Monthly Archives: July 2012

Panic! Terror! Meltdown!

My approach in this blog so far has been to write about a problem we’ve had with one of our children, and then explain the strategies that we used to solve it.  (And also list the strategies that we tried that didn’t work!)  Today will be the first time I write about an issue SB is currently having.  We haven’t solved this one yet, so I’m warning you in advance that this post is going to end with “to be continued…”

SB has always had a short fuse.  If a toy isn’t working in some way because a part has come loose, or because it needs a new battery, he loses his temper almost immediately.  He has been prone to hit things, throw things, scream, and cry after discovering that something isn’t working right.  But his behavior is always the worst when he tries to watch us fix it.  Only seconds after one of us takes the toy from him and says, “Let me see if I can fix that…” the tantrum is in full force.  It always seems so completely irrational to us, because if he would just wait 1 or 2 minutes, his toy would probably be fixed.  But it happens every time.  My husband and I learned very early on that if a toy is broken or needs a new battery, the best course of action is to say, “This is broken.  I can’t fix it right now.  I will fix it later.” Then we put the toy aside and fix it or replace its battery after he has gone to bed.  He seems to accept this outcome much more willingly than waiting 1 minute to watch you put in a new battery.  The same is true for a missing piece to a toy.  If a part of a toy is missing, the WRONG thing to say is, “I’ll help you look for it.”  After we look one place and don’t find it, the panic starts and the meltdown quickly follows.  If you are a parent, I’m sure you know that when you look under the bed, between the sofa cushions, and behind the shelves, you will always find little toy parts.  But my husband and I have learned to save our searching for when SB is asleep or at school to prevent meltdowns.

For some unknown reason, this quick-to-panic behavior has escalated in the last 6 months to a point where we can’t seem to go anywhere or do anything as a family without an outburst, or several.  The meltdowns have become daily, sometimes several times a day.  Here is a list of just some of the things that will push SB into a fit of hysteria:

–          Broken toy, or toy that needs a new battery

–          Lost piece to a toy or puzzle

–          DVD player not playing movie immediately (having to sit through commercials, previews, or slow menus, or having to sit through when someone, God forbid, pushed the wrong option on the DVD menu)

–          Anything not working properly the first time you try (for example, when the TV remote needed a new battery and did not respond the first time I tried to used it, or any board game that doesn’t work properly the first time)

–          Closed-captioning turned on when a movie begins (sometimes my husband turns this on when he watches a movie while eating crunchy chips!)

–          His younger brother attempting to buckle his own seat belt (at age 5, he is still getting the hang of doing it all by himself, and it takes him several tries)

–          His younger brother not finishing his dinner fast enough

–          Watching me put on a bracelet, and I don’t get it fastened the first time

–          Someone not selecting the correct options on the first try when playing Mario Kart, or any other favorite game, on the Wii

–          The game Operation (anytime someone touches the metal sides with the tweezers and it makes a buzzing sound)

–          Taking more than one pass to get into a parking space

–          Making a wrong turn or missing a turn and having to turn around

–          Sitting at a red light that has lasted too long

–          Sitting in traffic that is moving too slowly

 

