did get a respite person and some tickets to a concert the following week. And we are planning to have a clergy friend give us a blessing on the actual anniversary day.

But the reality of care giving is that it can eclipse aspects of life that would receive great attention under typical circumstances.

Siblings of special needs people sometimes gripe about getting shorted on attention from mom and dad.

Spouses put dreams off to the side and sometimes let them fade to black.

But all is not gloom and doom. Part of the eclipse factor is that we are absorbed with the possibility of Joey moving into a new residential setting (e.g. moving out) this summer. And with that comes what Melissa calls “this new season” when, perhaps, our life together comes out of shadow.

Eclipses happen. Some people read signs (always almost negative) into them, but they just happen. So it is with care giving. Yes, it changes things. It casts shadows (almost always frightening) over life. But shadows ultimately give way.

The light shines in the darkness, and the darkness has not overcome it. (John 1:5)

Love vs. Cooties (a thought for Lent)

There are all kinds of care givers. We are parents of a child living with autism. There are adult kids caring for a parent with Alzheimer’s, spouses caring for sick or disabled partners, and all kinds of other arrangements where folks are living a typical life one day and thrust into the world of medicine, therapy, advocacy, domestic labor and who-knows-what the next.

One of the frequent complaints I hear from care givers is the way that family and friends start to draw back from the situation. Some folks feel completely abandoned in their efforts to take care of a loved one. A few quotes from other care givers:

I have found that we have become more and more isolated as time goes on.

Maybe it’s too much to ask for somebody to just be there to listen or hold your hand or just exist in the same space…

I guess my question is why You’ve taken every single earthly, tangible aspect of faith from us? Church. Sacraments. Spiritual support. Friends. Family. You’ve given us both loneliness.

There used to be a similar complaint from divorced people, although the culture has changed so much I’m not sure if its’ still a reality. But over the years, I heard divorced people lament how friends, especially other married couples, floated away from them.

I think that we all share a human tendency to turn away from situations that scare us. There’s a primitive fear that another person’s dilemma is contagious, like cooties. Maybe the roots are some evolutionary impulse to separate from that which could introduce a defect into our gene pool. Maybe they are spiritual – we don’t want to stand too close to someone who seems to be suffering the wrath of the gods.

Whatever the source, a Bible passage I heard on Ash Wednesday reminded me that the real God wants us to overcome the fear and to love those is distress as though we are part of one another:

“Is not this the fast that I choose:
to loose the bonds of wickedness,
to undo the straps of the yoke,
to let the oppressed go free,
and to break every yoke?
Is it not to share your bread with the hungry
and bring the homeless poor into your house;
when you see the naked, to cover him,
and not to hide yourself from your own flesh?

(Isaiah 58:6-7 ESV)

That’s a tall order, to see someone else’s distress as a hurt to “my own flesh.” The passage puts it in the context of “fasting.” It is to starve my selfishness and fear of “cootification” in order to reach out and make another’s burden lighter in any way for which I am equipped. As that one care giver lamented in the quotes above, sometimes that’s as little as to “just be there to listen or hold your hand or just exist in the same space.”

That Ash Wednesday lesson went on to say that God blesses such love,

Then shall your light break forth like the dawn,
and your healing shall spring up speedily;
your righteousness shall go before you;
the glory of the LORD shall be your rear guard.
Then you shall call, and the LORD will answer;
you shall cry, and he will say, ‘Here I am.’

(Isaiah 58:8-9 ESV)

I pray that God’s Spirit will cleanse fear from hearts and bring loving people alongside isolated care givers.

Families can be green concrete

That’s a weird title, I know. It looks like email spam nonsense.

The house in which I grew up had a backyard covered in – I kid you not – green concrete. It was some post WWII housing boom idea. You got the green color without the yard work.

We had this strange non-biosphere because my dad grew up subsistence farming. He wanted nothing more to do with “working the land.” It was the harsh labor of his orphan childhood, and even mowing the curbside grass bugged him. As soon as I was tall enough to push a mower (remember push mowers?), the job was mine.

My mom grew up in an immigrant community in Providence, Rhode Island. She had a bricks and concrete childhood, so she actually liked the idea of earth and plants. The parts of the yard not buried in green concrete became her gardens, and she did quite well with a variety of plants and flowering bushes.

The thought hit me today (I’m fighting a virus and that means a head full of strange and muddled thoughts) that my childhood backyard symbolizes what I hear from other caregivers about family and friends.

In so many cases, caregivers lament that family and friends back away from them. They won’t come help out with the house stuff; they won’t provide some respite time for the caregiver; they just won’t, won’t, won’t. The only thing they seem motivated to do is stay away.

Those folks are like the green concrete. They exist as family and friends in some inert way, their names sitting on Christmas card lists and their faces fixed flat in photo albums and such. But they cease to form a living connection to the caregiver and the people who need the care.

I get it, I think. There’s a fear factor, like my dad’s about lawns. You let it get started just a little, and you’re sucked in for good. Family and friends see the stinkiness of care giving, and they want to keep safe distance. And the safe distance gets safer and more distant over time. The connections of dirt and water and roots and grass give way to green concrete.

