On Having Faith

What I find interesting about marriage and falling in love is how often in saying "I do," by taking the hand of another, we are taking a leap of faith.  We don't know how it will turn out, we don't know what the future holds, but we choose in those moments, those early years, to believe that love is greater than all our faults, that together we are better than we are alone.  And one of the traits of early marriage (the "honeymoon" phase) is just how much we achieve.  We go from two to one.  We bring two of everything:  two lives, two homes, two incomes, two stereos, two routines, two separate and distinct people who somehow must unite into one family.  We are all pretty much in agreement that those years are difficult, that they are fraught with conflict and hurt feelings, changes and turbulence.  But over and over again, couples take that leap of faith and begin a new life together.  Because we believe in it.

Some people say the honeymoon is over when reality sets in.  Gradually, or maybe suddenly, we don't want to have to work so hard at everything.  We are sick of compromise, fed up with sacrificing.  We break our vows in a hundred different ways, but what we are really saying is I don't believe in US anymore.  We've lost our faith.  And isn't it interesting that an affair is often called "being unfaithful"?  We begin to imagine a new life, one that doesn't require so much, one in which the house is always clean and the husband never gets sick and the bank account always has money in it.  We look for someone else to meet our needs, to satisfy our fantasy of love without sacrifice.

We know that fire is destructive.  But fire is also used to strengthen and purify, to mold and shape.  Conflict in marriage is like a fire.  It can bring us together or leave us sifting through the ashes.  There are times when marriages should end.  There are hurts and breaks and wounds that can't heal together.  There are abuses that shouldn't be tolerated, there are boundaries that shouldn't be violated. But there is no relationship that will come easily all the time.  There is no commitment without work. There is no love that doesn't change and transform you.

When the honeymoon is over, that is when Real Love begins.  We keep showing up, day after day.  We put in the long hours and the sleepless nights and get through the droughts and difficulties together.  We begin to realize that this family we are building will never be finished, that as soon as we get into a routine with each other, a baby shows up and disrupts all that.  And again, and again, as we add little people, we scramble to keep our heads above water, never actually getting a chance to sit back and see all that is happening as the moments blend into each other and take up all our time.

I think this is why we celebrate anniversaries.  It's a chance, at least once a year, to look back and see all that we've accomplished, all the growth that has taken place.  It's a day to see all that has come from our act of faith.  And we can keep going with proof; proof that we work, proof that we have become so entwined that we are truly one flesh.

So here we are, entering year 11, moving away from the sleepless nights of babies to the busy evenings of easy readers and math worksheets, no longer the young couple working so hard to create something but still working hard to keep it.  

To the one that I love: I believe in us.  I am thankful for each day that we get through together, for all the ways that we hold each other up.  And I have faith that the best is yet to come.

Perspectives

Something wonderful happened this weekend.  We went to church as usual, and when it was time to sing the kids' song which involves running around the room, James leaned over and whispered "Help me." He wanted to do the dance moves and join all the other kids, but he also hates to bump into people.  So we stood to the side and did the motions, and when the time came to run, he climbed on my back and off we went.  I don't think he's ever done this.  There was a game he wanted to play, and so I gave the condition that I wanted him to participate in his lesson and let me participate in the adult time, and then we could play after church.  His teacher reported that he did, in fact, join in with the lesson.  I got to have some adult conversation.  Afterwards, we played the game.  As we left, I felt victorious.  This is progress.

And sometimes I think we spend all this time sharing such victory stories, talking about how far our kids have come and what they are now capable of.  It's exciting.  It makes all the therapies and attention and work seem worthwhile.  But there's another side to all of this.  And I consider it just as big a victory to realize how much I have shifted my own behavior and expectations to make our home welcoming and comfortable for James.  Yes, my son needs to learn how to get around and get along in this confusing world (to act "normal"), but it's also important for our family to act autistic.

