In our little universe, Bad Days are increasingly less frequent than Good Days are. That doesn’t mean Bad Days don’t happen; it just means that when they happen they throw us off completely because our habit of them has diminished over time.
This morning we started a Bad Day. Anxiety and Autism, as we’ve mentioned before, can be a pretty difficult combo, and that’s what we were experiencing today. For some reason, J was extremely anxious and started his day two hours ahead of schedule and repeating the same things over and over and over again in a very obsessive tone.
The hill heading down is a lot shorter now so things escalated and we were both pretty much emotionally and physically spent before 8 a.m.
By 9 a.m. J was into the cathartic sobbing that washes it all away, and my neck was as stiff as Sam the Eagle’s.
Last week was good. J’s 24th birthday was pleasant in a sweet, quiet way. He got his cake exactly as he requested, and he had balloons, streamers, a banner. Prior to that, the holidays had been better than they’d been in quite a while. We seemed to be on a roll. Today we either hit a wall or we ran out of “roll”, and are left with the little cardboard spindle. Hopefully, we will now start with a new “roll” and it’ll be double-ply and super-thick.
J has been doing well. He has been a little less into exercise (something I started working on today…please, pass the Penetrex) and a little more into being alone. He has been a little less into going out, and a little more into being specific about where he wants to go, what for, and when he wants to come home. J has also started not being so difficult about his dog. He can walk near her most days, even walking into a room without worrying about her presence, and not bat an eyelash. The dog, for her part, has learned that J is the cue to everything…when to sit, when to not resist being sent outside, etc. They co-exist peacefully though not yet side-by-side, and I think both are pretty much happy and satisfied with their lot in life…
Everyone is getting older. J is getting older. We are getting older. It makes for interesting dynamics. As we slow down due to age, J has to exercise greater patience with us. He accepts the limits of his bedtime when we factor in that our schedule calls for an early start (we are up at 5, and Dada is out the door before seven a.m.) and that we often feel exhausted before nine P.M. J, who has the habits and wishes of a dude his age, has to think to himself “I know I didn’t get out of bed until nine, nine-thirty, but these old geezers can’t stay up until midnight…even if they TRY!” So he navigates our schedule and his with very little resentment… There IS some, but it’s not unmanageable.
What we do have, whether people outside our home realize it or not, is a lot of activity within these four walls. I travel up and down the stairs incessantly during the day, and there are chores to do, administrative work to keep up with, and the matter of J and the dog being creatures who require and want attention.
The doorbell rings and I answer after taking deep breaths. The phone rings and I answer after taking deep breaths. I take a lot of deep breaths. More and more often I miss the gate that separated our house from the road when I was growing up. We knew someone was there because they would honk the horn, jangle the chain, or call out. It gave us time to collect ourselves and prepare for the onslaught that was “company.”
I don’t have that luxury. The doorbell is right next to the door which is only 50 feet away from the sidewalk, and it takes me 30 seconds to get to the door from the farthest spot in this house. Also, people can immediately tell I’m home…basically because I’m always at home. This seems to translate, in our modern day and age, to “I’m always available.”
I am not.
Some days I am up to my ears in Autism. Other days I’m up to my ears in administrative tasks I need to complete. Other days I have chores or projects I’m working on in stages. Some days, I admit, all I want is to be left alone. There are times when I’m quite content to just sit with the dog and read while J doesn’t need or ask for me.
Another problem I have is that people assume I am always near my cell phone or my computer. I am not. There are days when I hardly touch the computer at all, and most of the time the cell phone is shut off on the bedside table. On these days, if you text me, I will not know it.
Apparently, this poses a problem.
I am not modern enough for some people, not accessible enough for others, and make things look easy by -because this is how I was raised- not complaining in all the adjective-filled glory I’d like to display. The fact that I have an adult son who still needs his ass wiped after he poops is not something I like to discuss in polite conversation, but that -more and more- I feel compelled to share when someone doesn’t “get” why we’re tired, busy, or simply want to be left alone.
I can be sociable…in dribs and drabs. And I will allow access to some of the more personal aspects of our family life so that people will understand why their expectations need to be lower…and lower still. I don’t violate J’s privacy when someone is insistently not understanding my roundabout explanations about how we live. I just nod and say “yeah, I know…you’re right.”
I listen to well-intentioned criticism with as much patience as I can muster. I nod at statements regarding how we deserve time alone as a couple (which is being interrupted by the advice-dispensing guest), we’re still young (no, we’re not…the “youthful fifty-something with a disabled adult child is more of a myth than Sasquatch), people know what we go through (I have a 6 a.m. task you can come do for me whenever you feel inclined, and then tell me you “get” how this is necessary -on a digestive distress day- more than twice a day).
I see the little pouts (those are necessary to the proper conveyance of the message that empathy is present), furrowed brows (concern), tilted head (active listening that is formulating a peppy message of encouragement and understanding). I understand people want to help, but I don’t think they understand the kind of help we actually need…
- We don’t need to be made to feel “normal”. We’re not “normal”. If what you present to us as “normal” is what “normal” really is, we don’t want it, thank you.
- We don’t need to hear the words “I feel you”, “I understand”, “oh, I know.” Unless you are a middle-aged person dealing with a developmentally disabled adult and you are looking at your dwindling remaining years as an opportunity to “get everything ready for when we’re gone”, you neither feel, understand or know…
- Your irascible toddler or teenager, difficult though she/he may be, is neuro-typical. They are in a slightly better position to eventually revise and improve their coping mechanisms as they mature. What we have is what we get. If Molly likes to slam the door and yell she hates you because you didn’t take her to her friend’s house for a sleepover, Molly will -hopefully- eventually realize that it’s stupid to react that way to something pretty much trivial. J will never understand -because that’s how he’s wired, thank you- that just because his Slinky is tangled doesn’t mean that the space-time continuum won’t function as it should until I fix the Slinky…
What “cool” I have for dealing with crises of all sorts and intensities is learned. I’ve learned to have patience and not say EXACTLY what I’m thinking when I’m thinking it. I see in my future an old lady that everyone thinks has galloping dementia and says the first thing that comes to mind…let her talk, they’ll say…she’s not well. The thing is I will be well, but I’ll just be old, cranky, sick and tired of being told how “normal” and “awesome” everything is because we make it look so but it’s really rather messy and can be unpleasant. My filter will be gone. I won’t have lost it…I will have, however, dispensed with it quite voluntarily and shamelessly…
Until then, well, here I am…I will nod, smile, not show my teeth, and say uh-huh a lot with what little cool I have.