On Parenting and Celebrating Autism

I love writing.

For the past several years, I have been blogging about my life, and it has helped me process my ever-changing experiences as a woman, a wife and mother.  It has helped me share my story and connect with other people in a way that face to face conversations can't.  It inspired me to pursue my as-yet-unfulfilled dream of becoming a professional writer.

Expectant Mommy

The two subjects I return to again and again are my faith and my journey as a special needs mom.  Every April, I happily join with the voices around our country and around the world who share what life on the autism spectrum looks like, for those living it and for those caring for someone living with it.  I consider this both an enormous responsibility, to educate the world about my son, and an honor, to share this amazing kid with everyone else.

And I recognize my own limits, the point at which I am unable to write or share, because I am still just another person outside the experience.  I will never truly know what it is like inside my son's head, to go through each day as he does, to see the world as he has all his life.

But, thankfully, his ability to communicate is growing.

Learning the art of selfies

This past year, we have sat side by side and worked through the fourth grade together thanks to online school.  I have been his learning coach, his personal spell check, his cheerleader or his warden (depending on the day), his as needed occupational therapist, and it's been transformational.  I now know SO MUCH about how my son learns best, and I've seen so much more of his personality and thoughts as he completes his assignments.

I was particularly delighted this week that he is learning about writing to a prompt, and loved what he wrote when instructed to write a narrative about a time he played with another child.  After wanting to write about me, I directed him to think of an actual kid, and he chose to write about hunting easter eggs with his brothers.  The next day, the prompt was to share about someone who has made a difference and been an important part of his life.  Of course, I was expecting that he'd want to write about me.  There was a tiny chance that he might write about his beloved Nana, but I was gearing up for a little praise fest at the end of a difficult year.

That is not what happened.

After reading the question, "Who is the most important person in your life?" my son immediately began writing the answer.  He wrote about himself.  And my knee jerk reaction (no doubt influenced by my conceited desire) was to stop him, to make him think about the question again.  Then I realized he was probably right.  The person who has worked the hardest at speech therapy is James.  The person who has made the biggest gains in school this year is James.  The person who has learned to tolerate hair cuts and swallowing pills and loud environments is James.  I know I've made a difference to this kid, but I also know that I don't work nearly as hard as he does EVERY SINGLE DAY to make sense of the world.

And so, although I've written quite a bit already, I would like to share this space with my son, to introduce the next generation of autistic writers and let you all hear a bit from his side of the spectrum.

James is smart and capable.  He is strong.  He can

punch anything.  He is a boy.  He is great at scooter

training.  James has a beautiful brain.  He can love people

and control the body.  He is happy

because he has a heart.

And there you have it.  What is it like to be on the autism spectrum?  What is important to a ten year old boy?  What has made a difference in his life?  There are his answers, written in his own hand (transcribed by Mom), phrased in his own voice.  I look forward to sharing more and more as he is willing.

**Perhaps I'll write another post explaining "scooter training."  My husband and I are absolutely delighted by the hours of free time it gives us in the evening and the uninterrupted conversations we've been able to have because of it.

On Mother's Day or Feeling Halfway

Today marks my ninth Mother's Day as an actual mother.  Since it is a day to celebrate me and all the other women who have birthed or raised children, I feel like the best way to celebrate is to take the day off.  I've devoted my life to my children since the first one arrived, and on this one day a year, I don't want to do dishes or fold laundry or wipe noses or play Candy Land.  I want to go to the movies or sit at Panera and slowly eat a pastry.  In recent years (now that I have friends again), it's been a chance to gather all the ladies I love and go for a walk or eat fried food or peruse the perennials at a local greenhouse.  It's a day to pause and reflect and remember who I am apart from these (not so) little people who call me Mom.

This week has been a challenge, for sure.  I've had all three boys lose their minds over something, screaming and kicking and yelling at me.  (Thankfully, it was all at different times.  I probably would have taken off running down the street to get away from them if it had happened at once.)  I've also had all three boys, at different times, tell me that I am beautiful and wonderful and they love me.  And, more than anything, this week has made me feel as though I am right in the middle of this mothering thing.

Now, my oldest kid turned nine this year, aka halfway to adulthood.  But I'm learning from watching my own mom that having a kid turn 18 hardly concludes the role.  Moms are like the mafia:  in it for life.  However, I am deep in the midst of seeing how this plays out.  We have our books and blogs and parenting experts and mom labels (like "Free Range" or "Helicopter" or "Tiger Mom" or "Hot Mess") and we are throwing our weight behind the importance of breastfeeding and limiting screen time and encouraging our kids while exposing them to the world, protecting them while also pushing them out of the nest.

After the week we've had, I admitted to a friend that I just don't know.  I don't know if I'm doing anything right or if I'm making all the wrong choices.  Am I disciplining the boys like I should?  Am I too permissive?  Am I pointing them in the right direction so they'll become capable and responsible adults, or am I missing moments to impart serious life lessons?  Or, am I completely missing the point?

We are in the middle of our journey together as a family.  We've left the starting point, we are down the road, we've come too far to go back.  But we haven't arrived anywhere.  We haven't reached the point where we see clearly.  Our children are partially formed lumps of clay, sometimes looking worse than before it all began.

