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, November 20, 2012

Creating a Special Space

I watched the three year old drop to the ground and giggle as he rolled down the tiny mound. I laughed at how unbelievably adorable it was that he viewed the mound as a rolling hill. I remembered countless times of hill rolling with friends without a care in the world, and felt that inner peace you do when you watch children at play.

Then I turned to James and waited for him to follow his friend. He made some really awkward movements. He lifted his arms up and down and looked, confused, as his friend laying a few feet in front of him. He painstakingly tried to lower himself into a position where he could roll.

And all of a sudden the reality of our situation slapped me in the face.

Oh my god. He doesn't know how to roll down a hill. He is four years old and he can't figure out how to lay down on the ground.

Sensory Processing Disorder wasn't new to us. He'd been faithfully seeing his Occupational Therapist for over a year, 2x a week. We had booklets of evaluations with phrases that I was still trying to comprehend. Dyspraxia. Gravitational Insecurity. Tactile Defensiveness. Low muscle tone.

The list went on. Since I was still trying to remember what PDD-NOS stood for and was completely overwhelmed by the diagnosis on the autism spectrum, I tended to downplay the sensory side of things - even though I knew in my heart that Sensory Processing Disorder drove so much of his behavior and anxiety.

That moment completely woke me up, and I started focusing on the sensory issues. I paid close attention each time we went to a playground. I watched him run laps around the perimeter instead of climbing and consoled his meltdown each time I'd try and put him in a swing.

It was frustrating and heartbreaking. A good friend's birthday party at an indoor playground should have been heaven for a five year old. Instead he sat still in a little car and watched nervously at the twenty- two other children running around him.

James in the middle of his friend's birthday party.
You would never know there are 22 kids running around him.

The aquarium and the zoo. Trampolines and slip and slides. A sit and spin. Slides and tunnels. All were added to the growing list of things to fear and avoid.

As his little brother grew, it was clear he was a thrill seeker. I had to find ways to let Johnny go on the merry go round while James screamed because he was terrified to even be near it. I avoided any place where James would be out of his element because it would mean that Johnny wouldn't be able to play the way he wanted to. The way he should have been able to. I felt trapped knowing that we couldn't go to the same places my friends were taking their kids.
Thankfully we had the best OT in the entire world. Amy was able to immediately see and understand James' reaction to everything in his world, and she created incredibly complex programs that helped address these challenges head on. We started sensory diets at home that began to help.

Sensory seeking kids need and deserve a place where they won't be judged when they crash and spin and jump and seek activities that organize them. They need to go up the slide and down the stairs without receiving disapproving looks. Other kids like James need a safe space to overcome their fears and not feel inferior to others.

And parents of ALL these children need and deserve a space that provides all of that for their families, and arguably more important, the community that will inherently come with it.

My incredible friend has taken a leap to open such a place. It is called SenseAbility Gym and it is a much needed place for kids like James. For families like mine.  They are in the running for a $25,000 grant from FedEx to help them get off the ground. You can vote for SenseAbility Gym every day until 11/24.

Vote HERE. Every day until 11/24. Vote for James and for hundeds of other children this gym is going to help. Vote for me and for all the families who will actually be able to enjoy a public play space, possibly for the first time ever.

And thank you. From the bottom of my heart. I know how lucky I am to have such an incredible support network. I'm so thankful to have friends and family like you who take the time to read our story, and I appreciate your support more than you will ever know.


Thursday, November 15, 2012

Just a Walk in the Park

When I had to stay home from a planned hike earlier this week to take care of sick Johnny, my friend suggested James go along with them anyway.

He didn't want to go. He was nervous. He thought he'd get lost in the woods or get separated from everyone. He didn't want to leave his dad and me. He was convinced that something awful was going to happen to him.

Tony and I finally talked him into going, assuring him that his friends and their parents would take very good care of him. He agreed to go with a noticeably shaky voice, but was still second guessing his decision on the way to his friend's house.

I talked to my friend about it. We've been in this place together many times (I wrote about it here), and she completely understands his fears and my worries. She assured me that both she and her son would stay close to James and make sure he never felt scared.

And then she sent me this photo. This absolutely perfect photo that made me realize for the bazillionth time that both James and I have the most incredible friends. Ever.

I can't stop looking at it.

And every time that James tells me he can't go somewhere without me, or he is afraid that he will be left alone, I'm going to show him this photo.

Sunday, November 4, 2012

Summary from Game 1 - Daylight Savings Sleep Battle 2012

After yesterday's post, I'm sure you are all sitting on pins and needles to find out who won Night 1 of the epic battle of Sleep vs. Autism and Daylight Savings (or are too battle weary yourself to care, but just trying to find something to read to keep you awake until your coffee kicks in).

