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.

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?;)