Outgrowing His Words
Letting Go and Letting Be

It's the End of the World as We Know It

Charlie and Jim returning from a winter walkThis post is about the difficulties of writing about something very difficult, self-injurious behavior and, specifically, head-banging. Things which I, prior to having lived through many things with Charlie, would have said were tantamount to the end of the world as we knew it. 

Being honest about the difficult things that happen in our lives has always been part of my blogging since I started writing about Charlie online in June of 2005. I used the word "bittersweet" in yesterday's post and maybe that's the word that best characterizes my blogging about Charlie, in that there are lots of tough moments when, indeed, SIBs occur, and there are lots of happy, lovely times when it just feels good to be alive, going through the daily journey of our lives together. But somehow, it often seems that "honest writing about autism" means emphasizing what's difficult about life with autism and one comes under suspicion of wearing rose-colored glasses if one is "too positive and upbeat."

Charlie was a toddler when we first saw him hit his head. Observations by numerous teachers, therapists, behaviorists, and others have led to a conclusion Jim and I have reached ourselves: Charlie does this for a number of reasons and helping him not to do it has, in his case, called for: ABA, medication, lots of physical and aerobic exercise, being watchful about Charlie's diet, some biomedical remedies (when Charlie was younger), picture schedules and activity schedules to help him through transitions and to show him what to expect throughout the day, teaching him to communicate and express himself (through sign language and speech, primarily), attentiveness to  his sensory sensitivities (noise, different textures and smells), leading him through and away from whatever he might be perseverating on (again and again we've seen the pattern of Charlie becoming very, rigidly, obsessive-compulsive about something and then head-banging). There have been long periods (a couple of years) when head-banging has been minimal. Entering adolescence has seemed to lead to an increase in head-banging, unfortunately; coupled with Charlie being adult-size, it is a whole different game to handle SIBs and other "challenging behaviors" of all sorts.

Too often, Jim and I find that, at IEP and other meetings about Charlie, SIBs and "challenging behaviors" get mostly talked about. The result is that some 90% of our attention gets focused on something Charlie spends a very small percentage of his day doing. Of course, the severity of SIBs means that there has to be a lot of talk about it, to teach Charlie other ways to handle sensory overloads and to express himself. But somehow in writing about autistic children, there often seems to be an overwhelming tendency to go on and on about the 4% of the day that was difficult, and to skim over the remaining 96%. Certainly there's a huge need to talk about that 4 or whatever percent: Most children don't bang their heads into walls on a regular basis and most people are neither able nor willing to talk about this sort of thing. 

It would be easy for me to fill up post after post about that 4%. But even on the day when Charlie (sigh) broke the window at the doctors' office with the back of his head and the EMTs appeared, he spent the rest of the day waiting patiently for hours in a crowded ER waiting room and let a strange doctor examine his swollen mouth. It would be dishonest of me to say that that Saturday in December was a totally awful day because---while it had some low moments, you can be sure---it had plenty of good moments. All of our days with Charlie do.

I've also learned a few things from blogging for almost five years about autism and Charlie, both on this personal blog and also in more public venues like Autism Vox and the autism blog at Change.org. Charlie is a lot more than his most challenging moments and I think it's important for his dignity and his privacy, and that of our family, to represent the reality of our life not as segment upon segment of "autism nightmare without end," but as beach trips and bike rides and writing lessons and sweet silly moments. Readers can say whatever they wish, but I am Charlie's mother. After one Autism Vox post led to comments from someone asking what was wrong with me, hadn't I tried giving my child Vitamin C to stop the SIBs, I realized that I didn't care to have my child and his struggles discussed so casually. 

So yes, "neurological storms" can be real intense---real bad---around here. There's a bump on Charlie's forehead that won't go away, the doctors told us. There are a number of holes in the walls that Jim has been patching and painting. We're only using plastic dishes and cups since those don't break when they get thrown. The blue couch that Charlie likes to sit on is draped in blankets and pillows and soft things, just in case. We have to break up his video watching and CD-listening (in the car), lest he become over-stimulated and start knocking his head around. We're wary of motorcycles and police sirens, crying babies, shouting and coughing, and high-pitched voices.

