In the Eye of the Storm
I never make New Year’s resolutions. I can’t really say why, I just never have.
I did see a cute idea online a while back, and while we were eating dinner one night last week, I suggested we keep a small jar on the kitchen table, and every time something good happens to one of us—a good grade or a fun day or whatever—we can write it down on a little piece of paper and put it in the jar.
Then next year, on New Year’s Eve, we can take all the papers out and read them and celebrate all the wonderful moments we had throughout the year.
“Can I use my markers?” Henry asked.
“Yes, of course—”
“Do you mean good stuff for the whole family or one person?”
“Well, Charlie, I think for–”
“That is. The STUPIDEST IDEA. Ever.” Jack announced. He was rolling a meatball between his fingers.
I looked over at my 11-year old son—the one who used to keep every family tradition and drag out the Valentine’s Day hearts in January and beg to go apple picking in August—and I sighed.
I like to compare Jack to a snowflake. He is unique. He is original. He is dazzling and complicated. And if this boy is a snowflake, then autism is the snowstorm in which he has been trapped for the past month.
He still isn’t sleeping well. He’s still angry, and swearing, and stimming.
He’s still chewing on his clothes and his fingers, and he leaves a wet, sticky trail on every single thing he touches—the remote control, his pencil, my phone.
He is raising his fist to us, and stomping his feet, and slamming the doors.
For weeks I was sure my tender, sweet, funny, fragile boy was still in there—that he was simply hiding beneath an icy cover of rage and anxiety—but now, as we slip and slide and scramble to try to lead him out of the blizzard, there are moments when I’m not so sure.
This is the dark, scary side of autism you don’t hear a whole lot about, and I get it.
Trust me, I get it. When Jack was a toddler and I had to pick him off the floor of Walgreens and carry him over my shoulder, kicking and shrieking and crying, well, that was a little more palatable. The public has witnessed many children throw tantrums, and although autism’s rages are high on the Richter scale, they aren’t all that inappropriate.
Now, it’s getting personal.
When Jack was in the second and third grade, he started to reach for the worst words he could think of—intermingling phrases he’d heard on the radio or TV with everyday language.
Give me some. SEXY pancakes.
It is for stupid.
I need no static. On the DAMN radio.
In sixth grade, words are like the forbidden fruit on a really tall tree, and Jack is going to stretch as high as he can to reach them.
I think for drugs. Everyone does them.
I want to do. For an execution.
I hate us.
I hate me.
I hate you.
Hearing him say this stuff was heart wrenching and maddening and confusing all at the same time. I didn’t know what to say or do or think. I, too, was trapped in the storm, and I couldn’t get my footing on the slippery ground.
I needed a plan, and so I started to make some small changes.
I made him move.
Not out of the house, of course, as tempting as that sounds. No, I made him move his body.
Jack is not particularly inclined toward exercise, and unless there’s a sit-on-the-couch-playing-Minecraft Olympic sport that I’m not aware of, he moves very little throughout the day.
Now, every single time he says a swear word, I make him go outside with me to play basketball. And we stay outside until he makes at least one basket—more if he says a bad word on the way out the door.
In the middle of dinner.
Right before the bus in the morning.
Last Tuesday, at 9:00 at night in our pajamas, which stunk because it was about four degrees here in New Hampshire and the entire driveway was a sheet of ice.
I made myself move.
Again, not out of the house—although a little 3-bedroom condo of my own wouldn’t be the worst thing in the world—but actually move.
For about three years now, I’ve alternated between Crossfit and Bikram Yoga throughout the week. But as Jack continues to get more and more agitated, and my own stress is building, I find the silent hush of the Bikram hot room too quiet. Every time I try to relax, my mind spins and races.
I hate you I hate me I hate us.
Similarly, Crossfit’s heavy stamping music and rap lyrics only reminds me of his hostility.
So I’ve started moving my feet to the pavement, or rather, the treadmill because it’s freezing cold here and I’m not about to take a chance with a bear who decided not to hibernate because he’s hungry.
New Hampshire, remember?
In the past month, I’ve logged more miles on the treadmill than I’ve put on my car. And before you ask, no, I haven’t lost a gad-dummit pound.
But I needed to be alone, and hear my own music and breathe my own rhythm and, for one single hour, run my own race.
Medicine.
This never, ever gets easier. When Joe and I originally started Jack on the anti-anxiety medication clonidine, we had grand visions of taking him off of it in a year or two. He was six. Now he’s eleven.
Isn’t our naiveté just precious? Honestly. We would be adorable if we weren’t so blindly dumb in the face of autism’s cunning aptitude.
I hate it. I hate having him on medicine. But the truth is, for him it works, mostly because it helps him stay asleep a little longer. So last week our doctor gave us a new prescription, and we crossed our fingers and we prayed.
I stopped letting him get away with crap.
My biggest challenge as a mother to a kiddo with autism—besides the medicine thing and the no sleeping stuff and the swearing and the tantrums and the rolling of the meatballs between the fingers because he must, must feel every bite of food before he tastes it—besides all that, my biggest challenge is trying to decide if something he’s doing is a part of the spectrum disorder, or just behavioral.
