Thursday, August 16, 2012

Extraordinary


Extraordinary-a word not to be taken lightly. In fact, I don't recall ever using it in my entire life and yet it is a word that popped into my mind earlier this evening after putting Evie to bed.

Two months ago my oldest daughter came to me and respectfully requested her own room. At fourteen, it had been 12 years since she had her own room and, for the most part, had been a very good roommate to her siblings. She reminded me that as she is going into high school she felt the need to have her own space to focus on her studies, not to mention, the twin bed she shared with Evie had become increasingly cramped over the past couple of years.

The next day she moved out of that room and traded with my six-year-old who for the record has never slept through the night. Despite the fact she was ecstatic to finally have her own room, this situation did not sit well with Evie.

For the most part,  Evie has never had any sleep issues or disturbances that commonly plague autistic children aside from hating her room for the simple fact going into it meant bedtime. She would instantly become uncomfortable no matter what time of day if she were brought there. And although she really had no bedtime routine at that point, she was fairly consistent to fall asleep with a cup after a few minutes. My oldest had never reported any crying through the night and if Evie had ever woken up, she would snuggle in with her sister and fall back to sleep. Her sister, being as caring as she is with Evie, would make any necessary adjustments in her sleeping position to accommodate Evies comfort even if it meant a very sore back in the morning. Her brother, however, was not so accommodating.

It was clear halfway through the first week this arrangement wasn't going to work. My son would commonly wake up shortly after Evie was put to bed or Evie would wake up screaming as he, being the older brother, was resistant to change his sleeping position as they both like to sleep sprawled across any surface space of the mattress. Initially I tried to set up a good routine for Evie consisting of a bath followed by one episode of Spongebob when I would braid her hair and make every attempt to brush her teeth. I would then "read" her a very short story with the hope the routine would make for an easier time falling asleep. It seemed to have the opposite effect as the time from me tucking her in to her falling asleep was increasing every night. It became common for her to wake up around 11pm and stay up until 3 or 4 in the morning multiple nights per week. It was clear this situation was not working.

I soon approached my oldest, intending to ask her to switch back to the old room with the promise of a bigger bed as it was clear, Evie missed her sister. But something occurred to me. Something I try very hard not to think of. The future.

I pictured a much older Evie in some group home, never sleeping because she didn't have her older sister to sleep with. No. This situation was going to work.

My son kept his things in with Evie and began to sleep in his other sisters room (I'll spare you the drama). I continued the routine, despite Evies protests by running the other direction whenever I said, "Time for a tub" and screaming while I read "Goodnight Moon." But sure enough, after a few weeks the screaming stopped and I began catching her quickly glancing at the pages while I read. Now I'm happy to report, she'll lay on her back and playfully hide in the covers while I read to her most nights. It has been two weeks since she woke up during the night, which brings me to earlier this evening.

Tomorrow my oldest will be visiting family for a few days. We told Evie this a few times over the past few days but of course, she being who she is, went about her days with a business as usual attitude until tonight. After her bath, she willingly went into her room and ran over to the bed when she looked at me briefly and patted the spot next to her. I ran over to her and sat down, surprised as usually after getting pajamas on she quickly bolts out of the room. Evie began to giggle. Seeing this, my other daughter (Evies former roommate) was on my laptop in the same room at the time stopped what she was doing to go play peek-a-boo with Evie in the blankets. When one of us would get up to leave, Evie would quickly take our hand, lead us back to the bed, walk over to the door, promptly close it and return to the bed to play some more. This continued for well over thirty minutes.

I honestly wish I had the words to describe Evie when she giggles and gets excited. Her whole face seems to light up as she gets the biggest grin, puts her hands together then pulls them apart and does this funky thing with her arms that isn't unlike a chicken flapping its wings, all with that contagious giggle which is usually followed up with a kiss and one of the very few sounds she makes, "ummmmm."

One major thing I have learned with having a child on the spectrum is you truly know what it is like to appreciate and find joy in the little things. I can't imagine ever with my other children getting excited because they willingly went into their room. That was never an issue with them. Tonight was a breakthrough in the sense that Evie knew her older sister was leaving and she willingly played in her room with us. And that is extraordinary.

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