On my Mother's Day hike today, we climbed a structure a few stories high.  We were surrounded by trees, and part of the way up, all I could see were branches and leaves.  But when we reached the top, it was the most gorgeous view.  Sunny and verdant and picture perfect.  Looking down from the top, I could see this little pond we'd passed earlier, the vista of trees we'd walked through at the beginning.  And I can't help but feel like this moment in time is in the midst of the climb.  I can't see the forest for the trees.  I have no idea how my children will turn out, how much will be my fault, or if any of it will trace back to this exact week.  (Let me interject here:  I doubt it.)  I just have to keep going.

May these words ring true, not just for me, but for each of you.  Stay the course.  Keep showing up for your kids.  Refrain from joining them on the floor during their tantrums, or matching them shout for shout.  Keep making the sandwiches and reading the stories and folding the clothes and reminding them to wash their hands.  Keep modeling respect and honesty and hard work, and pray for them every day.  And don't forget your Mother's Day ice cream sundae.

Back to School

My kids head back to school next week.  Now that the supplies have been purchased and the calendar is marked, I find myself thinking back.  Remembering five years ago, the battery of tests (and isn't that a great phrase? because I remember feeling quite battered by the time it was all over) our son went through just before his third birthday.  All the forms and interviews and professionals that we visited, all pointing to one thing...an Autism Spectrum Disorder.  Although I remained unconvinced, desperately trying to find the reason why my son fit into the autism category when what going on with him had to be something else, anything else, something that we could fix in a day or a month or a year but not this word, this lifelong label.  Knowing that if his brain was different that it wouldn't be a quick fix and back to life as usual, but years of IEP meetings and speech therapy and adapting, because doctors can fix broken bones and teachers can make children literate and parents can give their children love and nutritious food and a safe home but no one can change a person's brain.  So I listened to the experts and held firm to my belief that I could figure this out, I could solve the mystery of what was going on inside my child.  In the meantime, I would follow the advice that everyone seemed to agree upon: enroll James in an early intervention preschool and begin speech therapy.

Preschool Graduation

I remember visiting the preschool, meeting the teacher who would have James in her class for two years, and I remember so vividly the fear.  My son was essentially non-verbal, and they wanted me to drop him off with these people for three hours a day.  How would I know what was happening to him for that period of time?  There was no way he would be able to tell me.  And they said they never physically disciplined children or locked them in closets or left them unsupervised, but of course they said that because it's illegal.  But the reason why we have laws against those things is because they have happened in the past, and what's to stop a preschool teacher from going power mad in a room of 3 and 4 year olds with developmental disabilities and sketchy communication skills?  I lived with this anxiety for a few weeks, as we prepared our son for school and more so after we dropped him off the first day.  What it basically came down to is a lack of trust.  I know how much I love my child, how powerful the desire to nurture and protect him is.  But I didn't believe that anyone else would feel the same way when they looked into his big hazel eyes and held his chubby little hand.

They might save the world, but today their mission is CANDY!

I still don't know how that year went for him.  I have no idea what he thought of school, how he was treated by the staff and the other children, what he learned and what he wished was different.  All I know is that he kept going.  That he quickly stopped crying when I brought him to the door to drop him off and that he smiled when I came to pick him up.  That the boys in his class called him "Little Screamer" and attempted to hoot and squeal with him, thinking that was his primary language (in a way, it was).  That he frequently hugged his teacher and occasionally brought home art projects that he had made with assistance.  That his teacher did a unit on the story books of Mo Willems because James loved the Pigeon books and Knuffle Bunny.

It continues to be a guide to me, watching my son for signs of happiness or distress.  It is the best indicator of how he is being treated when I'm not around, if the time has come to withdraw from a place or activity or if it is okay to continue.  I know he loves his swim lessons, because we passed the exit recently and he told me to turn around and go back.  I know he had a good time at VBS because I came to pick him up and he was dancing to the music (Let me pause here and say that beyond the baby booty shaking to Elmo songs, James does not dance. Ever.)  I know he has found a good friend in Ian because he gets excited when he comes over and willingly shares video games with him.  I know he is surrounded by caring adults at church because he hugs them and sits with them and remembers their names.

And then, this summer, he shocked me by doing something new.  We spent the fourth of July on a riverboat cruise of Pittsburgh, which the kids LOVED because it was water and boats and they drank Sprite and it really doesn't take more than that to delight them.  We were on a walk later and James turned to me and asked, "Mommy, did you like the boat ride?"  I felt like kneeling and kissing the ground, or picking him up and twirling like Maria in "The Sound of Music".  It was a huge development, and it's something he's never done before.  But I kept my mom cool and I answered his question and then asked if he liked it.  He responded and there we were having an actual conversation about what we did that day.  It happened again a few weeks later on a more mundane summer day, but we talked back and forth about what we liked and what we did and I got to hear in words how my son feels.

First day of 2nd Grade

My kids head back to school next week.  Now that the supplies have been purchased and the calendar is marked, I find myself thinking ahead.  What will James experience this year?  How much will he be able to tell me about afterwards?  Yes, his brain is different, and our lives involve IEP meetings and speech therapy and adapting, and there is no way to change a person's brain.  But this kid is surrounded by people who love him and help him learn and protect him.  And there is no limit to what he will do.

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.

