I usually start writing posts with some idea in mind about what I want to say. Right now, I don’t. Regular readers have probably noticed that our posting frequency has been way down lately. A significant part of that comes from the J-Man being on break from school and us trying to figure out caring for both him and Not-So-Little-Anymore E – or more accurately, how to get through most days with everyone still relatively in one piece before we fall into bed.
We’re over halfway through the break, and much of the rest of it will be busy enough with family and other things to keep the days moving along with various people around to help us. It really has felt like we’re completely adrift within this month called July, almost like we’re in our own month with its own unique name that exists on no calendar other than our own. Autism has a tendency anyway of upending any sort of standard measurement of time – sometimes more beautifully than others – but lately it’s felt like living in a parallel universe.
The J-Man has seemed to be struggling a lot lately. His attentiveness to activities feels like it’s declined to near zero unless it’s something he can zone out on. His verbal communication seems more limited and frequently patchy, and his moods have tended toward abnormally quiet and clingy. The last couple of days, his appetite has been way off. This has all been unsettling. I know he’s way off schedule with baby and general life chaos and no school to go to for routine and grounding; that just doesn’t help me feel better about it. The part that hurts most for me right now is that I don’t have a clue about how to fix it.
The J-Man is actually heading to the beach for a few days with Mary’s parents starting tomorrow. (Not-So-Little E will be staying here with us.) They’ll be meeting up with one set of aunt/uncle/cousins for the first half of the week. We’ll be going down there about mid-week to visit with everybody for a couple of days. While to most normal parents, this would seem like a welcome respite, I have never found the prospects of being away from the J-Man for long much other than very stressful.
The J-Man is nearly 4 years old, and I think I could count the total number of nights we’ve been away from him on both hands with fingers to spare. We do pretty much everything together. When you’ve spent almost his entire life taking him to countless assorted therapies, working with him every day, watching him carefully in any open space you’re ever in, trying to read every noise or sign or gesture that indicates how he’s feeling or what he wants, and planning out everything in every detail (remember, the right shoe goes on first!) to avoid peril or disaster or better yet to make the day go well, turning all of these off for a few days is rather like telling your body to stop breathing until further notice.
I know rationally that the state in which I find myself in these situations isn’t a particularly emotionally healthy one. Mary and I both need time and distance like everyone else does to feel something resembling normal. We all need breaks from each other, and we need to be adults occasionally independent of everything else rather than 24/7, full-tilt parents. And in order to grow into an individual, he needs to separate from us sometimes and stick his toes out in the world. I know all these things rationally. That does not make it any easier.
One thing I know informs much of my writing is perspective and the ability to find some on a regular basis. For the last several weeks, I feel like I’ve lost that – and on many days, entirely. Everything feels reactive and instinctual. I barely remember what just happened a minute ago and have no idea what I’ll be doing 5 minutes from now during much of the day. Instead of pulling back at night when the kids are in bed, I just want to zone out or do something that lets me distract myself until I go to sleep. As I write this, I realize this is not a very good – let alone sustainable – way to live.
And I’m even adrift trying to figure out how to end this post. 
I guess all you can say is that this is what it is. I know it’s “perfectly normal to feel this way” and “not to beat myself up over it” (like pulling the string on the back of a talking Sid the Psychotherapist doll), but those sorts of things aren’t really what reassure me. We’ve gotten through a whole lot of challenges so far, and we will again, even if it doesn’t always feel that way in the moment. That’s the constant in this house that I draw endless comfort from.
Maybe he’ll learn some things about how to be away from us and we’ll learn some important lessons too. I should probably start with actually going to bed at a normal hour… starting now.
Posts that hopefully are similar:
- Starting to Sink In
- Two Be or Not Two Be?
- When Medical Emergencies Attack Your Spouse
- Burnout
- Diagnosis Day – 2nd Anniversary Edition
- Nature’s Way of Telling Me to Stop It
- Where Am I?
{ 4 comments… read them below or add one }
Hi Tim,
Another phrase that Sid the Psychotherapist would use is … This won’t last forever. Oh yeah, and Take it one day at a time.
Having said that, I hope the break is good for all 4 of you. I have my fingers crossed for you. And sometimes it’s okay to stop and say, “This Sucks”. It doesn’t mean you are a bad or pessimistic person, it’s sort of like acknowledging an ice storm. Only an idiot would keep going about life as if it was sunny & warm when it’s really sleeting, slick, and nasty outside. If it’s okay to say, “Oh sh*t, we’re in an icestorm” then it’s okay to recognize the current situation for what it is.
All I can say is “I can relate”. You’ve written very well what I feel. Right now I just feel exhausted completely, and have felt that way for a very long time.
It’s exhausting constantly being “on”, being at hyper alert model.
Hi all. Just want to send you my support during this ‘ice storm’. I wish I could comment more, but my little guy keeps me so busy that by the time I’m done reading on my few moments of spare time I barely have the energy to cobble together a comment.
I was thrilled to hear that little E slept ten hours straight!!! That has never happened for my little guy. 6 hours is his all time record (happened just the other night), and 3-4 hours is the average (he’s a year old). So knowing that you are getting a little sleep makes me feel so good for you.
I hope you enjoy the respite over your 4 day ‘vacation’ form autism parenting, and can just trust that the J-man is being loved and nourished and learning many new things. The separation may bother him less than it bothers you
.
We are nearing the end of a beautiful July, an experience that I thought might never come for us considering the first 6-9 months of my little guy’s life. It was so hard to keep perspective, so I totally empathize. Things are still often challenging, but in a very different way now. Even if it doesn’t ‘pass’, at least it changes. Maybe from ice, to light fluttering snow. Still cold, but full of beauty.
Take care of yourselves and your little darlings!
[I'm slow as usual in responding...]
Thanks everyone! The break did do us some good. I tend to get in my head that feeling like I need a break indicates some sort of negative feelings toward others, though I know in what passes for my rational self that those feelings are about my own personal stuff and me being completely exhausted. I don’t think I really understood how wiped out I was and what a pain in the butt I was being as a result.
Kristin – I think you nailed it with describing it as exhausting feeling like you need to be (or don’t have any choice but to be) ‘on’ all the time. It’s an unsustainable state to live in, and the harder I push, the more poorly I do everything anyway. But that ‘on’ state is how I feel like I have to be all the time. I really need to work on that.
We did stay very busy while he was gone catching up on a zillion things that had been neglected during the past month. It’s not like we caught up – that’s impossible! – but it was good to make some headway and clear at least some things out of my list of stuff to worry about not ever getting done.
Perhaps I did psych myself into this mental state by dreading this 5-week school break so much. I knew I couldn’t provide the J-Man with the structure and support he normally gets (and needs), but never let myself be OK with doing the best I could do. That’s something I’m often not very good at.
Thanks for your support during this rough patch. Things do feel some better this week, and I appreciate everyone’s kind thoughts in helping that happen.