On Art Imitating Life

I started watching a new show on Netflix this past week called "Atypical."  The show's premise, which intrigued me while at the same time making me concerned, centers on a family whose teenage son is autistic and desires a romantic relationship.  The eight episode season follows not only Sam (the one on the spectrum), but his sister, mom, dad, and therapist as they each navigate the challenging relationships that are part of any full life.

Mostly I don't talk about TV or do reviews of shows on my blog, because there are plenty of entertainment journalists who (in my opinion), do this so much better.  And I've read a few articles about "Atypical" in between streaming episodes.  However, since I spend a considerable amount of blog space sharing about my own autistic son, and the larger world of disability into which I get a peek, I felt like talking about this show, and a few others, might be a good companion for anyone else looking to this program for a better understanding about autism.

So.  My son is ten years old, and I'm finding myself more and more curious about what adolescence and puberty are going to look like, not only for a boy, but a boy on the autism spectrum.  To that end, the first episode of "Atypical" seemed like it might paint a picture of what my son's life could look like in just a few years.  It sets up the characters: Sam, who wants a girlfriend, sister Casey, who has also never dated and maybe just met a boy she could like, Elsa, the mom who has made her whole life about taking care of her kid who isn't really a kid anymore, and Doug the father who has never actually connected with his son.  We also meet Julia, Sam's therapist, and while it doesn't become evident for the first few episodes that her romantic life will be part of the show, she is certainly the catalyst for Sam to explore the world of dating and sex.

The show makes some good points over the following episodes: everyone wants to be loved, relationships are hard whether your brain is typical or not, and every member of a family reacts differently to an autism diagnosis.  YES.  However, there is so much that just doesn't sit right with me, stuff like the Autism Support Group moderator who keeps interrupting Doug the FIRST TIME he visits the group, telling him that he's not using the right words as he shares about his relationship with his son.  Not only is this counter to my experience attending such a group, it's just a bad way to treat him.  The whole point of support groups is to find like-minded people who understand what you're going through, and for many family members, it can be the place where you say the un-PC stuff and the raw emotional outpouring that comes from being a parent.  Moments like that ring false because the show is attempting to insert little "autism 101" lessons rather than just telling the story.

Another problem that I have with "Atypical" is that I don't see my son in the autistic character.  I had this same problem with "Parenthood."  So many of my friends LOVED that show, and kept telling me that I should watch it, but after the first episode, I just couldn't do it.  The show's creator has a son diagnosed with Asperger's (which isn't a diagnosis anymore, but I know plenty of people who disagree with the DSM on that one, so let's just move on...), and he wrote a character that was like his child for primetime TV.  As the saying goes, though, "If you know one person on the autism spectrum, then you only know ONE PERSON on the autism spectrum."  It's true because the disorder manifests itself in a thousand different ways and makes each person markedly different from each other, while sharing this umbrella label.  Kind of like...people.  So when I see Sam lock someone in his closet for touching his stuff, or constantly ask, "What's so funny?" or seem completely oblivious to the fact that another person is upset, I find myself frowning.  My son is incredibly empathetic, and never responds to people outside the family with violence or anger.  Sure, he hits his brothers when they bug him, and he talks back when I give him an order that he doesn't like ("Turn off the TV" being the worst one), but he wouldn't do that in any other setting, no matter how overwhelmed he became.  He loves to laugh and enjoys many of the same jokes that other kids his age like.  There's a disconnect because in being so specific, "Atypical" departs from the realm of what my family is like.

I think my biggest criticism of the show encompasses all the little things that I don't like, and that is (as far as I can tell from researching) the lack of an actually autistic person in the cast or crew of the show.  The ultimate take away is that the writers spent a lot of time researching Autism without actually involving anyone who knows what it's like inside, and the cast rely on stereotypes that make the show seem clinical rather than personal.  This is especially evident to me because of another show I watched this year, one that I absolutely fell in love with, called "Speechless."  That show centers on a teenager (JJ) with a physical disability and his family, and yet, the final product is something so much more relatable than "Atypical."  The show's creator grew up with a brother who is very similar to JJ, but even more importantly, the actor playing JJ has the same disability!  Amazing!  It's almost as though people whose brains and/or bodies are a little different from the standard Hollywood cookie cutter can ALSO ACT (*sarcasm*).  And while "Speechless" certainly educates its audience about the difficulties of finding appropriate services for a person with special needs, and how caring for a disabled child plus a few more can make things like mowing the yard bottom basement level priorities, it captures something that "Atypical" completely leaves out.  JOY.  Yes, life is hard when you are different in a way that is not widely accepted.  Yes, caring for a child with special needs is hard.  No, there are not enough hours in each day nor enough dollars in the bank to give each of your children everything you would like.  But good Lord, there is so much laughter and love and delight in the days and weeks and years of this life.  We have certainly found it, in bike rides and movie theaters and donuts and tickle fights and Monday morning dance parties and snow days and swimming pools.