If you remember, we live in a suburb of Washington, D.C.  Gee, do you think we ever get stuck in traffic while driving in the DC area?  Um, YES!!!!!  I’ll give you here one example of a recent traffic meltdown that was pretty extreme.  In June, we were invited to a friend’s house for an “End-of-School-Year” gathering.  I agreed to bring the boys and meet my husband there, since the party was at a house near the school where he works in Fairfax, Virginia.  The trip should have taken no more than 30 minutes, but we were traveling on a Friday afternoon, and the traffic was terrible.  We got stuck in a long line of cars at a traffic light at an intersection, and were crawling along in stop-and-go traffic, never getting to use the accelerator.  SB just couldn’t handle it.  Every time I put my foot on the break, he screamed!  And boy, that kid is LOUD!  He screamed, he cried, he grabbed anything he could get his hands on and threw it, or used it to beat on the window with all of his might, and he also kicked the seat in front of him (my seat) repeatedly.  He shouted things like, “We’re NEVER going to get there!  The light is NEVER going to turn green!  We’re gonna be late!  NO NO NO NO!!!!”  At first I tried to reason with him.  “Of course the light will turn green.  It just takes 3 minutes.”  Or “Yes, we will get there.  We’re not late.  There is not a time that we have to be there.”  But it was like talking to a brick wall.  He was completely irrational.  He was also in a physical state of panic, complete with panting, sweating, and I’m certain the heart rate of a small rodent.  Then I tried the reward angle.  I turned off the CD we were listening to and said, “If you show me that you can be calm and stop screaming, I will turn the music back on.”  Strategies like this often work well with him, but he had already worked himself into such a frenzy that there was no reward I could offer that would stop this runaway train.  I considered pulling over and getting out somewhere until he calmed down, but we had been stuck in traffic for more than an hour, I just wanted to GET THERE, and prolonging this already painful trip seemed like worse torture to me than waterboarding.  In the middle of all of this, AB began to cry and complain that his tummy hurt.  He may have actually had a stomach ache, or he may have just been tired of his brother getting all of my attention.  Who knows?  At some point, my frayed nerves finally snapped.  It was not my best parenting moment, but I did the only thing left I could think to do.  I turned up the radio REALLY loud so that I couldn’t hear the screaming anymore.   Seventy-five minutes after we had left our house, we arrived at the party.  SB had been screaming for more than 60 of those minutes.  I stepped out of the car, leaving my children inside.  (This caused the screaming to escalate, of course.)  Knowing that my husband had already arrived at the party, I used my cell phone to call him on his cell phone.  I said, “Come out here and get your children before I hurt them.”  And he did.  All I could say to him in that moment was, “I need to be away from them right now,” and I took off down the street on foot.  I had never been to this neighborhood before and had no idea where I was going, but I knew that I needed to calm down myself, and walking seemed like a good idea.  Before long I found a park, lay down on a bench, and closed my eyes.  I’d probably still be there resting on that bench, but eventually I had to go to the bathroom.  So I walked back to the house, and found my children inside, playing happily with the toys that belonged to that family’s son.   The meltdowns are huge, but the recovery time is, thankfully, pretty short.

Until six or so months ago, my husband and I were able to prevent most of SB’s meltdowns by simply planning ahead.  As I mentioned earlier, we knew to never fix a toy or search for a missing piece to a toy while SB was watching.  When preparing to watch a movie, we did our best to set up the DVD player ahead of time when the boys were playing in another room, get through all the menus and commercials, start the movie, press pause, and THEN tell the kids it was time to come and watch.  We usually tell babysitters to do this with DVDs and also with the Wii, or we simply suggest that the sitter avoid those activities altogether.  I am a pretty organized person, and I like to plan everything in my day.  SB likes this, too.  (Maybe there’s a little bit of Spectrum in me as well!)  So it isn’t hard for me to plan out his day, letting him know what is going to happen at what time, and what he should expect.  (For more on this, see “Using rigidity to my advantage.”)  But as I’m sure you know, life doesn’t always go the way you expect.  Things can happen that are out of anyone’s control, and can derail the best laid plans.  And because I have tried my best to make his day go the way he expects, I now realize that I have actually helped to create this monster.  At this point, the meltdowns have become more and more frequent, and the list of things that cause the meltdowns is growing longer each day.

My parenting focus needs to shift.  Preventing meltdowns is no longer my priority.  The most important thing that I need to do right now is to teach SB the skills to be flexible and stay calm when things don’t go the way he expected or take longer than he expected. 

