Know What You're About (Day 1)

There is an old Sunday School song I grew up with, one that I can still recall, complete with church-appropriate hand motions (because dancing is wrong but motioning that something is gushing out of you is holy).  It goes like this:

I've got a river of life flowing out of me,

Makes the lame to walk and the blind to see!

Opens prison doors sets the captives free

(youth groups love to squeeze in a little

shout of "I'm free!" here)

Oh, I've got a river of life flowing out of me!

I always liked songs that were upbeat and especially gave me the chance to stand up and move around a little.  (I'm in the Lord's Army was another gem.)  But as I get older, as time and experience, and yes, even Jesus, transform me, I find that the message in this simple song rings true.

When I was young and singing this song heartily with other kids, I was one of those captives.  I was held in by shame and fear, so painfully shy and uncomfortable with myself.  I went into my head, into my imagination, and I pretended I was whole and free.  Having no idea what the real thing felt like, I convinced myself that what I was able to dream up was enough.

I made up stories and began to write them down.  I imagined that someday I might even make a living as a writer, like the still, smiling photographs on the backs of my novels.  They were calm and happy, and most importantly, grown up.  If I could be like them, then I maybe I wouldn't be me anymore.

But everyone said it was impractical to try to write fiction, and even if I could block out the pragmatist in my head who stomped on those childhood dreams, what would I even write about?  What did I know?  What could I give?  What could I write that would make a difference?

Marriage and motherhood cracked my heart wide open, and I began to see little streams of ideas.  I started writing again, writing what was in my imagination but also in my heart.  One day, I conjured a woman, a character.  She was full of shame and hiding in her life.  (Hey, write what you know.)  She needed love to transform her, to set her free from her invisible shackles.

And so I wrote the first part of a novel.  I set it aside to welcome my third child, and over the course of his first year of life, I experienced the transformation that she and I were both desperate for.  I finally had the courage and the support to voice my shame, to let go of my fears, and to finally start to find peace with myself.  When I sat down again to work on the story, I couldn't believe how parallel our lives were, me and this imaginary woman.

Soon, the ideas began bursting like popcorn in my mind.  With three children to take care of, it is slow work to put pen to paper (yes, I write my first drafts longhand).  But I finally know what I'm about.  I am about redemption.

This is what I know, because this is what I've lived.  A life that is not pretending, but really being lived free.  It is the gift I want to give my characters.  More importantly, it is the gift I want to give my readers.  I want you to know that you don't have to hide.  I want you to know that your past doesn't define you.  I want you to know that you are not alone.

Someone tossed me the keys to open my prison doors and beckoned me to walk out, to live free.  I want to write words that do the same for others.  I want to shine light in the dark places and show you how to experience a river of life pouring out of you.  Spring up, Oh well.  (Goosh Goosh Goosh Goosh) 

Feeling Inside Out

We took our kids to see Inside Out on Father's day.  It seemed like a great family activity, and a way to celebrate the Daddy who does so much for us.  We are all happiest, it seems, at the movie theater.  With popcorn and sugary drinks, with bags of Skittles passed down the row, with the lights dimmed and the magic of Tinseltown at work in front of us.  I was excited, of course, because Pixar movies never disappoint, with their tight stories, gorgeous animation, and that amazing ability to delight both children and their parents.  But I was also feeling nervous.  I had done a little research the week before, listening to the director, Pete Docter, on Fresh Air with Terri Gross.  It was fascinating to hear how the film's writers and animators had worked out the story, learned about the functions of the brain, and chosen the actors to voice the characters.  There was a key element to the movie that I knew would hit a little too close to home, though.  The movie shows the emotional life of Riley, an 11year old girl who has just moved across the country with her parents.  Pete Docter shared that this was chosen as the catalyst for the Emotions to get out of whack because his family had moved when he was 11.  But it's more than Riley's story and Pete Docter's story; it is also my story.

When I was 11, just finishing the fifth grade, my parents decided to move from my hometown of Dallas, Texas to Ohio.  In fact, I missed the last day of school to help load our Ryder moving truck, and we spent the night as a family at motel near the highway in order to get an early start in the morning and try to miss the Dallas rush hour.  I even lost my last baby tooth during our move.  In Texas, I was a basketball player, a native well-versed in the state's history, a Cowboys fan, occasionally too loud, occasionally too aggressive.  I loved school and my teachers, I knew every inch of my neighborhood, from the well-worn paths where my sister and I rode our bikes to the cavernous stormwater pipes that ran under our street.  I had friends and I was confident.  And then we moved, and much of that changed.

