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 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 Holiness

I recently shared how much I love to read the Bible.  Since September, I've been part of a women's Bible study group at a local church and together we have read through the book of Exodus, which tells the thrilling story of Moses, Pharaoh, and God, and how God's people were set free from slavery.  The Bible study continues this month as we jump into Leviticus, which is the not-so-thrilling list of rules and guidelines for the newly formed nation of Israel.  Bo-ring!  I have read through this before and struggled to get from page to page, sentence to sentence.  Most of it no longer applies to modern readers, as we don't present animal sacrifices or live in a desert climate and have access to, you know, modern medicine.  And yet, this time, Leviticus seemed to come alive for me.  Instead of reading through a bunch of stuff I don't have to do, I saw each description as a picture of God.  God is not diseased, and so his people need to be purified from their disease to live with him.  God is incapable of sin, and so his people need to be purified from their sins to live with him.  God is honest and fair, and so his people need to be honest and fair so they can live with him and each other.

I think the Old Testament, and especially Leviticus, gets a back rap (I have personally complained about both).  But when I got to chapter 19, I had to stop and reflect.  The chapter is a list of rules and commands that don't necessarily seem to go together.  The chapter is titled "Holiness in Personal Conduct".  It includes:

• "Each of you must show great respect to your mother and father, and you must always observe my Sabbath days of rest." verse 3
• "Do not steal.  Do not deceive or cheat one another." verse 11
• "Do not defraud or rob your neighbor." verse 13
• "Do not insult the deaf or cause the blind to stumble.  You must fear your God." verse 14
• "Do not twist justice in legal matters by favoring the poor OR being partial to the rich and powerful.  Always judge people fairly." verse 15
• "Do not spread slanderous gossip among your people.  Do not stand idly by when your neighbor's life is threatened." verse 17
• "Do not seek revenge or bear a grudge against a fellow Israelite, but love your neighbor as yourself." verse 18
• "Do not defile your daughter by making her a prostitute." verse 29
• "Stand up in the presence of the elderly, and show respect for the aged." verse 32
• "Do not take advantage of foreigners who live among you in your land.  Treat them like native-born Israelites, and love them as you love yourself.  Remember that you were once foreigners living in the land of Egypt." verses 33-34
• "Do not use dishonest standards when measuring length, weight, or volume." verse 35

I know what you're thinking...this sounds like every Christian I know, right?  We do such a good job keeping these commandments.  Oh wait, no, no we don't.  But like I said, Leviticus doesn't say as much about me and where I fall short, as it points to who God is.  What I learn about God by reading through this chapter is his commitment to equality.  Don't treat people differently because they are old, or poor, or rich, or blind.  Don't cheat each other.  Be honest.  Love each other the way you love yourself.  And I also learn that God knew what we would actually do.

If there is one thing that all people have in common, it's this tendency to constantly rank ourselves according to the people we know.  Like, they have a bigger house than me, her kids are better behaved than mine, but that person doesn't dress as nicely as I do.  We tend to bow to those we perceive to be "better" or "higher" than us, and to look down on those "lesser" or "below" us.  We derive our worth from our ranking.  I know striving to be better than everyone else characterized most of my teen years, and carried over a little into my twenties.

Take my friend Liga, for instance. She is much prettier than me.  She has a bigger house.  She has beautiful, special kids (and more than me).  Most days, I feel like she's a better mom than me.  She takes her kids on outdoor adventures and makes art with them on snow days.  She is more generous than me.  When we first met, I didn't think we would become friends.  I looked at how she was just so much MORE than me.  I felt self-conscious and inferior.  I needed to find some flaws to level the differences between us.  Instead, what Liga offered me was a grace to transcend our differences.  We became friends not because I was able to lower her to my level, but because she sees worth in the way that I do things.  And so I have found myself in this new kind of friendship where I tell her she is an amazing mom and then she tells me that I'm an amazing mom.  It doesn't matter what our houses or cars or clothes look like.  There's an equality that doesn't insist on all things being equal, but delights in the differences.  It's a blessed relief from the "mom-petition" (like competition, but when moms do it to each other).

It's a Levitical relationship when we stop trying to match up and accept each other for who we are.  For instance, there wasn't much that a blind person could offer to society at large, certainly not in comparison to someone whose vision was intact.  But we are told not to hurt them anyway.  A daughter wouldn't be worth as much as a son thousands of years ago, but parents were told to offer them the same protection anyway.  Foreigners have never had rights or power ever in human history, but we are to treat them with dignity anyway.  Jesus even taught about this in Luke 14:12-14 when he said, "When you put on a luncheon or a banquet, don't invite your friends, brothers, relatives, and rich neighbors.  For they will invite you back, and that will be your only reward.  Instead, invite the poor, the crippled, the lame, the blind.  Then, at the resurrection of the righteous, God will reward you for inviting those who cannot repay you."

I think we should take Jesus literally.  Not only will God be pleased by opening our homes and sharing our meals with those who don't "rank" as our equals, but we can be pleasantly surprised to find new friends where we hadn't thought to look.  Because when we stop measuring a person's worth by what they can offer us, or by their sameness to ourselves, we can look at people with eyes wide open and realize that we are all equals as human beings and children of God.