On Breaking Things

I never knew just how breakable the world is until I became a mother of boys.  It began with their births, the way my body had to break open to get them out, the stitches and staples and other random office supplies used to piece me back together.  There were a few months to recover, with noisy and greedy nursing being their primary activity each day and the occasional diaper blowout the only mess I had to clean up.  But then they got mobile.  Before their first birthdays they were pulling down the Christmas tree and chewing on books, throwing toys and falling down.  Then there were the shoes that went missing, never a whole pair, but just one shoe gone.  There were toothbrushes flushed down the toilet and bars kicked out of the crib.  There were broken dishes and broken furniture and makeup that was chewed and spit out.  I fully expect that one of these days our house will just collapse in on itself like a dying star from all the breaking.

What a shock to the woman who still has clothes from high school (and middle school), whose books appear pristine after decades of reading, who tenderly places photographs in albums to preserve her memories.  What unexpected chaos and destruction when we added these little monsters people to our family.  We agreed on a saying, "Nothing we buy is worth more than our kids," (also "Never be worth more dead than alive" see A Perfect Murder with Michael Douglas and Gwyneth Paltrow.  These are words to live by, people.), but sometimes I forget that when I see them throwing toys near the tv or playing with my computer.  Money is tight from replacing the essentials, not leaving much to replace our grown-up toys.  Or when a carton of eggs accidentally (or not so accidentally) gets broken on the kitchen floor and I find myself on hands and knees mopping up goopy membranes and multicolored shells.  Or when a body slams into a wall and a picture comes crashing to the floor, shattering glass and ruining the frame.  Then it seems harder to remember that these little people are the greatest blessing in my life and raising them will be my greatest accomplishment, hands down.

Jesus teaches his followers not to store up treasures where moths and rust can destroy, where thieves can break in and steal.  He should have added a special note for parents:  just don't love any thing because your children will break it.  This includes your body.  This includes their bodies.  Because they are just as careless with themselves as they are with everything else.  They run into walls and trip over imaginary obstacles.  They come within an inch of death on a good day just by moving around and living in this dangerous world.  Perfection and wholeness are not going to be part of our lives as we parent our sons.  There has to be something else, some other treasure worth building.  "But store up for yourselves treasures in heaven....for where your treasure is, there your heart will be also." (Matthew 6:20-21)

What is a heavenly treasure?  How can I acquire something in this life that will be waiting for me on the other side?  That's all Jesus has to say before moving on to other instructions.  He warns people to serve God instead of money and not to worry about what you wear or what you eat.  So here's what I think:  it's not about our stuff, it's about our people.  The purpose of life isn't to build a great house and decorate it with the fashionable and expensive things money can buy.  The purpose of life is to build a home, a place of refuge and protection, a welcome to anyone who passes through the door.  I shouldn't focus on accumulating more stuff, better stuff, because stuff will go out of style (if my kids leave it alone long enough).  I should be collecting people, seeing the hearts beating underneath the clothes and loving the crap out of them.  I should be inviting them over, not worrying about wear and tear on the couch or how much food they will eat.  And I should start with my boys.  Nothing they can break will cost as much as breaking their hearts or breaking their spirits with harsh words and hurtful hands.

So go ahead.  Jump on the couch.  Spill your drink.  Slam the door.  Break a toy.  I will roll my eyes and be thankful that you are here, thankful for each reminder that none of us is perfect.

A Safe Harbor

Nine years ago, I was studying.  It's kind of my go-to thing, when life is changing or a big test looms. No wonder Hermione is my favorite Harry Potter character; her motto is "When in doubt, go to the library."  Nine years ago, life was changing and a big test loomed.  The biggest test, maybe.  I found out I was pregnant and expecting a baby.  And so I turned to books, which had helped me so often in the past.  Except for that blip my first year at college (when I made what my dad likes to call "the Dean's Other List" aka academic probation), I was an honor roll, AP class, straight A student.

Of course studying for motherhood didn't quite work as well as it does for French class, but it didn't hurt.  Most of raising children seems to be hands-on, learn-as-you-go kind of stuff.  But I remember many things that stood out from my reading.  There was some good stuff about mothers and fathers working together and celebrating their different approaches to parenting while agreeing on an overall vision of childrearing.  There were some memorable phrases like "Back to Sleep" and "Breast is Best" that became battle cries over the following year.  And then there was this:  "A mother is like a safe harbor to her sons."  I remember reading it (although I can't remember who wrote it) and turning to my husband, who grew up with only brothers, and asking if that's how he felt about his mom.  He thought about it for a moment and said, "Yeah, I guess that pretty much sums it up.  I know my mom will always be there for me."  So I tucked it away for future reference.

As it turns out, I am now a mother of three boys.  I had a daughter for 8 months last year, but for the long haul testosterone is king and all my kids stand up to pee.  And I have heard that phrase reverberating through my mind over the past nine years.  A safe harbor.  A place of still waters and docks for boats to anchor.  A place where sailors can rest and refuel and restock before heading out again.  I am finding it to be a very true picture of my role.

The goal of parenting (or a goal, or maybe my goal?) is to raise little people to send into the world.  If we do it right, our kids will head out and start lives of their own and live in their own homes and start their own families.  Some day it will be just Chris and I in this little house, with no fingerprints on the windows and no Hot Wheels under the table and just two toothbrushes in the bathroom.  Our boys will be like ships in the ocean, or perhaps little canoes exploring mountain streams.  They will set off to seek adventure and fortune and love, and I hope that they find it.  And I hope they know that they are always welcome to tie their boats up at my dock, to come home for rest and food and hugs.

