Following the Leader

He was two. Although it was still a bit light outside, it was way past his bedtime and he was exhausted. We all were.

We couldn't figure out why he was so out of sorts. He seemed fine until we started trying to put him to bed, but each time we tried to put him in his crib he started screaming. He was trying to wriggle out of our hold. The closer we tried to hold him to console him, the more upset he got and the more he fought to get away.

He kept going for the front door. He needed to go outside. I tried to think of what we had done that day that might have set him off. Nope, nothing different. We did an inventory check of all the things he carried around. Everything was where it should be. Nothing was missing. Nothing was left out in the yard.

He kept trying to get past his dad blocking the door. We couldn't redirect him. We couldn't calm him.

We had no idea what it was that he was looking for, but we knew he wasn't going to calm down until he got whatever it was.

Finally, we gave up and opened the door. He bolted outside and went straight for the front gate.

Tony followed him. I stayed with baby Johnny and waited.

James went across the street to our friends'. Tony explained that he had no idea why, but James needed to come over and he now wanted to go in their house. They all watched James run through their house and out the back sliding door to their backyard. He bee-lined for the Little Tykes slide and went straight down.

And his face changed. In the 2 seconds it took to slide to the bottom, he became calm. He allowed Tony to pick him up and he rested against his dad as he was carried home. He laid down in his crib, relaxed.

I realized that night that James was the only one who knew what he needed, so we should follow his lead.

Last year I asked all my friends to wear blue for Autism Awareness Day and think of James. I put a blue light on our front stoop and left it up for the entire month. I put a puzzle piece magnet on my car. I wrote a post about what I thought we could do to educate others about autism. I did all the things I thought I should do as James' mom to help raise awareness and understanding.

But I realize now that I was thinking more about what I needed last year than what James needed. I wasn't following James' lead.

James has never liked to receive any attention. At all. He has always hated when we said "good job" to him or praised him, no matter how great the accomplishment. I think it puts too much pressure on him, but I don't know for sure. He's never told me why.

Lately his little brother has been talking about autism. I'm happy that Johnny is trying to understand it better, but James gets really upset when Johnny brings it up and he tells us in no uncertain terms to stop talking about it.

I'm trying to help James navigate it all without telling him how to feel. I don't know how much he understands because he doesn't want to talk about it, but I can tell it is on his radar. Out of the blue the other day James asked if his friend has autism. When I said yes, he told me that was good because we could bring the friend to our autism open swim at the local YMCA. It is little glimpses like this that confirm we are on the right track. It all just needs to be in his own time, and it needs to come from him.

I should follow James' lead on all of this. I want to make sure that I don't try to speak for him, because he has his own voice. And it is getting stronger every day.

So for Autism Awareness month, I am not going to draw attention to James by having a magnet on my car or shining a blue light on our front stoop. I will continue to support my son and quietly watch to see which slide he chooses to go down next. And I will follow his lead.

Creating a Special Space

I watched the three year old drop to the ground and giggle as he rolled down the tiny mound. I laughed at how unbelievably adorable it was that he viewed the mound as a rolling hill. I remembered countless times of hill rolling with friends without a care in the world, and felt that inner peace you do when you watch children at play.

Then I turned to James and waited for him to follow his friend. He made some really awkward movements. He lifted his arms up and down and looked, confused, as his friend laying a few feet in front of him. He painstakingly tried to lower himself into a position where he could roll.

And all of a sudden the reality of our situation slapped me in the face.

Oh my god. He doesn't know how to roll down a hill. He is four years old and he can't figure out how to lay down on the ground.

Sensory Processing Disorder wasn't new to us. He'd been faithfully seeing his Occupational Therapist for over a year, 2x a week. We had booklets of evaluations with phrases that I was still trying to comprehend. Dyspraxia. Gravitational Insecurity. Tactile Defensiveness. Low muscle tone.

The list went on. Since I was still trying to remember what PDD-NOS stood for and was completely overwhelmed by the diagnosis on the autism spectrum, I tended to downplay the sensory side of things - even though I knew in my heart that Sensory Processing Disorder drove so much of his behavior and anxiety.

That moment completely woke me up, and I started focusing on the sensory issues. I paid close attention each time we went to a playground. I watched him run laps around the perimeter instead of climbing and consoled his meltdown each time I'd try and put him in a swing.

It was frustrating and heartbreaking. A good friend's birthday party at an indoor playground should have been heaven for a five year old. Instead he sat still in a little car and watched nervously at the twenty- two other children running around him.


James in the middle of his friend's birthday party.
You would never know there are 22 kids running around him.


The aquarium and the zoo. Trampolines and slip and slides. A sit and spin. Slides and tunnels. All were added to the growing list of things to fear and avoid.

As his little brother grew, it was clear he was a thrill seeker. I had to find ways to let Johnny go on the merry go round while James screamed because he was terrified to even be near it. I avoided any place where James would be out of his element because it would mean that Johnny wouldn't be able to play the way he wanted to. The way he should have been able to. I felt trapped knowing that we couldn't go to the same places my friends were taking their kids.
Thankfully we had the best OT in the entire world. Amy was able to immediately see and understand James' reaction to everything in his world, and she created incredibly complex programs that helped address these challenges head on. We started sensory diets at home that began to help.

Sensory seeking kids need and deserve a place where they won't be judged when they crash and spin and jump and seek activities that organize them. They need to go up the slide and down the stairs without receiving disapproving looks. Other kids like James need a safe space to overcome their fears and not feel inferior to others.

And parents of ALL these children need and deserve a space that provides all of that for their families, and arguably more important, the community that will inherently come with it.

My incredible friend has taken a leap to open such a place. It is called SenseAbility Gym and it is a much needed place for kids like James. For families like mine.  They are in the running for a $25,000 grant from FedEx to help them get off the ground. You can vote for SenseAbility Gym every day until 11/24.

Vote HERE. Every day until 11/24. Vote for James and for hundeds of other children this gym is going to help. Vote for me and for all the families who will actually be able to enjoy a public play space, possibly for the first time ever.

And thank you. From the bottom of my heart. I know how lucky I am to have such an incredible support network. I'm so thankful to have friends and family like you who take the time to read our story, and I appreciate your support more than you will ever know.

xoxo
Kristin



No Strings Attached

Another sock torn to shreds.

I found it while folding laundry today. Then I found another. That makes 5 this week, plus 2 pairs of pants in the last few weeks.

James is obsessive about strings on his clothes. If there is a tiny piece of string sticking out anywhere, on any piece of clothing, he needs to remove it. Immediately. If I am not ready with scissors to cut it off, he won't stop pulling it until it is completely removed.

