Monthly Archives: January 2013

Stopping the Panic! Terror! Meltdowns!

 

Today’s post is a follow-up to this post from last July: Panic!  Terror!  Meltdown!  If you haven’t already read that, you should check it out now before reading this one.  I’ll wait until you come back.

 

All done?  You didn’t read it, did you?  That’s OK.  I never bother to click on links in blog posts, either.  To sum it up, last July I wrote a post describing SB’s intensely high anxiety level whenever anything didn’t go his way.  If we got stuck in traffic, sat at a long traffic light, his board game didn’t work exactly right, the Wii remote didn’t work the first time, his brother took longer than 5 seconds to fasten his seatbelt, etc., then he became so intensely upset that he would irrationally freak out by screaming, yelling, and hitting or throwing things, and could not pull himself back together.  The panic had become so frequent that we couldn’t get through a day without at least several of these irrational freak outs.

So we did what we always do when we have a problem with either child: we turned to our trusted ABA therapist, who usually seems to have a logical answer or approach that we didn’t consider.  (We have repeatedly asked her to move in with us, but for some reason she always declines!)  And she came up with a plan that involved systematically exposing SB to situations that she knew would upset him, and then teaching him skills to cope with these situations that were out of his control.  Because let’s face it, no matter who you are, you are going to come across situations in life that are out of your control and do not go the way you planned!  What follows is an outline of her treatment plan for him.  It may be a little technical to read, but I hope it gives you a good idea of what the therapist was doing with him to help him get over his anxiety.  I summarize each phase in my own words, if that helps with the technical-speak.

Target Behavior:  Anxiety response to situations out of his control.

Definition:  Including but not limited to heavy breathing, crying, whining, screaming, verbal refusal, elopement, and/or stimming.

Relaxation strategies:  Taking three deep breaths, counting to ten, and/or saying, “I can stay calm.  I will be OK.”

Appropriate escape request:  Verbally requesting “Can I be done?” or “Can I be finished?” with calm body posture, tone, and volume appropriate for the environment, in the absence of the Target Behavior.

Specific aversive scenarios/objects targeted: The game Operation, playing a game that is not working correctly, playing the Wii with either no batteries in remote, game not working, or playing partner having trouble playing the game, parking, traffic, traffic lights.

Successful Trial:  Using the relaxation strategies and appropriate escape request when given a verbal cue from the clinician within 3 seconds of prompt in the absence of a maladaptive behavior.

Graduated Desensitization Phases:

Phase 1:

1. Client will participate in a preferred activity for no specified duration while across the room from an aversive target or scenario.  Client can have immediate escape from aversive target with an appropriate escape request.

2. Client can have a 3-minute high preference activity break between successful trials

3. Client can have a 5-minute escape break (but not the high preference activity) between unsuccessful trials.

4. 10 consecutive successful trials to move onto next phase.

Mindy’s summary of Phase 1 – SB just has to be in the same room while something upsetting is going on, such as the therapist having trouble getting the Wii to work (because she took the batteries out of the remote.)  He is not playing the Wii at this phase.  He is playing something else that he likes on the other side of the room.  If he asks her to stop appropriately without freaking out, she stops, and he gets a highly preferred reward.  If he gets upset and does NOT ask her appropriately, he still gets a break, but he does not get the highly preferred reward.  There is no specified amount of time that he has to tolerate the upsetting activity in this phase.  When he can do this 10 times in a row, he moves to Phase 2.

Phase 2:

Client will participate in a preferred activity at half the distance from the aversive target scenario/object.  Immediate escape from aversive target with an appropriate request.

Mindy’s summary of Phase 2 – Phase 2 is the same as Phase 1, except that SB has to be physically closer to the upsetting thing.

Phase 3:

Client will participate in a preferred activity next to the aversive target scenario/object.  Immediate escape from aversive target with an appropriate request.

Mindy’s summary of Phase 3 – Phase 3 is the same as Phases 1 and 2, except that SB has to be sitting directly next to the upsetting thing.

Phase 4:

Client will participate in each aversive target scenario/object.  Immediate escape from aversive target with an appropriate request.