But even now, I see how I am functioning as their safe harbor.  Each day they go out in some way, they go places I can't follow.  They go to school and church, they play with friends and visit family.  We get very few guarantees in life.  What is that expression, death and taxes are the only two things we can count on?  Happiness isn't guaranteed.  Neither is safety, or friendship, or comfort.  I can't promise that they will find good things when they head out our front door.  I can only be there, waiting to welcome them home, ready to love them and listen to them and reassure them that they matter.

I had no idea when I read about being a safe harbor that I would become the mother of a son on the autism spectrum.  I didn't know the challenges he would face, the barriers he would have to break, the tests and the evaluations and the meetings we would endure.  I had no idea how much work was in store for both of us.  And I had no idea that through it all, when the speech therapists were asking him questions he couldn't answer and the doctors were looking into all the nooks and crannies of his body and the world was just so loud that he would come to me.  I had no idea that my arms would be his source of comfort, that my whispered words would make him safe, that my hands placed just so over his ears would protect him from it all.  I do it all, gladly.  But boats aren't meant to stay docked.  They are meant to sail through the waters, whether they are stormy or calm.  So I am a refuge and a push forward as needed.

I had no idea when I read about being a safe harbor that I would adopt a little boy who didn't grow inside my body.  I didn't know that I would go to the hospital and bring home a baby whose other mother had gone home empty-handed.  I had no idea that I would fall deeply in love with someone I'd never met, that just looking at him asleep in that plastic bassinet would bind my heart to his, that our family could grow from 4 to 5 in a matter of seconds.  I had no idea of the feelings that followed as our son's fate was decided by judges and social workers, the uncertainty and the fear and the hurt.  And I had no idea that we'd journey down a path that still seems to be shrouded in darkness, the choices we would make about finding his first family and reaching out to his sisters and grandparents.  I had no idea that there would be so many people who loved our baby and reached out to hold him, and that always he would look back to make sure I was there.

I have no idea what the future holds for my sons, no way to divine whether they will find love and acceptance outside of our home.  All I know is who I am, who I will always be.  A safe harbor.

Because It's Just a Phase

I went out for a date tonight with my husband.  It was sunny and cool and I was hungry, so we went to a restaurant and talked about the big stuff and laughed about the little stuff and shared our food with each other and held hands.  And somewhere between the mozzarella sticks and the ice cream I started thinking about my friends, so many of whom have become parents this past year.  I was thinking about you all and wondering if you're having trouble getting out of the house and leaving the baby with someone else.  (Maybe you are the one having a hard time, maybe the kiddo is screaming when you pass her off to Grandma, maybe it's a little of both.)  Whew, I remember those days.

First-time parents, 2007

I remember when James was just a month old and my parents came over at dinner time and they said, "Leave the baby with us.  Go meet Chris for dinner."  See back in those days, my husband took classes in the mornings and worked all afternoon and came home around 11pm.  I had just stopped working to take care of the baby and didn't really know what I was supposed to be doing all day.  (I watched old seasons of Gilmore Girls and read novels and took the baby for a walk most days.)  So with my parents pushing me out the door, I headed over to my husband's work and met him for his dinner break and we went to Taco Bell and stared at each other until finally he said, "This feels weird."  Because it had been just the two of us for a while, we'd done this plenty of times, but now we were three, and it felt strange to be without the baby.

First Father's Day, 2007

Those early days of parenthood are around-the-clock marathons of giving and sacrificing and bonding so intensely with this new little person.  And it took months, no--years, for us to be able to walk out the door without our little kid screaming and crying and chasing after us.  There were times when I changed my mind about leaving.  Times when it just didn't feel right, I didn't trust the person who was supposed to be taking care of him, so I didn't go.  But there were other times when I knew he would calm down and have fun, I just had to leave and let him realize that other people could take care of him for awhile.  I needed to realize that other people could take care of him too.

Imaginative Play, 2013

But tonight...the boys were invited to come make cookies with Nana, so we loaded up the car.  Everybody grabbed their shoes and socks, and with a little help from us, we were all ready to go.  We pulled in my parents' driveway and there were squeals of delight from the back seat.  "NANA'S HOUSE!!"  I got out of the car, but the kids were already through the door and shoes were off again and by the time I walked inside, they had all dispersed to different corners.  I said a quick hi and thanks to my mom for the opportunity to go out, and as I turned to go, Mikey came running around the corner.  "Hey buddy, I'll see you in a little bit!" I said.  "Okay Mommy, bye bye!" he called over his shoulder as he kept running.

Birthday Bowling, 2014

And it hit me.  You guys, it's just a phase.  Those days of guilt and ambivalence and crying every time you leave...it doesn't last forever.  Those summer afternoons of breastfeeding and napping and bleary-eyed everything.  Those days of camera constantly in hand to document all the amazing, breath-taking NEWNESS.  Those frustrating hours when you just want them to sleep a little so you can look at Facebook or read a magazine or take a shower.  Those moments of doubt when you're sure you're getting it all so very wrong because it just doesn't look like how you thought it would look, your kid doesn't seem to be doing all the stuff the other kids are doing, your hair is messed and all the other moms seem fashionable and put-together.  It's just a phase.  I promise you, just keep going.  You can get through this day and this hour and this moment.  You can do this!!  You are the only person uniquely qualified to care for this little person.  To him, you are the master of the universe.  You control the weather and you make the food and you carry him around and your smile is like seeing the face of God.  And it won't last forever, this 24 hour caregiving.  There will come a day when you drop your kids off at the grandparents' house and they barely notice you leaving.  There will come a day when they walk to the playground with their brother or a friend and you stay behind.  There will come a day when they start reading books to themselves at night while you sit in the other room.  And those are all good things.  Because it's just another phase.