Is it something he’s unable to control—like stimming or anxiety or an interrupted sleep cycle—or is he trying to get a rise out of me?
The fact is, autism or not, Jack does not have the right to turn our house on its ear week after week, and keep all of us on the edge of our seats with his wildly vacillating moods. So we laid down the law and made a few simple rules.
There is no swearing. There are ninety million and forty-six other words he can choose, but he can’t say F&^%.
F&^& equals basketball in the driveway, and I don’t care how cold it is outside.
A raised fist is a one-way ticket to his room for ten minutes.
He can do homework at home, or during recess the following day. This is his choice.
I am still.
Not long ago I was talking to someone who is dear and special and wise, and I told him all about Jack’s distance, his aggression and anger and deep unhappiness, and this man asked what it was like for me to watch my son change so dramatically from one day to the next and I cried big dumb tears and I said it was hard—very, very hard and I was sad and confused and scared we’d never get him back.
And then he asked, “Are you only as good as Jack is?”
This question really made me stop and think. I considered the way my moods ebb and flow according to Jack’s highs and lows, and the way I suffer every one of his heartbreaks as if they were my own.
That’s when I realized: although I will forever be bound to this boy by an invisible, tenuous umbilical cord, I cannot chase him through the snow. I have to stand still, and wait.
Is all of this stuff working, the running and the basketball and the little pills in an orange vial? I can’t really say. There have been moments where I glimpse my child through the softly drifting snow—an afternoon without a rage, a small smile, a quick glance in my direction—and then he retreats again into the darkness.
But if nothing else it is a plan, a homemade recipe of exercise and medicine, deference and stillness. At this point it is the only hope I have to bring my son out of his mysterious, private tempest.
And yesterday I found this crumpled piece of paper on our kitchen table, like a gentle snowflake that had fallen from the sky.
January 11, 2016 @ 12:14 pm
Carrie…I love your writing. I truly look forward to your weekly blog. Please bear with me as I offer up a question as I am sure to get told a thousand ways to parent your children all the time. Several of your son’s symptoms remind me of my own children at the same time. Could his teeth…12 year old molars… be bothering him? I know your husband is a dentist, but I offer up this as it has truly caused a lot of pain for tweens, not just sore teeth but sore stomaches, poor sleep etc. All the best.
January 11, 2016 @ 12:32 pm
I admire your tenacity, your patience and your willingness to share. Only those who have been there or are now there understand the pain that accompanies autism. I understand. And I’ll remember you in prayer.
January 11, 2016 @ 1:30 pm
A tiny snowflake of success drifted your way! May there be more single flakes that delight your soul until the storm ebbs again.
January 11, 2016 @ 1:36 pm
Exactly!! Carrie, I love your blog. Your stories remind me that I’m not alone. Our son, Luke, is 10, and so much like Jack. And like you, my biggest struggle is to know when the bad behavior is because of autism or because he’s a kid pushing his limits! I totally understand. Thank you for sharing this! I will keep your family in my prayers!
January 11, 2016 @ 1:40 pm
You are doing such a good job, especially with self-care. I’m going to try to learn from you on this. When my son with ASD began the “I hate yous” and swears at 12, his therapist gave us thumbs up as it is a typical milestone for kids this age to push those boundaries. I wanted a pretty milestone like showering; but I got swearing. I’ll take it, kind of: he gets 5 to 10 pushups for each swear or inappropriate/disrespectful remark. It shows him (and the younger 4 kids looking at him) that it’s not ok and gives him some physical input that he needs to ground himself emotionally. It’s nice to see someone else going through something so similar. Thank you!
January 11, 2016 @ 1:59 pm
Just know you are not alone, and there are so many people rooting for Jack. Just finished your first book and loved it. Hoping he comes back to you in all his glory soon.
January 11, 2016 @ 2:03 pm
Another great post. You have no idea how helpful they are to me. I look forward to each one every week and I can always relate to them. Thanks for sharing your life with me.
January 11, 2016 @ 2:04 pm
Just beautiful Carrie, thank you so much for sharing these moments and I especially love the note you found, totally get that little joy, those beautiful snowflakes xx
January 11, 2016 @ 2:27 pm
Oh this is us right now. My daughter, or the one I was mostly used to, has been gone since October. Even a hospitalization didn’t bring her back. We are finally starting to see glimpses of her again and I realize how much I’ve been holding my breath.
“Are you only as good as Jack is?”
That hit me really hard.
January 11, 2016 @ 2:40 pm
What a great mom you are. To keep trying from one angle to another to still one more. It’s such hard work, and you do it beautifully. I wanted to tell you a bit of my own history with antidepressants and antianxiety, medications.
Depression clearly runs through my family. I remember my mother in the bathroom for hours every day, smoking cigarettes and reading philosophy, every day. They had no antidepressants back then. As for myself it started in my early 20’s and there were still no antidepressants. When they were finally developed, they changed my life, and made it infinitely better. And here’s the thing – if my husband took them, I don’t believe they would have any effect on him. I don’t know if that’s reassuring at all but medication can help lives in so many ways.
