I had a thought the other morning, after being woken up yet again by my two year old at some odd hour in the middle of the night:
How awful it must be, to be a kid that cannot speak, and wake up in the middle of the night with a need.
Joshie came running into our dark bedroom talking about something. Jasen, dear husband that he is, got up and took Josh back to his room. But minutes, later, Josh was back, saying the same thing, whatever it was. In my foggy sleepy state, I forced my brain to translate “Josh-speak” and mumble to Jasen, “He said he wants a drink of water.”
And that was the trick. He was thirsty, and sucked down a half cup of water, and went back to sleep.
A few hours later I stood by the coffee maker and groggily told Jasen, “He said ‘De da wa-were.’ That means he wants a drink of water.”
“Huh? ……Oh.” Jasen responded. Then we both drank huge cups of coffee and went on with our days.
I was thinking about Josh, who is actually receiving speech therapy now, and how he is so hard to understand sometimes. HE knows what he is saying, and he knows exactly what he wants. But he cannot always get us to understand. He has intelligent thoughts and ideas, but trouble communicating them. He just cannot get the words to come out of his mouth right.
Kind of like Lilli.
When Lilli wakes up in the middle of the night, she does different things. Sometimes she makes sounds, like “Mee mee,” or “Ss, ss, ss.” Sometimes she makes breathy noises and growls or laughs. She will grab us or grab her neck. Grabbing her neck, we know now, is her gesture for “I have something to say but I can’t get it out.” But how do we figure out what she wants at three or four in the morning in the dark?
Only recently did I have an “a-ha” moment in the middle of the night about Lilli. She woke up around four a.m. and started to make noises. I don’t know how it is in other people’s houses, but in ours, when someone wakes up, usually that means several others are woken up too. So Jasen and I were having a discussion in the dark about why Lilli was awake.
Ok, I was the one who was having the discussion. Jasen was trying to sleep.
I decided that maybe, just maybe, Lilli had to go to the bathroom. And she can’t tell me.
After eight years, this occurs to me for the first time.
During the day, we have the potty button that “speaks” for her, we have her dragging us to the bathroom, we have pictures she can point to, she can type it, we have a certain specific “potty whine” she does that I recognize, we have our little notebook with the schedule and all our handwritten notes of the last time she peed, so that we can say to each other or ourselves, “Hmm, Lilli has not gone potty in awhile, let’s take her.” (Just writing all of that took a little bit out of me. Potty training has been long and difficult. But it is because it is not “typical.” We have a few more obstacles thrown into the mix.)
I think about how potty training with Chloe went, and how there were those times in the middle of the night when she would wake up whimpering and we would have to stumble through our sleepiness to complete the routine in the dark. I think, well, it’s worth a shot. We’re all awake. Might as well see if that’s the problem.
So at four a.m., I take Lilli to the potty.
I whisper to her that this is different, we don’t have the lights on, I’m not going to play an Elmo movie or sing Twinkle Twinkle Little Star. OK, but I can whisper it, I think. So I whisper Twinkle Twinkle Little Star in the still dark bathroom.
And there it is. She had to go.
I hug her and tell her I am so proud of her. She squeezes my neck super hard, for a really long time as I crouch down next to her sitting there. I imagine her to be saying, “I’m so glad you finally realized that was why I woke up. I am so glad you finally figured it out.”
Then I take her back to bed and she goes back to sleep.
I confess to you that I got teary. That’s no big surprise to anyone since I am such an emotional person. But this was a big moment for me, because I had a realization.
Special needs aside, sometimes kids just wake up simply because they have to go to the potty.
We tend to make things more complicated than they are. Mysteries can do that. For so many years we tried to figure it out. We thought that Lilli’s night waking was due to something neurological, or seizure activity. And many nights, it was. Lots of kids with special needs do not sleep well. When you see a bleary-eyed parent of a newborn, you understand why they are sleep deprived. But many, or should I say most? parents of kids with special needs are still bleary-eyed after a decade. For various reasons. Some parents have to get up in the middle of the night to tend to feeding pumps or various beeping monitors, some children are on medications that disrupt their sleep, some children have seizures… there are lots of reasons. Some known, some unknown. When Lilli was a toddler she used to wake up and laugh, loudly. Squeal with delight and clap her hands, for over an hour. Night after night. It went on for months.
That… was torture. It was not at all funny.
We tried a lot of things over the years. Now, Lilli does sleep through the night most nights. Certain things have helped her sleep. One is regular chiropractic adjustments. (One of many motivators for my husband going to school to become a chiropractor. He may have even made the final decision to be one at four a.m. I don’t know.) From supplements... to certain foods…to long baths... to driving around the block six times… to taking her to a chiropractor, the list of things we have tried over the years to get her to go to sleep and stay asleep is long. But I am just happy to have realized that sometimes, when a kid with special needs wakes up in the middle of the night, it might not have to do with their special needs. They just might be like any other kid and have to use the potty or want a drink of water. With a child who cannot talk, this is guesswork in the dark at an exhausting hour.
I hope that one day we will figure out a good way for Lilli to tell us what she needs in the dark.
For now, I am just happy that sometimes… I guess correctly.