The last two things on the above list, traffic and red lights, have been the most frustrating for my husband and me, and are the main reasons that we decided to get our ABA Therapist involved in this problem.  We described his behavior to her, and right away we started to discuss a reward system.  For example, “If you can get calm and stay calm during a traffic jam, you can play with this preferred toy.”  But then she decided she should see the behavior first hand before coming up with a strategy.  So one recent summer morning, our incredibly dedicated therapist got into the car with Charlie, SB, and AB, and they went out in search of a traffic jam.  They didn’t find one.  (I find this kind of annoying and pretty ironic.  I come across traffic jams in northern Virginia all of the time, and I NEVER seek them out on purpose!)  So Charlie decided to pull into a parking lot and pretended to have trouble parking the car, taking at least 10 passes at a parking spot.  That did the trick!  SB showed off a good, solid meltdown for our therapist there in the car, very similar to the one he had on the way to the party back in June.  (AB just sat next to SB in the back seat the entire time, hugging his stuffed Cookie Monster and looking as cool as a cucumber.)  After witnessing the meltdown, our therapist concluded that a reward system is not going to work to solve this problem when his panic is so severe.  He’s not really misbehaving, he’s truly, physically terrified that the light is never going to turn green, we’ll never get in the parking space, the movie will never start, etc.  (I believe this is also why we have so much trauma with haircuts, doctor visits, and dentist visits.  It’s not simply bad behavior – it’s sheer terror.  But I digress.)

So our therapist’s new plan is to frequently expose him to these situations that make him panic, and teach him the coping skills that he needs to deal with them.  She will start in a very systematic way in his therapy sessions, and hopefully he will learn to apply these coping skills to his everyday life.  It almost seems cruel to artificially create these scenarios that we know are going to cause him irrational stress.  But I understand that it’s for his own good to learn how to cope.  I’ll describe the details of the plan in a later post, and give updates on how it’s working out.  But for now:

To be continued…

Rock of Ages

SB is a very stimmy little guy.  He has been doing strange and repetitive things almost his entire life.  To be “stimmy” means to engage in a lot of stereotypically autistic self-stimulatory behaviors.  For a more detailed definition of what I mean by “stimmy,” check out the fifth paragraph in this post: “I’m not an ABA Therapist…but I play one on TV.”  As soon as we feel like we’ve finally stopped one stim, SB quickly replaces it with something new, yet equally repetitive and weird.  He’s very creative that way!  But the hardest stim of all to stop has been the rocking.

It started when SB was around 9 months old and was first learning to crawl.  He would get up on all fours and rock back and forth, as if trying to get up the nerve to actually move forward.  This is a fairly normal behavior in babies learning to crawl.  But most babies eventually learn how to crawl and leave the rocking behavior behind.  Not SB.  He did learn to crawl, and he actually got really fast at it!  But he must have decided that he liked the feeling of rocking back and forth, because he started to do it all of the time.  He mostly did it in his crib when I put him down for a nap.  At 12 months old, he did it occasionally.  By 15 months, he did it every single time I put him down to sleep, and every single time he woke up.  The duration of the rocking also increased.  At first it was 5-10 minutes at a time, which didn’t seem all that weird.  But soon, that increased to at least 30 minutes before he fell asleep and also after he woke up.  By the time he was 18 months old, sometimes he would rock back and forth in his bed for an entire hour at nap time, never actually falling asleep.  He would also do it for 30-60 minutes each night before falling asleep, up to 30 minutes whenever he woke in the night before falling back to sleep, and as soon as he woke up each morning until my husband or I went to get him.  At first we thought he did it to soothe himself to sleep, but there became a point where I was concerned that the behavior was actually getting in the way of his sleep.  He rarely cried out for us in his crib, he just rocked and rocked and rocked.

Since he didn’t have a diagnosis yet, autism was the furthest thing from my mind.  But I did think it was pretty weird.  And it was noisy, too.  His little body shook the whole crib with his repetitive motions, making it sound like there was a printing press working on the second floor of our house.  His bedroom is right over the dining room, and every time he rocked, the chandelier in the dining room rattled.  With the baby monitor on, the noise was impossible to sleep through.