It wasn't until I watched Inside Out this past summer that I could finally articulate what that move was like for me.  There it was, playing out on the giant screen, the way everything around changes while everything inside is changing too.  For me, growing up felt like a severing of myself.  Childhood was in Texas and adolescence was in Ohio.  I imagine that people who don't move in the middle of their young lives probably have a stronger feeling of integration, that the places where you have your first kiss or your first job are the same places where you used to play with your friends or shop with your parents.  Just like Riley, I struggled to fit in at my new school, to be excited about the changes in my life.  And just like Riley, I lost pieces of myself along the way.  The friends I left behind disappeared like Bing Bong in the Memory Dump.  Basketball was different, and within a few years I switched from being an athlete to being a band geek.  I lost some of that confidence too, the feeling of belonging, of being home.  It took many years, and a few more moves, for me to find that again.

Then there is the final lesson of Inside Out, the realization that all of one's feelings have merit and purpose, and that Sadness is necessary to move forward.  It felt like I was sad for a full year, overwhelmed and confused and struggling.  I longed to go back, to return to the Lone Star state and my real life.  But that wasn't happening.  Yet it was in that sad state that a new self was born.  I became the sapling of the woman I am today, sarcastic and pensive and loyal and silly.  I made new friends, developed new hobbies, found new places to ride my bike and new ways to express myself.  It wasn't easy, but probably no one feels like it is easy to get older.  And it created something special inside me, a sense of compassion and tenderness towards girls entering 6th grade and experiencing all those changes.

It's amazing how it all works out, isn't it?  How the places where you feel the most pain and challenge become the places where you are most able to help others, how the worst times lead to the best times.    And how home turns out not to be the place you left, but the place where you arrive.

In the Middle

I turned 33 this year.  The definitions of age are shifting in my generation, so that "young" is different than it was for my parents or my grandparents, and "old" has moved further back than it was in the past.  People say things like "40 is the new 20!" which I think means that people hitting their forties are still as youthful and exciting as twenty year olds.  Not like my parents, who were packing their children off to college and preparing to be "empty nesters" when they hit forty.

So maybe 33 is still "young" and maybe (given genetics) I'm only a third of the way through my life, but I feel like I have hit the "middle age".  Not just because my knees click when I climb stairs (which they never used to do) or because I started wearing a swim skirt (the better to hide my lumpy mom body!), but because the time to figure out who I am seems to be over.  I can still try new things and experiment and fail and pick myself back up, but I have to do this in the middle of a life being lived.  I can't change course quickly, because I have a family that goes along with me, and I have to factor in everyone's needs, not just my own.

At 20, I could try a new hobby and decide if I liked it or not.  I could spend all day reading or watching tv with no guilt.  I could move to Tennessee and then back to Ohio when I felt like it.  I could eat an entire bag of chips or stay up all night or suddenly decide to bike 10 miles with no consequences.  But now?  Now I'm in the middle.  Now the consequences of disengaging from the world are cranky kids and huge laundry piles and late bills.  Now I feel the effects of what I ate or how I slept or what crazy thing I tried to put my body through for days.  All of this leads me to believe (no matter what the magazine covers say) that I have transitioned into the middle of my life.

So all of this is well and good, except I've heard about this thing called a "mid-life crisis".  Those never go well.  That's the time when people spend crazy amounts of money on sports cars or leave their spouse for someone else or travel to India to prove they can still have adventures.  But I'm wondering what has to happen to go from realizing and accepting that my life has reached the middle to a full-blown, poor decision making crisis.  I mean, I love my minivan.  I love my husband.  I love staying at home and not contracting some flesh-eating virus from, I don't know, dirty ashram water.  Maybe I'll be lucky and miss the "crisis" part of aging.  Wouldn't that be nice?

I was listening to "Coffee with Christine Caine", my new favorite podcast (because, hello, Christine Caine, and also they are about 10 minutes long which is about how much time I have to do anything for myself this summer), and she was talking about embracing new things and being innovative in our thinking.  She said something interesting, which is that being old happens when you get stuck in your ways and close off to new thinking.  According to Chris, there is no numerical age when you get old; a 26 year old can be old if he refuses to accept change and adapt to new circumstances.  Likewise, an 80 year old can still be skirting the young side if she is willing to try new things.  I witnessed that this past year when I signed up for a women's Bible study at a local church.  I joined my group the first day and was a little surprised at the white haired woman who announced herself as our leader.  She said, "My name is Betty and I've never done anything like this before, but I was asked if I would be willing to lead a group and so here I am."  Over the course of 25 weeks, Betty challenged my ideas about age and what people are capable of.  She doesn't drive after dark and she gets nervous when the sidewalk is icy, but she did her research each week and she kept our group on topic as we discussed the Life of Moses together.