Spreading His Wings, 2014

On Memory and Mystery

I was looking through photos on my mom's flash drive the other night. (The full story is that she loaned me the flash drive months ago to print some pictures for Christmas presents, and I promptly lost it, was unable to give the presents at the appropriate time, and my husband just found it the other night while digging through the couch cushions for the TV remote that we lose every other day.  There.)  This is what she takes pictures of: her grandchildren, flowers people send her, scenic views from trips she takes, and her grandchildren.  I was delighted at the photos of my boys spanning several years.  Sometimes I forget in the hustle of our days and the thinning, almost-pre-adolescent faces that they were each babies.  I forget about their wispy blonde hair and chubby cheeks, the stumpy legs and tiny clothes.

New baby, New Daddy March 2007

Matching jammies, Christmas Eve 2010

Elmo's World!

I paused at the pictures of James, the preschool years.  Part of me "aww"-ing over his cute baby face, but part of me remembering.  I was the person who knew this child best, after spending each day with him, but even to me, he was a mystery.  I spent so much time deciphering gestures and hoots and squeals.  I watched him so closely after the doctor gave him the autism diagnosis, searching for any clue that he'd been wrong, and equally wondering if maybe he was right.  Were James' needs met?  I think so.  But I couldn't be sure; even now I'm not certain if I chose well or completely missed the mark. (Maybe he'll tell me one day.  Kiddo, I'm listening, I promise.)

"James is flying!"

My balloon boys, Fall 2010

Dressed as his second favorite food while collecting his third favorite food
Halloween 2013

I know he liked to be outside.  This was evident even when he was a month old.  Something about stepping through the door from the closed-in, warm house into the chilly spring night air calmed him.  I know he liked to watch Elmo.  From the first time I popped an Elmo's World DVD into the player and that high-pitched fur ball began to speak, my son was riveted.  He quickly figured out the symbols on the machine for play, open, skip.  I regretted exposing him to it when I lost the ability to watch my own shows and movies during the day (a right I am just now regaining...everyone has to be quiet and go play somewhere else so Mommy can watch Downton Abbey!).  James was also a fan of simple $1 pleasures.  A small fry from McDonald's...and OH BOY if we didn't stop at any of the four we passed on the way to speech therapy, I heard about it from the backseat.  Not in words (hence the speech therapy), but his point was clear.  A red balloon from the grocery store...how our trips were transformed from short-term family torture to quick and *almost* easy when we tied that balloon to the front of the cart and plunked him down in the seat.  He would stare up at it, pull on the ribbon, watch it float back up.  I can't even remember when we stopped doing that, when he no longer asked for it by halting and gazing longingly behind the floral counter.

I have heard grumblings in the autism community against the use of the puzzle piece to represent the disorder.  I think one of the points is that a puzzle represents children, who only make up a small percentage of people living with autism (clearly people who haven't done a 1000 piece puzzle like the one I helped my parents complete in December).  But mostly I think it's that the metaphor doesn't hold up.  See, when I do a puzzle, I start out with all the pieces, and the goal is to fit them all together correctly.  When that is accomplished, I have a finished puzzle.  I can see the image clearly, and I'm done.  I used to look at James like a puzzle to be solved.  I was flipping them over, searching for edge pieces, grouping the greens and the purples and the reds and the whites.  I rearranged the pieces and changed my seat and sat back with a cup of tea, desperately hoping that a change in perspective would make a difference.  Lately, Autism Speaks has tried to promote this idea that something is "missing" in autistic people, autism research, the elusive autism answer.  If my son was a puzzle, then that would seem likely.  If my son was something to be figured out, if he would someday be a clear and complete picture, then I would agree that some of the pieces must have fallen on the floor or been eaten by the dog.

My boys: Mikey trying to be like his brothers even though his balance is not as good as theirs,
Winston sitting in the middle not needing his parents' touch
James taking refuge in my arms from the heat and the photo session