Here are the highlights (or more appropriately, lowlights) and stats from this household.

Key moments:
11:30 pm - Parent #1 went to bed, confidently planning 3 hours of sleep before game begins.
12:30 am (pre-daylight savings time change) - Child #1 jumped in Parents' bed to start game early
12:31 am - Child #1 launches aggressive offense by kicking, twisting, turning, flipping, bolting upright and pinning own appendages under Parent #1's torso and legs.

2:30 am (post daylight savings time change) - Parent #2 shows up to play game. Sees Child #1 sprawled out across entire bed. Forfeits game. Rouses Parent #1 from state of half sleep up to inform her of said forfeit.
2:31 am - Parent #2 immediately retreats to Child #1's empty bed in dark, quiet room, prompting silent cursing from Parent #1.
2:31 - 5 am - Child #1 continues assault. Parent #1 remains on defensive.
5 am - Child #2 makes early appearance in order to participate in game.
5:30 am - Parent #1 forfeits game and sends Children downstairs to play video games.

Records broken during game:
  • Child #1 beat own personal records in both "duration of time awake" at 4 hours and "average time stayed asleep" at approximately 9 minutes (Parent #1's time keeping possibly skewed by delirium).
  • Parent #1 beat own personal record in "amount of time laying 1/2 off bed" (most of night) and # of times switching side of bed in attempt to free self from Child #1's appendages (4 times)
Additional Stats:
  • # of times Parent #1 silently cursed Autism and Daylight Savings - 597
  • # of times Parent #1 kicked - 1,268 (approximately)
  • # of personal injuries sustained by Parent #1 - 6
  • # of those injuries to eye sockets and nose - 4
  • # of hours Children have been playing video games - 4
  • Amount Parent #1 cares about time spent on video games - 0
Final score:
Autism and Daylight Savings - 1,871
Parent #1 - 0

Parent #1 loses the first match in the 2012 Epic Battle against Autism and Daylight Savings in a pathetic shutout. With at least half a dozen more nights to play, Parent #1 will be training by taking a nap this afternoon and coaching Parent #2 on how best to enter the game as a sub.

What are the stats from your own battle last night?

Saturday, November 3, 2012

Whose Bed is it Anyway?

Tonight we get to turn the clocks back an hour and mark the end of Daylight Savings.

When I was in college, it meant a bonus hour at The Jug. When I first started working, it meant an extra hour lounging around, NOT in a cubicle.

But now? Now it just means I'm going to get kicked for another hour.

I wrote about James' sleep issues last year (with a surprisingly positive attitude) in Setting Clocks and Expectations . Maybe I'm already heading into this annual event more sleep deprived than last time, but I'm definitely feeling less optimistic about our progress this year.

Or maybe it's because what I view as an ongoing family challenge to be addressed, my boys have decided it is our everyday routine, as is entirely obvious from the interactions we had this past week:

The other morning I told Johnny that I left his school uniform on my bed for him. He answered "Which bed? The one in your room or the one you actually sleep in every night?"

And then, later that day, James was upstairs with his Dad. I have no idea what actually happened, but I imagine it went like this:
James said his usual: "I like your bed much better than mine. It is more comfortable".  
Tony matter-of-factly answered: "Our bed isn't really big enough for 3 people and maybe you should think about sleeping in your own bed."  
James asked: "Is there a bigger bed?" 
Tony (who apparently is absolutely, completely unable to lie) said: "Yes, this is a Queen sized bed. They make a bigger bed called a King".
That is what must have happened, because James came immediately running downstairs yelling "MOM! They make a bigger bed! Its a KING! Can you hook it up on the iPad Mom? Hook up the top 10 list of biggest beds? Wow! Look at this! There is an ULTRA KING! We can get a Ultra King sized bed and then you don't have to get in the way of my legs when I want to kick anymore! Yay! Let's get an ULTRA KING!"

And with that, I sighed and was just about to give Tony "the look", but I realized it wasn't even worth it when I recalled our Facebook exchange earlier in this week

Kristin McCarthy Macchi Hurricane James up at 3. Woke his bro at 5. Now obsessing about #Sandy & all storms that ever happened. It's gonna be a LONG day. #autism
Tony Macchi Well that explains why you looked so tired this morning.
*Sigh* Just bring on the extra hour already. I'll spend it debating whether I should cave and buy the Ultra King sized bed, or just move back onto the dog bed on the floor of the boys' room.