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.

Monday, December 26, 2011

Moment of Truth Monday - the Naughty List

Mondays' Moment of Truth Series: Because life with 2 literal children is full of those, um, insightful moments.

James asked for the movie "Elf" for Christmas this year.

It surprised me since he doesn't really like ANY movies or shows and never wants to watch them. Johnny loves them, so if we put on a show he spends most of the time climbing on and off his Dad or me, zipping back and forth through the room like a dragonfly, questions coming in rapid fire succession the entire time.

It is totally exhausting to watch a show with him, but it is always amazing (and often down right belly laughing) to hear how he interprets the things he sees and hears.

This comment of his was my favorite though, because it was so totally insightful and innocent and, well, just James.

He said it when Santa told Buddy that his Dad was on the Naughty List.
"I'm not going to care if I go on the Naughty list when I'm a grown-up, because grown-ups don't really get many good presents ever. Right Mom?"

Saturday, December 24, 2011

The Gift

Editor's Note: I first wrote this post as a Christmas gift last week - I was going to surprise Tony. But when I sent it to my friend to read, she asked a few good questions that led me to realize that I had been thinking about it from my own perspective and not from Tony's. Even if I am telling our story truthfully in these posts, they tend to be a little, er, over the top. Since this is about the gift that Tony received, I want it to be as true to him as I can make it. Thanks, A, for reading it and for making me think about the way that I wanted this to come out.

I'm giving Tony the perfect gift for Christmas this year. It is a 3 pack of Hanes white undershirts, Size 8.

Tony is an amazing father. Attentive, patient, and humorous. He somehow maintains composure when our lives are the most chaotic.

When James was first diagnosed on the autism spectrum and I was spiraling out of control, he was the one who kept me grounded.

He is "our rock". So to watch him be virtually invisible for the past 8 years has been difficult for me.

Don't get me wrong, James loves his Dad. But James was never able to show his love in the way that most parents expect. When Tony came home from work every night hoping for a huge hug from his boy, there was none waiting. If he and James were in the same room and James needed something, he would call for me out in the other room. When James came into our room at night, it was me he was looking for. And if I had to leave to attend to Johnny, James would follow me instead of staying with his Dad.

Autism had changed the way we needed to view our world, and so we adapted to give James what he needed. Still, autism hurt me, so I imagined it tore Tony apart.

But Tony isn't exactly as dramatic as I am.  As I obsessed over every behavior or lack of reciprocity, Tony developed a different way to look at it. Instead of letting all those behaviors get to him, he turned it all around. When he got no reaction from his son each night as he walked in the door, Tony would cheerfully yell as loud as he could "Hi Dad! So glad you are home! How was your day?" and James would say "Dad, you're just joking, right?" It wasn't the dialogue most dads get, but it was interaction and it worked for the two of them. For years.

It started a few months back with a simple "no Mom, I'll stay in bed with Dad." when I had to leave to go take care of sick Johnny. I laid awake all night, knowing how huge it was. Wondering if Tony was awake thinking of it too.

Then a few weeks later when Tony was working late and I was getting James a t-shirt for bed, he asked "What does Daddy wear to bed?"

I told him Dad wore a white T-shirt and he immediately wanted one. When Tony came up to give him a kiss goodnight, James said "Look at my shirt Dad. I'm just like you".

I knew then that everything was going to be OK. And even though Tony didn't make a big deal out of it (and is probably not even thinking of it anymore), I knew he did too. Just in his own quiet, thoughtful way.

And I realized something else while re-writing this post to be less, er, dramatic.

I just gave myself a gift too. Reminiscent of days I actually went Christmas shopping in stores - the days before kids, when my shopping rule of thumb was "one for you, one for me". Except this gift is SO MUCH better.

I was able to sit quietly and reflect on the amazing relationship that Tony and James have, the way the Tony is showing James by example how best to react to a world in which things don't often go as expected. The way James found his own way to show his Dad how much he loves him.

It is also when I realized I could never surprise Tony with a post. I can't write a story about our journey without his input. I don't even want to.

Once in a while presents come in a package you never, ever could have expected. These are the very best ones of all.

Here's hoping you have a safe and healthy holiday, and the new year brings you a very special gift.

With love,
(as always with Tony, James and Johnny)
December 2011

Monday, December 19, 2011

Moment of Truth Monday - The Power of Words?

2 weeks ago today, James started crying when it was time for his homework. Since tears often accompany homework, I wasn't really surprised.

But then he got really upset and said "My homework made me sick. We started it in school and it made me really sick!"

Slightly confused, I looked in his backpack and laughed to myself when I saw the assignment. "James, your homework can't make you sick. Words can't make you sick. It's just a poem. Let's sit down and do it together".

James was so upset he could barely make it through the worksheet. We finally managed to finish it and I told him he could go play on the iPad while I made dinner.

