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, August 30, 2011

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).

Wednesday, August 24, 2011

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.

Tuesday, August 2, 2011

It's Not Fair

Parents hear "It's not fair" all the time. Most of the time it is merely an aggravation, and responses tend to be something like life isn't always fair, or it all evens out in the long run, or the ever-popular: "you get what you get, and you don't get upset".

James has always been hyper-focused on making sure that everything is divided perfectly evenly, and is constantly worried that he is getting the short end of every stick. We try to make things as even as we can, but it isn't always possible. And unfortunately, he is not able to understand that it all evens out in the end, and he can't reconcile the (many) times he actually gets more with the specific moments he feels slighted .

So I'm used to hearing "It's not fair", and I've been able to deflect it somewhat. Until this summer.

This summer, it has become clear that James is not talking about who got more minutes playing Wii or who got more brown M&Ms.

He means "It's not fair that I have autism".

He has realized that he is different. He recognizes that most things come easily to Johnny, and he gets very frustrated when he can't do those things as well as his little brother. He notices that Johnny runs around the pool, going down water slides, going in the deep lap pool and on the obstacle course, while he stays in the shallow part of the zero entry pool, staring through his clear inner tube at everything going on around him. His friends get bored in the wave pool and go off and play with Johnny. James stays where he is or sits on the steps, watching. He is lucky to have a friend who stays with him and plays the games he loves, but he still notices the ones that gravitate toward his brother, and he wonders why. Now he only agrees to go if that friend will be there.

I don't know how to respond to him, and I don't know how to make this easier for him. This is uncharted territory for me, and I'm completely unprepared.

I've tried explaining autism to both of them ("Mommy, Do I have Autism Too") by highlighting the unique things that James is able to do. I haven't completely dismissed the challenges that James faces, but I've been focused on making sure that he doesn't feel like he is less than his brother or friends in any way, and I haven't adequately dealt with how to react when those situations arise.

I've been avoiding it, in that same way I avoid laundry or cleaning the kitchen. I realize that the longer I wait, the more it will pile up, but I can't seem to take it on. It's just TOO BIG.

His social worker is wonderful, and I know she is going to be a huge help in this new "chapter". I don't even know what to call it - I can't say it is a challenge or an obstacle, because it is his entire life and it is not something that we are going to fix or he is going to overcome.

He is going to face this for his entire life.

He is going to face this for his entire life.

There. I said it.

I think that was the first time since the bleary-eyed early days of the diagnosis that I actually said it.

Now that I've said it, I think I can start working to support him, however I can, and with whatever resources I can find. But unlike those first days of the diagnosis, I know better than to try and take it all on by myself.

I'm going to need your help.