Wondering about the void

Lake Minnetonka

Looking out from the club’s dinning room onto Lake Minnetonka

While Joey spent the weekend in a respite apartment (that’s respite for his caregivers, mind you, he’d rather be home with his own stuff), Melissa and I traveled to a lovely spot in Minnesota  as guests of a church with a big heart for service to others.

We spoke as a couple at a forum for Autism Awareness Month.  It was well attended by folks caring for loved ones with autism and others who have friends or extended family members living with or caring for special needs.

A number of great questions and comments came up.  I want to return to some of those here on the blog.  They’ll be in no particular order except as to when they pop back into my head.

Melissa brought up what we call “the void.”  Taking care of our son Joey for the last 23 years has blessed, warped, changed or any-number-of-other-verbed every aspect of our family life, our marriage included.

I hear similar thoughts from caregivers in other situations, such as those caring for a disabled or chronically ill spouse, or grown kids caring for parents with dementia or Alzheimer’s.  Care giving takes over everything.  Some relational bonding is put on hold or evaporates, while the care giving routines become a kind of alternative glue holding people together.

Then the daily care giving goes away.  The person under care dies or is institutionalized.  In our case, Joey is on the waiting list for a group home opening.  Our dawn to dark (and sometimes in the dark) duties will move out with him.  Melissa and I will be staring at each other with a lot of “Now what?” space in between us.

Daves dad and joeAs important and immediately refreshing as we found our trip, we were urgent about getting things back to “normal” and we picked up Joey and whisked him to one of his favorite restaurants. Daves mom and joe The house might have been uncomfortably quiet as we unpacked a few bags and…

…and what?

This is ground we’ve not been over, but can see in the not-too-far distance.  We are trying to regenerate some of our couple time together, and keep up friendships, and envision things we want to do when we’re free to get on with them.

But we’re also interested in the experiences of those who’ve been over the territory, especially as couples.  Did you experience the void?  What did it do to your relationship?  How did you (plural you, y’all) come out on the other side?  Or did you?

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.

Isolation

The first book signing for Raising a Child With Autism is history, but this isn’t about the book.  It is about the people who stopped to talk at the display table and others who’ve been in touch via the internet.  My prayer list keeps growing with their names and needs.

One man took a break from his job down the street from the bookstore to come in and describe his family’s unique challenges.  They care for a son with autism.

We noticed that people stopped inviting us to stuff.  I think they’re afraid of our kid.  My wife is at home alone with him more and more.  She’s really feeling isolated.

All kinds of care givers suffer in similar situations.  People don’t invite you out or you find it too much of a hassle to go.  Competent babysitters or respite providers are hard to find.  The person in your care is agitated if you go out on your own, but resists going along when invited.

Many Christians will hear a familiar Bible lesson on an upcoming Sunday in Easter season.  It begins with people in isolation,

2012-12-22_09-13-56_966When it was evening on that day, the first day of the week, and the doors of the house where the disciples had met were locked for fear…

But the locked door is as powerless against what happens next as, well, our bedroom door when our son Joseph wants to bust in about something.

Although the doors were shut, Jesus came and stood among them and said, “Peace be with you.”

We weren’t able to attend an Easter service.  I had to work and Melissa had to – did you guess? – be home with Joe.  Yet Easter isn’t less Easter to us, because of the one who burst the isolation of his tomb and, by his Spirit, reaches into the isolation that afflicts the human race.

There’s no easy set of “steps” to make this happen, much as I’d like to bottle and sell such a formula.  But I suppose it begins like most efforts to end isolation, with a conversation,

And I tell you, ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you. For everyone who asks receives, and the one who seeks finds, and to the one who knocks it will be opened. What father among you, if his son asks for a fish, will instead of a fish give him a serpent; or if he asks for an egg, will give him a scorpion? If you then, who are evil, know how to give good gifts to your children, how much more will the heavenly Father give the Holy Spirit to those who ask him!”

We are blessed this Easter.  Although we couldn’t be in church, we will soon have dinner with friends who love Joey and welcome him into their home.

We are grateful to all who read what we share, who leave messages and otherwise communicate with us.  You have been part of God’s response when we’ve asked, sought and knocked – you help deliver us from isolation.

May God’s peace be always with you.

The overlooked caregivers

Today is “Siblings’ Day” when one should appreciate brothers and sisters.

The brothers and sisters of a child with special needs are too easily overlooked.  It is easy to appreciate how they “help” with care giving but overlook their unique needs.

Here’s a short video that’s a helpful reminder.

 

A Love that Lets Go

So important to honor the dignity of those in our care, even if that presents difficulties all around.

BeautyBeyondBones

I’ve spent a lot of time recently in my own head. Today marks the three month mark since my mom’s stroke, and there have been a lot of ups and a lot of downs.

And I’m learning a lot.

