On the spectrum

prism

Lifted here

That people with autism live on a spectrum was clear from recent conversations at our forums and book signings.

When Melissa and I ask  people there about their contact with autism, we hear a diversity of experiences:

  • My nephew with autism just finished college
  • Our friend’s daughter with autism just got married
  • Our grandson with autism wrote a book
  • He’s very high functioning but socially awkward 
  • Nobody invites us to anything because he gets violent

For caregivers, the spectrum creates obvious problems.  Therapies that were useful in one situation simply bounce off of another.  Support networks are hard to build – yes, misery loves company but finding a common set of experiences and resources is not easy.

In our family, we are blessed that Joey is emotionally connected and affectionate.  Many families of people with autism don’t have that and expend sacrificial love with little in return.  It is hard for us to imagine their challenge, even though we might have many other common experiences.

Steve Silberman makes some important points as we wind up (did you know it was April?) Autism Awareness Month.  So much science is about “root causes” when the daily struggle is about quality of life for people on the spectrum and their caregivers,

…the lion’s share of the money raised by star-studded “awareness” campaigns goes into researching potential genetic and environmental risk factors — not to improving the quality of life for the millions of autistic adults who are already here, struggling to get by. At the extreme end of the risks they face daily is bullying, abuse, and violence, even in their own homes…

Obviously, even a month of acceptance will not be enough to dramatically improve the lives of people on the spectrum. What could be done to make the world a more comfortable, respectful, and nurturing place for millions of autistic kids and adults  — now, starting today?

There’s no one answer.  But there are millions of potential answers in the hearts of many who care for people with autism and those who know and care about our families.  Caring people are on a spectrum, too, from kindly neighbors and friends to the folks who form public agencies and organizations to medical and therapeutic professionals…

…to patient strangers who take the time to be kind in the face of confusing and even ugly situations.

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.

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.

 

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.

Worth reading, discussing and doing

Forbes Magazine has a #LifeHacks piece called 4 Critical Things To Do Before Becoming A Caregiver.  It is concise – almost a simple checklist of ways to prepare “General, Legal, Medical and Financial” documents and plans before becoming a care giver to a family member.

Ideally, discussion and preparation should go on while the family is in good health.  Spouses should talk about plans as they age; extended families should talk things out with parents, grandparents or other aging loved ones.  Families like ours, engaged in long term care of a special needs child, need to get ahead of these matters as well.

Unfortunately, care giving falls into many lives without time to prepare, as the result of a catastrophic illness or accident.  This article will still serve as a valuable resource, even under difficult “catch up” conditions.

While the article does mention getting “Names and phone numbers of religious organization and points of contact,” we would amplify this to include discussion and documentation of funeral/burial wishes, whether religious or not.  Don’t underestimate the wear and tear on care givers and other survivors;

  • the unexpected cost of a funeral, often setting up stress between unexpected price and available budget, leading to guilt and family squabbling;
  • the bombardment of questions – “What music at the service?  Burial or cremation? Who is going to speak?” – that comes in right when survivors just want to be still, remember and grieve;
  • the challenge of providing an event for a large number of people, many of them strangers to the survivors, on short notice;
  • oh, so much more.

It is a great gift to the family to have talked out and written down the loved one’s wishes in advance.  Most funeral homes and many churches have worksheets that ask all of the relevant questions, and having these available at the time of death takes a great deal of strain off of those dealing with loss.

Party!

Family caregiver? You can jump into this online party in the coming week. Great blogs to discover, new friends to make, prizes to win… all from the “comfort” (yeah right) of your care giving location! Great way to take a daily break, and hosted by a site with tons of resources:

A copy of our book will be one of the prizes!

High Fives All Around!

Just caught this on Twitter:

screenshot-2016-11-15-18-07-57

We have a month of our own!  Did you know that?  Now quit gloating and clean up some bodily wastes or go to an IEP or do some laundry or something, dang it.

But seriously, we all need some affirmation in this care thing we do.  So take a deep breath and know that you are valuable in ways that those in your care, those watching and even your own heart and mind might not be able to articulate.

God bless you.

You can read more about National Caregivers Month here.

No Trick

Don’t know what the publisher had in mind but today (Halloween) is the release date of our book.

If you go to the Amazon.com page, you can see the front and back covers of the book and even peek inside.  It’s available in paperback and Kindle formats.

If you shop on Amazon on some regular basis, check out AmazonSmile.  You can set up so that a portion of anything you buy on Amazon is donated to a worthy group of your choosing.

If you are so inclined, you can identify SD Achieve (aka LifeScape), which is the organization that provides wonderful service to our son, Joey.

Thank you!  More care giving antics to be blogged soon…

 

Hope this helps… [UPDATED]

book-cover

Blogging’s been sparse here down the home stretch of distilling some of our insights into book form.  See?  I’m so worn out that I’m mixing metaphors.

Anyway, here it is, available for preorder at Amazon.com.

UPDATE:  Some of you might be asking, “Hey, what happened to Blooming Idiots?  THIS IS THE SAME BOOK.  My editors had a late insight – a good one – that there could be a perception problem.  Can you imagine a Tweet something like “I just read a #book about #autism called Blooming Idiots” ?  The implication would be that people with special needs are idiots – precisely the opposite of the book’s message. 

We tried some artsy titles, but they made it sound like a gardening manual.  So we went literal, just laid it on the line.  Wise move, which is why one has editors.

Also, some have asked about formats.  It will be available in paperback and in a Kindle version.  At the Amazon page, there should be a show all formats link.  If that doesn’t work, try clicking the link version of author name (Timothy Fountain).  That should show the choices.

We pray that it will reach and help family caregivers, especially those just stepping onto the ground we’ve been walking these last couple of decades.

And hopefully we’ll be back to blogging and sharing more thoughts.  Thank you all for being part of this.