He barely ate dinner, and an hour later wanted to go to bed. He was burning up. He spent the next 2 weeks out of school with pneumonia.

When he finally went back to school last Thursday, I told his teacher and we laughed. "Ah, the power of words" she said.

Power of words indeed. This was his homework:

Tuesday, December 6, 2011

A Holiday Party for the Rest of Us

As moms of children with autism spectrum disorders, our reactions to holiday events often sound like this:

"I can't do it, I can't handle them in there."

"It's too much."

"They don't know boundaries and will bother the other children."

"I'm not up to it. I can't take the looks".

"There is no way he'd sit on Santa's lap anyway, why bother putting either of us through the pain?"

"I'll skip that Christmas party."

"Maybe next year."

So when we learned a few years back that our local autism support group lost the funding for their annual holiday party for families, my group of autism mama friends decided to organize and host it. I wrote about D'MAC planning the 1st party here.)

Having this chance to give back to our community means so much to all of us that we keep doing it, and it keeps getting bigger. And better. This year, we expected 100 children to come, and we were ready to make it an amazingly special day for them.

Everyone stepped up to the plate. SafetyNet by LoJack donated gifts for every single child and more pizzas than I have ever seen in my life. TILL sent out invitations to all the families in the city they knew affected by autism and to whom they had provided support in the past. They encouraged families to come and kept track of the ever growing guest list. They helped wrap and organize 100 presents, each appropriate for the deserving children.

A DJ friend who has generously run the show for the past 3 years spun Christmas and dance tunes and children of all ages twirled and flapped and frog hopped and jumped and yelled.

The West Roxbury YMCA, who already schedules programs specifically for our kiddos, came with a team and supplies ready to paint faces and do arts and crafts.

Parents let their guards down a little bit and let their children run around. They didn't have to be vigilant to make sure their children were being "appropriate". They just let their children be themselves. They hugged old friends they'd met through various services and therapies, they introduced themselves to other parents who are traveling the same journey. They sat and relaxed. They hung out at the bar and watched their beloved Tom Brady lead the Pats to victory (yes, of course there was a bar - this was a D'MAC party!)

Another friend played Santa to these children for the 3rd year in a row. He could have told one of his buddies it was their turn. It would have been so easy to let someone else do it. He came back. He looked around the crowded hall at 100 children and took his seat, ready to deliver on a very special promise. He took a picture with every single one of them and gave them each a present.

This was no mall Santa. He was patient and jolly. He was the real deal to 100 children, including my own 2 boys who had never come within 20 feet of Santa before.

And these are just a few of the things that I heard during, and after the party:

"I think my strongest feelings stemmed from the sense that we belonged there.....that we were truly among friends old and new, who understood and accepted us for who we really were..Our typical concerns about Daniel at a party or event did not exist because his limited understanding of boundaries would be accepted...there were NO boundaries and no one was judging us/him..."

"For most of these families this is the only chance they can have their child visit Santa. There are no trips to the mall, no waiting in line for Santa. If a child melts down, no judgements, no 'why is this so hard'. "

"Since I was the only thing standing in the way of the kids on line and Santa I spoke to a few of them and one whispered to me "I know this isn't the real Santa because he is in the North Pole but I'm not going to tell the little kids because that would be mean" and then he jumped up and down when Santa finally arrived. For our kids...literal thinkers and truth-talkers this was huge. He kept it to himself and got caught up in the excitement of Santa despite knowing the truth."

"It was truly heartwarming to see how excited my kids were about going this year, and then to see how much fun they had at the party. But mostly I was almost in tears seeing all the new families and how much those kids really loved it. Really special."

"This is the first party that Timmy has been able to hang at for awhile so it was fun for all four of us. Granted, he was sitting at a bar watching Tom Brady... his mama's son!"

"I was supposed to be on 'line control' for the Santa line. Mostly I just body-blocked for the photographer so he didn't get bumped. I can't tell you how many (non-verbal or barely verbal) kids that passed by in line grabbed my hand and just held it. They managed to say it all in that gesture. So sweet."

"As always this group never fails to deliver....and boy did you ever. Robbie & Ava had a blast even when he was in sensory overload! He just went outside w/ John for a few to organize himself & came back ready for more fun."

"I was so impressed with everyone's generosity. From the gifts, to the food, to Santa Claus, it was a great day. Especially impressed with all the Momma's & the Poppa's who worked hard organizing this so my gang could enjoy! A big thank you!"

"It meant a lot to see so many new faces, I know some are just starting this journey and well, if they walked away with a smile thinking I'm not alone, that's the best Christmas present!"

Unfortunately, it wasn't perfect for everyone. A few kids couldn't come into the hall because of the noise, or had to leave due to sensory overload. James made it 2 hours before he started pulling me to leave. There were no looks. I felt none of the anxiety that I always do with a public meltdown, because everyone understood.

And you know what came from those difficult times?

