Monday Night
High Is the Anxiety

Acceptance, Crisis and Extreme Love

Wednesday was Charlie's third day on a wave of not sleeping. He did go to sleep after 3am, after hollering for his iPad and yelling the Chinese names he calls my parents. Jim left early on Wednesday for a PhD defense, before Charlie dragged himself down the stairs to the bus. He had a field trip to a farm and had a great time, got smiling off the bus, wanted the bikes as he had on Tuesday when Jim had to work late (oral examinations for another student) and then as soon wanted them put away (whereas on Tuesday we had left them out for a few hours and Charlie ran happy circles in the yard), demanded a car ride for a burrito, demanded another burrito as we went home, gave me a look once we got home and said 'Daddy' which meant I had to produce Jim at that very moment (oh for Harry Potteresque abilities), sat in the brown chair after I set the timer for five hours, let 2 minutes scroll by and struck his forehead on the wood molding, ran to the dining room and cleared a table of bike helmets and papers and whammed his head hard and stood wailing so loud I had to repeat my description of 'my son in crisis' to the 911 operator several times.

At such times of crisis, we know in our bones how deeply we love our boy. 

First responders in New Jersey have to have autism training and it is helping. Two squad cars came without flashing lights and the policemen, seeing that Charlie was simply standing in the living room, stood in the front yard. One left, the other called the EMTs and asked that they keep their flashing light off, and then the officer stood outside. They had dealt with an autistic child in a similar situation before, he told me, and he thought that the policemen's presence on entering the house had made things worse. Indeed, the officer never came inside; the EMTs showed up and Charlie answered their questions echolaically ('does your head hurt?' 'hurt' 'does it hurt a lot?' 'a lot') though I think the echolalia would have been hard to spot if you didn't know, as Charlie spoke very clearly. They wrapped Charlie's whole head in bandages to keep gauze over the middle of his forehead so he had a distinctly swami look.

Everyone was very kind and calm and it all helped de-escalate things fast. Charlie fell asleep until Jim returned, roamed around and used his iPad and snacked at midnight and was back to sleep at 1am, with the iPad playing the Pogues softly.

Turning the music to soft is my new innovation. Full volume Pogues or any music ('A WHOLE NEW WORLD' 'NOW THAT YOU'VE FOUND YOUR PARADISE THIS IS YOUR KINGDOM TO COMMAND' 'CHRISTMAS CHRISTMAS TIME IS HERE') can rev up anyone and Charlie, being 15 and being, well, Charlie, isn't exactly good at monitoring when he's happily hyper and liable to become unhappily hyper, and manic, in the next second.

I had seized upon the lower volume iPad as an alternative to my Tuesday night stratagem. Charlie had taken the corner of his iPad to the bathroom wall; I turned the device completely off.

But by Wednesday, Charlie had just had a surfeit of too much. Not only had Jim worked late three days recently, but I had been gone on Monday for Parents' Night. There was lag from my parents' visit and, while we did not talk at all about my dad breaking a vertebra and being hospitalized -- he is back home and does not need surgery, thank you for the kind messages -- Charlie always figures such things out. I suspect it was all keeping him from sleeping: He has really struggled with insomnia this whole year but the past week has been the worse as far as consecutive non- and minimal-sleep days. I knew Charlie was sleep-deprived and therefore less in control of himself as usual. Plus, the weather was humid and warm after last week's lovely crisp autusm days and clear blue sky.

Of course, I do not want to make calling 911 a regular occurrance. But on Wedesday it was important to call as soon as possible, to keep things from getting worse.

Thursday morning, Charlie got up and onto the bus and I quote Jim that, rain or shine, "we're riding bikes today."



Life with autism leads us into places we never imagined going. Glad to hear the first responders were so well-trained. Autism is getting to be so much more familiar to the general population, which is really helpful when you have a child with severe autism!

Emily Willingham

I hope his head is OK today. I'm glad the EMTs seem to be so aware.


You've expressed beautifully the love you have for your child. I live in what sometime feels like a parallel universe and know how quickly things can escalate. I am glad to hear you had good support in that most desperate of moments. Hopefully along with the bike ride, more good (and some sleep) is coming along soon.


Oh no. Oh wow. I felt very emotional just reading that. I can't even imagine ... Thank goodness he is okay and that those people were understanding. I hope so much that he is able to feel better and to sleep soon.

Liz Ditz

I'm so glad it all turned out well....


Soapvoxing for change, care2, and the many ways your family advocates is rewarded when needed support is delivered with such grace and thought.
Hoping for sleep.

Miguel Coy

Having people in our surrounding who understands us is the best way to cope up any difficulties, problems or illness we encounter. Somehow, they can give us more energy, inspiration and to be more motivated.


Just sending love.

Kristina Chew

Thank you so much, Karen.

Patricia Wright

Just catching-up with your posts now Kristina. WOW! So glad that all are safe. Appreciate hearing a positive experience with First Responders. And as always have such admiration for how you both move through and describe your love for Charile and the experiences of your family.


I need more of your intuitive-style parenting. I wish only the best for your family, but meanwhile, you're showing me how easy I have it with kids of trauma and abuse from Russia (no autism).

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