Stress

 We've all seen the articles.  They are all over women's magazines, wellness websites, those flyers in doctor's offices.  Stress is harmful to your health.  But hey, here's some ways to reduce your stress!  I'm looking at one now, filled with gems like deep breathing, practicing yoga, taking a bath, reducing your caffeine intake, learning to say no, and, of course, practicing mindfulness.  Okay.  Yeah.  After I'm done laughing, I feel like crying, the kind of crying that comes from being completely unseen by those who are not familiar with the world of severe special needs.

Let's go over a day with Janey.  We'll start with the morning routine.  We wake her up (that is, assuming she's ever slept, which is a big if).  We determine if the bed needs a complete change, and if she needs a shower due to...you know.  We determine her mood---is she screaming and biting herself?  Or manically laughing?  All this affects how long it will take to get her dressed and ready.  Because---we have to be out there soon waiting for a school bus that might or might not show up within a range of time that is up to an hour either way.  But I'm sure a little caffeine reduction and some good old deep breathing is what the situation calls for.

Then---the "easy" part of the day.  Janey is at school.  Now, we only have to hurry and do all the things that are impossible to do while caring for her---bills, housework, shopping, and oftentimes, sleeping.  In there someplace, we need to do long term planning.  Janey is 17.  There's a lot to be done before she turns 18, and we need to get on that---NOW.  By the time we can draw a breath, the bus is heading home.  We haven't gotten in a bath, or any mindfulness---shoot!  We have gotten in a lot of mind-full-of-stress-ness, though---the worry that never quite leaves us every time Janey isn't within our sight. We love and trust her teachers and aides and therapists, but we don't know how her day is going.  Is she having a tough day?  Has someone else having a bad day of their own yelled at her?  Is she confused, scared, bored, overwhelmed?  Is she safe?  The stress of having a child who doesn't communicate much at all with us---that base level of stress, even on the easiest day, is never, ever gone.

And now, Janey is home.  We are happy to see her.  We hope she is happy to see us.  Some days, she gets off the bus with smiles.  Other days, with screams.  We check if her notebook is written in.  Did she have a tough day?  Did she sleep all day at school after a sleepless night?  Did she have a lot of "energy" (read that as manic energy, pacing and repeating phrases and laughing randomly)?  We hang on every word written, desperate for a glimpse of her life away from us.  

The afternoon and evening.  Janey, even in the best of moods, makes constant demands---"Want to go for a car ride?  Want a shower time?  Want tuna?  Want salami?  Want cheese?  Want Buzz Lightyear?" and the non-specific but highly insistent "I NEED HELP!"  Sometimes, we try the stress reduction technique of learning to say no.  Any no, even after minutes and hours and days of yesses, is met with a scream, some arm biting, stomping.  As we deep breath our heads off, Janey repeats the demand that caused the no, every minute for hours.  The things she asks for, I know, are things to relieve her own stress, stress which I am quite sure is as pervasive and severe as ours.  The warm water of the shower, the music and movement in the car, the videos repeated over and over---she needs stress relief too, and she doesn't know, isn't able to know, how that stress relief works on us---how stressful it is to be her parent, to want to do anything on earth to help her, even as we are falling apart.

Then---bedtime.  Or not.  These days, a night where Janey falls asleep at a reasonable hour and stays asleep all night happens probably 1 out of 3 nights.  The other nights---another 1 out of 3 feature short sleep, with her falling asleep easily but waking at 1 or 2 am to never go back to sleep, or her finally falling asleep at midnight or 1.  The remaining third---no sleep nights.  No sleep at all.  None.  That was last night.  And when Janey doesn't sleep, ain't nobody sleeping.  She constantly wakes us, either by asking for the same things as daytime---"Salami!  Shower!" or by screaming, or by turning on the TV or one of the devices she has, loud and endless..."It's fun to act like animals!  Fancy Nancy! Little Einsteins! Forky! Three Little Kittens!" ... the tunes that play on constant repeat, in my mind even when they are not actually being blasted.

And then it's morning, and it all starts again.

