April is Autism Awareness Month. Today, April 1, is the day we set aside to remember those lost to wandering or elopement.

Wandering is generally defined as leaving a safe space, with or without a goal in mind. The person simply 'wanders' away. Elopement is pretty much like wandering on steroids--the person tends to bolt from the safe space, frequently with no destination or goal in mind: they simply don't want to be here, or (like Nathan) they want the sensation of run...ning. Autistic children 'wander' from a safe environment at a rate more than four times higher than that of typical children. In 2012, the National Autism Association reported that "accidental drowning accounted for 91% total U.S. deaths reported in children with an ASD ages 14 and younger subsequent to wandering/elopement."


Nathan is an eloper. Through intensive safety awareness training and constant vigilance, we have reduced his incidents of elopement dramatically. But we do not kid ourselves: it is only through luck and grace that we have our beautiful Nathan here with us today, as he has had multiple dramatic elopements that could have added us to the numbers of families who have lost their loved ones to wandering. And we can never relax our guard, because it only takes once.

Today and every day we ask you to spare a thought for the spectrum families who have lost a loved one to wandering, and a hope or prayer that we will never be among them.

For more information about wandering/elopement and ASD, visit

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  http://awaare.nationalautismassociation.org/

A Morning

When I dropped him off, I knew he was having a rough morning.  As we walked down the hall his behavior was unusual--he was more hyper than usual, jumping around, even spit on my shoe.   'Oh, no, I forgot his meds!' I thought.   I went to the car and got the emergency supply.  I knew he was hyper, I expect him to calm down in about 20 minutes.

At 8:45, the text came from his teacher:

He's having a really rough morning.   Spitting, generally being disruptive.  

We pass a few messages back and forth, trying to figure out what's going on with him.  Is it a meds problem?  Is it the weather?  Any new staff members or students? and on it goes, until the video snippet arrives.  He tore up his spelling test, crumpled it and threw it in the trash.   

"Get him out of the classroom" I said, thinking of the damage to the social life I had so carefully constructed.  If the class sees him as a troublemaker or the class clown or (worst of all) a baby who can't control his behavior, then how is he going to share classroom space with them as equals for the next decade?

"I already have" she replied, because of course she has.  For the reasons I worried about as well as the disruption of the classroom and his own obvious discomfort.  I can focus on one aspect of one child at a time--she is able to weigh the varied needs of many children at once.

So I text my husband that we're having a bad morning, and to school I go.   When I arrive he is sitting in the swing, scripting loudly and chewing on his shirt.   Another student is nearby with the Ipad my son is not allowed to have (by my choice.  He once used it for calming, but I now prefer he use something else and consider the electronics as rewards).  The teacher and two aides are giving one-on-one instruction to other students while the third aide observes Nathan from a distance--for whatever reason, he's decided 'it's her fault I'm in time out!'.

So we swing.   The aide returns to the classroom and brings back a toy he likes to chew on.   The teacher gets me a weighted vest that we put on his lap.  One of the aides adjusts the lights so our corner is dark but the other side of the classroom still has enough light for the students to work.   I throw my coat over the top of the swing to give him a more cave-like feel, and I sit on the floor to help him the only way I can--by forcing him to do the things that calm him.

My phone beeps--my husband wants more details.   I give him the outline of where we are, and then he texts back.

What was happening before he melted down?  How was he when you dropped him off?

What my head reads is 'do we know what the trigger was so we can prevent this reaction in the future?'

My heart reads 'So what did you do or not do that led us here?'

Because that's what I'm asking myself.   He got the meds late--was he already in sensory overload and the meds didn't help?  I was busy worrying about our trip today and all the things I needed to do.  Did I miss a clue this morning?   Was the morning too hectic?  Did I not give him the hugs and backrubs that his sensory-seeking brain needs to function?  Did I ignore the clues that today was not a good day because I was so focused on my own to-do list?

So he swings and I wallow.  In my guilt, my sadness, my confusion, my exhaustion.   I keep checking to see where we are--ten minutes in, he's able to include me in his script.   Five more minutes and he can answer basic questions with a processing delay of about 20 seconds.   A few minutes later, and the processing time is down to about 8 seconds.   He's chewing less and less, talking more and more.  Less scripting, more conversation.   I try the spelling words, and it's a dramatic failure.  We swing some more.  I try again.  This time, he wants to spell other words.  I ask him to spell How, he wants to spell alphabet.   I say 'spell don't', he wants to spell blend.   I adjust the weighted vest again, let him swing a few more minutes.  This time, he spells the spelling words.   He's confused that don't has an apostrophe but want doesn't.   That's my boy--he's back.   He's not ready to return to class, but he came back to me.