Instead of "this was too big and too much, next year we'll scale it back so it is easier for our own kids", it was "Next year we need a much bigger space, with more room to move, and a separate room for sensory breaks. There are more families that we need to bring".

We've already started working on it. We're meeting next week (for drinks at the Grotto, of course) to re-cap and start planning for next year.

Here are just some of the highlights from an unbelievably wonderful day.

Thanks so much for everyone who worked so hard to make it successful, including:
Pauline Lussier and SafetyNet by LoJack
Lynn Tougas and Joshua Lyons of TILL's Autism Support Team
Santa Mike O'Brien
DJ Paul Aube
Marion Kelly, Mary Carew-Lyons and The West Roxbury YMCA
Sophia's Grotto
Fornax Bread Company
John St. Amand and Jennifer Lawlor, photographers extraordinaire
Boston City Councilor-at-Large John R. Connolly
Boston City Councilor Matt O'Malley
Boston City Councilor Rob Consalvo

And to my amazingly incredible D'MAC family,
You moved mountains to make this special day possible for so many children you didn't even know, and you brought hope, understanding, support and love to every parent who walked through those doors. There are not enough thank yous in the universe for you all. xoxo

Wednesday, November 23, 2011

The Road to Thanksgiving

My Grandparents lived 5 hours away from me growing up, and I only got to see them about twice a year.  We'd make the drive in our big old station wagon the day before Thanksgiving, sprawled out with sleeping bags in the "way way back", back when you had free roaming rights in the car and didn't even know how to use a seat belt.

The drive was not all "over the river and through the woods". It was NY State Thruway almost the whole way up.  Painfully boring. I hated the ride.  There was nothing to see, and on the odd chance something interesting was spotted, I was the one who ALWAYS missed it. I stopped bothering to look. It was worth it though to spend the weekend with my grandparents, aunt, uncle and cousins.

When I went away to college, it was only about an hour away from Gram and Gramp's house. Still, my mom made me drive home to CT so we could drive to Gram's together, as a family. So I would make that 5 hour drive on four different days, each Thanksgiving weekend. It certainly wasn't the route I expected (or wanted) to travel to spend time with my family, but I did it because it was important to my mom.

The only saving grace was that I had a massive crush on the boy who would drive me and my friend to and from school, so we would wear sunglasses and pick seats strategically to be able to watch him in the rear view mirror the whole way.

He graduated a year before me, and without that, um, added incentive to comply with mom, I finally put my foot down about the drive. So Senior year, I went straight to their house from school, a day early, and got to spend a whole extra day with Gram and Gramp, before anyone else arrived. It was wonderful.

I felt like this:

After I graduated, I spent my first Thanksgiving away in Japan. I felt a little lost, but spent the weekend exploring. The active volcano I climbed and the wild monkey that jumped out at me on the side of the road and bit my arm gave me a lot to tell my family when I found an international phone booth and called home.

Gramp passed away while I was in Japan. Gram joined him not long after I got home. Without them, and with my parent's split around the same time, Thanksgiving pretty much lost all meaning for me.

If wasn't until Tony and I got engaged that Thanksgiving gave me new hope. His huge Italian family welcomed me, and my mom, with open arms. Dinner at Tony's cousin's house is something to look forward to every year. 30 - 40 family members (and any friends who might be without a family that year to dine with) just being together. No pretenses. Nothing but a lot of amazingly comforting food, wine, chatting, wine, laughing. Did I mention wine?

Still, the route we take is different than what I expected in the early years of our marriage. Autism and sensory issues make it very difficult for James to handle the day, especially so when he was younger, so I've always been slightly on edge and planning my next move to make sure that he is calm. Over the years we've learned what he can handle and how to help him if there is sensory overload. I don't put any pressure on him to sit at the table the whole time or eat anything he doesn't want, because I'd rather have him remember the day being about family instead of about rules and restrictions. And Tony's (now my) family gets that. Like I said, in this house, on this day, there are no pretenses. Everyone dotes on him and his brother and they make it an amazing day for them. One they will always remember and cherish.

We make this journey because we want to be with family we love, so we've changed the route a little to make it work for our family. We'll travel tomorrow on Thanksgiving Day, all 4 of us together. I now get to stare at the 3 boys I have ginormous crushes on and will for life. This time I don't need to hide behind sunglasses, fully aware that I wouldn't trade my life for anything, no matter where the road leads or how beautiful the scenery.

I hope your trip today has been safe and your day tomorrow is one filled with people you love, honoring those who have sat at the table with you and who always hold an important piece of your heart. Happy Thanksgiving.

Monday, November 21, 2011

Moment of Truth Monday - Giving Thanks

My amazing friend (read all about her and my autism mama friends who saved me here) owns the fabulous Sophia's Grotto and is sending out a card for Thanksgiving. She decided to make it from kids - straight out of the mouths of babes.  I'm pretty much ruining her plan by posting this, but you'll see why I had to use it for my "Moment of Truth Monday". AND I don't think any of her peeps will see this to know. If they do, sorry Sonia (with a silent cheer that people actually read this;)

So I asked Johnny Drama what he was thankful for. His reply was typical Johnny. "I'm thankful that I never got coal for X-Mas (yes, he actually calls it X-Mas) and I never will".