So I would encourage the creators and writers and actors of "Atypical" to take a page from Scott Silveri and Micah Fowler and company.  If your show is picked up for a second season, bring some autistic folks on board.  Bring them into your writer's room and listen to their experiences.  Hire at least one to be on screen.  They are beautiful and intelligent and incredible people who will make your show better.  And maybe they can even help you find ways to incorporate humor that isn't at Sam's expense.  Because my son will be a teenager soon, and he will be navigating these tricky situations.  I'd love to have something we could watch together that may actually represent his perspective.

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 Tuesdays

I count my summer by Tuesdays.  It makes me feel a bit wistful that there are only four left before school commences and we return to our typical week:  Mondays drag and Fridays feel like the finish line.  In the summer, Mondays are restful and Tuesdays are a party, for one simple reason.  Tuesday is Friend Day.

Bubbles!

Over the past year, my children (ages 4, 6, and 8) have all developed a strong friendship with someone outside our family.  I wondered how long it would last when the boys described their brothers as their best friends.  And especially for my oldest, on the autism spectrum and introverted in the extreme, I wondered if he would ever have a friend who didn't share his last name.

It's a hard thing that I never considered before the diagnosis.  I have been blessed to have the same best friend for the past two decades, as well as a husband who often fills the role.  I have friends at church and friends to chat with at pick up/drop off, friends who work at the library and Starbucks, friends to go see movies with and hang out on a lazy afternoon.  (Not that I have those anymore.)

But this kid, this sweet, silly boy, has a hard time engaging other people.  He experiences much of life on another plane, and tends to keep to himself.  Even when other kids desire to interact with him, he just doesn't participate in conversations the same way, or answer questions in a linear fashion, and I can see the frustration on the faces of his classmates and kids at the playground.  It's just easier to leave him to his own games and carry on with tag or basketball with the other kids.

Playing "Minecraft in Real Life"

A while back, one of my friends started working on Tuesdays, and needed someone to drop off her kids at school.  I volunteered, since we live close to the school, and her kids are always a delight to be around.  When summer rolled around, she still had work on Tuesdays, and three kids in need of a place to play.  It worked well that her kids' ages fall near my own kids' ages, and they got along great for 12 weeks.  The most remarkable part was that her son, a few months older than my sweet James, loves to play video games, and wanted James to teach him how to play one of our games.  So, week after week, James had a friend to play with.  They could sit side by side (but more often, James bounces around the room while he plays), complete tasks together, and they actually talked to each other!  Ian would ask questions, and James would answer in his own way.

I watched nervously, trying to serve as interpreter, or to catch James' attention when he seemed to be ignoring Ian.  But mostly, the two boys worked it out together, and a bond was established.  They play games together, and if James is intent on doing things his own way, Ian finds something to play with the other kids.  And now James looks forward to Tuesdays, to having his friend come over.  The kid who would rather be left alone, who seemed content to go through life solo, has a friend!  And it touches my heart every week to see them together.

Lego Star Wars!

It takes work, and special attention, and a whole lot of luck to match kids with special needs to someone who genuinely wants to spend time with them.  So many people in our kids' lives are there in a professional capacity, that finding someone who wants to be a friend is a gift.  And I'll do my best to appreciate whenever we find those gifts.

On Mistakes

This past weekend was the IF:Gathering, and I was able to watch with 39 friends and strangers at my church.  There were several good speakers, and a few moments that simply electrified me.  I want to talk about one of those moments, which happened when Rebecca Lyons interviewed Larissa and Katherine.  Larissa's husband suffered a traumatic brain injury before they were married, and Katherine had a stroke as a young wife and mother at age 26.  Their stories are exceptional and if you missed this special weekend, you should seriously consider finding a rewatch near you or downloading the weekend when it becomes available.

It lifted my spirits so much to see two women representing different aspects of disability on the stage at IF.  They were honest and gut-wrenching and challenging, and I wished I was there in person to hug them both for sharing themselves with hundreds of thousands of people.  The most poignant moment for me was when Rebecca asked them what had been their darkest moment in facing the new reality of life after disability.  Katherine shared a moment when she lay in the hospital, partially paralyzed and unable to speak, when she thought, God, did you make a mistake?