Exercise is also good for brain chemistry, and as an artist I can attest to art being very effective at helping me with depression and anxiety. My son went to a counselor who helped him to deal with his anxiety with exercises that he then used in school to great effect.
You are doing a great job. And it is the hardest job even without all these other challenges piled on. So keep up the good work and thank you so much for sharing your insights, your joy and your pain. You are always inspiring me.
January 11, 2016 @ 4:06 pm
My kids had similar symptoms that would come is waves. We finally figured out that they had PANS/PANDAS. There are a lot of ASD kids who also have PANS /PANDAS.
http://www.pandasnetwork.com
January 11, 2016 @ 7:14 pm
This is my favorite post from you yet. I am so sorry you are all going through this. I can relate to a lot of this. I can especially relate to your happiness being tied to your child. Thank you for being brave enough to share this part of Jack’s story.
January 11, 2016 @ 8:05 pm
Puberty is a pain in the butt for all children and parents and even worse for disabled children I think. Your plan sounds good. Just wish I had used it on my two “normal” kids:)
January 12, 2016 @ 12:53 am
so close. I am always the target for Nash. But I am also the one that holds the line. I will not give in just because autism lives here. there are rules for everyone and just because autism hangs out at our house doesn’t mean you get to be a poo poo head whenever you want to be. and deciding that your 18 year old sister can be your personal target is unacceptable. autism sucks.
January 12, 2016 @ 12:58 am
My son started this same behavior at about Jack’s age. Especially hating me. He will be 20 in March and it is finally getting better. I think you can chalk most of this issue up to boys and hormones and body changes. My daughter is two years older and she isn’t as bad, but she has had her moments.
The basketball for discipline may just be the greatest thing I have ever heard in my life. I can see Jack using this as a self control method on his own. Maybe it is something that can translate at school. And exercise is always good.
January 12, 2016 @ 8:56 am
I can pretty much leave the same comment on all of your posts….THANK YOU for sharing. You have no idea how much they help…it’s like you put into words what I’m thinking. It’s nice to know you’re not walking alone on this crooked path of ASD.
January 12, 2016 @ 10:37 am
Thank you Carrie for writing this brave article. I have a 10-year-old son with autism and ADD that went undiagnosed until this year. I recently put him on Ritalin which has helped tremendously, but doesn’t take away the tantrums, especially at night after it has worn off. What you described is very much like what my son experiences. Your metaphor with the snowflake and the snowstorm is exactly how I feel about him, and I just had to cry a little knowing someone else feels the same way.
January 12, 2016 @ 11:51 am
Hi Carrie,
I read your post every week, always through tears. You absolutely nail the autism experience. You speak my words, my truth. Thank you for reminding me, every week, that I am not alone… ❤️
January 12, 2016 @ 4:12 pm
‘Are you only as good as Jack is?’ omg that sums up my life, i am as good as my 8 yr old daughter is, thank you for ur amazing blog, meant to commen for ages!
January 12, 2016 @ 8:21 pm
As every week, thank you!!! It is so hard to imagine how so many children could go through similar things. The tween years seem to be particularly tough. Reading your post and the comments, I definitely feel like we are part of a community. Thank you for sharing!
January 13, 2016 @ 12:04 pm
Carrie — so sorry for what you are going through. My son came down for breakfast yesterday and the plates, food and placemat went flying. He was upset with his Minecraft server from the day before. Then he started crying about bullies on line. Then he calmed down as the ‘storm’ passed. Behind it was is smile —- his sunshine.
January 14, 2016 @ 4:51 pm
Oh Carrie, I hear you. My daughter is on the spectrum, and is high functioning. She turned 18 last May, and in September started acting out so that hospitalization became necessary…10 times since then. I just brought her home this morning after she swallowed half of a pencil sharpener blade yesterday- in front of her therapist. Last November she was finally diagnosed with Borderline Personality Disorder, on top of the ASD issues. Although she has been difficult since birth, when she hit puberty things starting ramping up- the language, the aggression, the self-hatred. She was in placement for 18 months, which made matters worse, so we finally decided to take her out just before her “senior” year. This is a nightmare that I can’t wake up from. And I can’t imagine how awful it is for her to live inside her brain. No one has EVER been able to figure out what makes her “tick”, and yes, the question has always been “can she control it or not?” Is it behavior or disorder?
January 16, 2016 @ 8:34 pm
My daughter is autistic. She’s 16 years old and has been fighting depression since puberty kicked in several years ago. Her new doctor recently took her off Clonodine as she said that her experience has shown that it makes kids angry and aggressive, although none of the literature shows that. My daughter is now taking Trazadone instead. I know these side effects vary by person so it may not apply to your son.
August 22, 2016 @ 8:59 pm
Just from one Mom to another, have you ever tried swimming? It has been the only outlet for me in so many ways. I can go underwater and cry, or scream, and make all the ugly faces I want – and NO ONE KNOWS!! And I can pray while I swim laps and I’m never bored. Been doing it for years and other than the relaxation water brings and the good-for-the-body-to-exercise thing, it has brought me through days when I just didn’t want to go on. Recently I laughingly shared it with another swimmer and then immediately wished I hadn’t of course. BUT he stared at me with huge eyes and said, “me too”.