One thing I have learned from all this is that often the most obvious solutions just treat the problem people see, without addressing the deeper causes. Thus did the school district (and their lawyers) insist that Charlie wear a helmet. But that blue plastic apparatus has been the equivalent of a putting a band-aid on something serious that requires much more examination. The "protection" offered by the helmet was limited at best. As Jim and I predicted, Charlie banged his head harder while wearing the helmet (which makes for really big holes in the walls). He probably started banging more while wearing the helmet (in part due to the discomfort of the thing?). 

The real solution (because you have to hope there is one) has been to think of head-banging in terms of sensory overloads, communication limitations, anxiety, frustration, and much much more; as something very complicated, that needs to be addressed in manifold ways, and with patience and understanding. So far, this seems to be happening for Charlie at his new school. The teachers have started fading the helmet off: Charlie is not wearing it now during lunchtime. They don't plop it on his head from the moment they see him, as his teacher and aides did at his former public middle school, but talk with Charlie as they walk to the classroom.

And as for the honesty and the reality issues. You can get a broader view about what it's been like, and what it's like, to raise Charlie, over on Jim's blog, The Irish Waterfront starting with this post All Along the Jersey Shore and, too, In Walked Charlie. Jim started the blog when his book came out last August and I'm very excited that he's decided to do more writing about life with Charlie and our life.

Tuesday started at about 4.15am for all of us, as that's when Charlie got up and got dressed. He poked around in the kitchen while I made coffee (may as well), watched some things on my computer, and then asked for "bedtime" and took himself back to bed---a new development, as he's previously seemed to think, once he's up, he's up, and he can't go back to bed till the evening. Charlie slept until 7.30am and had a good day at school, and an energetic walk with Jim. He helped himself to a pack of sushi and asked to watch YouTube on my laptop which almost got, um, decommissioned, as he suddenly got sick all over the place.

Jim helped Charlie get cleaned up while I shook out the slipcovers and blankets. Poor Charlie, looking rather gray, conked out on the stripped down couch for a couple of hours. He was edgy on waking, understandably, and looked eager when we mentioned getting into the white car. As Jim drove, Charlie got very insistent about listening to one of the same three CDs we've been listening to over, over and, yes, dangerously ad nauseam. He just kept handing me one of those three until I asked him for the CD case. I found an old REM CD and put it in and from the moment he heard the first bars of the appropriately titled "Drive," Charlie listened with big bright eyes. I impressed Jim by singing along to all the songs and we agreed, got to get more REM for Charlie, most certainly "It's the End of the World As We Know It."

And yes, we feel fine.

Comments

Judy T

As I read about Charlie head banging more intensely with the helmet, it occurred to me that the helmet blunted the "input" of his head banging, so maybe he HAD to bang harder for the same effect. Then it becomes more dangerous to get rid of the helmet because if he hits his head that hard without the helmet, the danger and pain to himself is that much greater.

Also, it's so true about the percentages of the time that are "good" or "bad." The thing is, that's true regardless of the neurology of your child - there are good times and bad times. NT kids throw tantrums, get defiant, lie, etc. Their parents don't spend 98% of the time talking about that stuff because the manifestations are all so familiar to everyone. It's just the "peculiarity" of our kids' "stuff" that seems to make it so noteworthy. When an NT teenager gets high/stoned, the parent might be angry or upset, but it's not the focus of their lives for the next year (unless there's an addiction issue). Maybe they laugh it off (with their peers, not with the child), remembering their own youth. I think it's the unfamiliarity that makes the ASD "stuff" seem so much more compelling.

farmwifetwo

The permanent bruise/callus does go away. Ours was there from age 1.5 to nearly 8... but it's gone now.

But the headbanging has to stop first. B/c it's there it no longer hurts to hit with his head, therefore decreasing the dopamine, therefore increasing meltdowns looking for the "drug".

A nasty cycle and one I'm glad we've 99% - b/c he did do it on Sun for the first time in 6 or more mths but we shut it down quick with consequences (no DS for a week) - I won't allow it... it's not "communication".. it's behaviour. And it can kill the person doing it.

