Reading while waiting

clock

Pic from here.

On this end, we’re still waiting on a new meeting date to get our son’s residential placement going.

This morning while waiting for the bus to his day program, I ran into a young woman’s blog piece about living with her brother and his autism.

What she describes gave me a brief shiver of memory.  We endured some of this stuff for years.  Yes, our son has come a long way; no, that doesn’t erase the gut reaction when reading

First of all, nobody truly recognises how tough it is merely to care for someone who needs assistance with everything. Stephen is 6 ft. 2 and has to be bathed, washed and nappies changed. Physically, and mentally, it is downright exhausting. His sleep schedule is non-existent and his meltdowns are unpredictable. His self-harming happens unexpectedly and can last for indeterminate amounts of time. These are the children you don’t see in autism awareness adverts; headbutting walls, smacking their heads, nipping and biting and scratching. It is the most draining thing to devote hours upon hours simply trying to prevent someone from hitting themselves, and a task that seems so stupid and meaningless in nature when you know that, come a few hours’ time, it will simply happen again.

And the decades between the young woman and our aging (aged?) selves evaporate as she describes our common worry,

I am 19; I should spend my days fretting about having enough money to go out at the weekend and passing exams to get my degree. My biggest fear about the future should be whether I’m going to achieve my dream job, what countries I will travel to. Instead, I worry about what will become of my brother. He understands nothing of pain and manipulation and danger. My brother is so bearing on the spectrum that he needs round the clock care, and when I am the only one left to do that, how will I cope?

OK, back to waiting.

Loneliness

Just caught some stats from across the pond,

  • Research by Sense has shown that up to 50% of disabled people will be lonely on any given day…
  • A report by Carers UK revealed that 8 out of 10 carers have felt lonely or isolated as a result of looking after a loved one.

That’s right, half of people with special needs experience loneliness in the course of a day.  But on top of that, 80% of those who care for them feel lonely or isolated – and care giving is cited as the source of the emotion.

We get that here.  Care giving wipes out spontaneity, for one thing.  A friend calls and says, “Hey, wanna go down to the bar and watch the game?” and all you can say is “I can’t” or, at best, “Well, I can watch the first quarter but then have to get home.”

Social life withers because the needs of the people in our care keep us pinned down with tasks or plain old being “on watch, just in case.”

When some neighbors invited us to join them around a fire pit on a cool evening, Melissa and I had to take turns. One of us stayed in to watch our son, the other socialized, then we switched. We couldn’t have fun as a couple.

And many folks are uncomfortable coming into a care giving environment, and friends or family who are willing can come only so often without being turned into exhausted, lonely care givers themselves.

Tony Gaines Starz

Tim (right) and his lifetime pal.

We just enjoyed a great weekend.  A childhood friend (of Tim’s) and his wife spent two days here as part of their drive around America.  They didn’t ask much of us – in fact, they were clear that they wanted to see us, not go sightseeing around Sioux Falls.

So we relaxed and shared great memories and ate and laughed and talked about what was on our hearts and minds and… were anything but lonely.  It was wonderful.

Melissa StarzOur son with autism, Joey, was his usual self, staying on the periphery until he was comfortable with the strangers.  You can see the “I’m not sure about this” posture in this picture.  But notice that he’s not detached – he’s looking right into the camera (eye contact is elusive when autism is in the house).  Melissa (middle) is obviously not feeling lonely, stressed or like a caregiver for the moment.  (Note: being a caregiver doesn’t mean you can’t be cute, too.)

The point is that any and all of you who know families in care giving mode – and by that I don’t mean just with autism, but Alzheimer’s, chronic illness, aged parents, disability and just about any situation that can confine one person and others to provide care – have great power to intrude on loneliness and isolation.

YOU are a gift.  Yeah, it’s great when a neighbor clears my driveway in winter.  That saves me some stress and strain.  But even greater is time to laugh and talk and BS about stuff.  All of that human social glue that care giving dries up, you can spill afresh by your time with caregivers and those in our care.

And don’t forget the goatherds.  They get lonely, too.

 

ALLIES. Find ’em.

Just got another kind review of Raising a Child With Autism on Amazon:

This is a book you pick up and don’t want to put it down until you’ve read it all they way through front to back. As a mother of a 22 year old daughter with Down syndrome I could relate on so many different levels. It gave me peace to reaffirm my belief I am not in this experience alone, my Creator is with my daughter and I every step of the way. Highly recommend the book, bought 4 to give to friends/colleagues.