James' answer was, well, I have no words. This is his post tonight anyway.

Without hesitating, he said: "I'm thankful I got picked to be in this family".

Me too Buddy.  More than you'll ever know.

Monday, November 14, 2011

Moment of Truth Monday

Johnny, 6, asked if he could do the schedule for this week.

He thoroughly went through his week with everything important he had to do. When it was my turn, he helped me figure out what my week would look like.

Looking at my sparse duties for the week, I asked if we should add some chores.

He gave me that condescending look he perfected at age 4 and replied "um, Mom, you don't really DO any chores".

Sunday, November 6, 2011

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.

Saturday, November 5, 2011

The Fear

"Mommy, I don't want you to die before me".

Tears are streaming down his face. He is unable to look at me. He is almost unable to talk, the words are coming out in choked up tears and from behind his hands.

"I want us all to die together. I don't want you to leave me.

I don't ever want to go on an airplane. I might fall out."

He is starting to hyperventilate.

"What if we go off a bridge in our car?  What if there is a driver coming towards us? A bad driver. And he pushes us off the bridge and you can't get me."

He has buried himself in my chest. I can feel his heart pounding.

"What if there is a fire in our house? In my room and you die trying to get to me?"

The words start coming even more furiously, more urgently. 

"What if a robber comes and kidnaps me? What if he looks like you and I don't know he is a stranger?"

I try to reassure him without letting him hear the fear in my own voice. I tell him he will be safe, forever. That I will keep him safe. I make up a special phrase that only he, his brother and I know. I tell him he can ask me to say it anytime and know that I am his real mother. I have to tell him I will not die before him, that we will all go to Heaven together. All of us. Even Chewie and Owen. He does not understand any other alternative. His mind cannot process the thought of being here in this world without me.

The Fear comes out of nowhere. But it always comes, and I don't know who is more impaired by it each time, him or me.

I sit here now, John Lennon's "Beautiful Boy" playing in the background. The song we played at his Christening. The song I sang to him as I put him to bed each night as a baby. The lyrics I know by heart and make me smile to think of him every time I hear it.

I turn my back to them so they can't see my tears. I am so grateful his friend showed up when he did to distract us both. He is smiling now, but his eyes are still bright red.

I feel sick to my stomach. I know my words did nothing to reassure either one of us.

This distraction will be fleeting. The Fear will be back. And although I can protect my son from strangers, bad drivers and fires, I know that I cannot protect him from his own anxiety.

That is my own biggest fear.

Wednesday, November 2, 2011

CVS Caremark AKC Pats Day Part 2: Post Game Analysis

editor's note: if you haven't yet read Pre-Game Planning, this will make a lot more sense if you click the link and read the background (at least I hope it will...)  

As any good manager knows, it is often necessary to make adjustments as the game approaches. 

he was ready to go at 6 am!  (We didn't leave until noon
so he had time to take his pajama pants off...)
I knew the amazing crew at CVS Caremark All Kids Can got James a t-shirt, but I wanted him to feel like he was a Patriot before he even left the house. I was thinking Wes Welker, but the football jersey gods had other ideas, so James was sporting an equally fantastic looking Danny Woodhead jersey for his arrival at the stadium. Luca, his close friend and the clear leader of the two, was appropriately wearing #12.

The climate change gods threw another wrench in the game plan and decided a Nor'easter would make the day more interesting, so All Kids Can Patriots Day was moved to the practice fieldhouse. Not the jaw dropping stadium experience I was hoping for, but probably a good move since 5 minutes after we arrived the skies opened up.

The boys were thrilled to walk into the fieldhouse and directly through the enormous, totally cool inflatable Patriots helmet. Once on the field, they were ready to play some football (or in James' case, some sort of hybrid football/ soccer/ rugby/ handball sort of game).

Coaches Patrick "Triple P" Pass (as dubbed by one of the kids), Max Lane and Jon Williams could not have been more amazing. They were funny, patient, engaging and encouraging, and that was just with us parents. With the kids they were extraordinary!
Role Reversal

As manager, you always hope your players are mentally prepared for the game, but sometimes they need a little extra motivation.  After stretching with the coaches, Luca wasn't thrilled with the drills and preferred to break off and start his own game, pulling his little shadow with him. Luca's mom and I knew we need to adjust the game plan a bit so we offered our players a little bribe incentive to stick with the team and give 100%.

Then I saw something amazing happen. My little follower, who has NEVER gone against Luca's game plan, started dragging, yes, physically DRAGGING, his friend back to the rest of the team. We watched as roles were reversed for the first time in their 3 year friendship, and I was thrilled to see my son exude the confidence needed to lead by example for the first time ever. It carried over onto the field.

