Dear Addie,
It’s not that uncommon to hear special needs parents talk about their lack of sleep. It's a pretty common bond between us no matter your child's needs. I guess you could say it comes with the territory. There’s a laundry list of reasons, some children could have breathing issues, seizures, lack of actually being able to fall asleep, or like our challenges - staying asleep, and wandering.
We have made multiple adjustments to keep you safe in all this. For instance, we've strategically given you a bedroom in our house where you have to walk past our room to get anywhere. That in conjunction with locks and alarms on each door and window letting us know if a door opens (and if you are on your way out for an evening/early morning stroll). When you have these types of things to worry about you can put 1000 safeguards in place, but the anxiety never really goes away. Sleep quality, if your lucky, becomes the equivalent of always sleeping with one eye open. But here’s the thing, it’s not necessarily the lack of sleep that gets to me, it’s more the lack of being able to succumb to the foggy brain from it! Weird statement right?! Special needs parents, as tired as we are, don't usually get the opportunity to just be tired. We are at every turn of the day problem solving or decoding some sort of behavior or issue. We don’t get any other game but our "A game" and that’s especially true for children that wake in the night with an issue and can’t find the words to tell you what’s going on! 4 am charades anyone?! Trust me it’s not as fun as it sounds.
Our story begins with water… or a blow-up hot tub rather. Yes, you read that right.
Addie, in quarantine life I think it’s safe to say you have struggled tremendously with finding a good sensory diet. There have been many days when I wished this type of diet was legit food, but it’s not. It’s a series or schedule of sensory activities that provides your nervous system enough input. Why is that a thing? In short, your sensory system is a little (or a lot really) out of whack so these activities are intended to regulate it and help keep you focused, calm and balanced, rather than excessively sensory seeking through the day.
While we have plenty of outlets here for you at home, it’s important to recognize that when you grow, your needs can grow as well and our go-to bag of tricks leaves us sometimes feeling like we've discovered there’s a hole in the bottom of the bag.
Insert: Operation Sensory Diet.
Our go-to for you is usually water. Fun fact, water touches every sensory point of your body which is often relaxing for people. You LOVE water. When we getaway to the beach you spend your time either at the beach crashing in the waves or the hot tub playing with Frankenduck – I’ll have to explain Frankenduck some other time… .
Well since I can’t exactly bring the beach to our backyard, or at least the likes of it may not fly with the HOA. And a big fancy hot tub isn’t exactly in the quarantine budget – a blow up hot tub it is! Thanks, Amazon!
Addie you should’ve seen the UPS drivers face. Other than it being a really big, heavy box, I know he was probably thinking - essential?! Sure thing lady. Little did he know. Fast forward to the point where the hot tub is set up, you’ve enjoyed it tremendously, and it has definitely brought some calm to our lives. Oh and a new addition to my resume as a chemist - I am obsessed with the chemicals being perfect.
All was good in our world...or at least I thought.
With your new-found love for the hot tub, it had you rolling through bathing suits like it’s your job. My laundry production was not exactly moving at expedited speed, and with the amount of clothing changes…wouldn’t you know it? You’ve gone and put on an old, wet bathing suit from the hamper on, causing none other than - folliculitis. Yippie! How do I know this? Well, thanks to a telehealth doctor appointment basically what I thought was a miraculous contraction during quarantine of chickenpox, was really just mommy needing to do laundry quicker. Thanks, doc, I’ll get right on that! In the meantime - stop digging through the hamper Addie!
Ugh, strike one in sensory diet solution with the blow-up hot tub.
A few days go by and you no longer look like a cheetah, so with all bathing suits locked away (seriously in an undisclosed location) and with them immediately going to the washer after use, problem solved. Or at least I thought.
You’re probably wondering at this point where the charades I was talking about earlier are gonna come into play, right?! Well, look no more.
If there’s one thing this journey has taught us, it’s that everything we learn takes a lot of time and patience.
Water without question is one of your favorite things. Learning to swim or getting your head submerged - not so much. That is until the blow-up hot tub arrived.
For reasons unbeknownst to me, all of a sudden you decided it was time to try and float on your back in the water (while holding a soccer ball of course, because why wouldn’t that be part of this scene?!?).
You were fully submerged, except your face and part of your hands holding the soccer ball. I couldn’t believe it! We've spent years trying to teach you to float or get your head wet even! Who knew all it took was time, the country to shut down, and a blow-up hot tub of course?
Your newfound skill became a fast favorite, repeated multiple times a day. We were (and are still) very proud of you baby girl.
About 4 days into mastering your floating skills you awoke a 4 am, turned every light on in the hallway, crying with the absolute saddest face possible. Daddy and I jumped up and immediately started in with questions.
What’s wrong? Are you hurt? Sick? Scared? Use your words Ad...
Nothing. You just looked at us. You were miserable and we were getting nowhere with our interrogation tactics. After a few minutes of staring at each other, you walked over to a drawer in the hallway where we keep our towels, grabbing one, and put it in my hand. Now I’m thinking, you seriously want a shower at 4 am and you’re that sad about it?!
Then, still no words, you took my hand with the towel and brought it to your ear and leaned in. Mark it Addie, you had water in your ear, and by the tears that were accompanying this, it had probably become swimmer's ear by now. You wanted me to get the water out and make the pressure pain stop with that towel. Interestingly to us, you got a towel because it felt just like that, water in your ear, but with your usually very high pain tolerance, this surely told us just how bad this hurt.
Insert strike two of sensory diet blow-up hot tub solution.
So weird to even say this, but luckily for us, we had a brand new bottle of Rx ear drops from a few months back when you ruptured your eardrum. That was fun right?! (clearly being sarcastic here) no signs of an ear infection from you except blood coming from your ear. Never a dull moment Ad, life is always exciting.
Well in that scenario we had two options: let it heal on its own, or try the drops. Since you were unfazed by it, we left it but kept the drops just in case, unknowingly preparing us for this 4 am swimmer's ear moment.
Addie, when I talk about “always being on our "A game” this is it. Solving mysteries at 4 am is a good example. As parents, we have to trust our intuition but now we are playing a game of intuition, charades, and clue all wrapped in one - that would make one heck of a board game!
With about 4 miserable days of you bringing us towels at all hours of the day, consistent use of ear drops, and waking every night at 4 am for Tylenol - you’re finally on the mend. Thank goodness.
But guess what!? The fun didn't end there. (Sarcasm again baby)
With your new body clock waking you at 4 am, that has stayed the same for the past week, just minus the drama.
Addie, I’m so sorry your blow-up hot tub has treated you so badly. Hopefully, there will be no strike 3, because all of this certainly hasn’t stopped you from getting right back in.
Now if we could just talk about the 4 am thing...
Love you, baby girl. You are most definitely living the life of Dori. When life gets you down you “just keep swimming.”
Love, Mom
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