Here I am, in the middle.  No longer an untethered young woman with the world at her feet and opportunity hanging like fruit from a tree.  Not yet a grumpy old lady shaking her fist at kids on skateboards and bemoaning "the good old days".  I'm navigating the middle of life, finding time to try new experiences between the demands and responsibilities of all I've been given.  To accept the limitations while continuing to dream.

Adapting

A few years ago, we were sitting in a doctor's office hearing our son pronounced "autistic" for the very first time.  The diagnosis didn't change anything about our child, but it changed everything about how we parented him.  It was the dreaded label that made us stop trying to push our square peg child into a round hole, to look around for the square hole where he fit.  We tried the team sport thing, signing him up for soccer.  He loved to kick the ball around our yard and could score goals, but once he got on the field with 15 other preschoolers, he wanted no part of it.  Now he goes bowling and is taking adapted swim lessons.  We tried to get him to say the words we so desperately wanted to hear. Then we posted pictures and visual schedules all over the house and relied on the form of communication he was comfortable with.  (And now he uses words more than ever; nothing delights me more than hearing him argue with his brother about who put their seatbelt on first or when he tells me he loves me.)  We adapted, because that's what people do.

It happens in a million small ways every day.  You make little changes because of your husband's allergy.  You change your schedule to fit another person's availability.  You stop doing certain things to support the health of someone else.  We were shocked when we met a couple whose kids had severe peanut allergies.  We wondered what they ate, since I am currently making 5 or 6 PB&Js a day now that the kids are home.  They just shrugged and said, "Not peanut butter?"  We adapt for the ones we love, and we don't even give it a second thought.

I certainly hadn't sat down and catalogued all the ways we have changed to suit our family, to make sure our son is successful.  Not until we heard Dan Habib speak about inclusion earlier this spring.  Because, well, our son doesn't attend the school closest to our house; he attends the school with the best program and teacher to meet his needs.  We don't go to the library closest to our house, where we'd signed up for cards and attended story time when he was a baby.  Not after being discouraged from bringing our child with special needs there and "disrupting" the employees and other patrons.  (Don't worry, a letter was written.)  Now we go to the library one town over whose employees smile when they see us and don't bat an eye at a little excess noise from the child flapping in the middle of the room.  And on and on, the places we don't go and the people we don't see and the things we do now that we didn't used to do, all for the sake of making life easier for our son and putting his needs first.  All of which I would gladly do over and none of which is meant to sound like a complaint.  (Except the librarians.  They were jerks.)

But there is one thing we haven't had to compromise and adapt, and that is church.  We go to the church we want to go to, the church we chose over the big one nearby with the special needs ministry and the air-conditioned sanctuary.  I'd like to say that it was the pastor's terrific sermons or the music (that is sometimes a little too loud--but that's what noise-cancelling headphones were made for) or the programs....but it's not.  It's because of the people.  It's because the first person I met there, as I nervously accompanied my son to the children's class, was a woman named Carol.  And there are some people who really try to be accepting and accommodating (which is FINE by the way, because it's infinitely better than the people who reject and ridicule) but Carol is one of those amazing people who just accept what is.  And she taught the class and she included James when she could and then the children played and she sat beside me and talked to me.  She asked me about myself and my son and she told me about the kindergartners she'd taught and I just felt so completely welcomed.  There are people who teach children and get the job done, and then there are people who are so obviously gifted at what they do, and she is one of them.

Soon we met other families and they all took one look and wrapped their arms around our family.  They asked how James could be included and what we needed, and honestly, I didn't have many answers, because I had no idea what it would look like for him to participate in a lesson or enjoy going to church.  And one time, I was telling a dad named Jay what is hard for James and what he doesn't like, and Jay said, "So what does James like?"  And I felt a surge of gratitude for the chance to focus on the positive for once, something that seems rare for families with special needs.  It took some time and it took some adjustments, but James loves church now.  He is still different, he still stands out from his neurotypical peers, but as far as I know, he is accepted by the other kids.  I try to take the chances that I'm given to explain his behaviors and his peculiarities to them, to demystify why it's okay for James to leave the room or bounce on a ball when everyone else is expected to sit and listen.

