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.

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.

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