Janey is the love of our lives.  She is amazing, fascinating, beautiful.  And it is not her fault, in any way at all, that the stress of caring for her is...there is so much I want to say here and I won't. And I won't do what I am hugely prone to do, what I am sure many of you are prone to do, to minimize, to worry that speaking the truth of the stress is somehow wrong, to pretend that I'm fine.  I wouldn't do that because I know I'm not alone here, that others are living this life, and that one of the hugest stressors is feeling alone in your struggles.  You aren't.  I'm not.  And with that, I'm having another cup of coffee---today, as every day, is not the day to reduce my caffeine.

Impossible things happen every day

 As I write this, it's nearly 11 pm, and Janey is wide awake.  Not an uncommon thing, to be sure, and I'm pretty sure she's not going to sleep at all tonight.  We've learned to tell, over the years, if it's going to be a sleeping night or not.  

What I've been thinking about a lot over this past month is how Janey's kind of sleep issues just are not much addressed in any kind of sleep advice I've ever read.  And I think that's because sleep experts, or parenting experts, or autism experts, unless they have a child themselves with Janey's kind of sleep problems, just don't believe us as parents.  

And it's not just sleep, I've realized over the years.  I don't think the experts believe how much the wrong food can affect Janey.  I don't think they believe that she can know so many words but be able to express herself verbally in such a limited way.  I don't think they believe that it is impossible to fully toilet train her.  I don't think they believe she can show physical illness in the ways she can.  I don't think they believe the extremes.  

Or if they do, they don't know what to do with the kind of extremes we as parents deal with.  It's easier to just discount what we are telling them and dealing with than to accept there might be areas they aren't up to helping with.

With the sleep---Janey can and has literally gone 3 nights with a total of 4 hours of sleep.  Not per night---TOTAL over the three days and three nights.  And she can still function---in fact, can still be jumping up and down and giddy on day three.  This happened over Christmas break, and it's happened before.  Before the break, we saw the other extreme---a two week period where Janey slept pretty much all day and night.  She came home from school and went to sleep, she woke up enough to sleepily go to school, she slept off and on there, she came home from school, ate a lot, and went to sleep again.  We tried near the end of these 2 weeks to talk to her pediatrician, to see her, but before that was possible (with the COVID surge, sleep issues are a low priority), the spell was over.  It was like she decided to catch up on all the lost sleep of many months, and once she did, she went back to little sleep.

With words and speech---I don't think any speech expert has ever really gotten what I've tried to explain about Janey.  She has the words, in her head.  But she can't access them easily.  One of the only ways I know she DOES have the words is the rare time I've caught her in exactly the right mood to do flash cards.  I ask her if she wants to, and if she does, she will name things that amaze me.  Recently, she identified a swan, broccoli, a lime, a skyscraper, a slug, a person crocheting---all within about a minute, all words I've never once heard her say before.  But the advice I've gotten or read to encourage speech never addresses how to help her retrieve the words she knows.

And toilet training---that's enough to set me off on a rant.  How is it that Janey has at several points been fully trained, only to lose the skill?  How is it that most of the time, she is trained at school but not at home?  Why does she often need what I'll call a severe change in the night, when she's been asleep?  You can write a hundred expert books of advice about motivation, about routine---those aren't the issues here.  Believe me, if expert advice worked for Janey in that area, we'd have been done with this particular problem many years ago.

The example of Janey not lining up with what is said to be possible that most haunts me---Janey motionless in bed in the hospital.  A doctor shaking the bed.  Janey doesn't move or make a sound, and the doctor says, almost with a chuckle, "well, she certainly doesn't have peritonitis!"  But she did, as a result of an appendix that at that point had been ruptured for two days, and would be ruptured another day before finally, she had life saving emergency surgery.  But someone with peritonitis CAN'T keep from screaming and moving when their bed is shaken.  They just CAN'T---unless they do, as Janey did.

My fellow autism parents are reading this with their own lists in mind of the "impossible" things their beloved kids do or don't do, I'm sure.  I'm preaching to the choir.  But why is it so very hard to get believed?  Is it because it's easier to give advice based on what you think is true, not what some crazed parents is telling you is true?

This is why I try very hard to not discount what others might think, in all areas of life, to be impossible, insane, foolish.  I know what it's like to be awake night after night caring for a child that can't possibly not be sleeping, to be astonished by the words my minimally verbal child is saying with ease, to have a critically ill child not being treated promptly because she is reacting in an impossible way.  Listen to parents, especially when they are speaking for children that are impossibly complex.  I love you, my incredible Janey.