It was hard enough to find socks without toe seams he could feel (yes, I was the one doing the victory dance in the boys' department at Target, thankyouverymuch). But my smugness went away after a few washes, when the strings started to appear.

More than a few times have I arrived at school in the morning to tell him it was time to get out of the car, only to see a sock with a newly pulled hole on one foot and a panicked look on his face. "You don't have another sock? WHY don't you have another sock? Now I can't go to school. NO, I CAN'T NOT THINK ABOUT IT! I'M GOING TO THINK ABOUT IT ALL DAY AND WON'T BE ABLE TO DO MY WORK!"

And I sigh, because I know he is telling the truth.

I tell myself that summer is coming - those glorious days of crocs, shorts and short sleeves. Less clothing means fewer strings to pull, right? Not having to wear socks is a reason to throw a party in this house.

And maybe, just maybe, if he doesn't have to remove a string for a few weeks straight, the obsessiveness will fade a bit and he'll outgrow it by Fall.

But until then, I'll be carrying a tiny pair of scissors for emergency string removal.

Fancy Cars

"What's that car, Mom? Is it fancier than a Lamborghini? is it fancier than a Maserati? Is it fancier than a Ferrari? A Mustang? is it fancier than a DeLorean? Corvette? What's the other one? The one they have in California? Oh yeah, the Hummer stretch limo?"

The questions come furiously. Quickly. The same questions all the time. No matter how many times I answer them, they come back.

It's only 8:30 am. I've been in the car for 1/2 hour after a frenzy of trying to get them ready for school and out the door on time. I'm still tired.

There is barely any time for me to remember the answer I gave yesterday. I wrack my brain, trying to give myself some time to remember the visual list I have in my head of the order of Fancy Cars, but I can't. My brain doesn't work like that, and I am exhausted from trying.

His brain does.

He collects information and catalogs it. He remembers all my answers. ALL OF THEM. If I get them wrong he tells me.

I try to take a sip of my coffee at the red "What about that car? What is that? Have you ever seen that car before? Is it fancier than a Lamborghini? A Maserati?" light.

I don't remind him that we've never seen a lot of those cars on the road, only at the car show. It doesn't matter. These are his benchmarks. He has to go through his list.

Asking him to to be quiet is not an option. Only a few years ago we were begging for this. For him to be interacting. Seems like just yesterday the trip included him screaming to go a specific way, only for "blue house-blue house-blue house-brown house-brown house-brown house-black house-black house-black house".

If there was traffic, or if I had to go a different way, it meant a meltdown.

I remember those days every morning, just when the ride to school across the city starts to get to me. And then I smile and get ready.

It's my turn.

But just before I go, I take a big gulp of coffee and remind myself to actually make a real, printed list for the next ride so I don't get the answer wrong.

"James! Do you see that blue car coming up? It is SO FANCY!"

I Resolve

I've been struggling more than usual the last few weeks. Actually, I've been out of sorts since summer ended. I know there is something I need to do that I'm not.
That in itself is nothing new. I'm a bit of a slacker. I've never had aspirations of grandeur, it has only mattered that I be happy and with the people I love. That has always been enough.

But I don't feel like I am the best mother/ wife/ friend right now.  And I don't understand why. If I want everyone around me to be happy, and I know what they need to become so, what is stopping me from doing whatever I can to I give it to them?

I'm the mom of a child with autism spectrum disorder, sensory processing disorder and severe anxiety. I know he needs structure. I know he needs routines. I know he needs his areas to be free of clutter and easy to navigate. I know he doesn't like surprises. Yet I can't get my act together enough to give him what he needs. In his own home.

My other child has some very similar and sometimes slightly more confusing needs. I'm still trying to figure out how best to help him navigate the world, and it is incredibly upsetting to see him get so frustrated - at both himself and the world around him.

I want to get out of this rut. To be healthy and energetic. To be productive during the day so I can spend quality time with the kids when they are home. Instead I wander around the house overwhelmed all day and then look at the clock, realizing that I got nothing done.

Another day wasted when I could have accomplished something to make our lives better.

Then all of a sudden the boys get home and the day is full of transition difficulties and homework struggles and "why doesn't he have as much homework as me" and "I don't want that for dinner" and "why did he get more time to play" and I seriously think my brain is going to explode so I get a glass of wine so much earlier than I planned and I drink it much more quickly than I should because it is only 5 o'clock and Tony won't be home until at least 7.

See how exhausting that is to read? There should be pauses. periods. At least a comma to allow a deep breath and gathering of thoughts that make sense.

That is how I feel a lot of the time. No commas.

My family needs me to make some changes. I know that. James made everything crystal clear yesterday when he tried to get a cookie out of the jar on the counter and knocked things over that were stacked in front of it, because I didn't clean the kitchen as planned.

He lost it. "Why is there so much stuff? There isn't supposed to be stuff in front of the jar! I can't do it like this. You are supposed to move the stuff!"

And he was right.

I know it is just a cookie, so it might sound a bit ridiculous if you don't live in the world of autism and SPD and anxiety. But it isn't at all ridiculous in my world. It is what he needs in order to help him get through a day that is filled with uncertainty and surprises. If I know he needs a smooth transition after a difficult day of holding it together, and all I need to do is clear a path to the cookie jar and I don't do it, then that is a pretty big fail.

So here is my resolution for this year. I have no idea if it will work or if I'll even stick with it, since I've blown off every other one I've ever made in my life. But this one isn't for me. It is for my family.

I'll try, one bit at a time, to get things organized. To get my mind organized.

Clear the clutter. In my house, but more importantly, in my head.

I'm going to try to write about what I'm going through, since that seems to help me organize my thoughts. I'll try to explain how things got this way and where I want to be.

And then I'll try to get there.

Setting Clocks and Expectations

Instead of snoozing through the extra hour we got this morning, I spent it cursing my son's internal clock.

As he lay there kicking me, sighing, flopping back and forth and bolting upright every 30 seconds to look at the clock, I started thinking about how sleep had become such a huge issue for our family.  Never in my wildest dreams did I think I would ever need therapists to help me get my child to sleep.

James has NEVER been a sleeper. As a baby, he couldn't sleep laying down flat. He spent most of his first year sleeping on my chest, while I stared at the clock. We managed to get him in his crib some nights by placing him in his car seat in his crib. He would sleep for an hour, tops, then be wide awake and we'd start all over again.

The baby swing was torture to him. We kept trying, thinking he would get used to it. The screams got worse each time I put him in it, so it went into the attic until Johnny was born.

He stopped napping completely when he turned 1 year old, so those six hours he got at night was the only sleep he got. I averaged about four.