But I tend to side with the autistics.  I no longer see my son as a puzzle, nor is it my job to solve him. Instead, as I look back through these photos, I think of a mystery.  Isn't every person a certain amount of mystery to those around them?  What secret memories do they hide?  What unfathomable depths form their soul?  What are they thinking when they tap their chin, look out the window, at this very moment?  The best part of any relationship is unraveling the mystery.  And that's what I am doing with my son.  The little boy in those photos has a terribly choppy buzz cut, because he shrieked so loudly and protested so vehemently every time we took him to a hair salon and the lady approached with scissors, that I started cutting it myself.  It would take a long time, sometimes even an hour, but if I perched him on the bathroom sink and let him splash naked in the water, he would hold his head still-ish for me to buzz off the overgrowth of hair.  It wasn't always easy for me, but it was the only solution I could find.  I don't cut his hair anymore.  Now we look through "Going Places" on the iPad and talk about what is going to happen and then we walk into the hair salon and he sits in the chair and plays some version of Angry Birds and holds relatively still for about 10 minutes while the lady quickly cuts and trims.  And after 10 minutes he begins to squirm and slide and removes his cape and tells me "All done Mom" and I tell the lady "Good work, we are finished" whether she thinks she is done or not and we pay and leave.  Oh, and he gets a sucker.  I fully expect that in another five years, hair cuts will look different from now, just as now they look different from five years ago.  Because unlike a puzzle, a mystery has the ability to change.  A mystery is a fluid, ethereal secret.  A mystery has no end date, no final picture, no completion.  As soon as one question is answered, a dozen more need to be asked.  Sometimes we have to just accept that we can't know everything.  But I understand that there is no easy, pleasant bumper sticker picture to accompany calling our loved ones a "mystery".  Maybe a door?  Or an image from the Hubble telescope of space (I know James would like that one)?

On Letting People In

James at school

We are revising our son's IEP this week.  It's been five years now that I have been attending these meetings, ever since we wrote the very first one a week before James turned 3.  It's been a journey, to say the least, for our family, navigating the world of autism and special education, and it's made me aware that I am a wall-builder. I have barricades and closets and vaults to keep all of me in, and everyone else out.  But I've been learning these past few years about how amazing it can be to have a community, to have people that are inside the walls.

My initial response upon realizing that my son was different was my tried-and-true coping mechanism of shutting down and shutting out.  I took a lot of blame on myself, and spent long days wondering how I got it all so wrong, how I didn't adequately teach my child how to talk and dress himself, and how could I be trusted to continue raising him and the baby brother who was learning to walk at the time.  I researched speech therapists and attended meetings at school and read books and spent too many hours studying my children, expecting the answer to fix all this to appear.

What I learned is there is no answer or quick fix.  This life is one that requires more of me than I was expecting to give.  But I've learned how to do it.  A big part is sharing the load and letting others in.  The first person I needed to let in was my husband.  In many ways, I had kept him at bay with most of my sensitive areas, and our son became one of those sensitive spots.  I was the parent at home, so it made sense for me to be the one taking James to appointments and filling out paperwork and attending IEP meetings and conferences.  When James was in kindergarten, I came down with a bad case of strep throat the day before the IEP meeting, and my husband had to stay home to take care of us.  I whispered hoarsely to him that he needed to take my place at school, to sign the papers so James would be all set for the next school year.  He looked at me blankly and asked what was going to happen at the meeting and what the IEP was.  I realized I should have kept him in the loop better as I tried to explain with as few words as possible what he needed to do.  I wondered why we hadn't tried to get a sitter so we could both attend these kind of meetings together.  Until that day, I'd carried the burden of helping our son on my own shoulders, but it made me see how much better it would be to share the responsibility and decisions.

It was around this time that we were becoming involved with our Village at church, the people who hold our family so tenderly and support us so completely.  It took a huge leap of faith on my part to share my life with these new people, to trust that when I opened up, they would be able to handle all of our touchy areas with kindness and love.  These days, we have ample opportunity to let people in.  We don't even have to leave our house or get dressed to announce big news and start conversations.  But the problem with social media is that sometimes we don't guard the doors properly.  Some people shouldn't be inside the walls.  Some people aren't safe enough to handle our tender parts.

It reminds me of the book "Generation Ex" written by my friend Jen Abbas (now deJong).  In it, she describes different levels of friendship and trust.  She calls the groups Multitude of Acquaintances, Fellowship Friend, Comfortable Confidant, and Accountable Advisors.  These groups begin to shrink in size from the very large and impersonal (the "Multitude") to the very intimate few (the "Advisors").  This concept has always been a bit challenging for me, since I spent most of my life keeping everything important to myself.  As I've been opening up more, I still have to remind myself to keep certain trusted people inside the walls, and everyone else rightfully outside.  I want to be an honest person.  I want to be truthful and open.  So now I tend towards overshare versus secrecy.

I know I need to learn the balance in what is okay to share and what isn't, especially as a wife and mother who blogs.  I love looking through past years that I've written about; it's a chronicle of what our lives were like then, and an interesting comparison to what has changed.  But stories are mine to tell when my life intersects those of my children?  What will hurt or embarrass them in the future, since what is posted online lasts forever?  At what point does my need to discuss something that I'm feeling or experiencing get trumped by their need for privacy?  One step I've taken lately is to share funny or gross stories in person with people I see regularly rather than posting them on Facebook.  It's more likely these tales will be forgotten when they are only heard by a small group of friends.  I'm also trying to take the advice of Glennon Melton, of momastery.com.  I heard her speak in May, and she addressed this issue as it pertains to her family.  Glennon is a self-proclaimed "truth teller" and her own life is an open book on her blog and in her book "Carry On, Warrior".  Her advice was to stick to our own personal journey as much as possible and to use good judgement when crossing into another person's journey.  Of course, there's always the advice of St. Anne, "If people wanted you to write warmly about them, they should have behaved better."  (This one doesn't seem appropriate for kids, since they all behave terribly at one point or another, and that's just the nature of childhood.  Side note: I really hope at least one of my kids writes about his childhood.  I'm curious to see what role I'll have.)

