He runs to make his mind still, to organize himself and to get rid of the noise from this loud, confusing world. The more he's moved, the more he's introduced patterns and rhythm into his routine. Laps around the house are 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 be.

This is James, and this is our story.

Tuesday, April 26, 2011

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.

Saturday, April 23, 2011

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!

Wednesday, April 20, 2011

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.  
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."

Monday, April 18, 2011

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.

Saturday, April 16, 2011

"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.

Sunday, April 10, 2011

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.

Thursday, April 7, 2011

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.