This is what the world should be like.  Especially at church, people should be embraced and accepted no matter what their differences and limitations.  We shouldn't pause for a moment to make changes and adapt, because love should govern our lives.  And when we love people, nothing seems unreasonable or audacious.

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.

Scabs, Wounds, and Healing

Michael fell a few weeks ago.  He was running barefoot at the pool (insert lifeguard whistle) and tripped on a little ledge and went sprawling.  I hurried over, knowing he would need me even before the cries began.  I held him and patted his back, I inspected his knees and hands, I kissed his and head and "I got ya, it's going to be okay".  He kept crying, which was strange, because I didn't see any blood.  It seemed like too much for just a bump.  Then I shifted his body and I saw it: a giant bloody toe.  I had looked in all the expected places for an injury, but it was his toe that had been scraped of skin and was bright red.  I took him to the lifeguard station and we did the usual, antiseptic wipe, pressure to slow the bleeding, a band aid.  I kept holding him for several more minutes, then he was ready to get back down and play with his friends.  We changed the band aid when we got home, applied some Neosporin, covered the foot with a sock so he wouldn't mess with it.

About a week later, he came to sit beside me.  His feet were bare again, and he was looking intently at his injured toe.  He touched it gently, and I noticed that a huge scab had formed over the cut.  "Does it still hurt?" I asked him.  He nodded, still looking at the toe.  "That's called a scab," I explained.  "The scab grows over your cut like a natural band aid and it stays there while the skin heals underneath.  Then, when it's ready, your scab falls off."  I was about to say, "And it'll be like it never happened," but I stopped myself.  That's not accurate, I thought.  I mean, he still remembers the fall and the pain a week later, and while he might forget about it over the course of his life, it's not going to go away.  It was a big enough cut that he'll probably have a scar , a silvery patch of new skin to remind him of the fall.  So instead I said, "When it's ready, your scab falls off and you'll have a little scar where you got hurt.  But once it's healed, it won't hurt you anymore."  He looked at me then.  "It won't hurt no more?"  Nope, it won't hurt no more.

I thought some more about wounds and hurts.  I thought of James, who hits his bruises, hoping it will make them go away.  I thought of my sister, who would pick her scabs too soon and bleed, who would pour nail polish remover over her cuts.  Thankfully she learned better wound care in med school, and when she performs surgery, she stitches and glues and pieces her patients back together.  But it's not just our physical wounds that we mistreat, that we run dirt into or pretend they don't exist. We do this in our wounded hearts, we use crude, ineffective means to cover and hide and our hearts just get mangled in the process.  There is only one way to wholeness, one course of treatment in our bodies AND our hearts to fully heal.  We have to flush our wounds, treat with antiseptic, cover with clean bandages, and we have to let our bodies do the hard work of rebuilding.  We need new skin, new nerves, new connections to grow under our scabs.  And we have to wait, to allow the healing process to complete itself.  Only then can our scabs fall off, our bandages be removed, our bodies and hearts be free to live fully.  Not as pristine as the original, but whole as our scars entwine us and help us to move again.

http://desertstream.org/living-waters/

College Memories

"Failure. Anyone working toward meaningful change will taste it often. When that happens, the frustration we feel turns inward, and suffocates. Self-loathing and a toxic sludge of shame can follow.

If frustration is the fuel for the engine of change, then grace is coolant that keeps the thing from exploding. When we fail on the path to New, extending grace to ourselves is vital. It is only with grace that we can stand back up and keep walking, smiling and laughing at how we fell."  -"Science" Mike McHargue

Commencement May 2002

I have an uneasy relationship to my alma mater.  I am a college graduate, which makes me proud, but I don't use my degree, which makes me feel bad.  I am an alumni, but not one who is able to make generous financial contributions.  And because I don't have a "job", I don't really need to network or make connections through mixers and alumni events.  But I still read the magazine that comes in the mail and check the emails.  It's how I got this lovely computer that I am typing on.  With that positive experience in the recent past, I decided to accept an invitation to bring my family up to Kent for the annual "Tray Fest" aka sledding down the hilly Front Campus.  This sounded fun.  And since I didn't do social activities when I was actually a student, it would give me the opportunity to create memories with my kids.

But the yucky feelings began as we loaded up the car with gloves and sleds and extra clothes.  I got on the familiar road that I traveled so many times alone, this time with my whole family.  And I felt a sense of dread.  It has been almost 13 years since I graduated, and at least 10 since I've been on the campus.  College was easily the worst few years of my life.  It was a time when I was the least healthy version of myself, when I was chasing all the wrong things and dissatisfied with what resulted.  I lost myself in the crush of brick buildings and well-dressed girls and heavy books and emptiness inside.