James tackled the Tackle!

Luca settled more easily into the routine of the drills, and the boys had fun, but then something set James off.  It was the arrival of the Nutcracker Pat Patriot, who must have sensed that the misnomer came from Luca, because while Luca's mom and I were in hysterics laughing about it, Pat Patriot snuck up behind Sheri and scared her silly. Luca saw his mom in distress and tried to take down Pat Patriot, and James cowered behind a coach, far away from all the action.

Luca and his beloved Nutcracker
It didn't take long for Luca and Pat Patriot to become friends, and the two palled around for the rest of the session. James, however, was on edge whenever he came near, but the volunteers, coaches and cheerleaders tried their best to engage him (extra special thanks to Sarah, a Patriots cheerleader with a heart of gold, for coming over and kneeling down to talk to James, trying to make him feel better).

Lunch might have been one of James' favorite parts of the day, but Luca was more interested in the autographs. When it was our turn to get autographs from the players and cheerleaders, Luca sauntered over to the cheerleaders' table and said "Hey ladies, who would like my autograph?" Athena graciously agreed, and Luca gave her a poster of the cheerleaders, inscribed "To Athena, From Luca".  Seriously, how can you not love this kid? The boys scored autographs from everyone, plus extras from the cheerleaders (just in case Dad wanted one).

Although James preferred to sit on the sidelines a little, he had a fantastic time, and when it was time to go, we got a chorus of "It's over already?  But we don't want to go", as well as some tired sounding "That was the best day ever, wasn't it" from Woodhead and Brady in the backseat on the way home as they investigated the contents of the backpacks they were given and ate the french fries they worked so hard to earn.

A huge thank you to CVS Caremark All Kids Can and The New England Patriots for such an amazing day. We are lucky as a community that you not only believe all kids can, but that you donate your time, money, resources and most of all, your undivided attention to our children so that they can believe it also.

Thank you Patriots (do you notice that the coaches are all blocking Pat Patriot from James?;)


Friday, October 28, 2011

CVS Caremark AKC Pats Day part 1. Pre-Game planning

James and I have an incredible opportunity tomorrow, all thanks to a friend I met through writing this blog and some people we're going to meet tomorrow. People who believe in creating amazing opportunities for kids and work really hard to make them happen.

Tomorrow we are invited to participate in the CVS Caremark All Kids Can Patriots Day at my old stomping grounds, Gillette Stadium. I haven't been back there since I was a consultant for the Patriots in '04. We won the Superbowl, James was only 1 and Tony and I had no idea what autism really meant.
It is going to be a really special day, for both of us. Check out what they have planned:

The stadium will be transformed into a “gridiron of dreams” for children with varying disabilities who will spend the afternoon with former New England Patriots players gaining first-hand experience of what it’s like to be a Patriot for the day!

The kids actually get to run out onto the field through the oversized Patriots inflatable helmet. How cool is that?  Then they get to do warm-ups and stretches, cone running drills, and blocking, kicking and throwing skills.  When they are all tired out, we'll enjoy lunch together, and then get autographs and take photos with alumni, and, of course, the day wouldn't be complete without meeting the mascot of the New England Patriots – Pat Patriot, and then visiting The Hall at Patriot Place presented by Raytheon.

I'll be taking tons of pictures and posting a Gil Santos-like play by play on Facebook (on my own wall and on my Running to be Still FB page) and I'll be tweeting as much as @ochocinco usually does. Follow me on twitter by clicking here or by searching the hashtag #AKCPatsDay to get all the action from the day.

Since I adhere to the Brady/ Belichick school of pre-game preparation, there are some things I need to do to prepare for tomorrow. First and foremost, I need replace an outgrown jersey for James so he arrives in uniform. I'm thinking he is a Wes Welker kid. Do you agree?

I can't wait for tomorrow. It is going to be an amazing day, thanks to CVS Caremark All Kids Can.

Monday, October 24, 2011

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.

Thursday, October 13, 2011

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.

Monday, October 10, 2011


Last year for our 10th anniversary, I desperately needed to get away with Tony.  I needed the chance to get back to just us, if only for a day.  A good friend generously offered us her house on a beautiful river, where we could easily drop our kids at my in-laws and spend time together alone, and I am forever grateful for what she gave us.

The weekend was amazing.  The weather was perfect, crisp and clear like our wedding day.  We spent the afternoon relaxing in the sun watching the boats go by, just talking to each other without interruption.  I brought the photo album(s) from our wedding - we had over 15 rolls of film that our friends took during the day and I put into books as soon as we were married and I adored, but after life with kids started we never got to spend any significant time looking at.

Going through those albums, alone for the first time since the kids were born and we understood what parenting meant and what autism and sensory processing disorder could do to try and break us into a million pieces, we talked about what that day actually meant to us.  