I write frequently about how my son's autism diagnosis changed everything, in many cases for the better.  Finding the right balance of letting people in and keeping others at a distance definitely falls under the "for better" banner.  We are a work in progress, but work I'm glad to have each day.  Without these little people, I imagine my life would have been less colorful and open.

I'm including this video from Ted talks about "coming out of the closet" because it is a universal idea that is worth sharing in the context of opening up to the people who will help carry our burdens.

Autism Speaks Doesn't Speak for Me

A few years back, I signed my family up for our local Autism Speaks fundraiser walk.  I was looking forward to an activity we could all do together, surrounded by people who wouldn't think us odd or unruly.  I was happy to raise money and encourage my friends and family to do the same; after all, Autism Speaks was the only organization I'd heard of for people like my son, recently diagnosed with an Autism Spectrum Disorder.  We arrived on the morning of the walk, a sunny Sunday that was perfect for spending time outside at our local park.  We converged with many other families.  We saw large groups wearing matching shirts; we saw men dressed as superheroes and women dressed as princesses.  It was my first experience with an autism community after an isolating couple of years filled with tests and questions and frustration.  I kept looking around in wonder that there were so many people like us, that we had found a place where our son could be accepted easily.

Wearing blue as we walk for Autism Speaks 2012

There was something else I noticed that morning.  The walk organizers had posted signs along our path announcing statistics about autism.  There was one stating the latest CDC findings of autism occurrence.  There were signs about the cost of treating autism.  It was good to remind us why we were walking.  It was good to spread awareness among the walkers and anyone else out that morning.    But I got uncomfortable when I saw the sign comparing autism to pediatric cancer and AIDS ("More children are diagnosed with autism than pediatric cancer and AIDS combined.")  After all, autism affects my son's mind; it makes him process information differently.  But cancer and AIDS...they affect the body.  They make children sick.  They require lengthy hospital stays and expensive medication.  And they are lethal.  Autism will never take my son's life.  A lack of support and understanding by strangers could very well put him in danger, something that has happened to autistic teenagers and adults who have been unable to communicate properly with police officers and other public officials.  Beyond that, I am thankful every day to be the mother of healthy children, to be able to send my kids to public school, to barely give cold and flu season a passing thought.  The comparison of neurology and immunology seems ridiculous.  Then I saw some walkers carrying signs which demanded a cure.  A cure?  For autism?  Therapy, sure.  Assistive technology to bridge the differences between my son's mind and the neurotypical world in which he lives, of course.  But what would we be curing?  If some medication took away my child's autism, what would be left?

I went home feeling unsettled, but not sure what it meant.  Over the coming months, I learned more about the organization we had been supporting for our walk.  Autism Speaks.  What a great name.  For the confused and desperate parents trying to figure out how to best care for a non-verbal child, what a promise it offers!  They state on their webpage that their goal is "to change the future for all who struggle with autism spectrum disorders."  That's something this advocate mama can get behind. But how are they actually doing that?  What percentage of the money raised from walks like the one my family participated in is being used to alleviate the "struggle" of autistic individuals?  I read a book called "Raising Cubby", which introduced me to its author (and awesome role model for my son), John Elder Robison.  The book offered insight into the experiences of growing up autistic, the criticism and confusion he experienced, as well as the jobs and discoveries his mental makeup allowed him to excel at.  And then I read his blog about resigning from Autism Speaks after his efforts to be heard were repeatedly ignored.  He writes, "We do not like hearing that we are defective or diseased.  We do not like hearing that we are part of an epidemic.  We are not problems for our parents or society, or genes to be eliminated. We are people."  This resonated with my feelings after the walk; this put words to the twist in my stomach.  My son is not sick.  My son is not a problem or a burden.  And an organization that describes itself as changing the future for autistic people shouldn't be misleading the public about what exactly they struggle with.

I found more perspective on my beloved Diary of a Mom blog.  I read her words and nodded.  Yes.  YES.  This organization that compares my son's brain to an immunodeficient body is missing it.  They are missing what it is like to live with autism.  They are missing what is going on inside that beautiful brain.  This organization that claims my son is a burden is missing it.  They are missing the joy we experience every day as a family of five.  They are missing the laughter and chatter coming from the bedroom he shares with his brother long after the lights have been turned off.  This organization who claims that my son is MSSNG, or that he is MSSNG some vital component of humanity, they are missing it.  They are missing the vital presence of autistic people.  They are missing the conversation autistic advocates are desperate to have.  They are speaking, but they don't speak for our family.  They don't speak for my son.  

He is learning every day, he is gaining words and the skills to express himself.  We are equipping him to speak and stand up for himself.  And the greatest opportunity we can give him is to listen.  That voice, oh how that voice delights me.  If he's angry, he tells me.  And I want to know: Why are you angry?  What do you do with those feelings?  What can I do to help you?  If he's happy, he tells me.  And I want to know: What makes you happy?  What can I do to make you feel happy more often?  And sometimes he just laughs.  I don't know why, it's something that only he is seeing or hearing.  So guess what I do?  I laugh with him.  It doesn't really matter what's causing it, honestly.  I love an excuse to let out a good belly laugh.  And then he looks at me, as we laugh together, and often he hugs me as we experience this happy moment.