Mindy’s summary of Phase 4 – SB now has to participate with the therapist in the upsetting game or activity, such as playing Wii with her while she purposely has difficulty choosing the right menu or game options and has to keep going back and redoing the game setup.  But still, she will stop immediately and let him have a highly preferred reward if he asks her to stop calmly and appropriately.

Phase 5:

Client will participate in each aversive target scenario/object.  Escape from aversive target with an appropriate request after tolerating the aversive target for 15 seconds.

Mindy’s summary of Phase 5 – SB has to participate in the upsetting activity, has to calmly and appropriately request to stop, AND the therapist will continue the aversive activity for 15 seconds after his request before she stops and gives him a reward.

Phase 6:

Client will participate in each aversive target scenario/object.  Escape from aversive target with an appropriate request after tolerating the aversive target for 30 seconds.

Mindy’s summary of Phase 6 – Phase 6 is the same as Phase 5, except that SB has to wait 30 seconds before the therapist stops the activity.  He still has to ask to be done with the activity calmly and appropriately, and has to stay calm for the entire 30 seconds.  The last phases are the same as Phase 5, but the time that he has to wait before the therapist stops the aversive target gradually increases to 3 minutes.

Our therapist worked with SB on these goals 1-2 times per week for about 3 months.  The first clue we had that things were getting better was when we went to visit Santa Claus at West Springfield High School’s “Breakfast With Santa” event in December.   Hoping to get in with Santa before the crowds got big, we arrived as soon as the event began and went straight for the line to see Santa.  Unfortunately, everyone else seemed to have the same idea, and the line was pretty long.  We figured that it wasn’t going to get any better as the day went on, so we got in the line and hoped for the best.  We waited THIRTY MINUTES before we got to sit on Santa’s lap and pose for pictures, and SB made it!  Oh, he whined a bit, and we heard several choruses of “How many more minutes?” and “When are we gonna get there?”  He was fairly calm, though, and we felt that the whining was very age-appropriate for the first 20 minutes.  After waiting about 20 minutes, however, he started to stim with his fingers with fury.  He held his fingers close to his face and flipped them around furiously, faster even then normal.  Although I don’t love the stimming, and it was causing him to get weird looks from the little girl in front of us in line, I let him be, because I knew that he was getting frustrated and needed SOME way to cope.  Most importantly, there was no crying, no falling to the floor, no panic, and no lashing out or throwing things.  My husband pointed this out to me after our quick visit with Santa was over, and I happily realized that he was right.  Just 6 months ago there was NO WAY we could have waited in a line that long, in a strange and unusual setting, without some sort of panic.

On a side note, I realized that I’ve used the phrase “stimming with his fingers” in several posts lately, and I wonder if some of you know what I mean by that.  Both of my kids do this frequently.  AB learned it from SB, I’m sure.  I thought I would include a little video to show you what it looks like.

 

 

Later in December, we traveled to the Midwest to visit my family for the holidays.  We had a pretty complicated itinerary for our trip, which first involved flying to Chicago.  I was performing at a conference with the Air Force Band, so I had to fly earlier than the rest of my family.  When Charlie and the boys left for the airport on their travel day, he allowed plenty of time to get to the airport.  Or so he thought.  We do live in Washington, D.C., you know!  He got stuck behind an accident on the highway, and after 25 minutes, he finally broke through the traffic only to get stuck behind ANOTHER accident for 40 minutes more.  My poor husband grew more and more frustrated during the hour of painful stop-and-go traffic.  He wanted to shout, scream, and pound the steering wheel, but he restrained, because he didn’t want to model bad behavior for the kids.  How did SB handle this traffic nightmare?  Again, there was some whining and complaining about the traffic, but there was no panic and no behaviors that were irrational.  Part of the time, he sat there in the back seat, bopping around to his music.  Compare that story to the traffic story from the July blog post:  Panic!  Terror!  Meltdown!  (I’m not going to summarize it this time.  You’ll have to actually read it this time if you want to compare.)  SB was like a completely different person, able to stay calm and not freak out, even though he didn’t know how long the traffic would last.  (They made the plane, by the way.  BARELY!)