I read a fascinating book a while back, Far from the Tree by Andrew Solomon, about how families cope with the addition of a child with a disability.  The book opens with a chapter on Deaf people; it is well-researched and thought-provoking, and it introduces two types of parents.  These two categories play out in each subsequent chapter, whether the parents are dealing with a deaf child, an autistic child, a schizophrenic child, a dwarf child.  One type could be called the Deniers.  It shocked me to read, but some parents, when presented with a child who cannot hear, simply ignore it.  They make no accommodations, no effort to learn sign language, and either the child suffers horribly or he is shipped off to a special school for the hearing-impaired.  Yikes.  Let's call the other type of parent the Embracers.  Embracer parents learn all they can about their child's diagnosis.  Many of the folks interviewed in the book started schools or community groups, moved across the country and changed careers, all for the purpose of helping their child have the best life possible, making opportunities where none existed before.  For the parents of a deaf child, embracing the diagnosis usually involved learning sign language.  For those whose children were diagnosed with dwarfism, it means traveling each year to the Little People of America National Conference, where their child can socialize, get medical consultations, and celebrate their short stature.

What does "embracing the diagnosis" mean for parents of autistic children?  There is no common communication style or national convention that gathers others like our kids.  We have a plethora of professionals who can offer guidance and advice, provide services and create plans.  We have our instincts to love and protect our children, and quite possibly our own sensory issues or social anxieties that look a lot like struggles our kids are having.  But most importantly, we have vital perspective of autistic adults.  Thanks to the internet and blogs and social networking, adults living on the spectrum have found a way to voice their thoughts and experiences.  They offer us a window:  this is what it feels like in an autistic brain, this is what it looks like to go through life and live in a world that celebrates neurotypical abilities.  And yet, so often we continue to ignore them.  (Myself included...as a mom, I prefer to read blogs that are written by other moms.)

So this is the challenge, which is meant to celebrate April as Autism Awareness Month, but for me, should just be a habit.  Read blogs written by individuals on the autism spectrum.  Listen.  Validate.  And most likely gain further illumination about what it feels like to be my son.  Because if he has trouble communicating, then I should assume at least half the blame.  Relationships are supposed to go both ways, so if I want to hear him talk, I need to create a space and time for him to do that.  I've learned that he doesn't want a microphone or a stage like so many others.  He wants me to climb the ladder and sit in his bed with a blanket over both our heads, and be still.  It's not easy for me, the one who loves to talk and write and share ideas, but it's necessary.  And I'm offering the challenge to each of you as well.  Let's open our eyes and ears and close our mouths and read what these people have to share.  Let's learn something new and appreciate a different perspective.  Let's share the spotlight with the true experts.

I'm starting here:
I am already familiar with the blogs written by John Elder Robison and Emma/Lemon Peel.  I've gotten some great advice reading Bec at Snagglebox and M Kelter.  I also regularly listen to the Loud Mute Radio podcast. 
This month I'll also be reading Amy Sequenzia, Autistic Hoya,  Just Stimming, and Unstrange Mind. Diary of a Mom lists many more, and I'm sure each of these blogs can direct me to other autistic writings as I go.
The challenge is to read at least 10 entries per writer.  My hope is to find more insight into the world of autism, and maybe a new favorite blog.  Also, I think it's time we start trafficking websites whose content is written from a first-person perspective.  It feels weird to write a blog telling you to read someone else's work, to acknowledge that my my point of view is limited and probably not very helpful.

FIVE MINUTE FRIDAY: Relief

Welcome to Five Minute Friday!  This community was founded by Lisa-Jo Baker, who hosted the weekly link-up on her blog for four years before passing it on.

If you’re new here or haven’t participated before, here’s how it works:

Every Thursday a one-word prompt will be announced at www.katemotaung.com at 10pm EST (and continuing through Friday).

Those who’d like to participate in Five Minute Friday will write for five minutes on the topic of the week, post it on their own blog and link up the post here.
GO.  

The alarm is going off. Again. Time to get out of bed, for real. Time to round up the pajama-clad boys scattered about the house and dress them for school. Time to pack the lunches and make their breakfasts, always with an eye on the clock. Because at 8:42 that bus will pull up, and my 2nd grader needs to be on it. Then it will be round two of find the shoes and get your backpack and the daily fight over whether to wear a thin jacket or a warm winter coat and then down the stairs to drop off the kindergartner. If I make it before the tardy bell, I feel a sense of victory.

But that isn't it. There is still a wild, energetic, opinionated 3 year old in the backseat who wants to have fun, be entertained, see his favorite people. There are meetings and Bible study and appointments to get to. Always with the eye on the clock. Time to have fun, but a busy kind of fun. Time to play and be loud and listen and learn.