Do you ever have that feeling when another person says something that cuts straight to the core of who you are and what you've lived through, that you feel almost strapped to your seat, unable to move?  That's how I felt in that moment.  Because I remembered the day (or, more likely, days) when I asked that very same question.  When I looked at my very young son, recently diagnosed with an Autism Spectrum Disorder, and I wondered if God had actually meant to give that child to me.  It wasn't what I was expecting as a mother, but mostly I wondered if God realized how inadequate I was for the task.

I want to share with you one of my deepest beliefs, one that has been forged in the dark nights and long days, that came from my lowest moments and from my son's unexpected life.

God doesn't make mistakes.

It was easy to see why my mind would go there.  Nine years ago, traits like compassion and grace and selflessness were basically non-existent in my life.  I heard an expression that said "If you vote Republican when you are young, then you don't have a heart."  I proudly shared that, and went out to vote for George W. Bush.  (The saying continues "If you vote Democrat when you're old, then you don't have a brain."  If the choice was between having a heart and having a brain, then I chose brain.) I had goals and ambitions for myself, none of which involved other people, something that my husband pointed out to me while we were still dating.  I was unapologetic about all of it.

Then one day I peed on a stick and two lines popped up immediately, leaving no doubt that my life was going to change.  I had a hard time realizing how much.  The little life grew inside me and before he was even born, he had taken charge.  I ate hamburgers slathered in mayonnaise and apple after apple.  I ate kale.  Kale, people.  Long gone were the breakfasts of Snickers and Dr. Pepper, the late nights talking with friends, the size 6 jeans.  And when he came out and I held him in my arms, I knew I would do whatever it took to give him a good life.  I just had no idea how hard it would be to accomplish that.

So yeah, I questioned why God in His infinite wisdom wouldn't put this child in the home of a trained speech therapist or intervention specialist.  Or, at the very least, someone less selfish and cold-blooded.  Having a son on the autism spectrum wrecked me in the best possible way.  It's easy to see it now, when so many years have passed and I have changed so much.  It's easy to see what God was thinking when he lovingly and tenderly created a little life inside my body.  He wanted to help me become a better person, a better mom.

Tonight, the thoughts are swirling, as I think of my mom friends who face similar diagnoses and challenges.  And maybe it's because a lady from my Bible study died this week, but there doesn't seem to be a better time to tell each of you...

God doesn't make mistakes.

The child you are holding, or watching over, or struggling to get into bed, the child who is challenging every idea you ever had about motherhood or life or just everything...He is not a mistake.  And you are not parenting him by mistake.  You are both exactly where you are supposed to be, exactly how you are supposed to be.  There is a God in heaven who created each and every one of us and He wants you to give everything you have to this life.  He wants you to grow in the challenges and revel in the joys and be surprised and broken and restored.  He wants you to live.

He doesn't make mistakes, but we certainly do.  I don't know who originated this saying, but I heard it from Master Oogway in the movie Kung Fu Panda (I'm a mother of boys, after all).  "Yesterday is history.  Tomorrow is a mystery.  Today is a gift.  That's why it's called the present."  And what a mistake it would be to waste your gift.  To spend your gift thinking about what is history, or speculating about what is a mystery.  What about today?  Don't think about what you got wrong in the past or what scary unknowns wait in the future!  Focus on today.

What do you need to learn today?  What can you do today to keep your family going?  What services do you need to investigate?  What is happening today, right now, that you will never get to experience again?  For me, it was hearing my son, the one with all the delays and the expressive communication difficulties calling my parents' dog to come sit in his lap, then giggling in delight when the dog licked his face.  It was disgusting but it was also huge.  It was something he couldn't do even six months ago, something I thought was impossible when he was 3 years old and crawling under tables during his assessments.  Today, when I showed his younger brother a gift I got for him to give his teacher tomorrow during the Valentine's party, he asked if he could take a gift to his teacher too.  I was surprised not just by his words, but that I had been so short-sighted that I didn't pick up two gifts.  (Apparently I have a ways to go in that whole "gracious, think of others" thing.)  Today, at bedtime, he asked me to come sleep in his bed.  I cuddled for a few minutes before excusing myself to my bigger, more comfortable bed.

What if I compared my life to other people I know?  What if I'd let that diagnosis dictate who my child was?  What if I'd resisted the changes developing in me?  What if it was fifty years ago and his doctors had advised me to leave him in a home and focus on my "normal" children? (Side note: I have two other kids, and none of them are normal.)  I would have missed the gifts that today held for me.

Friends (and strangers, if there are any of you reading this) DON'T MISS IT.  Don't miss the challenges of living your life.  Don't miss the trials and the changes they'll bring about in you.  Don't miss the joy to be found on the other side.

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.

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.

On Wheelchairs (World Autism Day)

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

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

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

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

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

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

James' smile is the cure for my grumpy moods

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

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

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

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."