It’s a book for all kinds of family caregivers.  Yes, autism looms large because that loved one in our care is a person (now 23 years old) with autism.  But as the reviewer notes, there’s value in shared insight and encouragement across “conditions.”

Triumph_Allied_Forces

Heck, get a Canadian power trio to help if you can!!!

We need all kinds of allies.  As we say at the top of this blog, Don’t be alone… The person who reviewed this book in one short paragraph notes family, friends and colleagues.  We need to build up those relationships, in person, in print, on the internet, wherever we can.  The support flows both ways, ultimately.

Here’s another call to build supportive bonds for care giving, from an adult child caring for her parents,

As a primary caregiver for my parents and other family members, I’ve found that I need different kinds of assistance. Some people help me with direct, hands-on care — assisting Dad with things like eating, getting out of the house or personal care such as bathing and toileting. But I also need help with hands-off care: dealing with paperwork, grocery shopping, cleaning the house or making phone calls and appointments… 

…When I feel alone as a caregiver, I take an inventory of our team of family and friends who feel like family and realize how much backup I really have. The keys: Don’t be afraid to ask, and think imaginatively about how caregiving can become more of a group effort. You’ll be surprised how many people are willing to help when the job is right for them.

Worthless and weak

I whined about Mother Nature last night, so I guess I can do the same about God the Father this morning.

Care givers have ample experience with unanswered prayer. Prayer that the diagnosis be wrong; prayer that the condition go away; prayer for resources that don’t come; prayer to “do it right” and fix everything that needs fixin’.

OK, sometimes the prayers are answered. But the great mystery is that so much of what’s good, true and beautiful comes when we are rebuffed,

Three different times I begged the Lord to take it away. Each time he said, “My grace is all you need. My power works best in weakness.” So now I am glad to boast about my weaknesses, so that the power of Christ can work through me. That’s why I take pleasure in my weaknesses, and in the insults, hardships, persecutions, and troubles that I suffer for Christ. For when I am weak, then I am strong. 2 Corinthians 12:8-10, NLT

So up and at another day, friends. Let’s affirm the reality together, and let the power flow…

What day is it?

No, it’s not hump day, just Tuesday as I’m typing this.

For most folks Wednesday is the celebration of starting downhill toward the weekend.

But for caregivers this can work in reverse. Folks who take care of kids with special needs take our breaks on weekdays when schools and community programs are in session; the weekend provokes anxiety. And the closer it gets the higher the anxiety rises.

People with autism, like our son Joey, like structure and familiarity. Day programs in classrooms or work spaces provide precisely that. The weekend interrupts it. It is no surprise that Joey’s seizures, which are blessedly few and far between these days, tend to break through on the weekend at home. Melissa had to be in-home EMT on Saturday when Joey pitched out of a chair with an intense seizure.

And of course this was a long weekend, what with the Memorial Day holiday to further disorient and agitate both Joey and his caregivers (Melissa and me).

He did, at least, enjoy my grilled hot dogs and brats, of which he ate five. With buns.

Yeah, that hump day thing isn’t as happy for us as it is for most.

Note: I still don’t know why the video refused to embed in the post prior to this one. Well worth watching if you click on the embed code that’s spilled all over the page.

Have you seen this man?

Soooooooo…

We went to a wedding over the weekend.  All three of us – our son with autism included.

There was much in our favor.  The couple came from an extended family of friends that our son, Joey,  knows and enjoys.  The atmosphere was happy earthy rather than formal and uptight.  The weather featured a few of the rationed really-nice-days allocated to South Dakota every year.  And there was food to be downed.

As I shared earlier, the rehearsal went really well for our whole family.  And we were going back to the same place with the same folks for the wedding and reception.

Something changed.

Maybe it was the volume of the music in the reception hall.  Maybe it was the bigger crowd of people.  Whatever it was, it brought out Joey’s “best.”

5118Here’s a surveillance photo of the suspect.  Notice that the look isn’t very happy.  That little bucket was full of chex mix for snacking – he pulled it to himself, spilling some and playing tug-o-war with us as we tried to retrieve it.  Calm words about “sharing” failed.  Then he ate all the chex out of the mix and left us with just the pretzel bits.

What you might not be able to tell from this pic is that he’s not in a chair.  He’s on his knees on the floor.  We tried to coax him into a chair but that agitated him.