"That's something" says my husband's text.

"That's everything" I think.

It's time to push him a little harder.   We put the weighted vest on, and he sighs a world-weary sigh.  He knows what's coming.  He knows he needs it.   He is not looking forward to it.

We leave the room and go next door to the empty lounge.  It's a multi-use room, but it's empty right now.   He spends three minutes running around the room and jumping.   He's talking to me, trying to pull me into his game of make believe.   I refuse to join.  "It's school time" I say.   "We need to focus on school time now".   My brave boy looks at me and says "ok mom".   He's on board.  We do some jumping jacks.  Half-jumping jacks, really, jumping with our feet and holding hands.   We count to 100 with only a few stops, and when we get to 77 he hyper-focuses, determined to reach 100.   That's my boy.

When the jumping jacks are done, he wants to write.  We try a pen and a post it note--he's doing all the letters of his name but he's not managing the left-to-right-in-a-single-line part of writing.  We're almost there.

I get him a bigger sheet of paper and a crayon.   Now we're talking.   He draws a picture of "Big John Henry" and I briefly wonder where he learned about John Henry.   My musings are interrupted though--he still can't write his name.

We return to the classroom, and he shows his picture to his autism teacher.  He's able to tell her what he drew.   I bring him to a desk and give him a pencil.  He begins to write a scripted sentence.  He goes left to right on the page.  His letters are too big, and he's skipping some--his brain is still moving faster than his hand--but he's doing it.  When he gets to the edge of the page, he goes back to the left and begins writing underneath--YES!  When he reaches the edge of the page this time he's still not finished, so he goes back to the left and the top of the paper to finish his sentence.   A little disappointing, but not incredibly unusual for a first grader, so I think I'm ready to leave.

I check in with the teacher.  She's already worked out the details of re-integrating him into his class.  Of course she has--while I'm worried about this moment, she's planning the rest of the day.

As I walk out the door, I text my husband.

I'm headed home.  He seems back to himself--let's hope it sticks.  

I was tired before this.  I was already running on empty--now? I don't even know.

And then he responds:

Sorry, Love.

My head reads 'Sorry, that sucks.  You've had a rough morning.  Let's hope it's smooth sailing for the rest of the day'

My heart reads 'I'm so sorry, my Love.  I am sorry this isn't the life we planned.  I'm sorry that you're so tired and I can't give you the time you need to recover.  I am sorry that you are emotionally exhausted and that you keep pushing yourself because things need to happen and you're the one who needs to do them.  I love you and I love our boys and I'm so sorry that we all need so much more than we can give each other.'

As I was driving home, my phone beeped.   My heart skipped a beat as I glanced down.  i couldn't see the screen.   I thought there was something wrong with my phone until I realized I couldn't see the screen because there were tears in my eyes.   Tears of pride and joy because this time, we got through it.  Tears of fear that next time we won't get through it.   Tears of sadness because my boy needs so much and I'm struggling to figure out what he needs, meet his needs, and still meet the needs of his brothers.   Tears of exhaustion because I have a headache that won't go away and there's never enough sleep or time.   Tears because I'm running on empty, because I'm so tired that I can't describe it, and because the fumes and caffeine I'm running on are not enough for the jobs I need to do.  Tears because sometimes, there's nothing else you can do but wipe away the tears and realize the beep was just a coupon for a store you won't be shopping at before the tears of relief that it wasn't another catastrophe spill over.   

Flashback: New Year's Eve 2013

Ah, 2013. What can I say?

 We started out with the shock of Nathan having eloped in Columbus. In full freak-out mode, we spent hours and hours trying to figure out what to do, eventually deciding that our first plan (the autism dog) just wasn't going to work right now, and instead settled on an insane level of vigilance that often leaves other people thinking we're nuts. I'm ok with that.
Nicky has had one crisis after another--breathing problems, regressions, stitches, and now vision/sight issues.