I turned to the Ferber method when I was pregnant with Johnny and in desperate need of sleep. All that taught me was that James could scream for hours and not be any more tired than when he started. For both James and me, the Ferber Method was a form of emotional abuse.

As he got older, nights became harder. We had to lay with him until he fell asleep. Night after night, Tony would lay there, getting kicked and listening to James intentionally hold his breath. We tried Melatonin because many children on the spectrum don't create enough of the hormone to regulate their sleep cycle. It helped him get to sleep faster, but he was still up at 2 am. Sometimes for the rest of the night.

We started wondering if many of his behaviors might actually be the result of sleep deprivation, not autism.

When Johnny was out of his crib, we put the two boys in a room together, and it gave James enough support that he was able to go to sleep on his own. We stopped the Melatonin when he had a scary episode of hallucinating, and we hoped for the best.

Five pillows, a body pillow, his weighted blanket and 3 other heavy blankets on top of him and an entire zoo of stuffed animals helped to provide the sensory feedback he needed to relax enough to fall asleep.

Tony and I started to get our evenings back together, but the middle of the night wakings continued. Soon his move into our bed took 3 different trips to bring all his gear. Our bed started looking like this in the morning:


Tony is actually in there!

Putting him back in his bed didn't work for us (mostly it just didn't work for me). He was awake for hours at a time, his mind racing.  He often woke Johnny up, and then I'd end playing musical beds, some nights 4 beds in 3 different rooms. I usually wound up sleeping on their floor trying to get both of them back to sleep, on 2 dog beds I put together to create a toddler sized mattress. We don't even have a dog. I actually bought dog beds specifically for me (yeah, I can't believe I just admitted that publicly...)




yeah. That's my bed. The one on the floor.

 It was insanity (click this link to see how ridiculous it was), but I had been living it so long that I started to think it was life as usual.

His social/ miracle worker helped us create a sleep training program and since last June, James is able to stay in his own bed most nights until 6 am.

I finally got some sleep, and actually started feeling like myself again.

So, it was really easy for me to lay in bed and bitch on Facebook about my kid not getting the whole Daylight Savings thing. But when I started to think about everything we've been through as a family, I realized that the hour I got kicked this morning was actually a welcome reminder of how far James has come.

I know it is going to take some time for his internal clock to re-adjust, but if I can remember that I actually don't have to sleep on a dog bed anymore, I think I can get through this Daylight savings thing.

Tearing Down the Wall

Yesterday was the first day that there was a hint of winter in the air. So, slacker mom that I am, I finally decided to unpack the pool bag. It was filled with typical things- a few empty bottles of sunscreen, kids' goggles and some toys. While I was taking them, out, I realized what a huge thing it was for me to be doing.

We've never had a "pool bag" before. Filled with typical things.

All the memories of this past summer, and of the last 8 summers, came flooding back, completely overwhelming me.

When James first started Early Intervention and was diagnosed on the autism spectrum, I was sure I could handle it all, and it wouldn't change my parenting style too much. I would keep doing all the same playgroups and would keep him in the world, surrounded by other kids. 

Soon though, I found myself cancelling trips to the aquarium, the children's museum, even the zoo around the corner from our house.

I started building a wall around us with each cancellation. With each "no thanks, I don't think so", the wall got higher and higher. By the time James was 8, I had created a fortress. I kept my boys inside it as much as I could. Summers were spent in the fenced in front yard with an inflatable pool. Outings were limited to therapy appointments and visits with other ASD families.  Always controlled and always with an escape plan in mind.

Poor Johnny was stuck with us even though he desperately wanted to get out. I had to say no to the playdate requests, because I knew I couldn't send him without his brother, and I knew his brother couldn't handle it.

I started to hate summer, and felt horribly guilty for feeling that way. What kind of mom was I that I didn't want to spend those supposed carefree days with my young sons, without the limitations and rules that go along with the school year?

We were becoming prisoners inside that fortress, only I couldn't see it. All I could see was the pain and the fear in James' eyes when confronted with something unexpected outside the wall, and I fiercely wanted to protect him.

This past summer, though, I finally started to break down the wall.

Some friends belonged to a pool club that was totally geared towards kids our boys' age. They suggested we join because Johnny had visited and loved it.  I was hesitant.  It was more like a water park than a pool.  It was huge, and there were so many kids.  I was sure it was going to be an incredibly expensive train wreck, but we decided to try it out, just for Johnny.  As summer got closer, I started dreading it, again.

The first day we went, I watched as Johnny took his brother by the hand and led him around the enormous wave pool.

A few days later, I watched James play with a friend. Splashing. Dunking. Chasing.

The second week, Johnny was scared of the obstacle course and was asking for my help. I got into the pool to hold him steady and heard a friend yell "Hey Smother!  Get outta there!" I laughed and got out to go join my friends, while I watched Johnny struggle in frustration. The next day he did the whole obstacle course. 30 times.

In August, I actually played tennis while my kids were in the wave pool. I don't know whose life I was leading, but it wasn't the one I had for the past 8 years, walled up with my boys away from the world, ruled by autism and anxiety.

We were the first ones in on our last day there, anxiously awaiting the arrival of a new friend and her sons. The pool manager approached James and handed him the keys to the pool. He instructed James to go around to the other side of the wave pool, put the key in the lock box and turn it.  I started to intervene, and I remembered the "Smother" comment. I backed off and held my breath a little.

I watched as James gave me a nervous look and then tentatively walked around the pool by himself. He fumbled and found the key hole, and struggled to turn the key. And he looked up to see the waves start rolling into the pool. He smiled. His brother cheered.

I turned and went to the desk to sign up for next summer.

I know we are always going to face obstacles and challenges, and some times are going to be very, very tough.  But going through the pool bag yesterday, I realized how far James has come over the past 8 years. 

I also realized how far I've come. 

I think now I'm going to be able to tear down the wall, day by day, and let the outside world in.  He's playing soccer this fall, and we are going to try skiing this winter. And for the first time in 8 years, I'm already excited about spending next summer with my boys.

I'm going to keep the pool bag visible though, just for those days when I need a little extra help.

Posting at SPDBN

A few days ago, a post I had written was published on a website called SPD Blogger Network.  It was called The Kiss that blew me away and it was about something sensational that James did last week.

SPD stands for Sensory Processing Disorder, and it is something that affects James every moment of his life and often debilitates him.  He is overwhelmed by the world around him and is unable to filter everything out the way that you and I can, to only pay attention to what he needs. 

Everything.  All the sounds, the smells, the lights, the random movements of everyday living.  They all come at him full force, all at once.  He can't block any of it out. 