Then he scooted on his knees out into the middle aisle of the reception hall – just as the wedding party was set to make its entrance.

Joey’s figured out that he’s big enough to physically resist mom, so I had to hunker down on the floor and drag him just enough to clear the aisle until the wedding party made it through.

Then he stood up and started walking around in front of the head table, which of course was when people wanted to be taking pictures of the couple and their gorgeous bridesmaids and groomsmen.

I managed to stay just calm enough to convince Joey that he didn’t have to sit if he went and stood by the windows along the wall.

The long and short of it is that Melissa and I enjoyed our friends’ wedding very much, we all had a nice dinner and drinks (several drinks in reaction to Joey) and then came home and collapsed.

Care giving is a game of home court advantage – you usually wind up losing on the road.

My picture of defiant Joey – actually the whole vibe of trying to handle him – reminded me of this recent movie scene:

 

 

Mother’s Day on the Horizon

Here are a couple of good piece by MOMS of kids (little and grown) with autism:

At The Mighty, check out 15 Things I Hear as the Parent of an Autistic Child – And My Responses.

Mothers of all children with special needs and autistic children likely hear a whole lot of different things throughout their journeys, so to make appropriate social conduct a bit clearer and more defined, below is a list of what I believe is better not to say…

donna reedAnd give a read to Shaunta Grimes’ Coffelicious blog, This is what it looks like to be a Gen-X mom with an Indigo Child who isn’t a child anymore.  (Strong language & content).

It’s so tempting to try to browbeat him into sleeping more. (I have no idea why it would work with a 23-year-old man when it didn’t work for a three-year-old baby.) I also find myself wanting to monitor his computer time, restrict him from drinking and unprotected sex, and refuse to let him get his own apartment because I can’t see how he’ll be able to manage paying his own bills.

It’s easy to forget that having autism doesn’t make him less of an adult with his own mind and the God-given right to make his own decisions. And mistakes.

Me?  I’ll try to get Joey to help me honor Melissa on Mother’s Day, all the while dealing with the reality that he expects any holiday to mean presents for him.

Only human

Just caught a short, brutally honest article from the perspective of caring for a person with dementia or Alzheimer’s.

In Caregivers Are Only Human, Rick Phelps writes,

frayed rope

Image from the linked article.

Everyone loses their temper once in a while. People say things to each other that they don’t mean under far less stressful situations. Caregivers are under an incredible amount of pressure, and they are not immune to letting their emotions get the best of them. Dementia adds yet another challenge to the mix.

There are several comments at the article that are worth reading as well.

In Raising a Child With Autism, I describe an ice storm that clobbered our town a few years ago.  The aftermath of that mess serves as an image for caregiver breakdown,

Sometimes physically, but more often emotionally, caregivers sag like ice-burdened trees. We wonder if our groaning means we’re bending with the effort or if it’s the prelude to falling down.

All relationships – not just care giving situations – can take us to our limits and show us at our worst.  As author Anne Kennedy reminds us with a recurring chapter heading in her book for “angry or worn out people,” You Still Can’t Do It.

Which is why care giving or just plain ol’ family life can be the door to discovering the unearned, undeserved favor of a loving and very patient God.

NO, IT’S NOT BAD PARENTING

Award winning author Norma Gail asked me some probing questions in an interview shared on her blog.

Here’s a bit of it, with some key quotes available for Tweets embedded by the host,

NORMA GAIL:  Autism affects 1-68 children in America. That’s more common than most people probably realize. What are the most basic things you wish people knew about Autism and the families it affects?

Leonidas

Lifted here.  You might find the article amusing, too.

SOMETIMES CARE GIVING STINKS: I think I speak for many families of children with autism who want to scream, “NO, IT’S NOT DUE TO BAD PARENTING.”  It’s a neurological disorder, most likely genetic rather than environmental in origin (although people debate that with some ferocity).  One of the hardest things is that kids with autism are impaired socially and so their parents can invest sacrificial work with little to no emotional connection in response.  We were spared that – Joey is very connected emotionally, albeit in some quirky ways.

There is no “cure” for autism or any one therapy that is useful in all cases.  Families hope for a “silver bullet” that will solve things, and this can leave us open to bad advice, blaming or other traps.