 Victor is great, when he's not stressed out and anxious. He worries about everything and everyone, and I have NO idea where he gets that from (and no, I can't even keep a straight face while I type it).
John and I are exhausted and worn down, and find ourselves dealing with things we've never dealt with before. And I don't mean just the stuff with the boys (though, 1. that would be more than enough and 2. Heaven knows that 's all new to us too). There are all these things that we decided at some point to deal with later. Then we woke up one day and it was Later.

 This year has seen the renewal of old friendships, and even building real friendships on what was little more than a passing acquaintance. I am so grateful for all those friendships that have become stronger this year.

 This year has seen crushing disappointments for me personally. People I had respected, relied on, and looked up to; people I had assumed would always be there when I needed them just weren't. I don't blame them really. We are all who we are, and it's not their fault that I saw them as different than they were. I am sad, but in this case, I am fully to blame for my own sadness.
I had my first 'too close to me' death to suicide this year, and soon after discovered that I had almost lost a few other dear friends to suicide, and only by the grace of God (or chance, if you prefer) were they spared. Last year, I learned that whether it is long and drawn out or short and sudden, there is no good way to lose a loved one. This year, I learned that there are certainly worse ways. Suicide is worse.

 This year has also seen personal highs. Victor and I did a play with ARTS. A Facebook post I wrote become a published article. Due to my and John's insistence, Nathan was given the opportunity to be in a typical kindergarten class, and he is thriving there.

 In fact, all three boys are thriving. In spite of their personal difficulties, in spite of our mistakes and missteps, they are happy, healthy little boys. They are beginning to show glimpses of the men they will be, and I couldn't be more proud of what I'm seeing. Victor has a strong sense of fairness and what is right, and his inquisitive mind leads him to ask important questions for this generation and the next--If there are thousands of pounds of food thrown out in our country every day, then why are people hungry? Why do some people live in houses big enough to be schools while others have no home at all? These questions are difficult for a parent to answer, but so important for a child to ask. Nicky, almost in defiance of the setbacks he's had this year, is a bubbling ball of sunshine, determined to spread joy wherever he goes. Every attempt to knock him down is met with an iron will that brings him back to his feet with a smile on his face, determined to try as many times as he must to accomplish his goal. And Nathan . . . that child is a walking miracle. If Victor is Fairness and Nicky is Joy, then Nathan is Love. Not the fairy tale, happily ever after love, but the real, difficult, dirty, painful, work-your-ass-off-to-keep-it love. Nathan's existence makes me want to try harder, work longer, BE better. He shows us every day that the world is not going to conform to you, you must rise to meet it. And each and every day, he does. It's not always graceful, it's not always pretty. Some days, all he can do by the end is scream or cry or moan or silently contemplate the injustice of it all. And the next day, he will open his eyes, sigh a heart wrenching sigh, put a smile on his face and say 'good morning mommy'. Every day. Victor makes me proud. Nicky makes me happy. And Nathan makes me humble.

 In a few hours we will begin 2014. Hobbling, it seems, across this arbitrary finish line that somehow makes tomorrow so much different from today. We go as we always have--hand in hand, exhausted, with our heads held high and hope in our hearts. We go determined to make this year better than the last, to leave behind the sorrows of 2013 while clinging tightly to the joys and triumphs. We go with both fear and excitement about what the next 365 days might hold, knowing that no matter what comes we will face it together, as a family. We will work to rebuild what we have lost, to strengthen what we held on to, and to expand where we need to. We will offer love, hope, strength, and encouragement to each other, and we will work together to make our lives and the lives of those around us better. We will go with a determination to do whatever we can to bring light wherever it is needed. We will go with the full knowledge that whatever may come, good or bad or just different, we will get through it. We will go with a mind towards that night, 365 days from now, when we will once again contemplate what has just passed, and we will use those days to create a year that makes us proud of what we have accomplished and excited for the next 365. We will go because we must: we will do it with joy and fairness and love because we have learned that it is better that way.

 And so we go.

 Happy New Year to you all. May you find your own joy, love, fairness, and peace in 2014.

Flashback: Early January 2014

In honor of my soon-to-be-broken resolution to share more on the blog--and because I have yet to write something similar for THIS year-- here's something I wrote last January.   I hope you enjoy it.