My husband actually took video of SB doing this rocking motion when he was about 18 months old.  Here is a short clip:

I had absolutely no idea that we would be STILL be dealing with this strange behavior when SB was 7 years old!  But I think we’ve FINALLY licked it.  (I’m knocking on some wood right now, just in case.)  The following is a long laundry list of the weird and wacky things that we unsuccessfully tried to stop the rocking behavior.

His first therapist (the Infant Educator sent by the county) told me that he had “sensory issues,” and that he was rocking because he was “seeking proprioceptive input.”    Proprioceptive input describes the body’s ability to sense the movement and position of muscles without visual guides. It is essential for any activity requiring hand-eye coordination.  (Definition from http://medical-dictionary.thefreedictionary.com/proprioceptive.)

She suggested that we buy a vibrating stuffed animal for SB to play with in his crib.  Her theory was that if he would hold and squeeze this toy, the vibrating would satisfy his need for proprioceptive input, and therefore he would stop rocking.  So I bought a stuffed duck that vibrated when it was squeezed.  We have long since gotten rid of it, and I couldn’t find a picture of that toy on the internet anywhere, so here is a picture of a stuffed vibrating turtle that is very similar:

I placed the duck in SB’s crib and showed him how to squeeze it to make it vibrate.  He completely ignored it and continued to rock.  I even picked him up and placed him directly on top of it, forcing him to feel its vibrations.  He didn’t object to the feeling, but as soon as I left the room, he rolled off of the duck and went back to rocking.  That duck turned out to be a big waste of money, but nearly as much money as we wasted later on.  (Keep reading!)

Next, my husband and I tried out a few uneducated theories of our own.  I’m sure you can imagine how well THAT went!  We thought that maybe he enjoyed how much the crib moved with him when he rocked, so we started putting him to sleep in our portable pack-and-play to see if that made a difference.  Not only did he continue to rock on all fours, but he also created other interesting ways to rock in this bed as well, which was lighter and easier to move around.  He would stand up, pull violently on the side, and rock the whole thing back and forth so hard that it moved across the room.  He would also sit with his back against the netting on the side and rock at the waist, hitting his head as hard as he could against the netting.  This didn’t hurt him, but it certainly looked strange.  Since the pack-and-play seemed to be making our issue worse and weirder, we put him back into his crib unless we were traveling and absolutely had to use the portable crib.  I remember spending one Christmas holiday at my parents’ house where we had to push the pack-and-play against the wall, pad it with pillows and blankets so he didn’t damage the wall, and then place large, heavy bags of rock salt that my Dad found in the basement around the base of the pack-and-play so that he couldn’t move it around the room as he rocked it.

Another bad theory my husband and I had is that if we just taught him that he COULD fall asleep without rocking, maybe he would realize that he didn’t need to.  So we decided to take turns staying with him in his room until he fell asleep, placing our hands on his back and saying, “no rocking” every time he started rocking.  We usually had to remind him dozens of times each night, and sometimes this took an hour or more.  I took many unintended evening naps on his bedroom floor, waiting for him to finally fall asleep.  Although he would eventually fall asleep without rocking, this had absolutely no effect on how much he rocked when he woke up, whether in the middle of the night or in the morning.  We eventually realized after several months that this was fruitless, and gave up.

Our first ABA Therapist believed that SB was craving “vestibular input” (NOT proprioceptive.) The vestibular system monitors awareness of body balance and movement.  The vestibular senses (the sensations of body rotation and of gravitation and movement) arise in the inner ear. (Definition from http://www.cliffsnotes.com/study_guide/The-Vestibular-Senses.topicArticleId-25438,articleId-25327.html.)