Parents deal with feelings similar to grieving a death.  Various hopes and dreams we hold out for a typical child often have to be given up for a child with autism.  Some kids on the autism spectrum grow up to play sports, perform in the arts, excel in academics or vocational skill, get married and all kinds of other things we think of as making for a “good life.”  But many will never experience some or all of those things.  They have other pleasures – parents have to learn to love those.

Siblings can feel ignored due to all the effort and attention put into caring for the child with autism.  The whole family is impacted.

Allies mean a great deal.  Educators, medical people, community programs, understanding churches (not always easy to find), and just plain caring folks make life better.  There’s a neighbor of ours who routinely keeps going down our sidewalk when clearing his of snow – the time and effort he saves us is a precious gift.

NG: What are some of the greatest challenges faced by parenting a child with a disability?

SCGS: As the book points out, family caregivers – and this applies in situations beyond Autism, such as Alzheimer’s, spousal disability and many other conditions – are trying to fulfill roles beyond the knowledge, skill, energy, patience and finances of a typical individual or family.  We get stretched beyond our limits and, really, beyond any realistic expectation of becoming “good at it.”

In our case, we had to deal with Joey’s “meltdowns.” Kids with autism become frustrated when they can’t understand or be understood by others, and this can lead to a violent outburst.  It’s not the same as a tantrum, in which a kid wants a toy.  It is an all consuming surge of energy in an effort to connect with a world that seems out of touch.  It is heartbreaking to try and contain a beloved child who is putting you in serious danger – Joey would punch, kick, bite and throw objects at us.

There were several years where we didn’t think that Joey or any of us would ever sleep.  The stuff that makes you laugh after the years of raising a baby keeps going when autism is in play.  I sometimes tell people, “Imagine having a combination of newborn and toddler for a couple of decades.”

Parents share war stories of dealing with “the system.”  Some school districts are downright hostile to special needs kids, considering them a financial drain on services for “normal” kids.  Then there are the insurance issues, efforts to see specialists, quests for specialized therapies – it is exhausting and sometimes fruitless.

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Check out the interview.  Leave a comment there on Norma Gail’s blog and you might win a signed copy of Raising a Child With Autism.

Empty cart, not yet empty nest

shopping-cartI couldn’t resist having fun with the sign on this shopping cart.  I Instagramed (is that the verb?) it, with a caption about how I wasn’t getting any children anyway since I was fasting for Ash Wednesday.

Humor is an important ally to the caregiver.  It is a tension cutter.  Much of our humor is dark, but then so are the situations that generate it.

In recent months it’s been harder for Melissa and me to laugh at some of the quirks of Joey’s autism.  His video watching becomes intrusive noise; I don’t think he’s turned up the volume but our annoyed ears seem to think he has.

The chores of his daily routines – chores we do for him, let me be clear, not chores he does – are not a terrible effort yet they are numbing.  Not demanding physically, but draining psychically.

His non-cooperative behaviors get under our skin more.

We have more wistful conversations about being empty nest, about having the house and the time to ourselves for the first time in forever.  And so we wait for Joey’s group home placement, still loving him and wanting all to be well in his life yet feeling the limits of our own aging and of the two decades dominated by autism.

And that’s followed by a mist of fear that we’ll be staring at each other across a great emptiness wondering, OK, now what do we do?

Speaking of aging, I guess that entitles me to repeat stuff I’ve probably said before but can’t remember if I did.  So, let me say (again) that one way to describe raising a child with autism is to ask parents of typical kids to remember the sleepless nights and all the stuff that went with a new baby – the stuff that in hindsight becomes a source of humorous memories.  Now imagine that much of that stuff never developed into self sufficient adulthood and you kept doing it for five years, then ten, then twenty.  Not so funny anymore.

Remember that you are dust, and to dust you shall return, is what we say on Ash Wednesday.  Indeed, care giving exposes every pathetic evidence of sin and fatal separation from God – every bit of selfishness, the limits of love, the capacity for self pity and resentment, the instinct to blame… all of the ungodly feelings, thoughts and emotions in service of the world, the flesh and the devil.

If we are fortunate, it becomes the great weakness that throws us upon the grace of a loving God, who gives us power to live in ways we never imagined,

Three times I appealed to the Lord about this, that it would leave me, but he said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’ So, I will boast all the more gladly of my weaknesses, so that the power of Christ may dwell in me. Therefore I am content with weaknesses, insults, hardships, persecutions, and calamities for the sake of Christ; for whenever I am weak, then I am strong. (2 Corinthians 12:8-10)