We spent the past four hours or so working on the boys' play room.   Nathan dumped a few crates of books and toys one day and we were too busy to clean it up, so we closed the room and have basically been using it as storage for 4-5 months.   As we were cleaning up other rooms, we'd gather a basket or bag of toys or a dress-up piece and just toss it in to be dealt with later.  The room has a 3/4 door, so for a while Nathan made it a game to toss toys in then call for us to get them.  We quickly tired of the game and instead told him it was gone until Later.

Well, it's 2014.  One of our resolutions this year is that it is now officially Later.   From the time the twins were born, we have been living in constant emergency mode.  We are always rushing around putting out fires, dealing with the absolute necessities of the moment.  So many things--our health, our marriage, household chores, pretty much anything that wasn't an emergency--were put off until Later so that we could deal with whatever crisis was before us.  This year, we are going to deal with many of the things we've put off.  While we are mostly focused on the emotional aspects of the resolution, there are also some physical things, like sorting and organizing, that fall under the heading of 'things we put off until Later'.  Later is now.

So into this disaster zone we went, bins and brooms and trash bags in hand.  John and I worked quickly for a while.  The boys were excited to see toys they hadn't seen in a bit, and Nathan especially kept running in to collect favorites (the princess Leia plus angry bird he had tossed over at some point was a particular hit--I had forgotten he had it, but he proudly told me he earned it by completing his final potty chart.   He walked away repeating the conversation from that day word for word, including a very credible parody of my voice pronouncing him a Big Boy and 'fishully potty tained.'  So many things I have forgotten remain like a video recording in his little head).

As we cleaned and sorted and chose toys to pass on to others, John and I became more and more excited.  Into the donation bin went the toddler toys, the ones that not long ago I thought he might play with forever.   In went the preschool toys, designed to teach colors and letters and basic patterns--somehow, he has mastered those skills in the past year.   In went the toys that were actually therapy tools--large wooden beads and shoestrings designed to teach fine motor control that once seemed impossible for him and is now a mastered skill.  In went the fabric books that I once thought would be the only books he would own because he couldn't eat them.  In went the infant and toddler dolls and blankies with different textures, chosen to get him accustomed to something other than cotton touching his skin.   In went the board books of simple emotions--though I couldn't seem to part with the one with the faces, the one I watched him pour over for hours, reading the emotion listed and trying desperately to copy the expression that went with that emotion.   At the time, I remember the heart wrenching agony of knowing that my child was trying to learn to 'act' happy or 'act' sad because it didn't come naturally.  Only now, in hindsight, do I see the beauty of a child working feverishly to learn how to express emotions others take for granted.

I looked at John and saw the reflection of my own excitement in his eyes as he gathered up his shooting headphones--loaned to Nicky a year ago because his auditory processing skills were so poor that he couldn't stand noise of any kind.   Less than a year later, his hands over his ears for the occasional loud noise is all he needs in most situations.  Into the trash went the leftovers of the fake money we bought for Victor--money is an abstract concept to him, so we tried everything we could think of for almost a year before something 'clicked'.  Once it did, he never looked back.

I stood in this room with my husband working on our third or fourth 'later' project so far, and I felt my heart swell like the Grinch in the story.   Some parents--some who are reading this even--have never felt that joy of knowing their child has progressed beyond the developmental stages my children seem to be breezing through over the past couple of years.   Nathan's progress is the most dramatic, but Nicky and Victor have certainly made their own progress as well.   Some parents will never know that joy.  As much as they love their child, their heart tightens a bit reading this story.   As I once told a young mother who was saying her baby was growing up to fast, the only thing worse than knowing how quickly your child is developing is knowing how very, very slowly he is developing.   Having known hat sadness, the joy of watching their progress is so much sweeter.

And that's when I realized something.  There are hundreds of thousands of parents in the world who will never know the joy of their child having achieved a milestone because they have never known the pain and fear of them missing one.  I was that parent--Victor didn't walk until 13.5 months, but he was already talking in sentences by then.   I cant' tell you when he learned his colors or began to follow two step directions or mimicked speech for the first time because those were just things he did.  It wasn't brilliant or amazing, it was just a child growing.   I still remember the first time I told Nathan to repeat something I said and he actually repeated it.  I don't remember the words, but I remember the feeling.  I remember the all encompassing joy and the satisfaction that we hadn't given up on him, and even though it took years longer than expected he was now mimicking us.  And I remember the ridiculous number of things John and I both asked him to repeat over the next six months just to hear him repeat them.