Imagine how distracted you would be every moment of the day.  Think of how difficult it would be to focus on anything with so much sensory input being hurled at you.  Consider how scary it must be to feel like you are being assaulted by things that don't seem to bother anyone around you.

Even his own body fights against his mind, so simple things we take for granted, like spitting out toothpaste, are incredibly difficult for him.

A child's favorite act of rolling down a hill is something that he has to break down, step by step, watching demonstrations over and over again, to try and get his body to be able to make the movements necessary to be able to do it.  It pretty much takes all the fun and spontaneity out of the act when you have to work so hard to be able to do it.

It is painful to watch your child go through this every moment of every day. It has consumed my mind for the past 8 years.  And although we have incredibly supportive family and friends,  there have only been a handful of people I could actually get advice from because SPD is so complex, and I have often felt alone.

Until recently. 

The SPD Blogger Network is a 24/7 virtual support group for parents to share stories, both successes and challenges, to find answers to questions, to vent, or simply to hang out in a "place" where other parents get it. 

I wish to hell I had this site when we first started on this journey, but I'm thankful to have it now.

SPDBN shared my glimpse of a single moment where one simple gesture made a huge difference to me.  I'm grateful that people who read that post understood the significance of that moment and gave me such amazing words of support, and I want to continue to contribute to this incredibly welcoming community in any way that I can. 

If you haven't had a chance to read about the kiss, it would mean a lot to me if you'd click the link and read my story on SPD Blogger Network.  And once you are there, please look around and read the stories from other contributors, parents like me, because each of the stories is important, and each is sensational.

The Kiss that blew me away

Life is easy at the Life is good Festival

Yesterday we brought the boys to the Life is Good Music Festival in Canton, MA.  It is right up the road from us, and I wanted to go last year, but I was afraid with such a large scale event, it would be a day filled with meltdowns, frustration, and tears.  And that would just be my own reaction. The potential for my son (who has an Autism Spectrum Disorder, severe anxiety and Sensory Processing Disorder) and his brother (who has emotional challenges that I can't quite figure out) could be far, far worse.

We decided to try it out this year. I went expecting the worst.  We even drove separately from our friends in case we needed to make an escape.  Tony and I weighed the possibility of leaving the festival and coming back in with either or both of the boys if necessary.

Turns out, not only was it unnecessary, it was an easy and fun day for all of us.  We arrived to the parking lots and were amazed at the multiple shuttles waiting to take us to the event, 2 minutes away.  We happened to arrive at the exact same time as other friends, so the boys had pals with them right from the beginning. 

We were greeted by the first of a bazillion volunteers in bright orange shirts and led through the ticketing process.  We didn't have to stop for more than 15 seconds, and that was only because James was already panicking that he didn't have a LIG shirt like his friend and needed one immediately, so I was asking a volunteer to direct me, immediately, to the merchandise booth.



Our little friend staying safe!

After James got his shirt and stopped pulling me around, we filled up our water bottles at the refilling station, and went to what I thought was the most impressive part of the event planning - a bracelet registration for the kiddos.  We were given bracelets for each boy with my cell phone printed on them, and my phone and our names were added to their log next to the serial number on the bracelet.

Normally, it would be hell trying to get either of my boys to wear a bracelet, but because ALL the kids at the festival had them, I was able to convince them easily.  phew.

Even with the bracelets, I'm overly cautious at places with so many people.  It is too easy to lose track of them, especially with each kid pulling in a different direction and wanting completely opposite things and so much sensory input, for everyone, including parents!  Luckily, the space was so spread out and organized that I never felt it was too crowded or out of control.

I thought Johnny would be so excited to dance to his favorite singer, Laurie Berkner, but he had other ideas from the moment he saw the bungee trampoline.  So, after an hour and a half waiting in line (ugh), he finally got his chance.  And you know what?  It was so worth it to see that smile (and he did get to dance to Laurie while waiting, so it was a win-win for him).

Whenever you needed something, there was an orange staff shirt in front of you.  At times it seemed like there were as many volunteers as there were concert goers.  They had staffers running tons of kids' games, and we visited every single one.  I actually feel like I know the woman running the habitrail in the obstacle course because Johnny and his friend rode it so many times.  I should have at least offered her a cold beer. Habitrail guide, I totally owe you!

They even had staff at each garbage station helping determine if what you were throwing out was compostable.  Really.

James did great throughout the whole day.  When he got anxious or had sensory overload, Tony just took him for a change of scenery.  He ran around and explored, he danced, he was grinning ear to ear and sweaty every time I looked at him.  He loved the magic show and building in the "Chill Out tent".

As soon it started getting dark and the kids' activities ended , things got really tough for Johnny and the meltdowns started.  I thought we were going to have to bail early and I would have to (sigh) miss the Avett Brothers.



Love this new bag - good choice Johnny!

Tony and James were happy at our spot with friends watching the show, so Johnny and I wandered around the grounds, exploring even more and dancing around to the music,without the restriction of staying in one area for an hour.  Johnny picked out a cool new bag for me at Lou's Upcycled and checked out the Martin Guitar Jam tent, and then ran into friends playing in the hay.  We spent the end of the Avett Brothers show dancing around, having a hay fight and laughing with friends.

Life was great.

Virtual Friendship in Reality

When a friend recently posted on FB that her sons' 1st day of school would be delayed by a week, and asked for ideas of what to do with them so she didn't lose her mind, I immediately responded  that we would be at our pool club and they should hang out with us for the day.

The thing that makes this very, VERY uncommon for me to do is that I had never met her before.  Or her boys.

She writes the wonderful, heartfelt blog, Try Defying Gravity, and our boys are around the same ages.  I love her writing and admire her.  Our stories are similar, and I've told her more than a few times that I feel like she's walked in my shoes.  We became Facebook friends and started sharing more personal stories, so in my mind, she was already my friend.

It wasn't until I realized that I wasn't sure how to pronounce her first name that I understood the enormity of what I had suggested, and how far out of my comfort zone that was.  She was driving an hour (and paying a small fortune) to come for the day.  What if I oversold the pool as a magical wonderland and her kids didn't like it? What if it was a total letdown for her?   And the most nagging question of all - What if I didn't live up to her expectations in real life?

I realized today that I need to learn to trust my instincts and not over-think things (those of you who know me are laughing outright that I just said "over-think" and "me" in the same sentence...) 

She and her boys were so incredibly nice, and we had a great day.  Her oldest went on the slide a hundred times, the obstacle course, the bumper boats and in the wave pool, while her two little ones floated around happily in the wave pool. 

And when my boys checked out completely after about a half hour, and I stressed about them sitting around moping while our guests were swimming without new friends to entertain them, she waved it off and laughed. 