The first thing this therapist wanted us to do was take data.  This guy LOVED data.  He wanted me to keep a log of every time the behavior started, when it ended, and what happened right before it started.  I reminded him that this rocking behavior often happened in the middle of the night, sometimes for short 1-minute bursts before SB would go back to sleep, but sometimes for periods of 30 minutes or more.  I tried to explain how difficult and irrational taking data would be while I was trying to…umm…you know…SLEEP!!!!!  But he insisted that he couldn’t help us without accurate data.  So I tried.

Let me give you the setting here.  I have a 2-year-old who was recently diagnosed with autism.  I also have a newborn.  And I have a job.  I am stressed, worried, and frankly, somewhat depressed.  My mental state is so frayed that I am unable to sleep at night, so my doctor prescribes Ambien.  Do you know powerful Ambien is?  Well, for starters, I apparently had some pretty good conversations with my husband that I can’t remember at all.  And some of these conversations ended abruptly as I fell asleep mid-word.  Ambien is pretty potent stuff.  Also, I was having trouble focusing on reading anything, so I attempted to relax myself before falling asleep by doing Sudoku puzzles while laying in bed.  When I did fall asleep, I placed my Sudoku book on my nightstand, next to my blank paper I was going to use to take data.  When SB would decide to start rocking at 3-something AM, I would hear it on the baby monitor, and then look at my clock and attempt to write down what time it started and ended.  While drugged.  And usually on the Sudoku book.  So in the morning there would be all sorts of extra numbers and unreadable scribbles ALL over my Sudoku.  During this pretty awful period of my life, blogging about my experiences to the world never even entered my mind.  But now, five years later, I SO wish I still had one of those data-covered Sudoku puzzles so I could share a photo of it with you.  It was just so completely ridiculous!

The therapist’s theory was that if we created the rocking motion for SB, he wouldn’t need to do it himself, so we tried to come up with ways for us to rock the crib.  The first suggestion was for us to purchase a device called a Lullabub.  You can check it out here.  I see that it now goes for $249.  For some reason, five years ago it cost me $400, and can only be purchased from this one company in Australia.  It is basically a set of 4 springs that you place under the four legs of your crib.  It was made for newborns that don’t sleep well.  The springs are supposed to gently lull the baby to sleep with a mild, bouncing motion.  This works because newborns don’t weigh very much.  This was a BAD idea for a 2-year-old boy, because he weighed, well, a LOT more than a newborn.  I only used the Lullabub one night, and it was hell.  To SB, it was like I put him in a carnival ride!  He rocked and rocked and rocked all night long, and the crib moved twice as much as he was used to.  He was positively giddy!  Clearly, this was not going to STOP his rocking behavior.  I wrote to the company and asked if I could return the device and get my money back.  The response that I got was a big, fat “NO!”  I still have it.  I’ve taken it to dozens of consignment sales and put it on Craig’s List a number of times, but I’ve had no luck reselling it.

Our therapist didn’t abandon his original idea, however, and so we continued to dream up ways to rock the crib for SB.  After discussing it with my father-in-law, who is an engineer and a woodworker, we came up with a design.  He basically put the crib (which was already on wheels) on wooden tracks, and used a motor to move it back and forth along the tracks.  Like I said earlier, putting all of this stuff on the internet in a blog never even entered my mind at the time, so I’m thankful that my father-in-law took pictures of his work that I can post here:

 

 

 

We would put SB down for bed and turn on the crib rocker.  I think we would leave it on for about 30 minutes, and then turn it off.  And again, SB got a carnival ride.  It was like double the fun!  He could rock on all fours, and his crib also rocked with him.  He was having the time of his life!  He rocked while it was on, and kept rocking after we turned it off.  And now, it was so loud that even the neighbors thought we had a printing press in our house!  To continue taking data when he was rocking, I had to sit outside his bedroom door every day during nap time and every evening at bedtime, and peek through the crack in the door.  Sometimes he would just lay there and enjoy the ride, and during those moments we thought that maybe it was working.  But in the end, after about two months of using the crib rocker, we really didn’t see any progress in ending this behavior.