Happy birthday (and Autism Awareness)

April is Autism Awareness month.  It's special to me because I spend all year becoming more aware of autism, learning about it so I can be a better mother to my son James.  It's a funny turn of events, since James was born at the end of March, so our celebration of him turns into a month of trying to better educate those around us to understand this thing that affects how he interacts with the world.

So let's start here:
Autism is characterized by three things.
1. Social interaction.  Autistic people can be shy or outgoing, but they will struggle to know how to connect with other people, often characterized by limited eye contact, trouble taking turns, and becoming overwhelmed by the presence of "too much" (too much...noise, light, physical touch, etc).
2. Delays in verbal and nonverbal communication.  Some autistics will never speak, but this should not be confused for having nothing to say.
3. Repetitive, stereotyped behaviors.  Don't all kids flap their hands when they get really excited?  Or repeat the same phrase over and over when they get overwhelmed?  Or just make random sounds at seemingly inconvenient times?  No? 

Now let's talk about autism and birthdays.
James began using single words around age four and a half, and we were like starving people who can only be fed with verbal communication.  "Say it again!" we'd cheer.  Whatever seemed to cause him to speak would be repeated over and over so we could hear his beautiful voice.  Just in the past six months, his words have really taken off, and he's using sentences and sometimes really loudly and clearly telling his little siblings what he doesn't like (it's true, I stand outside the boys' room and do a little happy dance when I hear his scream, "No Winston!  That's James' car!  Give me that!").  I really want him to have good manners, but for now, I'm applauding what I see as the seeds of self-advocacy that will help him later on.  Okay.  So apparently when you have a March birthday, you begin inventory the day after Christmas: what you got, what you want, how many days until I get presents again?  For the past few years, James has better understood the concept of time, the months, days passing, etc, so we start our countdown to March 30th.  He's had a recent renewed interest in Pixar "Cars"; combine that with his ability to navigate YouTube and find commercials for products that are no longer sold in stores...I've been getting a very specific request for the four cars he didn't previously have (if you're interested, they are Raoul CaRoule, Rip Clutchgoneski, Lewis Hamilton, and Shu Todoroki.  He would like the die-cast models to complete his World Grand Prix lineup.  Every day).  I was thrilled to find three of these at Target (on sale, no less) about a month ago, but several trips have come up empty for the Lewis Hamilton car.  When I checked Amazon, he was available....for $12.  So I let James know that *maybe* he was getting some new cars for his birthday, and if he got birthday money from the great-grandparents, he could purchase the rest.  And maybe this all seems mundane, not worthy of note...but he's telling us this.  With his words.  That is so HUGE.

We've been talking lately about the love languages, and how we should really try to love other people in the way that they feel loved (which is almost always NOT the way that we prefer to give love).  I thought about this as it pertains to parenting, and specifically to my child who is so easily overwhelmed, so inside himself.  I really wanted to watch him open his cars today.  I wanted to see the look on his face, and, if I'm honest, I really wish he would look at me and say something like, "Oh, thank you so much mom!  It's exactly what I wanted!"  But I'm not an early riser, and I'm certainly not "together" or even really "awake" until 11am or so.  After I talked it over with Chris, I grabbed the cars from their hiding spot, unwrapped, and put them in James' bed after he fell asleep.  This kid has been looking forward to playing with these cars for THREE MONTHS.  If it was all about me, and getting some sort of response for how awesome I am at buying toy cars, then I would have made him wait until this afternoon, so I could really appreciate his reaction.  But instead, I did what I thought he would like, and just cut to the chase.  Chris heard him squealing in his room at 7am, and he had at least two cars in his hands at all times today.  I think we did it right.

Another change we've made over the years is the way we celebrate James' birthday.  My instinct is to gather together in one place all the people who love James.  Family, teachers, friends, neighbors.  Let's spend two hours at our house, talking and laughing and eating and watching James open presents.  Guess who freaks out in such an environment?  So we pulled back.  We had immediate family over for cupcakes.  We shrugged at each other.  How do we make this special FOR HIM?  Last year, we tried something new.  James' birthday almost always falls over spring break, so Chris took the week off, and we did something different every day.  We went to the Cleveland Zoo.  We played at the park.  We went to Red Robin for dinner.  Each place was fun, and then we went home to relax.  It seemed to work.  This year, I asked James for his input.  "How would you like to celebrate your birthday?" I asked him as we snuggled in his bed at night.  "I want to go to Pump It Up," he whispered to me.  Again, this might seem really basic, but this thing of me asking a question and him responding to it in a way that makes sense to me....it's a rare treat.  Okay mister, you are going to Pump It Up!  We arranged to meet another family with boys James' age for an afternoon of jumping.  It was perfect.  Then my parents asked if we could all go bowling together, another of James' favorite activities.  We brought Winston and Girl, and invited our neighbor Amanda at the last minute, and she brought her friend Katie.  At eight people, it was almost too much.  But we had a great time, and James figured out how to hold the ball with his fingers in the holes, instead of rolling with both hands.  As we were leaving, another kid's birthday party arrived.  There were at least 10 young kids, and as many adults chasing them around, helping them bowl.  It made a contrast to our quieter celebration, but I was glad we chose to do it in a way that made James comfortable.