Just like a friend would. 

And I realized then that I didn't need to make the day perfect, it just had to be real.

As Murphy's Law dictates, as soon as it is time to leave, your kids inevitably stop asking when it is time to go.  So even though it was Mario they bonded over instead of the wave pool I hoped for, we stood there for a few extra minutes watching them play together, like they had known each other all summer, and I was happy that I trusted my instincts about friendship.

The Real Breakthrough at the Beach

When I first started writing this blog about our journey back in April,  I thought I would do a little autism awareness project and get some people to understand kids like James (and their families) a little bit better.  I never expected it to become so important to me.  I've found that telling our story is both empowering and healing, and I feel a million times better about myself as both a parent and a person since I've started writing.

I wonder if James discovered the same thing about the power of communication. 

Last week James and I had our most meaningful conversation ever, and I posted about how proud I was of him to be able to communicate his feelings to me for the first time (A Wave of Words, An Ocean of Meaning).  Now understanding why he was so unhappy at the beach, I was perfectly content to plan future vacations near pools.

Then last Friday we were invited to spend the day with friends on the Cape.  Hurricane Irene was on her way up, and I knew the waves were going to be rough, so I asked if we could go to a bayside beach.  When we got there and I saw how excited her kids were to go to a beach with waves, I reluctantly agreed, expecting the day to be a long one.

It was windy and hazy.  The waves were taller than James.  Hanging out just 30 yards off shore were the two most enormous seals I've ever seen.  People were talking about sharks, and the Coast Guard had both a boat and helicopter scanning the surf.

Standing no more than ankle deep in the water, James' gripped my hand so hard it hurt.  I envisioned how the rest of the day was going to go, and sighed. 

An hour later, I once again experienced the healing and empowerment that can come with telling one's story. 

This was what I saw. I'll never forget how beautiful that moment was.
(look for James in the orange shirt.  Johnny is in yellow).

A Wave of Words, an Ocean of Meaning

When James was diagnosed with Sensory Processing Disorder (SPD), it was explained to me like this:

Imagine he is placed in a dentist chair along side a "typically developing" child.  The chairs drop slightly, unexpectedly.  Both children would have the same reaction of surprise and fear.  If it is repeated numerous times,  the typical child would be less affected each time.  He would anticipate the movement of the chair and adjust accordingly to plan for it.  James' reaction (or any other child with SPD) would be just as extreme each time it happened.

No matter how many times it happens, if feels exactly like it did the first time.

When a child is unable to regulate himself, it is difficult for him to explain why.  When that child also has an autism spectrum disorder that limits his ability to communicate feelings, he can quickly become distressed.

James has always hated the beach.  He screamed at the sand, the water, the sun, the smells, the seaweed.  I always dreaded beach trips.  The "fabulous family vacation" where we spent our days trying to console James, not understanding exactly what was going on in his head, but knowing he was both terrified and horrified, leaving the beach moments after we arrived or holding him the entire time.

As he grew, he still hated the beach, and each season brought the same anxiety.  I couldn't bring both boys by myself because of James' reaction, so our attempts to re acclimate him to it were few and far between.  We'd finally get to the point at the end of the summer where he could tolerate it, and even start having fun on the edge of the surf (although he'd never actually go in).   Then we'd start all over again the following year.

Last weekend, we brought the boys to the beach to visit good friends with boys close in age to ours.  I was on alert as soon as we stepped on to the hot beach, expecting the worst.  He complained a lot, but there was nothing to indicate that he was in distress.  I started to relax a little bit as he started running back and forth on the edge of the water, playing with the others.

The other boys wanted to swim out to the floating dock, so James and I stayed behind and watched them swim happily away with the other grownups.  I tried to engage him, but got nothing.  Finally, I gave up and let him play on my phone, and sat there wondering if we were ever going to get past this point, or if he would end up always playing video games in a chair, me sitting beside him, both of us feeling left out.

Then, I remembered a time when I wanted James to tell me what he did at school and he wouldn't answer.  I gave up and he started to draw.  While he was drawing elaborate mazes, he started to answer the questions I had asked. They were simple answers, not incredibly insightful, but they were answers.  I remembered thinking at the time that he was able to answer because the pressure was off.  He was busy doing an activity that calmed him, and could talk down to his mazes, instead of having to look at me and try to read expressions he couldn't process.  

I decided to try it again now that he was occupied.  I didn't expect much more than "I don't want to talk about it" when I asked why he didn't like the water, but the words that poured out of him blew me away.

"It is too big, I'm scared.  It is too deep. I can't see or touch the ground.   There is seaweed in here.  I don't like it to touch me.  I like pools better, I can see what is happening. I don't like big pools, only little ones.  And I don't like sand.  It feels hot and scratchy under my feet.  I don't like to walk on it.  I like to walk on the ground more.  I like the ground around the pool better, it doesn't bother my feet."

His feelings came spilling out like we talked about our emotions all the time, yet it was the first time he'd ever been able to tell me WHY something upset him. 
James was able to tell me why.  If he can continue to communicate why, then we can help him find the tools to regulate himself.  

And when the chair falls again, although it will be surprising, it might not be distressing.

"He Just Looked at Me. He Doesn't have Autism"

We went to see a new pharmacologist to talk about medicine for my son's anxiety. I went through the usual 5 minute intro about our journey with PDD-NOS, anxiety and sensory processing disorder.

The doctor was nice and seemed understanding, but then he said it.

"He just looked at me. He doesn't have Autism".

I think I stammered. I told him I feel blessed that my son is high functioning and tries so hard to make connections with others.  I told him what we've worked on, and how far he's come, and then the challenges he (and we) still face. I thought he understood, but I left feeling uneasy that a neuro-psychologist just casually "undiagnosed" my son minutes after listening to me while watching him out of the corner of his eye.

A month later, we went back for the follow up.  The doctor looked at James, just a few minutes in the room but totally focused on putting together a magnetic game, asking the same questions over and over, and showing an uncanny memory at the placement of random objects in the Dr's office.

Then the doctor looked at me.

"You know what Autism is right?  It is lack of reciprocity.  DO YOU KNOW WHAT THAT MEANS?"

I winced.  It felt like he was yelling at me.

And then the bombshell:

"Are you really attached to that particular label?"

I think I said something like "you can call him a purple people-eater if you want, as long as he gets access to the services that are helping him so much", but I really can't remember because I was too busy screaming inside. 

Screaming at the doctor for not seeing what breaks my heart on a daily basis, but mostly screaming at myself for not standing up to him, and for allowing a person, after 10 minutes, to make me second guess myself and everything I've done to try and help my child.