Autism steals so much, especially of the things you thought you'd have.  Dreams of dance recitals and karate tournaments often turn into therapy appointments and specialist referrals.   I couldn't be a crying mom on the twins' first day of kindergarten--I was busy fighting to make sure the school understood Nathan's BMP and that he would be in the kindergarten room with his class rather than in the autism room.   I've read that 85% of marriages with a child on the spectrum end in divorce, and I wouldn't be surprised to find out that was a low estimate:  my marriage, my life revolves around doctors and therapies and routines and random sleepless nights.

And autism.   I keep saying I want a project, a part time job, a THING that has nothing to do with autism, but I doubt I'll have it Autism creeps into my conversations at the post office and my trips to the craft store.   It is as much a part of my life as air--and as difficult to escape.

But there are gifts.   I've met amazing people--specialist, teachers, therapist, bloggers, other parents.  People who lobby the legislature, fund raise for autism associations, write books, do art projects, volunteer.   People who change the world and people who just live as joyfully as possible.   I've learned so much about myself, people and priorities.   I see beauty in the world that I never would have seen otherwise--the beauty of the wind on your face, the song of a bird, the first dandelion in the spring and the last in the fall.

And I know the unadulterated joy of handing a six year old a toy labeled 'for ages six and up' and being conscious of how very hard we have all worked to make that possible.

For the Love of a Cat (from Walk Down Autism Lane)

(I know, I suck.  I'm terrible about updating, but I'm writing.  Some of it goes on facebook, some into my journal, but it's happening.  I'll try to update over here more often.  I've also found some facebook posts I want to share here, and I'm hoping to do that over the next few days)

Walk Down Autism Lane asked if it was ok to share this photo and post, and of course I was flattered to be asked!   Go check it out.  Click on the photo above to link directly to the original post.

A Princess

It wasn't my best parenting moment.   We were already late and trying to get out the door.   I was trying to explain to his brother that I wasn't going to pack him another lunch after he had inexplicably gotten up in the middle of the night, taken his carefully packed lunch out of the refrigerator, and left it sitting in the floor.  He wanted a moment of my time, and I didn't feel like I had that moment to give.  I glanced over from tying a shoe and said "You can't take both the Skylanders and the crown for show and tell.  You have to pick one" And then I started grabbing backpacks and looking for my keys and didn't think about it again until the end of the day.

I saw the sheepishly defiant look on his face as he walked towards me at pick up time.   It took little more than a glance to know why--that crown was on his head.  

"Did you bring that crown for show and tell?"
"No.  You told me I had to pick one, so I brought the Skylanders for show and tell and the crown was some of my clothes."
"So, are you a prince or a princess?"
"Don't be silly.  Of course I'm a princess."

His eyes sparkled in challenge, his head held high, his chin so defiantly pointed that I was suddenly overwhelmed with one thought:

That child is Just. Like. Me.

I told him he made a wonderful princess, but we'd have to find out if the crown met the school's 'no hats' guidelines (Maybe it does?  Some of the girls certainly wear hairbows larger than that crown) and then we began walking towards the door.

As usual he had to stop at every single water fountain on our trek, so I found myself waiting by the front door with some of his classmates as he made his way there.   A little boy began telling me about how cool the skylanders were--my son had shared them during recess.  He turned the corner and two older girls began to giggle.  I didn't hear their words, but immediately the boy my son had shared his toys with spoke up.

"STOP IT!  You do NOT make fun of him.   He is nice and he is kind and he is my friend.   So what if he's wearing a princess crown.  He likes it.   What makes it ok for you to wear a princess crown and not him?"

The two girls stared at the angry little boy in stunned silence as my unicorn walked between them, completely oblivious to the drama that had just unfolded.   He told his friend to have a good weekend and asked me if we were having movie night.   I glanced at the girls--they looked confused, as if their entire world had been turned upside down by one defiant seven year old and the brave classmate who took up for him.  I smiled at the boy who made it his business to stand up for what was right.   I told him to have a great weekend as we walked out the door.

