This is Anxiety
Research tells us anxiety is an emotion, often characterized by inner turmoil, dread, and the expectation of a future event.
It is not the same as fear, because fear is the response to a real, actual event.
Science says there are six major types; generalized anxiety disorder, panic attack disorder obsessive-compulsive disorder, phobia, social anxiety disorder, and post-traumatic stress disorder.
The thing is, I don’t think you can reduce it down to one word, or four syllables, or six disorders, because it is so much more.
It is fire drills, and loud cracking thunder, and bounding, barking dogs.
No dog no dog no dog!
It is the white noise that gets in the way.
It is the disappearing smile; the vanishing joy.
Apparently, it is something called comorbid to the autism spectrum disorder. This means when you have one, you will likely have the other.
My son Jack was six years old when he first became anxious, and it was like the floor dropped right out from beneath him.
All at once, he refused go outside because he was afraid of the wind chill even though it was March and no longer really winter and not even that cold out.
And then he was afraid to go to the bathroom because one time he went in a public bathroom and the toilet flushed while he was still sitting on it so he could never, ever use one again. He had accidents—lots and lots of 6-year old accidents.
He was terrified of dogs. He worried about them constantly.
He started talking to himself. I don’t mean a quiet little reminder to pack pretzels for snack, or a softly hummed nursery rhyme. I mean he was having full-on expressive conversations with himself. He gestured. He grimaced. He jabbed his finger in the air while he muttered.
It chilled me to the bone, watching him converse with an imaginary person inside of his own mind.
We were confused, and perplexed, and scared. One day we had a sunny, albeit quiet and unusual little boy who was working on so many things like how to say hello when someone walked in the room and making tons of progress. The next day, he was gone. I don’t know how else to describe it.
Hello. Goodbye.
We tried something called the Wilbarger brushing technique where we used soft, white brushes to brush the length of his arms and legs. When that didn’t work, we tried massages, and another thing called joint compression where we gently squeezed his knees and his shoulders and his wrists.
When those didn’t work, we went to the doctor. He wore a yellow and blue plaid tie and after he examined Jack and asked him a bunch of questions, he turned to my husband Joe and I.
Oh, he has anxiety. It’s comorbid to autism. We’ll need to consider medication.
He said it matter-of-factly like it was something I should already know—like it was something everyone knew.
In the bright lights I looked down at my boy and it was as though I was seeing him for the first time. I turned the words over and over again in my head until they were one big word without any breathing spots in the middle.
Autism.
Anxiety.
Medication.
Autism. Anxiety. Medication.
AUTISMANXIETYMEDICATION.
Comorbid is an ugly word. It calls to mind darkness and death, which I guess makes sense because even though Jack will never die from anxiety’s wily ways, neither will it let him live.
It is the criminal sitting next to autism in the getaway car, screeching out of the parking lot with all they have stolen from my son—courage and confidence and peace and security.
It eats him from the inside out.
It is the interrupted sentence, eyes wide and wild.
For dinner I want—did you hear that? A dog. A dog! Barking!
This what research and science and Wikipedia and articles don’t tell you. They don’t explain the way anxiety is a fire that burns around the clock, demanding all the air in the room until my son can hardly breathe.
It is cuticles torn to shreds.
It is the whispers in the dark of the night, while a 6-year old tosses and turns in a bedroom down the hall.
It’s like we’re losing him all over again.
I know, I know but I don’t know what to do and I am scared to try the medicine.
But we did. We took the plaid-tie doctor’s advice and on the way home from his office we picked up anti-anxiety medicine and that night, we gave it to our 6-year old son. It was very, very hard to do. We never thought it would come to that. For the time being, anxiety had won the battle.
We looked at it like this: if he had diabetes, we would give him insulin. And when he had strep throat, we gave him antibiotics. If there was a remedy that could quiet his torment, he deserved to try it.
It was not easy, but a few days later, there was sweet relief.
He slept a full night for the first time in months, and slowly, oh-so-slowly, his smile returned.
Ever since then, I’ve imagined Jack’s anxiety like a snake—a slithering, sneaky, savvy snake who comes and goes as it pleases. For six years, the little white pills in the orange bottle kept the snake at bay. Oh, it never disappeared completely, but at times it was dormant—quiet.
Little did we know, it’s just been lying in wait.
Now Jack is twelve. The conversations are back. The constant perseverations about fire drills and the weather are back. He tosses and turns all night long, and his cuticles are a mess.
It smirks at me constantly, this snake.
I can’t stand the smirking. It makes me want to put my hands over my ears and scream.
Stop smirking stop smirking at me I see you. He is my son and I don’t know how to help him but you have to stop the smirking because it’s driving me crazy.
Some days, I think I could handle autism—the quirkiness, the stimming, the constant decoding his unusual speech patterns—if it weren’t for the spectrum co-pilot.
It is annoying. It is relentless and uncompromising. And it never, ever, never stops not for one single second.
I try and I try to stay patient and not snap at Jack to stop asking everyone in the house about fire drills. Every morning, I grit my teeth and I take all the blankets off of his bed so I can tuck the top sheet back into the mattress, where he pulled it out in his restless sleep.
As I tuck and smooth and fold, I remind myself that anxiety may win a battle here and there, but the cold-blooded snake will never triumph in the war that wages within my son. In my heart, I know this.