Apple Hall girls

Why was my reticence so linked to this place?  I mean, it's not the location that caused my depression or deprived me of friendship.  It's not like anyone actively sought to destroy my happiness and peace of mind.  It was merely the setting, the backdrop of my misery.  I ran through the usual list of regrets, all the things I should have done differently.

Upon arriving, there was a jarring sense of worlds colliding: thirty-something me with kids in tow revisiting where young adult me used to walk.  My irresponsible and immature past overshadowed by the people who depend on me everyday.  And, inexplicably, a fear that no one would talk to me or even say something mean.

Daredevils January 2015

Then my kids worked their magic.  They eagerly climbed aboard their sleds and shrieked and laughed and hollered as they rocketed down a very slippery and very steep hill.  We took turns riding down with them and helping them mount their plastic chariots.  People talked to us, mostly to comment how much fun was being had and how determined and brave the boys were. (They really are. Wow. So proud of these kids.)  By the time our fingers and toes and noses were red and stiff with cold, I was enjoying myself.  I was filled with a sense of nostalgia, remembering the classes I took in the buildings around us.  I found myself wondering if the boys would come back here someday as young men.  I pointed out the places I used to go as we drove around the campus.  I showed them the library and the parking lot that I was only lucky enough to use about four times, as it filled quickly each morning.  We passed the massive gym, "the Rec", and they begged to go inside.  Chris told them they would have to grow older and become students for that to happen.  It didn't fill me with fear for their tender hearts.  I think these kids are going to be okay.  Sure, they will struggle and fail at times, but their struggles and failures will be their own; they won't be mine.

We drove home with french fries and laughter, and I felt my memories reset.  Yes, I could have done things differently...but I know that now, only because of the pain I experienced to learn about myself. Is it fun to be lonely?  NO.  But it helps point me in the direction of healthy relationships.  Is it exciting to feel your mind sink into despair and lose sight of the future?  NO.  But I am grateful for each day since then that has dawned and the life that continues to grow and evolve out of that desperate place.  Is it pleasant to grasp at the pieces of yourself as they disappear and realize that you are left with nothing?  NO.  But sometimes we need to empty ourselves for better thoughts and ideas to take root and grow.  My years in college were miserable, but my college didn't make me miserable.  I was suffering the pains of growing and becoming something new.  And you guys, I love who I have become.  I am so glad to be the woman sledding down the hill with her wonderful boys and laughing with her husband.  I love the friends who surround me and encourage me and redeem all the hurt from toxic relationships in the past.  I'm glad for the distance from who I used to be, and the promise of who I am becoming.

Future student? January 2015

Let me end with a quote from Mikey, who is very eager to plan his future and experience EVERYTHING:  "When my teeth fall out, I get big, and I grow tall, then I can go to the gym and be student at college."

On Community (not the TV show)

It was supposed to be an uneventful morning.  It was supposed to be relaxing.  But who am I kidding, when is my life ever uneventful?  I got the big boys ready and off to school and then it was time to take the littlest one to the library for story time.  We are enjoying these quiet times together and exploring what he likes independent of his brothers and their dominating interests.  But we didn't just play with the trains and sing songs with Miss Renee.  This morning we met Katie and Scotty.  We were minding our business when Scotty came over to play with Mikey.  He had been reading books with his mom, but decided to get on the floor instead.  Mikey didn't want to share, which made Scotty cry and run back to his mom.  I thought to myself, there is something going on there, and moments later she confirmed.  Scotty was recently diagnosed with a Sensory Processing Disorder and his mom suspects further testing will reveal an Asperger's diagnosis.  He just started therapy and there is so much to work on, she said.  I nodded sympathetically.  I KNOW.  And then I said, "My oldest son is on the autism spectrum."  Words I used to avoid.  Words that brought me to tears every time I said them out loud.  But look at me now!  Casually telling this stranger about my special child.   Because we are part of the same community.

She wanted to talk more.  She told me about her family, how they are not supportive, how they undermine her when her son goes there for the weekend.  So I told her, "You are the mom.  You know your child, you know what he needs.  So do it.  It is hard, and sometimes it takes a really long time to see any progress from it.  But you'll do it."  She nodded and said, "I really needed to hear that."  Katie, I KNOW.  I needed to hear it too.  Sometimes I still need to hear it.  There are a ton of different ways to parent, to be a good mom, and you need to trust yourself that the way you have chosen is correct.  You need to be reminded that your son isn't bad, he's just special.  And that means the way you parent him will have to be special.  You will do it because it's your job.  You will do it because, although this isn't the child you thought you would raise, it's the child that you have, and he's amazing.  It gets easier to see the amazing and stop focusing on the problems as you go.