Kristina Chew

In our case, there is a lot of communicating going on with all described in this post. Of course, 'allowing' such behaviors does not happen among us. I am not in the position to contradict a doctor!

Evan Tasch

REM and a Charlie post all in one...does it get any better??? Shocking that one particular commenter can't take subtle and not so subtle hints....hmmmm.

Shannon

Hey Kristina, please know that I have always appreciated the honesty that you bring to your writing, especially your role modeling how to do so with grace and without spiraling into self-pity.

Has the possibility of migraines been explored? We've previously discussed the similarities between Charlie's "episodes" and Jennyalice's Jake's episodes. I know that Jake's mom treats him for migraines, and that the treatment really seems to help:

“Episodes”

"In the past: Pain from unknown source for 9-11 days every 5-6 weeks “episodes” resulting in near loss of sleep, severe agitation, self-injurious behavior and complete non-compliance. Jake also suffered from panic attacks, which could blow up into major tantrum/agitation.

"Current: Pain has been partially attributed to migraines. Episodes continue to come every 5-6 weeks; duration has been decreased to 5-6 days. Severity seems to have diminished slightly. Reduction in symptoms can be attributed to better use of psychotropic drugs (Zoloft, Valium), better communication between home and school (to identify early symptoms) and use of Maxalt, an anti-migraine drug. Panic attacks have decreased dramatically.

"Jake still has severe agitation during episodes."

(from http://jennyalice.blogspot.com/2009/07/notes-about-jake.html.)

Also, Amanda Baggs recently discussed being in a state of constant migraine pain:

"I don’t just get a migraine every now and then. I have a migraine from about five minutes after I wake up until I go to bed. If you are not acquainted with migraines, be aware that they are not just headaches. They are an entire set of neurological things that cluster together, for reasons that are not totally understood. They are also not, as once believed, psychosomatic. They are more like epilepsy than like a stress-related headache. (They can, like many things, respond to stress, but that’s not all there is to them by a long shot.)

"At any rate, they can create nasty headaches (and some of the most severe pain there is), visual disturbances (blind spots, seeing flashing lights, etc), fuzzy-headedness, difficulty with speech or language, nausea, vomiting, extreme sensitivity to light, noise, and scent, stuffy nose, upset stomach, muscle weakness, and difficulty moving. They are the sort of thing that very few people who have them don’t want to cure. They’re unpleasant enough generally that even without the headache part, they’re not that much better than with the headache.

"And the marker of “severe migraines” is having more than six a month. I’d imagine thirty a month qualifies."

(from http://ballastexistenz.autistics.org/?p=218)

If you've already covered this possibility, feel free to honestly, gracefully roll your eyes.

Shannon

Ack, the URLs above got tweaked; you'll need to either remove the punctuation at their ends or use these clean links:

Jennyalice:
http://jennyalice.blogspot.com/2009/07/notes-about-jake.html

Amanda:
http://ballastexistenz.autistics.org/?p=218

Kristina Chew

@Shannon, migraines and headaches have been brought up but not fully explore---_thank you_--- the first time we saw Charlie hit his head on the floor was in St. Paul when he was around 2. We walked into an Office Max and he was on his hands and knees---the fluorescent lights? It didn't happen again for a long time.

No eye rolling ever about anything you write! Always love reading about Leo's adventures, and his sisters'.

@Judy T, what you say about the helmet and it leading Charlie to bang his head harder, and this making it even more difficult to get rid of the helmet---this is just what I think.

I do at times wonder what my (college) students' parents say about their kids' "behaviors" (I know some things the Dean of Students has said.)

@Evan, more REM + Charlie to come. I'm downloading some more songs now!

Ruth/STL

My migraines are very related to hormone levels. They were worst in puberty and became more managable with time. Some foods made them worse, caffeine takes the edge off. Any pulsing light will trigger them.

My daughter is PDD-NOS. She is having fewer outbursts, except for premenstral syndrome. She is also very tall, and looks much older than 13.

