Tuesday, July 12, 2011

Taking the train to Winky-ville

When the kids were babies, Bil came up with the term, "taking the choo-choo train to Winky-ville" when referring to sleep. We aren't typically super cutesy with names for things, but that one stuck. It's a cute term that belies the stress and frustration that was on the horizon for us.

As a baby, Danny was a phenomenal sleeper. He slept through the night at 2 months of age, and continued to do so the rest of his life.

With a few notable exceptions.

Before being diagnosed with SPD at around age 2, he began waking in the night screaming. Absolutely nothing we did would calm him down. Drinks of water, rubbing his back, administering gas drops, and singing all seemed to make these episodes much, much worse.

Danny would arch his back and scream and cry for about an hour before his sobs slowed.

With time, we discovered two calming techniques that worked for him: taking him for a drive and letting him watch Baby Einstein videos.

Thankfully, these episodes were rare; they only occurred every couple of months. The severity, however, was such that I was tempted to take him to the ER a couple of times. It seemed like the kid was in excruciating pain. I remember frantically running around the house trying to think of what we could do to help him calm down.

I can think of few times as a mother when I felt more helpless, watching Danny scream and not being able to help him. My extreme fatigue only heightened my frustration.

Thankfully, once we got him occupational therapy and started treating his Sensory Processing Disorder these night episodes gradually disappeared.

Interestingly, it wasn't until years later that I even connected these episodes to his SPD. We had so many other things going on at the time, I never really thought much of those wakings. I just felt lucky that they stopped.

Charlotte (who is 5) has been an entirely different ball of wax, sleeping-wise. As early as infancy, we discovered the dangers of allowing her to become over tired. If Charlotte missed a nap, her sleep would be disrupted for days.

When she began waking in the night screaming, I didn't know what to do. If I thought Danny's night episodes were severe, I hadn't seen anything yet. Charlotte screamed for well over an hour.

In her case, Baby Einstein didn't work. Neither did rides in the car.

In fact, nothing we tried succeeded in calming her frazzled nerves.

And Charlotte's episodes happened with an alarmingly increasing frequency. By the time Tommy was born, Char was waking at least once or twice a week, sometimes even more often. It was rough. Between night feedings for Tommy and night screamings with Charlotte, I thought I would lose my mind from exhaustion.

At first, I thought perhaps she was having night terrors, so I did extensive research on how to treat them. Didn't help.

Then, I wondered if because we were giving her so much attention when she woke, we were inadvertently encouraging her. So, we tried, very unsuccessfully, to let her cry it out. (You know, the old Super Nanny approach to sleep problems, which by the way, does NOT work with special needs kids.)

Later, I just cried with her, holding her very tight and rocking, while rubbing her bare arms.

None of our techniques really helped, though the last one seemed to assuage Charlotte slightly. The only thing I really understood about the night wakings was she was more likely to have them when she was over tired. Although I tried valiantly to get her to nap, Charlotte was at the age where she resisted mightily.

Finally, when I took Charlotte last year to be tested for SPD, I mentioned the night wakings to the occupational therapist. By that point, I had connected Danny's wakings to Charlotte's. I put two and two together and finally wondered if SPD could be causing these wakings. (The only explanation I have for my denseness in this case is that I was experiencing EXTREME sleep deprivation. Remember, I also had a newborn at the time.)

The therapist informed me that the sleep disruptions were almost definitely because of her SPD. It was like her poor little over stimulated brain couldn't calm down, even in sleep.

Thankfully, after we started OT with Charlotte, the night wakings tapered off. As of this writing, Charlotte has not had an episode in almost a year. If she wakes up at night because of an accident, she goes immediately back to sleep once we've cleaned her up. No crying, no screaming for hours.

And that alone is worth the thousands of dollars we have paid for Occupational Therapy, equipment, and an iLS program!


Check out the SOS Research blog for more posts on sleep and kids with special needs.


B1L said...

Ronn Benway was the one who stuck that line in my brain. I don't know where *he* got it. Tee hee. :)

Heather said...

We've had sleep issues around here but thankfully nothing like you've experienced. The process of elimination for these things is crazy! No one equipped me with the skills to figure all this stuff out but somehow I do it, day after day. Sometimes I feel like and idiot - like how did I miss that one, it should've been so easy! Then I remember that they forgot to give me the manual for my kids and I can't find them online!!! Glad sleep is going better for all of you :)

Lizbeth said...

I don't think there is anything worse than loosing sleep and then trying to function....and trying to figure things out when you're brain is fried is near impossible! I'm glad she's back to sleeping thru!

Sprite's Keeper said...

Thankfully, Sprite is a hard sleeper. Once she's down, we rarely hear a peep from her until morning. Although when she was first born, I couldn't put her down to actually sleep for any amount of time! It always felt like she was just waiting for her butt to hit the crib and then she would open her eyes and start wailing for my arms. Sigh. Glad Charlotte's sleep disruptions have tapered off though.

Alysia - Try Defying Gravity said...

So you know I don't need to tell you how familiar this all is :) the process of elimination is painful. I know our son's issues are sensory related, I just can't fix them. It's so frustrating. I feel your tired pain :)

Asperger_Mom said...

I guess everyone has their own story to tell. But that driving sounds like a few people I know. I had one mom have who had the fan above the stove running because it was smoothing for them. So I say whatever works. It's good that you got the right diagnosis early. Nice job on the post. Thanks.

Lisa Quinones Fontanez said...

Another familiar story. Once we got the diagnosis, everything seemed to fall into place and make sense to us.

And NO Super Nanny does not work with our kids. Not. At. All.

Great post :)