Instead of slinking out of there feeling sick and guilty, like I just discovered I was either a Munchausen by proxy patient on an episode of "House" or the direct target of Denis Leary's next book, I wish I stayed in that office and said this:

REALLY? Do you think I actually want my son to be labeled with autism? Do you think it makes me happy to watch him struggle daily to fit in? To see how uncomfortable other children are around him when he tries to play with them?  To watch adults get frustrated when he gets in their face and asks them the same question over and over again even though they've answered it?  To have to repeatedly tell him to look at whoever is talking to him, or to continually tell him to answer whatever question has been asked of him?

Do you think I wanted him to realize at the age 8 that he is always going to be "different" from his brother and other kids his age?  To know things that are so easy for his little brother to do will always be challenging for him?  Playing sports, playing with friends, even telling jokes?

Do you think I dismiss the fact that he laughs when other people cry, or that he doesn't understand when people become annoyed with him, or are teasing him?

Oh, actually, yes.  After living this for just about all of the past 8 years, I guess I am "attached to this particular label".

I am attached to it because my son does exhibit that characteristic about reciprocity.   For my son, and many others with ASD,  lack of reciprocity is not for lack of trying.  Although some may try desperately, they are unable to reciprocate without constant assistance and significant effort.  Some of them, like my son, are able to achieve a basic level of back and forth, but they have to work constantly to recreate even a simplistic version what you and I do without even a second thought. 

I am attached to this label because it is a word that has meaning for people who are just getting to know my son, so that they can better communicate with him, and understand the support he needs to successfully reciprocate. 

I am also attached to it because I think it is going to be a very powerful word for my son as he grows, and I believe that he will be able to use the label on his own terms -- as a crutch if necessary when he feels like he is left out or lost, but hopefully more often to help develop relationships that are comfortable for him, with people who will understand and respect him.

As for me personally, I am attached to it because I can use it as a tool to teach others that people cannot be pigeonholed into a 3 word definition in order to understand them, nor can they be "figured out" by observation, and that anyone who tries to do so is lacking in empathy, respect and, yes, reciprocity.

Angry, Vindicating, Game Changing Birds

I have a lot of friends who don't let their kids play video games or completely limit it, and I totally respect that because it works out best for their families.  However, I'm on the opposite end of the video game spectrum.  I've not only been allowing James to play Wii and DSi, I often encourage him to do so (especially at 6 am!) and download bazillions of apps on the iTouch for him because when he is playing them, he's problem solving and being completely independent.  The boy who doesn't think he can put his own shirt flies through every level of wii lego Indiana Jones and Batman.  He creates elaborate new worlds and gains confidence.  It is really quite amazing to watch him play some of these games, but sometimes I feel conflicted about my "lack of discipline".  Not today though.

Johnny had gymnastics today.  It is the one special thing that he has been able to do since he was 3, and he loves it.  I make sure he always gets to class, because he's spent so much time getting dragged around to James's appointments, I feel it is the least we can do to let him have something that is just his.  Plus, it turns out, he's pretty damn good at it.

James, however, hates gymnastics days.  It is a huge, loud warehouse facility.  Music blares, kids scream, coaches yell.   There is a constant thumping of  handsprings going across the mats below us.  It is usually very hot and it ALWAYS smells like sweat and socks.  James can't stand to be in the place, and usually needs to sit on my lap or my legs, causing me to sit in pain for the hour.  I watch the clock and try to watch Johnny, but I'm usually focused on making sure things stay calm directly around us.

The incredibly complex thing about James is that he really wants to connect with people and tries very hard at it, he just has a hard time figuring out HOW to do it.  One time when kids were playing superheroes, he announced he was "Super Traffic Light".  He totally thought he was playing with them and they were completely ignoring him.  I was devastated watching it.  He always asks the same questions over and over, even if a kid has already answered.  Many of the kids he's tried to talk to at gymnastics have given him funny looks and then gone off to play with someone else.  James always looks sad when he is there, and I'm always on edge.

As a distraction, I always let James play video games during the hour.  I get more than a few disapproving looks from moms who have brought homework or books for their kids, and I constantly want to stare right back and yell "YOU HAVE NO IDEA WHAT HE IS GOING THROUGH TO JUST SIT HERE, OR WHAT HE ALREADY HAD TO DO TO GET THROUGH THE DAY.  JUST LEAVE US ALONE AND WATCH YOUR OWN KID!"

But, of course, I don't.  I just sit there and put my chin on his shoulder and watch the screen with him, feeling guilty, angry, and alone.

So today, when James was sitting on my lap creating amazing obstacle courses in Jelly Car 2, a boy came and sat down about 5 feet away playing Angry Birds on an iPhone.  James inched his way off me and was soon sitting about halfway in between us, and started telling the boy everything he knew about Angry Birds and how good he was at it. Then he started asking the boy questions, and I felt that familiar pit in my stomach. But instead of moving away, the boy answered them.  And asked James about how get past the level.  Soon they were sitting side by side, both playing Angry Birds and chatting away about the game like they'd known each other for years.  Then, all of a sudden, the boy just got up and left and my heart sank.

Next thing I knew, the boy came back and there were 4 boys with him, 2 of whom James previously tried to "friend".  The boy said "My mom got me the real one - the one you have!  Want to see?"  and to my utter amazement, they all huddled around, watching the game and taking turns playing.  I just sat there watching them when James looked up.  He gave me a huge smile, and we both knew he really was a superhero.

If Today is your Birthday

If today is your birthday,  you are witty and clever.  You have boundless energy and enthusiasm.  You want to share everything you like with those around you. You love to make people laugh, and want to laugh with them.   

If today is your birthday, you are true of heart, and don't understand the concept of deceit or cruelty.  You are loyal to your friends and family.  You try your hardest at all times and want to succeed. You get concerned when you don't think you will accomplish your goals, but you are willing to ask for help, and everyone wants to be there for you because they know how important it is for you. 

If today is your birthday, you are well loved.  Your family and friends have created a strong network to support you.  Your grandparents, aunts and uncles, cousins, godparents and friends are all standing by your side and would do anything for you.  Your parents are so proud of you and love you more than you will ever know, and understand that you have taught them how to be better people - more patient, caring and loving.  You have opened doors for your parents that they never felt imaginable, and have helped strengthen their relationship with each other. Your brother adores you and wants to be with you all the time. 

If today is your birthday, you are incredibly special, and the world is a better place because you are in it.  Happy 8th birthday James!

The Power of One

He read a book. On his own. Then, he came and told me he did it.  This morning.  James read a book.  

JAMES READ A BOOK AND THEN HE TOLD ME HE DID IT!