And honestly, I’m learning a lot about God’s love for us.

We’ve reached the stage in my mom’s recovery where…there’s a frustration within her about how things aren’t back to normal. And a gripping desperation for autonomy.

And I’m going to be really honest, being in my position, as her grown daughter, having come home to be her “sidekick” as I call it – there’s a really delicate balance of how much help is too much help. I want to assist her so that life runs smoothly, but I don’t want her to feel like a child or that I’m belitting her or discrediting her capabilities or contributions. And I’m finding…

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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.

Book tour – you can help!

April is Autism Awareness Month.  I’ll be out presenting the book in hopes that it reaches families in need of encouragement.

Zandbroz Book Signing<- Saturday, April 8th is a book signing in downtown Sioux Falls, SD.  The owner of the variety store, who created this great poster, has a family member with special needs.

The day before that , Friday, April 7, award winning Christian author Norma Gail will feature her interview with me on her blog.  She’s also cared for family members with special needs.

StMartins Lake Minnetonka

As covered by the Laker & Pioneer News.

Coming up toward the end of the month, I’ll be speaking at St. Martin’s By-The-Lake Episcopal Church on the shores of Lake Minnetonka, Minnesota.  I’ll have the chance to preach at two services as well as offer a forum in between them. –>

 

How can you help?  On line reviews, even a few sentences of reaction, can raise the profile of the book and help others take a look.  If you found Raising a Child With Autism meaningful in some way, please share a review:

On Amazon.com (if you didn’t get the book via Amazon, please be sure to state in your review how you received it, such as “It came as a gift from a friend.”)

and/or

At Goodreads.

Thanks in advance for your support.  The hope is to reach families that need some encouragement in the midst of care giving.  And as one reviewer said, it goes beyond autism:

This is a most amazing book. The writing is phenomenal. Each chapter is divided into three parts, and each connected to “gardening or growing something”. This book is like a meditation and it does not just relate to raising a child with autism, it can apply to any difficulty, one might be going through. It even relates to just life itself. I have given this book to many people and all have loved it. The depth of this small book will amaze you.

Because it stinks…

air freshener

Image found here.

…caregivers have some capacity to freshen the stinkiness in others’ lives (and thereby in our own).

I think that our experiences can give us compassion for others’ struggles, even those not tied to care giving.

Here’s a positive review of our book, which notes that it can reach into situations that are not just like ours:

This is a most amazing book. The writing is phenomenal. Each chapter is divided into three parts, and each connected to “gardening or growing something”. This book is like a meditation and it does not just relate to raising a child with autism, it can apply to any difficulty, one might be going through. It even relates to just life itself. I have given this book to many people and all have loved it. The depth of this small book will amaze you.

I think we can fight off pity parties (OK, sometimes) by getting out of ourselves and helping others with different challenges.

Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God.  For as we share abundantly in Christ’s sufferings, so through Christ we share abundantly in comfort too.  (2 Corinthians 1:3-5)

 

Not Fabio but he’ll do

FlowersStorm_avoncovers_first_web-200x327

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?

Why did I write that book?

The truth is going to sound wacky, pompous and neurotic.

But I’ll lead with the truth and then list some more palatable stuff.

The truth is that I was in the park with our son, Joey, who lives with autism.  His slightly older, neurotypical (aka “normal” or at least NOT living with autism) brother had just driven away to start college.  I was praying, which was easy as it was a gorgeous day.  Obviously, my heart was full – memories of the kids over the years, hopes for what would come – so I was pouring that kind of stuff out to God.

Not audibly, mind you.  The other parents were not telling their kids, “Honey, come over here, away from that strange man.”

And just as surely as I was speaking to God, God spoke back, not in a audible voice (I’m only neurotic, not psychotic yet), but in a thought that flooded my mind and overflowed into my heart: You can write a book that helps other family caregivers.

I knew right away that I would be writing in the midst of care giving, not from past experience.  The book would never be The Five Essential Habits of Excellent Caregivers or something like that.  Rather,

  • I wrote it so that people confined by the demands of care giving would find companionship, at least in the stories I tell but hopefully beyond them in the divine, “patient gardener” who has helped me beyond what I could ask or imagine;
  • I wrote it so that stressed out people could laugh.  You have to find the humor, dark though it might be, to keep going as a caregiver.
  • I wrote it to process my own inner stuff.  As I said, I wrote it while care giving, not after.  And so it was a combination of meditation and therapy for me as much as for any potential reader.
  • I wrote it because I enjoy writing.  It is a gift I have to share and, frankly, I communicate better through writing than any other means.  Well, except yelling or crying and stuff like that.

Ortt book and icon

 

A long time friend shared this lovely pic of the book on a desk where he studies and prays.  I pray and hope that this little book serves God by helping family caregivers in the depths of their hearts.