Instead of a cake, this year Chris suggested putting a candle in James' birthday donut.  We all sat at the table while he sat on the heating vent in the kitchen, and we sang "Happy Birthday".  When the song ended, James stood up and blew out the candle with a big smile on his face.  I was smiling too.  Our journey as parents has been influenced by the children we've been given.  A while ago, I started praying that God would show me how to be the best mom for James, for Winston, for Michael.  Not to be the mom that all the other moms want to be, or the mom with the best facebook photos, or even the kind of mom I think I should be.  Just who they need me to be.  I swear God is speaking through my kids every day.  And I'm finally learning how to listen.

Diary of a Mom shared this facebook status today, which I feel echoes how we celebrated James' birthday:
"Today, we celebrated her eleventh birthday. She was having a blast until she became overwhelmed. When she did, she said, "I'm going into the den because there's too much here." This time, I fought the instinct to convince her to stay. This was her party. She'd enjoy it in her way.

She left her guests in the kitchen and went into the den to bounce on her peanut. When the next animal came out, I called her. She came to look, was the first one to pet it, then went back to bounce again. When the next animal came out, so did she. It worked for her. She knew what she needed. And I, finally, knew enough to understand that there was nothing sad or "disastrous" about giving it to her.

After she blew out her candles, she said to no one and everyone, "This has been my best birthday of ever!"

I dare say we're all getting the hang of it."

The Things that Were Taken

It was bedtime, and our Girl wouldn't put down her toys.  She wouldn't put them away, so they were taken away, downstairs with the other toys for the night.  I rubbed the cocoa butter lotion on her skin and helped her dress in the pink and white pajamas and wrapped her hair in her purple scarf and covered her with her blankets.  But she wasn't happy about it.  "Mommy," she said, "I want the things back that were taken from me."  I know she meant the Monster toys that were downstairs, so I said, "In the morning, you can play with them again.  Now its time to sleep."  But as I walked across the hall to my own quiet room, her words echoed with me, and I heard a new meaning.  I thought about all the things that were taken from her, and I knew that the rising sun wouldn't begin to help restore those Things.

We are born into families, homes, cities that are varied and much of our early years is determined by the things we are given by our parents, what is culturally acceptable, what choices the big people around us make.  When I had my first baby, I had a job, a college degree, a loving husband, a home in a two-bedroom duplex on a quiet street in the suburbs.  I had a car and parents nearby who were excited to be grandparents for the first time.  I had a room full of gifts from friends and family, a brand-new crib, a dresser full of clothes, gender-neutral blankets, diapers and wipes that would last for five months.  All of this affected how James was raised, how he was loved and cared for and what he learned about family and his place in this world.  Even when, a few years later, we learned that he was different, that he would face challenges we had never known, it didn't change the fact that he was precious to us, that he was safe and loved. (Really it helped, because it gave us a better idea of how to love him, how to structure things to make life easier for him.)  But this Girl?  Even though she was born in the same city, she didn't have much of that.  For her, and too many other children in our country, in our world, she didn't learn from day one that she was precious.  She didn't see healthy, appropriate adult relationships.  Her development and interests were not the number one priority of her primary caregivers.  And when it was determined that she was a little different, that she would face challenges her mother had never known, it only made things harder.  She wasn't given the care she needed to thrive, and ultimately the state had to get involved.

What happened next...another Thing.  She was taken.  Sitting in a police car watching her mom yell and protest, and then someone brought her to our house.  New people, new rules, different food, different schedule.  Those first weeks with us, she asked so many questions.  She didn't understand how we related to each other.  One time, when she was in time-out for hitting one of the boys, she said, "My mom just whoops me."  Even the punishments are different here.  I don't know if she has figured it out yet, that even though she is one of four here, that her health and her safety are the number one priority.  That she is precious and loved, not because of what she does or how cute she is, but because she exists.  Because she is a child.  And I don't know how to explain that some things she will never get back.  She can never unsee those things.  She can never unfeel those hurts.  She can never get back these months that she has been apart from her Mama.  I know.  I've tried to pretend that I was someone else, someone who didn't lose her innocence too young.  But it happened, and I can't get it back.  How do I tell her that she has other things now, that life will replace those Things that were taken, that, although she is now marked by the system, that doesn't have to be a bad Thing?  That, hopefully, this experience has changed the home she came from into a safe place for her to live; that someday, when she's ready, she can talk about everything that has happened and find peace; that her heart has been shaped to break when she hears about other children just like her.  That she doesn't have to repeat the life of her mother or father, that she can find something new.

I wish I could wave my Foster Mom wand over her while she sleeps and make her understand these things when she wakes up.  But I don't have a wand, all I have is a warm bed for her tonight, hugs and kisses in the morning, and a mouth to pray for her future.  Won't you join me?