Jill

Having taught adolescents with autism and spent weekends taking care of my students at the school to give my students' parents a well-deserved rest, I've had experience with head banging and other SIBs.
I noticed that the kids who head banged were, without exception, the kids who were described as having moderate to severe autism. They generally had very little language, either verbal or using sign language. The verbal kids, even the ones who could be quite a handful, behavior-wise, never head banged.
I surmised that head banging was a form of communication to express frustration and anger. The kids who head banged never did so because they were happy.
It also seemed to be, like much else for my students, compulsive. The more distress that was exhibited over the head banging the more frequently the head banging occurred.
For a group who in early years were said to be almost oblivious to the reactions and emotions of others my autistic students had a tremendous knack for gaging a room's emotional weather and responding in kind. That's not to say you should ignore it and it will go away, but I think you're spot on when you talk about deliberately cultivating a peaceful easy feeling around Charlie.
I know from experience the feeling of walking on eggshells around a large, emotionally volatile teenager. I'm sure it must be rough for you not being able to completely relax in your own home or to worry about inviting friends over because they might bring a baby (who might cry) or they might talk too loud and annoy Charlie.
But it's obvious from your posts how much you love Charlie and how proud you are of him. I used to really enjoy being with my students. One of the best things about them was that they were genuine; they didn't feel the need to act cool or worldly like neurotypical kids their age do. They didn't feel embarrassed to hold hands when they crossed the street or to show their enthusiasm for something that they liked a lot. They were, almost invariably, kind to each other, and kindness is a rare and precious quality.
So yes, I get it why you're not moaning and wringing your hangs about living in an "autism nightmare."
I hope you keep on blogging honestly about your life with Charlie. I can't wait to read your book.

Emily

That migraine suggestion sounds plausible. They come on with triggers, they're so awful...as you likely know...and the sensory overload with migraines can really truly make even a non-autistic want to bang their heads, except for the pain. It's possible to have the aura/overload without the head pain, too. Interesting idea.

I have an idea--only a vague one, of course--of what those paroxysms of SIB must be like, and it sounds tough. But what sounds harder to me is the early waking, the lack of surety that you're going to have a decent night's sleep. I know nobody likes to be called a "hero" or anything, but I do admire your ability to just roll with those wee-hour awakenings. You seem to have a great attitude about it. I think it would wear me down to nothing but a cranky nub after awhile. I hope that you have some respite or tradeoffs so that you do get your rest. Even a dynamo needs her sleep. :-)

Christine

Kristina, I have such great respect for the three of you!! And, well, your blog has been important to me. Thanks for writing -- even about the difficult stuff -- and despite comments you can live without!

Leila

What a great post. This is what I call a balanced, honest and intelligent view of living with an autistic child.

The head banging is always puzzling because it can be a response to different feelings and situations. It could be anger or even self-stimulation. My son doesn't do head-banging, but a few times after bumping his head accidentally (on a wall, or my head, for instance) he went back and did it again on purpose, as if he wanted to have that sensory experience again.

gretchen

I was thinking about some of this today- the good and bad in our life with autism and somehow feeling disloyal to remember too much of the bad. That's not all there is to Henry or Charlie, or any child. We can't deny the bad, but don't need to dwell on it either.

Alice

I've always liked that I can count on your blog for a balance of the good and the bad. It is similar to how I perceive our family life--so many wonderful, sweet moments with the boys, and at the same time, the struggles with early, early waking, ongoing toileting issues and trying to keep the boys from mouthing or eating leaves, sticks, mulch, etc. To an outsider, it might sound like a hard life, but it really has so much joy.

Eithne

I'm a longtime reader and I don't think I've commented before. I really admire your grace, dignity and honesty in blogging about Charlie. I've learned a lot about have a good perspective from you. Thanks, Eithne

Louise

One thing that makes this title so perfect is that the REM video for this song (http://www.youtube.com/watch?v=Bmxyj6iInMc) features boy just Charlie's age - on the cusp of puberty. He's dancing to the music only he can here, throwing stuff around, just loving being alive. Of course, he's also got a close relationship with a dog, which Charlie doesn't enjoy at this time.

