Sleeplessness + an incorrect cup can make this world crash down.

Do you know and understand autism sleeplessness? Did your day start on Thursday, or before? This, is what’s happening in my home and in many like mine.

My daughter Seeley, age five and a half, struggles with several facets of life, but nothing more than sleep and matters of mental health, at least from my view.

Her autism seems to be the parts of herself that she loves. She is beautifully built with quirks that define her and a passion and excitement that may come from not knowing how to express her feelings in a neurotypical way.

While we are still figuring out just what fetal alcohol spectrum disorder means to us, it seems that it carries much of her aggression and other parts of her skill scatter too. This stuff seems to matter very little to See, as this is her normal, she doesn’t seem to be aware of these parts.

Moreover, she seems to black out, or go into a seizure like state when she is wildly aggressive.

The mental health piece, feels a lot like a veil over her awesome. It’s like a leash that keeps her from the things she would like to explore, understand and cope with.

We have come to learn that being within 6 feet from her keeps her more calm, 6ft because sometimes it’s within reach and sometimes, when the light of day fills our home, we can be in the next room.

Over the past year or so, I have been on a different floor of our home probably 6 times while she is awake. 6. Times. Otherwise, we are with her, helping her, being the skills she can’t get access herself.

We might be getting a drink. This sounds simple, and maybe if you are an NT (neurotypical) parent, you do this too – likely at request. For us, it’s because she seems thirsty, but as the feeling builds in her, so to does the anxiety of not having what she needs. If the moment passes the time where she could explain it, she becomes frustrated.

In our Ville, frustration can quickly turn into aggression.

In FlanaVille, aggression can be self injurious behavior, it can be kicking me, it could be throwing, or thrashing and many times – we go through all of these before she looses control to the point of tears and needs comfort again.

After her tears, and our deep pressure snuggle, we rebuild our strength together, and try to recover.

Imagine, you were thirsty, and couldn’t ask for a drink — but relief fills you as someone walks up to you with a cup, you have hoped is filled with hot tea. Hot tea you wish you could have requested, if you could have just found the words. The frustration of not being able to ask in the first place, still making you irritable.

Then the person offers the cup, and it’s not the one you like drinking out of.. do you throw the cup at them, maybe.. but instead, this time you breath through it and grasp the cup, maybe forgetting to say thank you.

You put your lips on the cup as you try to get over the fact that the rim isn’t what you had expected. All the while hoping hot tea is coming as you tip the cup back, remembering to keep your body calm.

Then it hits you, cold water. Cold water, from the wrong cup! When you clearly wanted hot tea from a different one.

What happens next can be volatile, it may pass until the next thing sets her off, but when it comes, and it’s full strength, you’d wish you could have jumped in her brain to see what she had wanted in the first place – because hot tea has yet to be spoken. That detail may not be revealed until the meltdown and recovery are both so far behind us, that our sweaty heads and tired hearts don’t even remember to ask.

Please note — I will be posting all of things we’ve worked on & tried as part of our regular sleep hygiene routines tomorrow, including links!

Stay tuned.


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