I am in awe of my children.  I watch every day as they inspire those around them, as they make them really think about their own views and actions.   How did I get so lucky that I have a 9 year old who can convince an ENTIRE CLASS to read The Hunger Games and watch Dr Who?   A pair of 7 year olds who defy every expectation, whether it is gender roles or interests or academic success, and who manage to turn that defiance into a battle cry to rally other seven year olds who feel like they are different?  And perhaps their biggest inspiration of all--a self involved woman inspired to see the world anew, to work to help others, to be better than she was in an attempt to be worthy of the amazingly powerful souls that have been entrusted to her care.

They Need To Learn

We knew it was going to be bad.  The kids' pizza place with the loud animatronic stage show and all of the beeping, buzzing, blinking games.  But a friend's child had her party there six months ago, and the boys remembered how much fun it was.  Especially the laser tag.   No amount of me explaining that it was a slow day or that the stage show set was broken at the time would convince them, so I sucked it up and (practically) gave the manager a kidney to pay for it, and we had our birthday party.  

Before the guests arrived, he was already overwhelmed.   He spent most of the party with his hands over his ears.   He refused to have his picture taken with the giant dancing bear, but he did blow out his candles.   He didn't melt down, but he did shut down.   And he was AWESOME during laser tag.   Still, we knew how close we were to crisis mode, so we sent the other two to spend the night with the grandparents and we took him home, where he spent the next two hours in his room, completely silent.  

We knew we were pushing our luck when we took him out again this afternoon, but there were errands that had to be run before Monday.  We had to drive the truck instead of the minivan he's used to, and there was a LOT of stimming, but we made it through.   We were at the home improvement store, checking out all of the new holiday decorations while Daddy dealt with his errand, when it happened.  

We had ventured to the garden department, and I thought we were alone except for the man who was stocking the shelf, so I let him run ahead of me.  Sometimes, when he's excitedly stimming, I set the parameters (stay in this room, stay close enough to hear my voice) and let him go.   Allowing him to self regulate gives him freedom and increases his ability to cope.  So he was just out of earshot.  I don't know what the family said to him.  I don't think it was cruel, but I heard the sound of the girl's voice and then the mother answering her softly.  And I stepped around the corner to see my son, frozen in his tracks as the little girl looked at him questioningly and the mother smiled almost sadly at him as they walked quickly away.  

I took in the scene and tried to mentally calculate where we were:  What just happened?  How is he feeling?  What exactly is going on?  What did they say?  He is so still-how much must they have hurt him for him to be so very still?  Oh, God, I shouldn't have let him get close enough to them that he could hear them and I couldn't what on earth did they say that caused him to be so very still--

His voice stopped the panicked track playing through my head.  There was anger in his tiny body as he yelled, clearly towards the retreating back of the mother and her child, "THEY NEED TO LEARN ABOUT ME!"

"What do you mean, Love?"
"They need to learn about ME Mommy.  They don't know.  They don't know spinning is fun.  They don't know about ME"
**some incoherent babble and stims I didn't quite catch**
"Do you mean they don't know about autism?"
"Yes.  They don't know about me, and au-zism, and they need to learn.  Because spinning is fun and lights are happy and this Christmas tree smells icky and that red light tastes good and they need to learn about me, not be sad for me. "

And then he grabbed a small light up something and held it above his head like a champion with a gold cup, trying desperately to tell the people who were almost out of sight that the light up, sparkly whatever in his hand held a beauty he could feel with every cell in his body.  That he can smell and taste and hear and feel what others can only see.  

That he was not to be pitied, but envied.

The emotion on his face when I came around the corner that I had mistaken for pain was righteous indignation.  What I thought was an imminent meltdown was the fervor of someone trying desperately to share their knowledge with an unbeliever.

And that was it.  That moment.  That was the moment I knew we were going to be ok.

My son knows who he is.  He knows he has autism.  He will work his butt off to fit into our world, with therapists and apps and exercises that would make a grown man cry, and he will do it with joy.

Because he knows that he is not to be pitied, but envied.

His attempts to fit into our world are not to be 'normal', but rather so that he can share his incredible, amazing world with those of us unfortunate enough to not experience the entirety of what the world has to offer.  

He works not to overcome his autism, but rather to share it.   He wants us to know how red tastes and how a rainbow sounds and how music looks.

Because in his mind, WE are the disabled ones.  We are the ones missing out on the full experience of the world around us.

And We are the ones who need to learn.