We didn’t use any strategies or methods to help SB with his panic issues other than the ABA plan above.  This success makes me want to stand on my roof and shout to the world about how great I think ABA is.  And yet, I still come across people, both in person and online, who do not have ABA for their autistic children because they don’t believe that it works.  I started to write more in this post about why I think ABA is a great therapy for children with autism, and it got so long I realized it was a completely separate post.  So more on that later, and hopefully soon!

 

Treatment plan by LEARN Behavior Consultation Services

www.learnbehaviorconsult.com

 

The One Time We Kept Beating a Dead Horse, and it Actually Learned to Swim

I love to swim, and grew up spending almost all of my childhood summer breaks at the local swimming pool every day.  (It was a small town.  There wasn’t much else to do.)  When I got older, my parents bought a boat and we spent many summer weekends water skiing on a tiny, man-made lake in northwestern Ohio.  I have been comfortable in the water for as long as I can remember.  I looked forward to swimming with my children when they were old enough, but of course, this didn’t go as I imagined.  Like pretty much all of parenting.

Soon after SB’s diagnosis, I learned about an excellent program our county offers in the local recreation centers.  It’s called Adapted Aquatics, and it is a swim class for kids with special needs.  There is one teacher for the class, but more importantly, there is a volunteer for each kid in the class.  Every child gets individual attention for the entire 30 minute class.  I enrolled SB at age 2 ½, and when we got to the pool on the first day, he was absolutely TERRIFIED!  He screamed and cried throughout every class for the entire 8 week session.  The volunteers were always kind and nurturing, and didn’t make him do anything except cling to their neck while they walked around in the water.  But he absolutely hated it.  A normal mom probably would have not made him go to all 8 classes after he behaved this way.  And a normal mom CERTAINLY would not have signed him up for another session.  But I’m not a normal mom.  I’m persistent, and cruel!  I really do have a couple of rational reasons for being this persistent and cruel.  The first one is that I feel it is really important for children to learn how to swim for their own safety.  What if a child grows up afraid of water, and then one day accidentally falls into a pool or lake and has no idea what to do?  The other reason is that one of the things we have learned about SB is that he ALWAYS needs to be pushed.  This child would do absolutely nothing with his day except sit in a corner and stim with his fingers if we didn’t push him.  Hard.  All the time.  So we always keep pushing.

When it was time for the second session of the Adapted Aquatics swimming class to start, neither my husband nor I was available to take SB to the first class.  I was on a tour with the Air Force Band and Charlie was judging All-District Band auditions, so my father-in-law got nominated to do it.  We warned him that SB would probably cry, and that it might be kind of distressing.  For some strange, magical reason, SB LOVED swim class that day!  I don’t know if it was the fact that his grandfather was there, or he had just finally become used to being in the pool, but he had a great time and was happy.  He certainly didn’t let go of the volunteer or get his head wet, but a happy mood while in the water was major progress.

SB continued on this way for four more years.  Every Saturday we went to swim class, and he always had a great time.  But after four years, I was starting to get disappointed in his lack of progress.  The class continued to be positive, and I was grateful for that, but I was kind of hoping that after all this time, he might be…you know…swimming!  But the experience hadn’t changed one bit.  He got in the pool with the volunteer willingly, but clung to her neck like a barnacle clings to a rock.  He was not willing to float, hold onto a kickboard or noodle, or get his head even remotely close to the surface of the water.  We finally realized that the volunteers were sweet and dedicated, but weren’t going to push him in the way he needed to be pushed to make any progress.  So we left Adapted Aquatics and decided to take private swimming lessons.

