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, May 24, 2011

"All I need is this. And this. I don't need anything more. Except this."

Remember that scene from The Jerk, where Navin tells Marie that the ashtray is the only thing he needs?
And that's the only thing I need is this. I don't need this or this. Just this ashtray... And this paddle game. - The ashtray and the paddle game and that's all I need... And this remote control. - The ashtray, the paddle game, and the remote control, and that's all I need... And these matches. - The ashtray, and these matches, and the remote control, and the paddle ball...
That is James.  Well, just with more kid-friendly objects.   He is a compulsive collector of completely random objects - all that he desperately can not do without, none that he actually does anything with. 

He used to be obsessed with things that were the same.  From the time he could grasp objects, he would always have 2 of the same thing.  Didn't matter what they were, but they had to be a match- one for each hand.  Random objects that came in 2s. 

He got a Noah's Ark Little People play set when he turned 1 and I cringed.   If he had one animal from the ark, he HAD to have the other.  He always knew where to find the other, even if I didn't.  He would lead me around, at the age of 1, to collect the match, and he wouldn't stop until he got it. 

When he found out my next door neighbor had a drawer full of markers, he would pull me to her house daily to pick new ones.  He carried 2 markers around for a year.  Not the same ones, just grabbed two to have with him wherever he was.

He started taking a social skills class at 3, and each child got a prize at the end of class.  The first week he picked out a red plastic duck.  The second week he picked out a blue plastic duck.  The third week, green.  The fourth week?  Yup, pink.  The fifth week they focused on "re-directing" (he still ended up with a duck though).

As he got older, the collections changed.  There didn't have to be 2 of anything.  They just seemed to have to be "something".  Trinkets.  A bouncy ball, or the die from the game, or even the empty plastic cup.  He would carry these objects around like they were treasures. 

I remember one very long, frustrating day with a lot of meltdowns and attempts to re-direct.  As Tony and I both seemed about to lose it, we looked over at James, who was trying to hang on to at least 15 random objects at the same time.  We both burst out laughing.  I think it was the empty water bottle he kept dropping and frantically picking back up that put us over the edge and had us reciting that Steve Martin scene.

During his next phase of collecting, he would put everything in little buckets (preferably with lids) and keep them on the shelf behind his spot on the couch.  Every so often throughout the day, he would check to make sure it was all still there.  At the end of the day I would dump the contents into a drawer.  

As time went on, he just started putting most of the things straight into the drawer (and then labeled it with his name). 

Now when he runs in the house with a new object, he goes straight for the drawer.  The new treasure is placed inside and the drawer shut, and then checked and rechecked.  Sometimes I don't even think he looks at it first, but I can never get rid of any of his collection, because he remembers everything he's ever added to it. 

When the drawer gets too full, I move the contents into a random box in my room.  He's OK with that as long as I tell him I'm doing it, and he can see the box with his stuff in it.  Then he starts over again with the empty drawer. 

Months later he'll ask me about that "blue ball" and I'm expected to know exactly which one and where it is.  Most of the time I actually do, but only because I've experienced what happens when I don't.

If he's recently added to his treasure chest and we have to go out,  he'll remind me to lock the house, check the alarm and make sure the gate is shut.  He has about 7 soccer balls, but cries about bringing one to practice because someone else might use it.  After I pull a Mom and tell him he has to bring a ball, he wants to bring Johnny's, not his.  If he does bring his own, he spends all practice making sure that I have it in my possession if it isn't in his.

Collections aren't limited to objects.  He makes videos.  Thousands of them.  Mostly about traffic lights or our cats, but they all need to be saved and cataloged.  He collects TV shows, begging for them to be saved to our DVR even though he doesn't really like TV and has rarely gone back to watch one.  He notices if I erase one though. 

He collects apps on the iTouch.  He collects songs.  He needs to have them.  Since his love of music and games is obviously real and gives him confidence, I've always tried to nurture that.  Games and downloaded songs become rewards, until soon it becomes clear that he is getting obsessive about the collection itself and not the content.  That is when I have to start denying him, and that withdrawal is painful for both of us.

As the new meds start to help with his anxieties, we'll begin to address the hoading issues more directly and try to help him develop some skills to overcome his need to collect and control.  I know he will always continue to collect, but hopefully we can lead him in a direction where the collection doesn't overwhelm him (or us!)

But for now, I know where the blue bouncy ball is.  And the ticket from the deli counter last month.  And the string that was once attached to the balloon he got at a party last year.  Just don't ask me where my wallet or the keys to the car are right now, because I don't have the energy to think about it and quite honestly, I couldn't care less.

Friday, May 13, 2011

The New Autism Numbers

The other day a study was announced showing that 1 in 38 children have a form of Autism.  I was floored. I mean, the bumper sticker on my car says 1 in 150 and I only got that because the same year James was diagnosed, it jumped from 160 to 150 and I thought that was insane.  1 in 38? Unfathomable.