Can I just say how much more desirable it is to be the one saying "It gets better" than to be the one hearing it? This keeps happening to me, these opportunities to meet newly diagnosed kids and their caregivers, and every time it takes me back (almost five years now) to those days of fear.  I treated my son's diagnosis like all hard things in my life to that point:  I hid.  I buried the truth inside and pulled away. Fear and shame have isolated me for so much of my life, and this was no different.  I was afraid of what people would say, how they would treat us if they knew.  But my silence and my secrets have hurt me deeply.  And so finally I took a chance and reached out.  It was around this time that I met Mandy, who is not part of the special needs community, but took me under her wing and brought me to a literal Village who accepted my whole family in a way I'd never experienced before.  And because of these people teaching me about community, about give and take, about showing up with your mess and letting them wash it clean, about forging a family independent of blood or marriage, I can tell Katie what she needs to hear.  I can be the lifeline that I once needed.  I can offer camaraderie and turn a library into sacred space.

Glennon Melton of Momastery.com says that we belong to each other.  This is true of moms, of special needs families, of PEOPLE.  We need each other.  We need all of our experiences, we need all of the answers we have found, we need encouragement and support and a thousand times over we need to LOVE.  If you are in hiding, COME OUT.  We need your story, we need your passion.  And we just might hold the keys that will set you free.

Autism Acceptance

Are you sick of these yet?  Do you feel like sending me some new sheet music so I can play something other than this one note?  I feel that way myself sometimes.  Like, just talk about something else, right?  But just when I start to write a blog about how much I love to binge watch shows on Netflix, my fingers take over and the words come out different.  Because there are other times when I think, Why bother to do this at all if you're not going to do something worthwhile?  If I can't use my words, my blog, my hair to tell people how much I love my kids and how much they should love the kids in their lives, then what am I doing?

You've seen the puzzle pieces, you've read the articles, you wore blue!  You are AWARE of autism.  And, with 1 in 68 children in the US being diagnosed with an Autism Spectrum disorder, how could you not be?  Now that we're all here, it's time to collect your belongings and move on, to that door marked "Acceptance".  Don't just know about autism, ACCEPT it.  Understand that the child you see melting down at the store very well might be suffering a sensory overload, or having difficulty processing the transition from the car to the building.  Realize that the person on their iPad is using that amazing technology as a tool...it enables his family to enjoy dinner at a crowded restaurant, it's teaching him to speak and write, it actually engages a child who might otherwise be withdrawn into himself.  Celebrate when your friend tells you that her 10 year old learned to tie his shoes, even though your own kids mastered that skill at age 5, because development doesn't always come in a straight line.

My family is different from yours...except when we aren't.  We love each other fiercely.  We dance in our living room.  We get on each others' nerves and need time alone to recharge.  My 7 year old has terrible tantrums sometimes, and I am constantly trying new ways to reach him, to help him find his calm.  When I ask him questions, I have to wait patiently for an answer.  Sometimes it takes him years to give it.  He is also gentle and kind.  Did you know that my children only fight with each other about once a week?  That most days, they are in a nice groove, and they give to each other and walk away from each other, that they hold hands without being prompted and sneak into each others' beds to cuddle at night?  Did you know that raising an autistic child has taught me an entirely different way to look at the world, and I'm a better person for it?  Did you know that when you accept someone with a neurological difference, that you start accepting all kinds of other folks: people in wheelchairs, people with Down Syndrome, people with addictions and criminal records and even people who liked the series finale of Lost?  Because the definition of "what matters" and "who is worthy of my time" is completely re-written when you can't project the best image of yourself onto your child.  When you have to accept him for him or lose your mind, because he refuses to be something he's not.  And then you'll be free from that conveyor belt you SO DESPERATELY wanted to live on, and you'll realize it's actually pretty nice here, where time moves at a different speed and success looks so different from how you always saw it.

It's okay if you don't like my son.  Really.  If you spend time getting to know him and decide you just don't care that much about Angry Birds or you like big crowds, it's okay to go in another direction.  Because you took the time.  Because you looked at him and saw another person with feelings and interests and a huge heart.  Because you accepted who he is and didn't try to change him.

Happy April friends.  See you here again next year for Autism Acceptance Month.