Of course it is always going to be one of the three most incredibly special days of my life, but together we talked about how that day was totally focused on the fact that we were with all our family and friends, and that this, 10 years ago, was the last time we were all together celebrating with the people who meant so much to us.

So this year for our 11th, we decided that our celebration would be to try to bring our friends and family back together to that day.  We hope this quick video will bring you some smiles.

And for our friends we weren't able to share the day with (blame Tony's large, well-connected  Italian family) and all the amazing friends we've met on our journey since then, we know how lucky we are and we can't imagine life without you all in it.

We can't begin to pay you back for the support you've given us, but we appreciate you every second of every day.

Love you always,
Kris and Tony 

p.s. Some people are having trouble watching the video below on mobile phones - here is the direct youtube link if you need it. http://www.youtube.com/watch?v=_nknM3vfu7c

Thursday, September 29, 2011

Reaching out of my Comfort Zone, for Good

Before I start, I have to make sure I say 2 things.  I KNOW how lucky I am, even though I tend to whinge (best word ever that I learned from one of my favorite people in the world).  James has his own challenges, but I do not think at all that he is, in any way, shape or form, a challenge.   He and Johnny Drama are my world.  I thank my lucky stars every night that I have them both. 

Also, Tiny Miss, this post was written before you and I talked today, so PLEASE do not think I was trying to get off the phone with you, or hesitate to call me anytime, about anything. xo

Actually, make that 3.  Sorry Tony, but because of what I managed to do today, there is a lot I didn't do.  I know you'll understand, though, and pick up the slack for me. again. xoxo

I was feeling sorry for myself this morning.  And guilty.  Guilty that I watched James get on the bus and tear up, again, while I went back in the house and poured a cup of coffee, still wearing slippers.  I felt like I should have been the one sacrificing, he goes through enough every day without me forcing him to be miserable for the hour before and after school, just so I don't have to drive across the city.

I decided to work out to take my mind off it, and it helped a lot.  

Then I had an even better idea.  I was going to sacrifice my own comfort in order to accomplish something really big this morning.

Anyone who knows me, knows that above all else, my biggest fear is talking on the phone.  I can't do it.  I would rather drive 2 hours to have a 15 minute conversation than just talk on the phone for 15 minutes, even with my own family.  I would rather speak to a room of 100 people than talk on a conference call to 3 (anyone remember how nervous I was for city council testimonies? Yes, talking on the phone is THAT uncomfortable for me).

I would rather do almost anything than talk on the phone (except hold Johnny Drama down while he gets stitches.  I did that once and we both were traumatized.  The security guard thought Johnny was being tortured, and the people in the ER waiting room were all awestruck and horrified when they finally saw us re-appear, sweaty and tear-stained.  If there is a next time, it is agreed that Tony will bring him.  I will even call someone and stay on the phone the whole time they are gone.)

There are too many unknowns on the phone.  I never know what to say.  When I do say something, I'm always afraid it came out terribly wrong and the person I'm talking to will get the wrong idea.  Without facial expressions to guide me, I don't know when I'm crossing the line. 

I go to great lengths to avoid phone conversations.  Texting, email and facebook conveniently allow me to avoid talking on the phone 99% of the time. 

So, this is who I am.  I'm not proud of it, but it's me.  Back to today. 

I'm on the board for Boston Public's School's Special Education Parent Advisory Council, and I offered to check SPEDPAC's voice mail for messages from families that might need assistance.  The mailbox was full with over 43 messages from parents who have no answers to their varied issues and concerns.

So, I fought against every instinct I had, and I picked up my cell phone.  I called them ALL (well, all except the 3 in Spanish, and the 2 others I knew were way of my league.  I was smart enough to pass them on to the appropriate people.)

I left messages for those who didn't answer, and gave them MY cell number.  I told them they could call me anytime.  And I meant it. I am now expecting calls from people I have never heard of before, and they could come at any time.  And I will have to answer.  That makes me incredibly uncomfortable, but at the same time, it makes me feel hopeful.  These parents, who left a message on an automated voice mail asking for help as a last ditch effort hoping someone will listen, will hear a message from a real person telling them they want to help.

For the ones who did answer, I asked them about their children.  I asked what age, what school.  I asked what was going on.  I asked how I could help them.  I suggested they come to the general meeting tonight and share their voice.  I told them to find me so I could meet them.  All of them.

Like I said before, I know how lucky I am.  I have the most amazing family and support system, and I don't know many other parents (of children with or without special needs) who have all I do. I decided to get out of my comfort zone a little bit to offer that support to others. 

I know it doesn't seem like much to hear for many of you (yea, big deal, she made a few phone calls.  wow.)  But for me, it really was HUGE. And by doing it, I gained more than I ever imagined I could today, and I already decided I'm going to offer to check for more messages tomorrow.