So, I did what I always do when I can't believe what just happened.  I asked my Facebook friends.  I asked everyone to tell me if they knew anyone diagnosed on the Autism Spectrum of Disorders.  I got 37 replies in less than 24 hours.  If you assume (as I always do) that at least 1/3 of my friends hide my posts and a lot more of my friends don't even log in on a daily basis, this is an astounding response.  Of course it isn't any surprise to you reading this because you know that many of the friends I've made during this journey were as a direct result of the diagnosis, but here is the kicker: most of the friends who responded were from college, or from my hometown.  And the most amazing responses?  Multiple friends who described their neighborhood with more than one child on the spectrum.  One friend has 1 out of 3 children on her street with a diagnosis.

So what do I think about the study, and the new numbers?  From what I've seen, the study seems sound.  It covered a specific area of South Korea and included 55,000 children from age 7-14 (All the children, not just ones with a diagnosis).  Researchers agreed that the study was applicable on a global scale.  The "1" included children who met all different levels of criteria to be determined on the spectrum, some so high functioning that you might just think they have "quirks".  What the study reminds us is that even those individuals with quirks require a support system in order to navigate this confusing world and to be the best they can.

I'm glad I watched the Today Show interviews of the study after I heard from my FB friends, because instead of obsessing about "1 in 38",  I was thinking about those neighborhoods I just heard about.  I realized that we all interact daily with someone who has Autism, even if they don't flap their arms or frog hop, or their family doesn't have the bumper sticker on their car.  What it means to us is that the person we are talking to might not understand the facial expressions we are using, or might interpret what we saying literally and get confused.  Or that they might be so preoccupied by the plane flying overhead that they can't even hear what we are saying.

I appreciate the responses I got from my friends because I know they care.  I know that each of them took an effort to find out if the person in their neighborhood needs some extra support, and that they will continue to reach out to those individuals.  I know they will tell others of the person in their neighborhood.  Their efforts will multiply to their own friends, and this way we will continue to build a support network for our neighbors.  And how great will it be when the numbers of people creating the support network surpass 1 in 38?
Today Show story and interview about the Autism Speaks study

Saturday, May 7, 2011

How D'MAC Found my Voice

It was a foreign place for me, although I admit I wasn't comfortable anywhere those days. 5 new moms in a small, narrow room, watching their toddlers through a one way mirror.  Stuck together for 3 hours at a time, 2x a week. Welcome to a new kind of Autism awareness. Our options were to a) obsess about what was going on in that room, or b) try to enjoy the precious time we had where we weren't the ones sitting on the floor, trying desperately to engage. We all immediately hit it off, and became close friends. We horrified people with our constant laughter and our seemingly aloof attitude at the room in front of us.  Just as quickly as we would erupt in giggles though, we would all become quiet and intense when we saw something important happen.  Even if it didn't involve our own child.

Outside of that room, however, I was spinning from what was happening to my world. I wasn't surprised by the diagnosis because he had always been quirky, but the implications of the label still shook me to my core. I leaned on my husband so hard I was afraid I would push him over, so I tried to be strong, but all I talked about was Autism from the moment he walked in the door from work until we went to bed.  I thought I would suffocate him.  Although we talked non-stop about daily therapies and what the books said was happening with my son, I wasn't able to tell him about what was consuming me, and how afraid I was that I was going to fail our son. I felt like I was drowning. I went from being completely confident to hesitating about every decision I made.  I thought that room with the one way mirror was the only place where I could speak my fears because those other 4 moms felt exactly like I did.

When the year was over, we moms continued to see each other, and one by one our group grew. The social worker, the EMT, the PT, the mom whose son was in my son's new class. The model- turned -restaurant owner. The police officer. The teacher.  The police officer's wife. The life coach whose Irish accent was so strong it took me a year to understand her. They kept joining us. Everyone was so different, but we were all the same. Each new mom looking around in awe, saying the same thing: "I thought I was the only one".

We are D'MAC - Determined Moms of ASD Children (well, since I'm being honest, the variable "D" also jokingly refers to Drinking because we can always find time at the drop of a hat to meet out for a cocktail - especially if a mom had a bad day). We talk about everything, or nothing at all. Our kids play together and do special gym/swim programs that the local Y set up after a meeting with our group. Many of our husbands regularly hang out together now. We have regular "meetings" at the aforementioned mom's restaurant, it has become our clubhouse and our safe haven (the summer club will be in one mom's backyard, with a trampoline for the kiddos and a tiki bar for us).

We get things done.  When we learned that our local Autism non-profit lost its funding for their annual family Christmas party one early December 2 years ago, we planned it. In an hour over a carafe of yummy sangria. Got the hall, a DJ, Santa, a great buffet and gifts for each child - all donated by local businesses and supporters. 40 kids had the best Christmas party ever that day. We joked that we should solve the budget crisis. This year we had about 80 kids and are talking about a bigger hall for next year.  "Our" restaurant recently held a drink special on Autism Awareness Day to raise money for the new Y program.  We are involved in our School system's Advisory Council and on multiple committees to improve the lives of children with disabilities and their families. City Councilors have become our champions and our friends - listening to our concerns and supporting us, and helping other moms who might feel alone to find us.  We speak in front of local and state officials to raise awareness and support our children and each other.