I hear a few examples – and they are the minority – of family and friends who are more like my mom in her garden. These folks are drawn to dig in. Helping out with care giving enlivens them. They feel a sense of satisfaction from helping out, like planting seeds and watching flowers bloom over time.

OK, so that thought came and went. Think I’ll hit the DayQuil again and take a break.

Before I go, I’ll note that I was back in L.A. a couple of years ago and went by the house where I grew up. The green concrete was gone – in fact, it had just been broken up and the backyard was naked dirt, ready for real grass or a swimming pool or something, anything else to arrive. I didn’t feel any sense of loss – more of a chuckle and a “God bless you” on the new owners.

Oh, and one more thought. Families, I guess, are less about blood than about valuing and sharing important stuff, like Jesus says here:

And his mother and his brothers came, and standing outside they sent to him and called him. And a crowd was sitting around him, and they said to him, “Your mother and your brothers are outside, seeking you.” And he answered them, “Who are my mother and my brothers?” And looking about at those who sat around him, he said, “Here are my mother and my brothers! For whoever does the will of God, he is my brother and sister and mother.” (Mark 3:31-35)

Not so fast on that “Out with the old”

“Out with the old, in with the new.”

Flipping a calendar from 2014-2015 and expecting change is, on the one hand, realistic, since little to nothing of this world is permanent.

On the other hand, there’s a superstitious dimension to our thinking.  “Ah-HAH!  A new digit is showing on the calendar, therefore stuff has to get better.”  I had to laugh – actually, I had to switch stations – as a news broadcast on my car radio gave time to an astrologer to opine on what the stars were telling her about 2015.

Life is like a game of hot potato, with our own choices, actions, external events and forces beyond our control all flipping our reality around.  We certainly shape a big chunk of our own circumstances, but after a couple of decades of dealing with autism  I’m not one of those people like mass murderer Timothy McVeigh, who before his execution invoked that creepy pagan “I am the captain of my soul” poem.

The truth?  Some stuff – plenty of stuff – is securely in my hands, and plenty more is hurtling toward me from a blind spot.

The ambiguity of life is palpable right now.  2015 brings Joey’s 21st birthday, which sets up his move into a group home.  Melissa and I have looked toward this – sometimes with “Are we there, yet?” desperation – for years.  But we also imagine looking across the hall from our bedroom to his and seeing it empty.  That’s going to be “different,” to use an empty word for some emotion we’d rather not feel at the moment.

We just had our last in-home meeting with a wonderful case worker from the community agency that serves Joey so well.  A cast of supportive characters in whom we are confident and with whom we are comfortable will be changing with Joey’s next steps in life.  I’m sure the new team will be great, too.  But the change doesn’t inspire “out with the old, in with the new” noisemakers and party hats.

Our older son and his wife (Tim and Carly – I never seem to name them in these blog things) have been in for Christmas and New Year’s.  We’ve delighted in the time with them.  Tomorrow they fly back to their home and near-future in Charleston, SC, and we won’t see them again for months – maybe not until this time a year away – depending upon the hot potato match between what we do and what life throws at us. The new intervals between visits stand to lengthen now that they are married, graduated and working.  So some of “the old” was a plus sign and “the new” might be dangling a minus at us.  Flipping a calendar page is symbolic of that, but not decisive to how the equation works out.

Anyway, enough New Year’s Day musings.  We pray that the One who holds past, present and future together brings you blessings, most of all the inner peace that comes from knowing Him as the undefeated champion of hot potato:

No, in all these things we are more than conquerors through him who loved us. For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord. (Romans 8:37-39 ESV)

Sleep in heavenly peace

Joey Christmas Tree Nap 2014

He’s not easy to see back there in the shadows on the black love seat.

But that’s Joey on the Saturday before Christmas, enjoying his day off with a snooze.

A bit before that, he’d been bugging Melissa in one of his, “Hey, I’m not in a good mood so do something” routines, with a distressed face, invasion of her personal space, grabbing and tugging of her hand but no words to give her some idea of what to do.

But she read his mind.  “Do you want dad to turn on the Christmas Tree lights?”

I have them on a timer that leaves them off most of the day.  But with it cloudy and wintry outside, I was fine flicking the override switch and letting the tree glow.

Sure enough, that’s what he wanted.  He took over the love seat (no good deed goes unpunished, so he crowded Melissa off).  He stared at the tree for a good, long while.  We got on with other things until I noticed him nestled in for a nap and took the picture.

There are the challenges that people with special needs bring to the holidays, as this dad points out.  The other side is that people with special needs often enjoy simple things, like tree lights in a dark, quiet room. They won’t be miffed if they don’t get a pile of disposable, dust catching crud wrapped up under the tree.  They won’t calculate how much you spent as a measure of love and they won’t hold some perceived slight against you for the next ten holidays.

A couple of requested videos will show up under the tree for Joey (right before we’re ready to open ’em on Christmas morning – otherwise he’ll open ALL the presents to find the one or two that are his).  Meanwhile, he’s been enjoying the glow of the tree and our snuggling together each evening for a bit of the Advent calendar (each day has a mini-book about an event leading up to Jesus’ birth).  He’s especially happy to have his brother and sister-in-law here for Christmas.  He even vocalized anticipation of that – “Tim will be here soon.”  He gets Christmas way better than a lot of people.