I heard him in his room, talking to himself.  Then I realized he was reading the book that we received yesterday as a present.  I stood in shock listening.  Then, he ran in my room with a giant smile on his face and said "I did it!  I read a book and I knew all the words!"

1st grade has been very difficult for him.  Figuring out sounds and phonics have always been a struggle. James would see the first letter of a word, any word, and begin to panic, then just run through all the words he knew instead of trying to figure out what the word might be.  Homework has been excruciating for both of us.  Because James has anticipatory anxiety and is afraid to be put on the spot to answer a question, he would often meltdown trying to get through a book.  In fact, the last time he willingly sat down with a book, he was 3, and it was a picture book about cats that he was showing to Owen.

"He might need something to help him access the world".  We heard that repeatedly from teachers and therapists from the time he was first evaluated for school.  I would never agree to anxiety medication, I was nervous about long term side - effects, about giving adult medicine to my small child who was unable to explain what it might be doing to him. What if it also took away the things that made James be James? We tried play therapy, self-coping skills, calming techniques, everything we could think of to help.  The techniques helped a little, but he was never able to get beyond being afraid.

His anxiety had gotten so bad this past winter that Tony and I decided we couldn't help him enough, he needed more.  What if there was something that could simply make the fears quiet enough to allow him to live without worrying all the time, about everything?  We asked James if there was a medicine he could take that would make him less nervous would he would want to try it, and he said "yes". So 2 weeks ago today, James and I went to the pharmacologist.

The past 2 weeks, I've been watching James very closely.  He's become more sensory, running more laps, licking his hands and putting everything up to his mouth.  He is asking to be brushed (a calming technique where we brush his skin with a surgical brush) that we used when he was much younger.  He also seems to be more chatty, and talks about how school isn't so hard anymore, how 1st grade isn't that bad.  I keep saying it's been less than 2 weeks, he must be coming out of a bad cycle and the timing may just be coincidental.  I've been wondering if I made the wrong decision, what if we medicated him just as he was starting to feel stronger and now he has to deal with heightened sensory issues?  What if we didn't believe in him enough and just needed to give him some more time?  How could I not believe in my own child enough that I actually decided to put him on medication?

Then, he read a book. On his own. And he came and told me he did it.  This morning.  James read a book.  And right then, I realized that he was finally able to access the world.

"When men can be made to hope, then they can be made to win."

— Bryce Courtenay (The Power of One)

Didn't get to sleep last night 'till the morning came around

It's a game we play most nights, so often it has become kind of a ritual in our house.  It is played like this:
10:30 pm - Mom goes to bed exhausted.
11:30 pm - Dad goes to bed. Mom is asleep.
1 am - Boy wakes up. Boy grabs all the pillows, pillow pets and animals he can fit in his arms and thunders down the hall into Mom and Dad's bed. Boy steps on Mom's stomach to get in between parents.
1 - 2 am - Boy kicks, squirms, tosses and turns, clicks teeth, re-arranges pillows.
2 am - Boy realizes he forgot one of his animals.  Boy panics. Dad snores.  Mom gets animal.
2 - 3:30 am - Boys squirms more. Boy elbows Mom in eye socket.
3:30 am - Boy yells for water. Dad snores again.  Mom gets water.
3:30 am - Brother hears noise. Brother gets Mom. Mom goes into brother's bed so he won't be alone.
3:30 - 4:30 - Mom lays awake in Brother's bed and stares at clock.
4:30 - Mom falls asleep.
4:45- Boy comes to find Mom. Mom follows him back into her own bed.
5:30 am - Boy and Mom fall asleep.
6 am -  Boy wakes up, wakes Mom up. Boy goes downstairs to play Wii.
6 - 6:30 am -  Mom sleeps.
6:30 am - alarm goes off.  Mom sighs.  Dad asks Mom how she slept.  Mom sighs again and goes downstairs to prepare for next game.

"Mommy, Do I Have Autism Too?"

We were cuddling in bed when my 6 year old asked me. 

"No, Johnny.  You don't." 

"Good, I was hoping you would say that" he answered, and exhaled a little more loudly than I expected.

I've been trying to explain the concept of Autism Spectrum Disorders to Johnny for the past few weeks, just enough to explain the differences he is noticing in James and his friends, and as simply as I can, but it is really hard to break down into terms a 6 year old can understand.  It's not bad or good, it just means your brother thinks differently than you do.  He looks at something and sees it a bit differently than you do.  You know how he really, really likes patterns?  I think he makes patterns out of information to understand things.  It's why his body reacts to touch and sound more than yours.  It is also why he can pick out the band of almost any song at the very beginning, but doesn't hear you talking to him a lot of the time.  And why he can cruise expertly through every level of Wii Super Mario Galaxy 2, but has asked you a hundred times if the dinosaur that hatched in your play egg in the cup of water was real.  It's why he jumps and flaps and laughs while you are losing.  Don't cry because you think he's making fun of you, it is just his way of showing that he is nervous for you.

Sometimes I think there should be a special diagnosis for siblings of children with ASD, they go through so much. Maybe they should be labeled as BKS (Brother's Keeper Syndrome) or AOLFF (Always On Look-out For Flapping). They are driven from appt. to appt. only to sit in the waiting room while the other one gets to go on swings and obstacle courses, they are constantly having to give in to the sibling to prevent a meltdown.  In our house, more often than I want to admit, it is often agreeing to give James one extra turn at Wii because he thinks Johnny got an extra minute or trading in the last brown M&M because it is James's favorite. 

The most intense example occurred just a month ago, when driving them to their separate schools, Johnny announced in the car that he had a headache and couldn't go to school.  As soon as I agreed that he would stay home and made the turn to go towards James's school, James started screaming bloody murder. Nothing I tried calmed him, and it was quickly escalating. He was thrashing around in his seat, screaming and crying how unfair it was that Johnny got to stay home with me.  All of a sudden, Johnny said "It's OK Mom, my head is good enough to go to school" and immediately, James calmed down.  As I realized that Johnny decided a full day of school with a headache was better than what we were to go through for the next 20 minutes, I had already turned the car around to bring him there. Then I wondered all day if I started to make the turn before he even got the sentence out.

I try to make it up to Johnny however I can by playing his favorite games and reading books, but often, they get interrupted and he is disappointed and I feel guilty and torn.  I'm lucky that Johnny is empathetic and perceptive (traits that may have been nurtured merely by being the brother of a kid with Autism), but sometimes I think that might make it even worse.  Or, remembering times he'd given something to James without even asking when James started whining I wonder was he being empathetic, or was he merely preventing a meltdown like he'd seen his parents do?  I wonder about all the times I told my friends that Johnny was the "best therapy" that ever came along, and silently cringed inside while I said it.