We are connected.  To the core.  Many of us see each other or talk on a daily basis. We are there for each other without hesitation. When my son was having side effects from his new medicine last week and his doctor wouldn't respond to me, I frantically called a friend at 9:45 pm. She is dealing with serious medical issues, feeling awful and trying to hold it together for her children (more than one of whom have special needs) in addition to working and running her fledgling non-profit. She shouldn't have even answered the phone, but she did, and she genuinely offered empathy, support and much needed advice. When I saw her the next day for lunch, she looked fabulous and gave me a huge smile, even though I knew that she felt horrible. She gave me a hug and barraged me with questions: "How is he today? Did you make the calls? Did you adjust the meds? Do you feel better?"

We are D'MAC. Regardless of our children's ages or level of disability, if we are just getting the diagnosis or have been there for a decade, whatever our stance on vaccines, if our kids are lo-jacked because they bolt or cling to us for dear life, or whether we have that "warm, fuzzy type of Autism" or we are the ones that take the blows when our children can't control themselves, we understand each other, and we believe in each other. Without hesitation. With each new mom that joins our group, we hear the mantra. "I thought I was alone.  Now I know I'm not."

I knew when he got the diagnosis that my life was about to change.  I just never expected it to change for the better. D'MAC has made this happen. I am able to share my thoughts confidently again, in fact I WANT to share my ideas to help my son and his friends.  I want to help children who were diagnosed yesterday and will be tomorrow. I have found a strength I never knew I had inside me. I want other moms who feel like they are drowning to hear me, so they know that they are not alone. I am able to raise my voice clearly because I know that I have the strongest, most amazing group of women I've ever met standing by my side, ready to act. Without hesitation.

Tuesday, May 3, 2011

Traffic Lights Ahead!

James LOVES traffic lights. He's loved them since he was 4.  He has them all over the house, he writes stories about them, sings songs about them while doing his laps, draws millions of pictures of them and prints any photos he can find off the internet to create books.  We have a hundred hours of FLIP film footage of traffic lights on my computer.  James would film each light we drove through, then watch the videos when he got home.

When he first became obsessed with them, I assumed it would be a passing phase, but 4 years and 3 halloween costumes later, he loves them even more.  Last year, a 5 way intersection was completed near our house.  It wasn't on the way to school, but James knew they were putting up some new lights, so we would change our route to go through it each day.  The day it was completed, it was pouring.  I had to drive through the intersection every possible way that morning during rush hour so he could film it.  Imagine going through a hellish light in Boston traffic in pouring rain, only to turn around and go through it again, and again, and again and so on...

I didn't try to convince him not to do it, because I knew how important it was for him (and I knew how bad the meltdown would be if I didn't!).  He filmed the entire time, keeping track and saying "last one" when we were about to go through the last possible way.  I know it is probably silly of me to have done this- it took over an hour, but I think it was one of the happiest times of his life.

I think he is drawn to the lights because the are so predictable.  He can't handle not knowing what is coming up next, he won't even flip a coin for turn taking - not because he is afraid he might lose, but because he doesn't know which side is going to turn up, and that troubles him.  He's always been fixated with patterns and colors, so it totally made sense to me when he started obsessing about the lights.  His interest goes deeper than that, though- he notices and appreciates the differences in the lights.  He notices the (I'm so out of my league here I don't even know what to call them) specifics of the frame, and whether they are installed above the intersection or next to it.

A few weeks ago when we visited the pharmacologist for the first time, the Dr. asked James what he liked, and no surprise, James answered traffic lights.  Dr. then asked the reasonably obvious question of a young child who loves traffic lights: "what is your favorite color?" and I laughed, because I knew what was going to happen next, having heard this question and James's answer about a trillion times.  James answered "blue".  Dr. assumed James didn't know his colors and tried to correct him to green instead of blue, but all of a sudden James cut him off mid-question to say "most traffic lights have black backgrounds, and some yellow.  Some have gray.  I like the blue ones best.  I've never seen a blue background, but have pictures of it from Mom's computer.  I want to see a blue traffic light most of all because I think it would be beautiful."  Dr. was floored, and I was thrilled to hear him actually explain his rationale.  That, to me, was the best thing ever, to hear James explain his feelings to someone else, something he could never do until this past year.

I've begun to think of traffic lights as a symbol for our journey.  We'll be moving forward thinking everything is going smoothly, then all of a sudden, there will be a warning sign.  We will only have a split second to decide what to do.  Do we stop suddenly and address the issue that is coming up, or do we speed up a bit and try to make it through without any mishaps?  For James and me, I've learned that it is far better to stop, take a breath and evaluate the entire scene before we know it is safe to continue on.  Everyone needs a break to regroup, but kids with ASD (and their moms!) need it more regularly, because quite frankly, Autism usually looks a lot like this:

So, I love traffic lights too.  I love them because my son trusts that they will always do the same thing, but also because he sees something in them that I don't - he thinks they are special and notices every single one of them and appreciates their uniqueness. 

The other morning he noticed that one green light has a swirl when it isn't lit.  Now he wants to go to school that way every day now so he can watch it.  So we will, if only so he will keep talking to me in the car and helping me figure out when I need to stop and when it is safe to go.