Monday, September 26, 2011

Getting to the Heart of the Matter

James' bus was 15 minutes late today.  He got off and immediately melted into tears, completely inconsolable.  I tried to get him to tell me what was wrong and he couldn't speak.

When he finally stopped hyperventilating, he told me the bus went the wrong way.  Then he told me he was the last one on the bus when he is usually the first (There are 5 kids on the bus, he is normally somewhere in the middle).  I explained that sometimes drivers need to go a different way, that he was always safe, but he just started crying harder.  

I asked if he was nervous that he was the only one left, or if he was upset it took longer than it should have. He clung to me, and told me that they forgot about him. He then made up all types of different scenarios as to what led to him being the only child on the bus, and each of them was completely different. Then he told me he can't take the bus anymore because there is always going to be something that happens.

The thing is, because he has trouble expressing himself even on a good day, I have to ask leading questions to coax the story out of him.  And most of the time he takes those questions literally, as if I know what the truth is and am feeding it to him. 

I think he is so traumatized by the anxiety that he can't determine what actually happened yet.  Right now he is running laps in the house with such intensity that it is like he thinks he will fall off the face of the earth if he stops.

So, when you have a child who has great difficulty expressing his own thoughts, and is only comfortable answering straight forward questions, and then that child becomes debilitated by anxiety, how do you get to the root of the problem and figure out a way to move forward when only he is the only one who knows what the trouble is?  Does he even know what the trouble is?

Right now I just need to get him back so we can get through tonight, and all the added pressure that comes with homework and reading (of course it is Tony's super late day at work, so hopefully we won't all spiral completely out of control before he gets home).

Thankfully his teacher understands the anxiety that he gets from nightly homework, so we can take small steps tonight, but I realize that I'm basically putting a band-aid on it instead of finding a way to get to the heart of the matter. 

The problem is, I don't know if it is actually possible for us to really get to that.

Sunday, September 25, 2011

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.

Wednesday, September 21, 2011

Taking Back September

I love September. The weather is perfect, the smells invoke memories for me of crisp, cool nights playing soccer under the lights, going to football games and hanging out with friends. All the time in the world.

New school year, new opportunities. Pure magic.

Until this year. I started out not being able to get the 10th anniversary of 9/11 out of my head, and now I can't seem to get into a groove.  Back to school month is always a bit chaotic (especially since James has been in 4 schools in the past 5 years) but this year, it has been unbearable, and I haven't wanted to deal with any of it.

Meetings are double booked. Homework trauma started on the first day of school. Both boys started crying about the work and the schedule by day 2. Buses come to different stops at the same time, if they show up at all. I have to drive to Johnny's stop (in my own neighborhood) just so I can get back home for James. The other day it was 2 hours late, and I spent my time switching between transportation police trying to track it down and trying to find a neighbor to get James off his own bus.

All the while, I've been running in circles, accomplishing nothing and getting more frazzled by the moment.

I'm coming undone. I've started obsessing about my younger one's emotional development and behavior, looking for signs that probably are only in my own head.  Tony does his best to salvage the evening when he gets home from work after a long day, but he has 2 hours to read with the boys, eat dinner and try to unwind before he has to get on a conference call.

I know how easy I have it -  I have friends who work demanding full time jobs, then go home to their children, many of whom have severe special needs. These moms juggle more in the few "free" hours at night, or in the morning, than I do during an entire day. One friend does 3 complete loads of laundry (including ironing) before I even get up. Another friend has had 2 meetings a night all week, is triple booked for tomorrow night, and will wake up Friday morning and drive 7 hours to spend a few hours with her grandmother on her 102nd birthday, then jump back in the car to be home Saturday for more meetings and her son's birthday party. Still another has her husband come home from teaching to take care of 5 while she works all night as an EMT for the city.  She comes home and gets one hour sleep before her son wakes her up - and then everyone gets up, and who can possibly get any sleep at that point?  It's a complete loss.

We're all unraveled. September owns us.

Today I took it back. Running around frazzled and tired, I stopped and looked at James, sniffling and sneezing, eyes watery and droopy, but going along with the morning routine. I realized that he needed to stay home from school.

My first reaction was no way. Not today. I'm co- hosting an event tomorrow night to introduce friends to two city councilors I strongly support, and I want it to be fantastic. There is too much to do. He just has a cold, he can handle school. Then I thought about it and realized he was going to get worse if he didn't rest.  We both were, and this was our chance.

We played games all morning and went to Friendly's (his favorite). We walked to Johnny's bus stop and took the long way home, not worrying about having to be somewhere else at the same time.

We didn't do anything special, but we took the day back. And in doing that, I feel like I got September back, for both of us. At least until 6:45 am.

Thursday, September 15, 2011

A New Partnership, and a New Hope

Last night I wrote about the anxiety I was feeling before going to meet with James' doctor to talk about his medication. I got messages from friends from all over offering positive thoughts and strength. Some of them I received right before I went into the room. One included a fight song I could sing as I walked in (and I still am because the song is stuck in my head).