When SB was almost 3, we decided that he was getting too old for a crib, anyway, so we bought him a toddler bed.  I thought that maybe, just maybe, moving to a “Big-Boy Bed” might be enough to break his old habits.  Wishful thinking.

Then something magical happened.  SB FINALLY started to show an interest in books.  To read all about that, check out this post:  Dum ditty dum ditty dum dum dum.  I would leave stacks of books by his bed, and when I left his room, he would flip through the pages and look at the pictures of his favorite books.  And after a few weeks, his time spent rocking gradually diminished as his time spent looking at books gradually increased.  We were THRILLED!  Problem solved!  We are genius parents!  We patted ourselves on the back and moved on to the next behaviors that needed to be addressed.  And we didn’t hear rocking again for AN ENTIRE YEAR!!!!

And then, around age 5, the rocking came back.  And when it did, it came back with a VENGEANCE!  All of the sudden, he was doing it again.  A lot.  At night after we left him in his room, in the middle of the night, and in the morning when he would wake up.  We were so dismayed.  It was as though all of the sudden he remembered how much he used to love doing it.

Another theory we tried at this point (I honestly can’t remember if this one came from a therapist or if it was one of our hare-brained ideas) was that he needed a more socially-appropriate “replacement behavior” for the rocking in bed.  So every time we heard him rocking, no matter what hour of the day or night, my husband would go to his room, pick him up, and place him in a child-sized rocking chair in his bedroom.  Charlie would tell him, “If you want to rock, rock in the chair, not in your bed.”  Again, after 2 or so months of this, we realized there was no change in the behavior, so we quit.

For the next 2 YEARS we didn’t really try anything else new to try to stop it, because we were completely out of ideas.  Occasionally it would go on and on in the evening, and one of us would go to his room and tell him, “Stop rocking and go to sleep!”  He would stop for a moment, but would start back up again as soon as we shut the door.  Now that he was a little older and had more language, I tried to talk to him about it.  (This would have been completely impossible at age 2 or 3.)  I asked him why he did it, but he had no answer other than “I don’t know.”  I started to think that maybe he would always do this.  I thought about how it was something he only did in the privacy of his bedroom when he was alone, and maybe that was OK.  I was almost to the point of accepting it when we got a new ABA Therapist with some fresh ideas.

Her theory was that this behavior was part sensory and part attention-seeking.  He enjoyed doing it, but he also enjoyed the attention he received when we came to his room to tell him to stop.  She wanted to come up with some way to alert him to stop rocking without us having to go into his room.  The simple solution?  Walkie Talkies!  One Walkie Talkie was placed in SB’s bedroom high on a shelf where he couldn’t reach it.  Then we took the other Walkie Talkie and the baby monitor with us and left the room.  We told him that if he started to rock, the Walkie Talkie would beep at him until he stopped.  As soon as we heard the rocking start on the baby monitor, we would push the call button on the Walkie Talkie, which caused the one in SB’s room to beep.  Boy, he hated that!  The next morning he told me, “Mommy, I don’t like it when the Walkie Talkie beeps at me.”  I replied, “Well, then you should look at books until you fall asleep instead of rocking.”  “OK.  I’ll do that.” he said.  After two nights, we stopped hearing rocking altogether.  (I’m knocking on wood again.)

We haven’t heard rocking in over 3 months, and feel cautiously optimistic that it may have finally stopped for good.  Would the Walkie Talkie solution have worked when he was 2 or 3, and didn’t have enough language for us to explain what was happening?  I’m not sure.  We have worked on many problem behaviors since SB was diagnosed with autism, but this one was by far the weirdest, most stubborn, and most difficult to eliminate.  It took more than 5 years, and brought out some incredibly creative ideas.  Or completely crazy ideas, depending on your point of view.  There is a very fine line between “creative” and “crazy.”  As parents of children with autism, we seem to walk that line every day.