So this is my plea, today and every day:  Don't support Autism Speaks.  Give your money to an organization that will actually use it to help autistic people right now.  How will you know which one is doing that?  Use this guideline, shared so generously by John Elder Robison:

"What we need right now are therapies to help us be the best we can be, as we actually are.  We need tools to help us overcome physical limitations.  We need solutions for the medical problems that plague many people on the autism spectrum.  Those are things autistic people – child and adult alike – want and need right now.  The range of therapies, tools, treatments, and services needed is long and varied – and largely attainable, given the budget and the focus.

We also want societal change and acceptance.  We want sensory friendly workplaces.  We want jobs shaped to our different abilities.  We want help navigating the education and employment mazes.  We want to be productive members of society.  Those too are things we want and need right now.  They too are attainable given the resolve, budget, and legislation to back it up."

On Thanksgiving and Giving Thanks

It was Thanksgiving yesterday.  The day we welcomed our families into our home.  The day we turned the kitchen into a room where adults could eat and talk and laugh and give thanks.  Not the room where peanut butter and jelly sandwiches are made, where pictures are drawn, where board games are played, where junk mail piles up week after week.  We did some actual work to transform this room, but mostly it was smoke and mirrors.  It was "Nobody go upstairs."  It was a time to pretend it always looks that clean.  We said our thanks.  For the support of friends.  For employment. For a year of sobriety.  For family.  For health.

This year, I feel thankful for so much in my life.  For the marriage that is about to celebrate its 10th year.  For the children who continue to grow and change and occasionally offer hugs and kindness.  For the house that keeps us warm and together.  For the friends who actually support me and encourage me.  For the new pastor at our church.  But mostly I'm thankful for all that has changed since last Thanksgiving.

Last year at this time we were a family of six.  Two of our members had spent a total of 7 days in the hospital.  Our cupboard had filled up literally overnight with several new prescriptions that we were still learning how to administer.  When the preschool teacher asked our son what he was thankful for, he burst into tears.  Life had been reduced to figuring out how to get through each day.  There was nothing beyond today, no long-term projects, no plans for the future.  This was especially hard for me, as I am a planner.  I like to look ahead, to be working toward some larger goal.  But I was overwhelmed by each day's needs, only able to think about how to keep each child alive until bedtime.  And even then, I lurked outside doors, I listened to the little breaths, I wondered if they were coming too fast or too slow or too shallow or too raspy.

Life became very narrow.  There wasn't time to discuss, to argue, to talk things through.  And so we put it off.  There wasn't time to fix, to replace, to repair.  And so we put it off.  There wasn't time to rest, to recuperate, to be restored.  And so we put it off.  There was barely time to eat and bathe and wash and read and brush and hold and drop off and pick up.

This is not to complain.  It was what we signed up for, it was what we were promised in those foster parent meetings and trainings.  This is just to explain that it was hard.  That it took everything we had.  It wasn't all bad.  There were many moments of love and understanding and so much growth, the kind that comes from months of difficulty.  I was reminded of the importance of scheduled rest, of intentional nights off, of friends who will step in to carry the load.  I learned that my frequent response to stress was (is?) to withdraw, to hide out with a bar of chocolate and a good book (or a trashy show on Netflix).  And I took steps to make life more sustainable and less draining.

When the call came that our little Girl was leaving, I spent days in tears.  In the busyness I hadn't realized just how attached I had become, just how much I loved this little one who required so much from me.  And after months of feeling as though I had shouldered the burden of our family, of needing to be strong and to keep going so that we didn't all just fall apart, I found myself done, exhausted, unable to maintain the exterior calm.  She left; I cried.  I fell asleep on the couch, in the boys' room, in a lawn chair.  I searched for the energy to cook, to clean, to do anything really, but my reserves were spent.  At the point when I had to say, "I just can't...", my husband stepped in.  He let me sleep.  He made meals.  He rounded up the kids and took them to the park.

This is how life has gone since then.  First, we had to rest.  Like literally sleep.  We had to say No to some things we really wanted to be part of.  I read a huge stack of books.  We had conversations with our kids about why the Girl was no longer living with us.  Next, we had to relearn how to be a family of five.  We couldn't go back to who we were before; we had to learn who we had all become.  We had to stop buying so much food.  And finally, it was time to catch up.  It was time to address all that had been put off.  We had to reconnect in our marriage, we had to reconnect with our kids.  We had to prioritize those home repairs.  We had to clean out those boxes, that room, that closet.

As the holidays approached, I began to feel once again like an equilibrium had been restored.  The kids are doing well in their new schools and new grades.  They are tackling new responsibilities and developing new interests.  I feel like I am once again able to be the giver in my relationships, able to connect with my friends and my husband instead of beginning every conversation with all that is hard in my life.  We finally fixed that drawer, that leak.  Maybe we will even be able to say that we are preparing for what's next instead of catching up with what was left undone.  I'm still reading a few new books each month.  And my days became rapidly easier as school began just a few weeks after the Girl left, and I am left with one child at home.  It felt selfish at first, all this time for myself after doing so much for everyone else.  But rest assured, I enjoy it now.  I am renewed in the afternoon quiet.

Some families stay open immediately after a placement leaves.  Some parents are ready to jump right back on that horse.  As Amy Poehler says, "Good for you, not for me."  We have needed these months of restoration.  We are once again strong, we are once again comfortable.  Perhaps we are now ready for a new challenge.

We are blessed with an abundance for which we give thanks.