Here a Friend, There a Happiness

Caregivers are “Blooming Idiots” who tend and nurture while being sliced and diced by thorns. Beauty grows no other way.

Raising 5 Kids With Disabilities and Remaining Sane Blog

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My daughter, Marie, was severely abused as a toddler and young child. She came to live with us at the age of 7 after being found wandering the streets barefoot at 2 am carrying her infant brother looking for formula for him. The effects of the abuse were immediately apparent. She couldn’t stand to be touched, and would cower under the table if she felt threatened. She was angry all of the time and refused all attempts at affection. (When she was with us for a few years, she finally allowed me to give her a “fist bump” as a way of showing my love for her, a love she certainly did not reciprocate because she didn’t know what love was.)

Posttraumatic stress episodes were explosive and frequent, and required restraints and hospitalization. She had superhuman strength while in the throws of PTSD, as I am sure the EMTs and…

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The Earth is a Mother –

Yes, I mean that in the most hyphenated way.  But a happy (is that the greeting?) Earth Day just the same.

It is a lovely spring day where we live.  High 60s, sunny and no wind.  It is pure pleasure to step outside, feel the sun, walk barefoot in shaggy green grass and breathe in fresh air.

At the same time, another denizen of nature, a virus, is playing in my respiratory system.  It’s making the simplest things miserable.

I suspect that our son’s autism is another gift from Mother Earth.  We took part in a major University of California study that found no single causal factor for autism.  It isn’t a result of this or that human disharmony with the planet – it’s just something that occurs as part of what this world is and does.  We don’t really create all of the problems, anymore than we can exert 100% control over them.

So, I was waiting for the bus with the kid this April morning, hacking and snorting with my virus while he sought to engage me in a discussion of what he wants for Christmas.  The virus and the cadences of autism sent me into one of those mental zones where humor is the only escape, and I got the giggles over a chant that some neo-hippies used to do at a summer camp where I counseled.  It was supposed to be Native American but I think it was really a White suburban hippie creation and, because of its repetitive composition, possibly autistic:

The Earth is our Mother…  The Earth is our Mother…

So I chuckled as that coursed through my virus impaired senses and the kid prattled on about VHS for Christmas.  And of course I amused myself by altering the chant to the title of this post, The Earth is a Mother – …  The Earth is a Mother -…

20160422_143727The Earth is full of good and beautiful gifts, an amazing and delicate array of factors that make our lives possible, sustainable and pleasurable.  But it is also full of indifferent and maybe even evil stuff that would just as soon see us dead.  In fact, it is part of Earthly life to wither and die.

The weeds grow alongside the pretty bushes and flowers and cushy grass.  Care giving is a prolonged exercise in nurturing life while weeds spring up.  It takes the romance out of things, because happy illusions get overgrown by reality.

Some days the challenges bring out the devil in me.  In other moments, the Earth being a Mother- puts me in touch with a love that gets me out of my little self and, for a bit, into a place of peace and joy,

Yet my wings were not meant for such a flight –

Except that then my mind was struck by lightning

Through which my longing was at last fulfilled.

Here powers failed my high imagination:

But by now my desire and will were turned,

Like a balanced wheel rotated evenly,

By the love that moves the sun and the other stars

(Dante, Paradiso XXXIII)

Better than “Rain Man”

Review: A Father’s Prayer by Linda Wood Rondeau.

While the movie Rain Man helped generate popular interest in people with autism, it has some downsides.

For one, the person with autism portrayed by Dustin Hoffman is a savant.  He has off the charts ability in some aspects of math.  Many care givers will confess to the urge to kill when responding to something like, “Your kid has autism?  Wow!  What’s his special ability?”

The other blind spot in the movie is care giving.  Most people with autism don’t have Tom Cruise showing up to take them on a road trip to Las Vegas.  They live with ever-more-frazzled schlubs who give up on travel, romance, looking good and other such amenities altogether.

So it was a pleasant surprise to step out of my niche (Tim the middle aged male) and read a book marketed as women’s and/or romantic fiction.

A Father’s Prayer has its Cruise like character in the form of a Country/Western singing star who is the long absent father of a young guy with autism.  But Linda Wood Rondeau does a great job emphasizing the humanity rather than the celebrity, especially through the down to earth awkwardness of their redeveloped relationship.

The boy with autism is not a savant.  He is a more typical example of the sensory, cognitive, social and behavioral challenges (and, in a nice touch of realism , enjoyments) of most people living with autism.

Even better is the portrayal of the primary care giver, the boy’s adult sister who has to function much like a single mother.  Care givers will bond with her instantly as she struggles with the well described challenges of autism, “the system,” and her own demons (which are not over the top but the kind that can afflict any of us).  As a care giver, I found my emotions engaged by so many of the little touches of reality in this story.  There’s the struggle to not wear out the one good sitter you have as appointments pile up and you try to develop a social life; the blessing of a caring employer’s flexibility coupled with the fear of stretching it too far; the sneaky onset of sensitivity to others’ judgments and criticisms of your care giving efforts.

The author has a background in social service and so the interactions of characters in “the system” are realistically stressful without casting any as villains.  The challenges and misunderstandings are all there but so is the humanity of each person involved.

The romantic content (I know, I’m risking my man card on this) is warmly humane.  The threats to a budding love interest are not melodramatic plot twists, but the believable personal glitches that tend to pull people into their own shells.  There’s sensual attraction that doesn’t take the cheap route into soft porn, and there’s there’s the giddy fun of knowing that the other person is feeling what you feel.  Rondeau conveys all of this in good balance via a catchy story.

A good novel for pleasure reading and maybe even a gift to someone you hope will better understand more of special needs households and care giving.

I wish I were a mushroom

Ever heard that mushroom joke about businesses or government?  How is (Company X) (the Government) like raising mushrooms?  They keep the (employees)(citizens) in the dark and bury them in bulls**t.

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Way too serene to be caregivers.

I googled and, yes, it appears that mushrooms like the dark.  Horsesh**t is more technically correct than BS for the fertilizer.  I’ll leave the business and government factors to your judgement.

I bring this up because the caregivers who blog at Not the Former Things are talking about the sleep deprivation visited upon them by their child with autism:

Studies have suggested that nearly 80% of children with autism have sleep problems. This means that 80% of parents with children on the autism spectrum also have sleep problems. It is a very real, very present reality for many of us.

And, in my experience, one that most doctors and therapists cannot really identify with. “Make sure you cut out any sugar and electronics for at least three hours before bedtime,” was the constant recommendation when my son was younger. It was infuriating. We had been doing that for years, with absolutely no effect.

Sleeping for very short periods of time, only to be wakened again and again is used as torture in some countries. I for one, would like to say I understand why.

We went through this with our son (still do on blessedly less frequent nights.)  There were a few years of his childhood in which we never had a full nights sleep.  The memories of these do not mellow into funny stories and laughs.  As the other bloggers wrote, such sleep deprivation is a form of torture and a horror to remember.

Speaking just for me (Tim), I crave mushroom nurturing darkness when I sleep.  Lights, even soft ones, agitate me.  I think that’s a holdover from Joey’s younger days – lights going on meant Melissa or I getting up to keep the boy and our property out of danger.

Caregivers catch more than their share of horse manure.  Like mushrooms, we don’t have much say.  But we envy the ‘shrooms when it comes to their indulgence in darkness.  We’d sure like more of that, at least in the wee hours.