But the song becomes a metaphor for adolescence very baldly when filmed this way - and thus totally apropos of what your TTT is going through.
Thanks for reminding us of the band's poetic artistry.

Sane Parent

Vitamin C stopped my son from banging his head six years ago. He has never banged his head since.

Michelle

Sane Parent: Go away. Did you not read the blog post?

I fully trust that Kristina and Jim are handling this well, as they do all things related to Charlie. They are excellent parents.

Bonnie Sayers (autismfamily)

Matt was headbanging at 18 months old in his crib, before either his or Nick's autism dx.

Matt has not done this for a long time, but we have those holes in the walls from his hands. He will not tolerate hand lotion and the palms of his hands are blistered.

I agree with the info on migraines, never had one myself, but an ex boy friends Mom and sister did, could not talk to them and the apt was always dark when they had them.

I am not looking forward to a three day weekend with rain in our forecast.

Jennifer

It's funny that you write about this just now. We are currently in the transition process for one of my students (who will be at middle school next year) -- and no one wants to talk about the average 30.5 hours per week that he's a fun, gregarious, funny, loving, compassionate, silly young man whose passions is life are Spongebob and his classmates' birthdays. Their only concern is the 15 to 30 minutes per week that he is less able to control his impulses -- roughly 2% of his week.

It makes me sad for him, and even sadder for his parents, who are not being treated exceptionally well by the rest of his IEP team. And, although I have told his mom repeatedly that I adore the boy, 2% and all, and that I'd take him for 3 more years if I could, my voice is being drowned out. :-(

On a happier note, I'm so glad that the use of the helmet is being faded out, and that things seem to be going well so far at his new school. Congrats to Charlie. :-)

Ali

Migraines are a great suggestion to explore. I get them both with and without headache, and the sort without are just bizzare. If I had less language, less ability to search out what was happening to me, they would be terrifying--and even as an adult on the mild end of the spectrum with pretty fantastic verbal skills, they still do sometimes make me want to SI (biting is my variant of choice). I have a migraine 4-5 days a week right now and am trying to get them controlled, but until then they make me lash out at others and myself. My condolences to Charlie if this turns out to be what he's having!

My condolences to you, Kristina, for having such persistent trolls who insist you are "allowing" behaviours.

Samantha

Re migraines, I heard this story on NPR recently:

http://www.npr.org/templates/story/story.php?storyId=122406376
"A study of blind people has revealed how bright light can intensify the pain of a migraine headache.

The study, published in Nature Neuroscience, found a pathway between light-sensitive cells in the retina and an area in the brain that's involved in migraine pain. The retinal cells don't contribute to vision, so they are still functioning in the eyes of many blind people whose other retinal cells no longer work.

The finding could help scientists explain why some migraine sufferers are also sensitive to certain smells and sounds..."

Kristina Chew

@Samantha, _thank you_ for noting that study! Harsh, direct electric light has not been Charlie's friend, more often than not.

mamacate

"fading the helmet"

Music to my ears! Hooray!

Thank you for being real. I've learned so much from you, and when I feel like we're the only family with severe behavior, I can remember that there's someone else who talks about it, and we're not alone.

Kristina Chew

@mamacate,
I don't know that I'll ever figure the 'best' or 'right' way to write about severe behavior but feeling that we're not alone -- that makes the hugest difference. Always grateful to hear from you!

jen

Amazing story adn very true!!!I just finished reading about a boy who was cured from autism through Shaman's and Horses in mongolia. Please read Horse Boy. Visit the webpage www.horseboymovie.com His dad has started a foundation in texas also that provides this treatment.

Kristina Chew

@Jen,
Thank you very much! I've read and discussed The Horse Boy here:

http://healthcare.change.org/blog/view/recovery_from_autism_fantasy_and_reality

http://healthcare.change.org/blog/view/travel_to_foreign_lands_and_places

http://healthcare.change.org/blog/view/the_horse_father

Mike

We all deal with stress and fear in different ways. Sometimes the ways we deal with it can healthy or not so healthy.

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