We wish all of you a Merry Christmas.

That time I called the cops – on myself.

Hard memories and emotional impressions came up when I saw this video:

Our son, also a Joey, stopped having meltdowns quite awhile ago. Medication was a big part of that. We’ve eased him off of several meds over the years, but we maintain a dose for aggression control, just in case. Age mellows some of this stuff as well, at least for some kids. We think that’s true of Joey, but we’re not getting rid of the med just the same.

During one terrible explosion of his frustration, it took my wife, our older son and me to pin Joey down and calm him. We were slapped, kicked, scratched and bit in the process.

Another time, Joey lost it because a computer froze. He attacked me with a knotted rope dog toy.

There are also plenty of tales of broken property. He seemed to have a knack for destroying keepsakes when angry.

Anyway, my mind is starting to flood with these ugly memories. As I relate one, others come rushing in. I can feel my breathing change and muscles tensing as I type this. So let me just get to the one I most want to share and then I’ll stop.

A few years ago, Joey had one of his sleepless nights. He still has these, but I’ve downgraded them from menacing to just annoying. He turns on lights and sits up watching movies these days, but a few years ago he would wake up agitated and pound around the house, repeat phrases with great distress in his voice, burst into our bedroom to ask repetitive questions, beat on his chest with an open hand, clap his hands (which in the dead of night hits the ears like a rifle’s report), and generally raise hell.

Melissa and I would take turns staying up with him, although it wasn’t like the partner who stayed in bed got much sleep.

During this particular night, it was my turn to get up. I tried to calm Joey, to connect with him around the things he was saying over and over, to do something, anything, to stop the din of noise and emotion.

Somewhere in the wee hours, my focus shifted. I forgot about helping Joey. I just got angry.

Not a surprise, really. The late actor James Gandolfini advised a group of drama students that one way to prepare to play an angry character or scene is to deprive yourself of sleep. The anger will be plenty authentic when the camera rolls.

I couldn’t yell – I had enough presence of mind to avoid terrifying Melissa out of what little, ragged sleep she might have been getting.

The anger that couldn’t come out in words and volume started flooding my body. I was on the verge of my own meltdown. I perceived Joey as malevolent, as purposely tormenting me.

I was going to slug him.

I think I prayed, not out loud but deep down inside myself. By God’s grace, I went for the phone instead of after Joey. I called 911. I don’t remember what I said, except I got across that I was losing control of a situation at my house and it was heading for violence.

Two Sioux Falls Police officers showed up. I don’t remember what we said to one another. They were quiet enough that Melissa didn’t wake up. The were calm and courteous.

I sat on the couch, eventually fighting a desire to cry instead of a rage to attack. They stuck around – I don’t know how long – until they were sure that things were calm enough for them to leave. Joey finally went back to bed. I sat on the couch in the dark for a long time.

That’s the story. I don’t know why I’m moved to share it except in the hope that someone who reads it will, if in a similar situation, make the choice to call for help. To call for the spouse in the next room like in that video, or to call for first responders like I did. Don’t be ashamed. We all have limits and we all have times, great and small, where we need help.

In my distress I called upon the LORD;
to my God I cried for help.
From his temple he heard my voice,
and my cry to him reached his ears.
(Psalm 18:6 ESV)

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:

IMG_20140802_125010_130

$5.50 at the local market.

Oh, and he needed these:

IMG_20140802_125028_731

$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.

Small steps…

The anniversary of the first moon landing came and went again, with that epic fast food drive up sound of Neil Armstrong’s great quote,

On the Fountain family planet, we had some steps small and great.

Ensign TimOur older son completed the big step of graduating from US Navy Officer Development School.

As you can see, Melissa and I were able to fly out to the East Coast for that (well, you can see Melissa – just imagine me holding the camera, OK?)

In another step, seemingly small but maybe a whopper, the trip was possible because Joey spent three (count ’em, 3) nights in a respite apartment.

Yes, it would have been a bigger step for Joey to go to this big event in his brother’s life. Except that Joey is a good traveler and a lousy “arriver.” He likes long car trips and airplane rides, but he hates hotels and as soon as we reach a destination, he’s saying “Go back to Joey’s house.”

So the next best thing is for him to be in a good place that allows the rest of the family to take some steps together, and this happened.

It was his longest overnight stay to date, and he came out of it his happy self instead of disoriented or agitated like after other overnights he’s had.

The staff kept him involved in fun activities. He made it to Sioux Falls’ big annual Jazz Fest.

He went to the movies, and was able to tell me that he saw Disney’s Frozen.

He went out to eat, and was able to tell me that he went to Burger King. He also echoed a debate that he appeared to lose about the fast food choice, imitating a staff member saying “We went to Taco John’s last time” over and over. I guess that’s a better way to process defeat than hitting people or breaking things, or even going around in a mood.

So, several days of “steps.” Pretty much all of them good, no matter how big or little.