I know this because although we are still stuck on fire drills and he doesn’t sleep well and he checks the toilet every time he uses the bathroom, we have had some magical, unexpected success in taming anxiety’s sharp, quick fangs.
A dog.
A dog named Wolfie who has the heart of a lion and the spirit of a lamb, who gives Jack air to breathe amidst anxiety’s burning heat.
He is caramel and cream and softness and light, and gently, kindly, he absorbs my Jack-a-boo’s anxiety like a sponge.
Every day, in his own Wolf-like way, he looks the snake square in the face, and without a single word, he says just one single sentence.
He is ours, and you cannot have him.
September 26, 2016 @ 11:44 am
Love this. Beautifully written and beautiful picture!
September 26, 2016 @ 11:49 am
That picture speaks volumes. Thank you.
September 26, 2016 @ 1:06 pm
Carrie,
I, too, live with anxiety (though not with ASD). You have hit the nail on the proverbial head with how anxiety feels. It is exactly like a snake; it hibernates for a while and we forget that the snake is as venomous as it is. And then it wakes up and it bites and we are – once again – at it’s mercy.
I, too, like Jack, have a miraculous healer. She is my Shiloh and she is a 10-year old black lab. She has walked me through the worst of the attacks and she has been by my side for these many years. She reminds me that even though the venom pulses through my veins, the snake will return to hibernation soon. She is my lifeline. I, too, take medications. And they help. But not like Shiloh does. Thank you for continuing to shed light on autism and on your family and on hope. The world needs you to keep speaking up.
September 26, 2016 @ 2:04 pm
I learned that my own anxiety over my child’s diagnoses only increased my child’s anxiety. I had to carefully look at myself and how I communicated anxiety in order to change it. It was not easy, but it did help my child (along with medication, teaching coping strategies and positive thinking, and creating a stress-free, peaceful haven at home-meaning a home environment that is truly accomodating to the child’s special needs and anxiety). In order to imagine how a child may perceive a parent’s anxiety, we could imagine how we would feel if we were ill and our doctor would get anxious and show his or her anxiety in the way he or she communicated with us as well as with family and friends. I think by showing our own anxiety, we tend to increase the child’s anxiety and possibly make the child feel quite hopeless.
September 26, 2016 @ 6:25 pm
Our 23 yr old son has issues with anxiety also. It usually raises it’s ugly head when he gets overwhelmed w writing his college papers. Just yesterday he had to get a test done and write an essay by a particular deadline. These deadlines cramp his style and make him “shut down” in which case he doesn’t do them at all. He refuses to take meds. We’ve tried. When my husband called him out on his attitude and pointed out that he can’t give up, Andrew rallied and finished his test and paper. At his age, he resists help and is horrible about asking for help. That is the disability. We stare it in the face quite often.
This is his 6th yr in college, but only needs 5 more classes to graduate. He insists that he wants this, so we are supportive. We have systems in place, tutors, disability counselors, resource teachers- All of them following along on his progress ready to catch him when he falls or slides off track. A mother’s work is never done, but keep on staying positive Carrie. Things do get better.
October 2, 2016 @ 2:15 am
Hi Carrie~
I can so totally relate to most everything you’ve said – it sounds like you’re describing my son! He’s 14, has ADHD, anxiety (big time) and is prob. on the Autism spectrum – per his psychiatrist. We tried different things for his anxiety, and finally found Prozac to be helpful. He’s afraid of dogs, loud automatic toilets, fireworks, being alone or out of my line of sight (he’s currently sleeping on the office floor as I type), etc. When we go to restaurants, he’ll ask the waitress if the toilets are loud, not what the daily specials are! And he has to ask wherever we go if there will be dogs there. Our newer priest does the annual Blessing of the Animals inside the church, during Mass instead of in the parking lot before Mass like past priests have. So the dogs are there for the full Mass – and we have to make sure we avoid that one. It’s coming soon!
But the straw that broke the camel’s back came when he started having panic attacks in the shower, and would bolt out covered in soap. That’s one thing that can’t be avoided. I’m always with him when he showers, both because of the anxiety and to act as a shower coach, to remind him which parts need to be washed. If he did it on his own, he’d have the world’s cleanest chest……and the stinkiest body. 🙂
Prozac has really helped him a lot. Not a cure, but he no longer fidgets with the front of his shirt when he’s anxious and is fine in the shower. He has actually asked some of the neighbors who are out walking their dogs if he could pet them. But he is still afraid of loud noises – parades and fireworks, especially. And still picks at the chronic sore on his finger.
Thanks for the great article. Sounds a lot like my life!
October 3, 2016 @ 11:46 am
So true! Your words are an eloquent picture of anxiety. More than anything my childrens’ anxiety disorders (and my husbands) have been the very hardest thing about life – anxiety has stolen our joy, years at a time, exhausted us, isolated us, changed everything about the way I thought our life would be, and trained us to have no plans or expectations about the future. For us it was age 7 when things got scary bad (tics, delusions, compulsions, even less sleeping than usual, a need for constant reassurance even to do everyday things, keening/twitching under the table meltdowns about homework, ramped up phobias, tense muscles, random vomiting . . .). Now I have a newborn (a shocking surprise of a third child) and I hope and pray more than anything else that she too will not be saddled with anxiety. There’s a very long list of conditinos I would gladly trade for my kids’ anxiety to go away. Sigh. Good luck, hoping this is just a little bump in Jack’s anxiety, a short flare-up that will get better soon.