Thank you.

The support I got from all of you made it possible for me walk in the room with confidence. Once I was in there, I was amazed to find out that I had a supportive partner instead of a condescending (well, you guys said it best). He interacted with James and discussed options with me, and we were able to determine the best course of action to take to help my son.

Thank you for listening to me, for encouraging me, and for making me laugh when I most needed it.

I never thought this blog would turn into anything significant, but it has come to mean so much to me. I just looked at the blog stats and there are over 3,000 page views to the stories I've shared about James. The fact that you are willing to read it, and share it with others who you think might relate, is absolutely amazing to me and I appreciate it more than I can ever express.

It also makes me realize how much hope there is for people living with Autism Spectrum Disorder to be heard, understood and respected.  James' story is just one of the hundreds of thousands that there are to be told. All of them as unique as the individuals who have ASD, and all of them just as important as the others.

Going forward, I'm going to focus my attention on helping to tell those stories, because I want to make sure that everyone's voice is heard. I am confident that you will keep reading them, and sharing them, because you've listened to mine. xo to all.

Wednesday, September 14, 2011

The Pit in my Stomach

Sometimes I can't believe that I'm the one who is entrusted with advocating for my child.   Me.  The one who can not engage in a debate, about anything,  because I get flustered when I'm put on the spot or feel judged. 

I'm still not even sure how I convinced my husband to agree to marry me, although I know kidnapping him to a secluded cottage in the Blue Mountains of Australia and providing beer definitely helped.

All this and beer?  Who could say no?

Somehow,  I've managed to help people in my life understand what James needs in order to thrive.  I'm lucky that 99% of the people involved agree with me, or I don't think we would have gotten this far. 

Then there is that other 1%.  The one that I can not find the strength to stand up to and defend my position of what my son needs.  You know the one.  I wrote about him in  He Just Looked At Me. He Doesn't Have Autism. 

I got so much support from your responses after that post.  Many suggested I send the post to him to read (which I did. In my mind).  A few of you had incredibly humorous ideas of how I should respond, and I thank you for providing all manners of potential vindication for my imagination.

Here's the thing.  I have to go see him tomorrow.  Again. 

Tony and I agreed that he would deal with the next appointment while I looked for a new doctor, but James' recent behavior has me concerned enough about the medicine that I need to go.  Tomorrow. 

I'm trying to find the strength, but I'm already flustered just thinking about it, and this pit in my stomach just makes me want to cancel the appointment and hide out in my house.  And although that is how I often deal with my own issues, I can't do that to James.

He is depending on me, and I have been entrusted to be his advocate.

So, tomorrow morning, I'll be back in that small, stifling office, uncomfortable as hell.  But I'll have the copy of that post in my bag. 

Just by having that with me, I will feel like all of you are standing by my side, and that pit in my stomach might just go away so I can help the doctor understand what James needs to thrive.

And if it still doesn't go away, I'll just think of all those other ideas you had...

Thursday, September 8, 2011

Help Him

Today was James' first day of school.  I knew he would be anxious, so I tried to make everything as low key as I could, but it was a day filled with trials.

The rain was pounding, and his bus never showed.  Driving to school he started melting down. 

His clothes were uncomfortable. his feet were wet. His throat hurt. He was too tired. It was going to take too long to get to school.  He was going to be late, so he shouldn't go at all.  He was about to throw up.

I managed to get him in the door and he was whisked away to class.  I went back out in the rain, hoping that things would turn for the better.

And I waited.

When his bus didn't arrive home on time, I waited.  And paced.  When it finally got to our house 35 minutes late, I asked if it had left school late.  No?  I tried not to sound surprised, like I thought an hour and a half was a normal length of time for a bus ride home.

I let him play on my iPad, trying to make sure he was relaxed before starting his work.  Homework is always a struggle for us, and causes meltdowns daily. We've learned to handle it by taking a lot of sensory breaks for him to run laps and re-organize.

I took a look at the homework sheet -- it was a list of 10 basic questions to let his new teacher get to know him better.  phew.  We would ease our way into the year.

Little did I realize the firestorm that was brewing inside him.  At the 1st question, he began to tear up.  By the third question, he was screaming and crying uncontrollably.  He screamed "I QUIT" repeatedly at the top of his lungs and took swings at the air, trying desperately to take his frustration out on something.  On anything.

I'm used to the tears, but the anger and outbursts are new this summer.  We took a break and talked about the questions, about how he could answer them.  I agreed to help him with ideas and spelling, if he would pick an answer from the ideas and choose the words himself. 

We made it through a few questions at a time, each one adding more fuel to his internal fire.  By the time we got to the 10th question, we were both a complete mess, although I was trying my best not to show it. 

The 10th question is the only one he answered on his own.

Friday, September 2, 2011

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.

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.