Simplicity and I have a very complicated relationship. Sometimes I can be comfortably entwined with something that is stripped down, and others I feel that all of the details of a particular situation are demanding an acknowledgment from me with equal force. Sometimes the way I write about our experiences is just a product of pieces of my personality that no longer have time to find other outlets to dance around in. But today, because I feel like this is a topic too important to bury in my more poetic sensibilities, I am going to wrap my fingers as tightly as I can around the plainest aspects of what I feel.

I am nobody important, and our circumstances are unlikely to ever draw a wide audience. Being truthful about our experiences leaves me often in the role of being the “Debbie Downer” of bloggers. But I remember what it felt like to be buying book after book directed at parents of special needs kiddos in the early days of Tony’s symptoms and not seeing our reality represented anywhere in them. So while I in part write to keep each of you informed, much of what I say is meant to provide necessary depth and context to other families who may want it as they themselves are searching for information that relates to conditions they are just learning about for the first time.

On January 5^th, Andy and I were doing a community safety walk with Tony. I asked Andy if we could talk about ways to rearrange our schedule to get me to bed by 7pm most nights, since Tony was often waking up so very early. There are plenty of credible sources each of you can Google if you want to see the link between sleep and mental health, physical health, and productivity. Basically the closer you get to a full night’s sleep, the better you do in each category. We agreed to talk about it more in the future, and that day was followed by one of the worst nights sleep I’d had in the past month because of the amount of time Tony was awake in the night, delivering up about an hour and a half only of slumber for me.

I participated in the parent training meeting we had that morning for Tony’s ABA and habilitation therapy programs, and then Andy covered me for a very long nap. He’s off on Mondays, and he provided support for Tony’s therapy programs while I slept. We spoke together, and he mentioned that while I didn’t meet diagnostic criteria for depression, he was worried I would end up there if we didn’t start finding ways to get me more sleep. I agreed with him (he was right). Sleep deprivation amplifies the effects of every challenging thing that has been going on. My honey also made several offers for some responsibilities he could take over to help facilitate some improved sleep time for me, and I was grateful.

While I slept, Emily looked up a study about the effect of Guanfacine on sleep (this is the med Tony currently takes for his ADHD), and I will be sharing a link at the end of this post if anybody is curious. The study accepted participants with ADHD only (no children with other coexisting diagnoses, such as Autism, were allowed) who were already struggling to sleep through the night. After a few weeks, the study was suspended for ethical reasons after the author became concerned with the additional decrease in sleep experienced by the children involved after starting daily Guanfacine. This confirmed something I had suspected, but have honestly been busy dealing with other things and had not spent time looking for supporting information on. There is a documented rebound effect that can result in decreased sleeping for ADHD patients taking Guanfacine.

This is something we will have to discuss with his developmental pediatrician, but truthfully Tony doesn’t do well with the other class of medications they can use to treat ADHD symptoms. Therefore, I don’t really anticipate an immediate change to what we are doing here. I have noticed for Tony, he can resume more consistent sleeping a few months after a dose increase as long as the dose remains stable. The problem, of course, is that he adjusts eventually to the dose he’s on and it ends up needing to be raised and we start that cycle all over again…which is part of how I ended up being turned into a New Year’s Mombie.

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What we are doing to modify our schedule really amounts to a Band-aid. Many of the changes we made decrease the amount of alone time Andy and I are able to have, and of course that also is important to the integrity of our family. Ultimately, we will want to look at other things we can do to balance things out so that we can continue to nurture our relationship. Our family and our marriage is precious to us both. These changes to our schedules and the balance of responsibilities are meant to help me find an improved state of equilibrium in the short-term while we look at more long-term adjustments.

Nothing else being changed about my circumstances, having several nights a week where I get close to seven hours of sleep has really improved my ability to feel happiness and peace in the midst of it all. My post “New Year’s Mombie” was actually written under eight hours of sleep at a local library.

A few years ago I read a book from Judith Orloff that expressed, among other things, her views that our dreams can teach us important things about what we need to know or do. I agree with this (having experienced it in my own life) and not too long after reading that book, I had a dream where I felt just so emotionally dark with the needs of everyone pressing unrelentingly into me. I escaped into a small tent just barely removed from everyone but still by myself, and this cool wind blew through the flaps, carrying away all of that painful emotional energy. I remembered waking up and realizing this dream was trying to tell me I needed more time to myself than I was getting.

That is the other deep need I have that has been largely unmet this past year. For me, I don’t need to physically be by myself as much as I need to have adequate space between myself and others, where I am not needed to be responsible for anything but myself, and nobody is talking to me or expecting anything of me. On January 11^th, I sat in that library at a large table alone, with a good twenty feet between me and anybody else, plugged in my earbuds, and turned on my “relax me” music mix- typing away. After only an hour, I felt like a fully charged battery.

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Part of what is enabling me to have these moments and supports right now is a loving spouse, who cares about my happiness as much as that of our children. That may or may not be an option for some walking this path. And certainly, illness or other circumstances can temporarily throw a wrench into the cogs of any plan. Every night of the past two weeks hasn’t come with all the hours I hoped for in sleep, but it has given me enough to feel like I am mostly feeling warmed by the rays of a more joyful journey. I promise you wherever you are on your journey, all of the things you are going through will feel a lot more manageable if you can find a way to get a bit more of what your body and spirit need.

And you can click on this sentence for a link to the study on Guanfacine I referenced above.