Then I make myself think of the day that instead of Johnny being upset that he had to sit and watch James's therapeutic riding lessons, he got a chance to ride himself.  I remember the the smile and laugh as he finally got to do something that was ONLY his brother's.  He loved it, and begged to ride again.  It was easy to give 5 minutes of James' therapy to his brother and the smiles were all the payback we needed.

And I have an afternoon like yesterday.  Johnny got home first from school and we played a game.  James got home and Johnny met him at the door with "James, do you want to play that game in the yard we did yesterday, the one I made up and you liked?" James threw his backpack in the house and chased his younger brother around the yard, mimicking his play and having a blast. 

It is really, REALLY hard to juggle the needs of both kids during those stressful times and I admit that I don't always do a great job at it.  I realize, though, that however their roles might be reversed or manipulated because of the way that we need to help James through certain situations, brothers are brothers.  They will define their own roles in order to have fun, so as long as we continue to find some way for Johnny to look like he does in these photos, we're doing OK.

Buzz Off Already!

James and Johnny had a great early morning playing outside on this beautiful Spring day, looking for the woodpecker they heard and pointing out all the new flowers starting to come up.  Then it happened.  The moment I dread each year, hoping this year won't be as bad as the last, but knowing it will be, understanding that it will mark the beginning of a four month painful process of de-sensitizing and constant vigilance.   The high pitch scream and slamming door signaling that James had seen his first bee of the season.

It is exactly the same as last year, and the year before that.  The songs and games we rehearsed when he was younger have done nothing to ease his fear.  The efforts to explain that bees are more afraid of him because he is so much bigger and are only trying to help the flowers go unheard.  The social stories, the attempts to get him used to the noise - all useless.  None of them help because of his acute sensory issues. He has amazing hearing and is hyper-aware of the insects darting around him.  He can hear a fly in another room of the house, or a bee from across the yard, and have the same reaction as I do when a mosquito flies closely by my ear in the middle of the night.  He reacts with absolute fright every time he hears that sound or sees something fly by. 

To complicate the situation, I first fell in love with our English Cottage style house because of the southern facing front yard and beautiful ivy covered brick wall that runs across the width of the house, just steps from the front door. It is seriously a gardener's paradise!  I got to work as soon as we moved in and soon had a garden that would ensure bright blooms all spring and summer long.and fragrance as soon as you stepped out the front door, flowering shrubs and plants all around the front stoop. 

It is exactly what I envisioned, but is it now making James' spring and summer complete hell.  He can't even go out the front door without facing his worst fear each time.  So as I sat outside this afternoon soaking up the warm sun and starting to plan how to improve on my garden this year, I was acutely aware of my son sitting alone in the living room, and I realized that the garden is no longer even part of my vision.

My vision is not for one of my kids to be sitting on the couch asking me "why are there bees and flies" every 2 seconds.  It is to have them running in and out of the front door all summer with the kids across the street, playing tag, tracking in mud and sand, asking for popsicles and driving me absolutely crazy.  It is to have to call the boys in to get ready for bed after them playing outside all day, and for them to beg for 5 more minutes.  It is for my boys, both of them, to be looking for bugs under rocks and tramping through tall grass without me having to be right there, waiting for the scream to come.

So instead of looking at what plants I can add to my garden to make it more beautiful in my own eyes, this year I'm going to figure out how I can change it so that my son thinks it is beautiful too.  I may end up with a garden that is very different than the one I originally envisioned, but I guess that is the whole point of what we do as parents.  We have to give our kids the experience they need, no matter what the "it" is or why they may need it, even if it means giving up one we once thought was important.

Rhythm Running

One night soon after James first started to crawl at 7 months, he started moving around the kitchen floor.  I watched, amused, for a bit as he got faster and faster, and noticed he was going in a triangular pattern and to the exact same tiles.  I got down on the floor and tried to play with him, thinking I could start a game of tag or get him to chase me, but he got really upset that I was in his way and just kept trying to go through me to the next "base". He acted like I was a rock in his way.  New Mom, getting a little freaked out, I decided to bring him into the living room.  He just kept going back into the kitchen to crawl his pattern.  I decided he must just be tired, and I must just be over thinking things, so I picked him up and brought him upstairs.  He screamed the entire time and it seemed to take forever to calm him down and get him to sleep that night.  The next morning, when I brought him downstairs and put him down on the living room floor, he bee-lined straight for the kitchen and started crawling in the same triangle, to the same tiles. 

Since that day he hasn't stopped doing these laps.  The more he's moved, the more he's introduced patterns and rhythm into his routine.  Laps around the house became a daily ritual.  He's made it more complex as he's developed, but the basics are the same.   There is a pattern of movement -- specific foot patterns based on whatever song or chant he chooses to accompany the run, and he can not be stopped until HE is ready to.  Trying to stop him beforehand results in consequences that could last the remainder of the day.  At one point, there were 7 different "songs" he created for the laps, each with its own complex foot pattern.  We could sit and each and yell out a "1" or a "4" or a  "6" and would get whatever song/ pattern he had - we did this over a number of months to test it, and the 7 songs/ foot patterns were consistent!

We've learned that letting him "run his laps" allows his body to organize itself.  We know when he does only 6 laps that he's had a good day.  We know when he gets in the door and immediately starts running that something is definitely off.  The best thing we can do is to let him run and chant and make amazingly elaborate foot patterns until he is ready to move on. 

Most of the running happens right before bedtime, which is the hardest time for James.  He can't slow his brain down enough to relax and let his body sleep, so this is his only outlet.  Caring friends tell us all the time that he needs to calm down before bed, but they don't know James.  He can't rest unless he is able to complete this.  I think his body craves it, he actually NEEDS it.   If we go for a hike,  he'll run the whole time,  no matter if it is 1/2 mile or 3 miles.  I think he feels free while he is running, and I hope he never loses that feeling.

So this is James, and this is why I decided to write a blog.  He can't be "explained" in 3 sentences as I was asked by a clinician to do today (although I certainly tried) but I think his story needs to be told.  Even if it is just so I can look at it 20 years from now and remember these every day moments that have changed my life and given it meaning.  At that point, he'll probably be a cross country runner or long distance track champ, or maybe he'll just design obstacle courses and love to go into the woods and RUN, because it seems to be the only time when he is completely content.

I took this clip last night before bed.  James ran laps for 10 minutes or so before I got the video out, and if you watch closely and are able to listen, you can hear his foot patterns. It is the same basic pattern that he's used since he was 2 years old, and we've heard it, and appreciated it, every day for the past 5 years.