Relief comes when the clock nears noon. Time to sit and eat, time to lay down for a nap and read a story. Or two. Time to close the door and...silence. For the first time all day, my time is my own. I can read. I can watch. I can close my eyes and focus my breathing and RELAX. Never watching the clock. Only waiting for the tiny voice to resume, for the door to open, for the end of nap time and the pick-up run. Relief is short-lived these days.

STOP.

On Wheelchairs (World Autism Day)

My family and I are vacationing at Walt Disney World.  It really is the happiest place on earth...except at 1pm as we are dragging a weary three year old back to our hotel for a nap on a crowded bus.  We are surrounded by smiling faces and sticky fingers, by princesses and monsters, by magic and innovation.  One thing that I have noticed over and over again is the number of people in wheelchairs.  It's incredible to see how these parks have made it possible for the physically disabled to experience just about everything that my able-bodied family is enjoying.  From the buses and parking lots to the restaurants and rides, there are designated accommodations for individuals and families arriving with wheelchairs. (The Small World ride has a boat specifically for passengers in wheelchairs and their companions.  Amazing.)

Sound-muffling headphones are a simple accommodation
to make Disney World enjoyable for everyone

Tonight, I found myself imagining the world before the invention of wheelchairs.  What was it like to break a leg or suffer some other injury that prevented a person from walking?  What was it like to suddenly find yourself paralyzed from the waist down, or to give birth to a child whose legs didn't work?  Most people were probably bed-ridden, trapped in their homes or medical facilities (or, let's be honest, some sort of depressing invalid ward).  And prospects would have been infinitely better for those experiencing a short-term affliction versus those whose diagnosis meant lifelong confinement.  Families were probably distraught over the loss of their loved ones' mobility, as it would require more time and effort to care for this person, and there was no way he would ever earn a wage or live on his own.

Historians have found evidence from thousands of years ago that the Chinese invented a wheeled device for transporting people, but wheelchairs as we know them didn't come about until the early 1900's, and it was only the passage of the Americans with Disabilities Act of 1990 that led to the wide spread accommodations currently in place.  In other words, it's been a long time coming.  The physically disabled have always been with us.  We haven't cured disability, but we've made it possible to live full lives in spite of it.  (I used to work with a guy who used a wheelchair.  He drove himself each day in a car specially equipped with hand controls.  I'm pretty sure he earned more than me too.)

I can't see the destination but I love watching the journey

And here I am, on April 2nd aka World Autism Day, engaging in a Facebook debate about cures vs. accommodation.  Shouldn't people be researching a cure for autism?  Wouldn't you rather that your child didn't have this neurological disorder?  Maybe it's too late for your family, but shouldn't future cases of autism be prevented?  To each of these questions, let me quote from the website www.cerebralpalsy.org:
  "Treating cerebral palsy is almost as complex as the condition is, and there's no cookie-cutter approach because each individual is affected differently.  Although the brain injury that causes cerebral palsy cannot be healed, the resulting physical impairment can be managed with a wide range of treatments and therapies.  Although there is no universal protocol developed for all cases, a person's form of cerebral palsy, extent of impairment, and severity level help to determine care."
The course of treatment recommended includes:  optimizing mobility, managing primary conditions, controlling pain, preventing and managing complications, enhancing social interactions and fostering self-care, maximizing learning potential, and providing quality of life.  Reads like a caregiver's guide for autism as well.  And this is why I don't think finding a cure for autism is a good use of science or funding.

James' smile is the cure for my grumpy moods

Autism is a neurological difference.  It doesn't need a cure.  It does require a course of treatment, therapies and interventions and managing its effects.  Just as the wheelchair has transformed the lives of individuals with physical differences (be it injury or fatigue or muscular spasticity), our autistic loved ones need accommodation for their brains.  I believe research is better spent finding the Autism Wheelchair.  First, because unlike an autism cure, autism interventions and assistance actually exist.  Second, because this will make not only the lives of future generations better, it will make a world of difference RIGHT NOW.

Over a million Americans use wheelchairs to participate in the world around them, to take vacations and work and go out to eat.  More than 3 million Americans are living with an Autism Spectrum Disorder.  They don't want to be "fixed", they just want to be heard.  Instead of eradicating them, I suggest we listen.

www.autisticadvocacy.org
http://www.autism-society.org
http://muleandmuseproductions.com/blog/
http://jerobison.blogspot.com
https://emmapretzel.wordpress.com