SB started private lessons at age 6, and they seemed to go pretty well.  He didn’t make tons of progress, but he was willing to go into the water, and the instructor got him to at least do a few different things.  She didn’t push him particularly hard, but she DID push him.  This was about the time that my husband and I realized that SB had taken most of our time, energy, and attention since his diagnosis 4 years earlier.  We had been so absorbed in getting him the right therapies, classes, and other activities that we had kind of neglected poor little AB, now age 4.  Why hadn’t we enrolled AB in some sort of swimming lesson as well?  We had no reasonable answer, so after about 6 months, AB joined his older brother in the private swimming lesson.   And we quickly realized that he was kind of in the same place as his brother: willing to get into the water, but unwilling to let go of the teacher in deep water or get his head wet.  I was really hoping that the private lesson would get them both swimming independently, but over a year later, we still hadn’t seen a lot of progress in that area.

During the summer of 2012, we enrolled both boys in the swim team at our local pool.  This swim team has a program called the “Minis,” where the teenage swim team members work with kids that are too young to actually compete on the swim team.  Our daycare provider recommended it, because her son had done it the summer before and had become a lot more comfortable in the water over the course of the summer.  Since the Minis met 5 days a week, we hoped that our guys might make more rapid progress then having a lesson once a week.  With our trip to Disney World coming soon, we also offered the guys “Disney Dollars” for putting their heads underwater.  The Disney Dollars were just slips of paper that they could acquire for a variety of good behaviors and then spend on souvenirs during our vacation.  And it did work – for AB.  By the end of the summer, AB was willingly putting his head underwater and showing no more fear.  He still had a long way to go to actually learn to use his arms and legs to swim, but the progress was significant.  SB, again, didn’t really make any progress.  He spent most of the practices walking around in chest-deep water and talking with the teenagers, who didn’t really seem to know what to do with him.  How could they?  We didn’t know, either.

When summer was over, we continued with the weekly private lessons.  And like most things with SB, the progress was so slow that we didn’t even notice it.  But it was there.  I went back to graduate school last fall, and Charlie took the boys to swimming lessons most of the time, giving me time to do school work.  But I took the kids to their lesson last Saturday for the first time in probably months, and I was AMAZED at what I saw.  With a foam noodle tied around their waists, both boys were floating and kicking all over the place in deep water.  Let me say that again: SB was FLOATING ALL BY HIMSELF!  As in, not touching another human being in water that was too deep for him to stand up.  I was so amazed and thrilled that I started taking pictures.  My husband confirmed that it has only been in the last 2 months or so that he has shown this much independence.  AB is very comfortable putting his head in the water, and SB is starting to do it a few times per lesson.  They still have a way to go before they are actually swimming independently, but both have made big breakthroughs, and I am so excited.

Swimming lessons are normally at the South Run Recreation Center near our house, but since there was a swim meet at South Run on Saturday, we had to go to the Audrey Moore Recreation Center instead, and my guys had never been to this pool before.  I realize that this change in location might upset many kids with autism, but thankfully, mine were more curious than upset.  I was asked many, many questions that I could not answer before we arrived, such as: What floor is the pool on?  (The first)  How deep is the deepest part of the pool?  (13 feet)  How many traffic lights will we go through to get there?  (18).   When we approached the front desk (which is on the second floor of the building), I saw a sign announcing that the elevator was out of service.  I pointed this out to SB right away, because I knew it would be distressing for him.  “What!?!?!” he exclaimed.  “We can’t use the elevator?!?!  Where is it?  I want to see it!  Oh no, I can’t believe the elevator is out of service!!!”   Since he needed to get changed for his lesson, I promised him that we would find the elevator after his lesson.  It was very important to him to find out where it was, what color it was (blue), and if it had one or two doors (one), even if we could not use it.  Learning all of this information about the elevator seemed to satisfy his curiosity and he made peace with the fact that we could not ride it.

The extra bonus to having a swim lesson at Audrey Moore is that this rec center just happens to have an outdoor skate park!  And even though it is January in Virginia, there were tons of teenagers skateboarding and biking up and down the ramps, over and over again.  Both AB and SB had a fabulous time watching.  I asked them if they wanted to come back sometime with their bikes, but they both said no.  It does look a little bit intimidating, but maybe when the weather is warmer I will pack their bikes in the van and take them anyway.  I guess I will forever be the cruel mommy who is always pushing, pushing, pushing!

 

sbnoodle1
Do you see that, people? There is SB, and although he is still wearing a noodle, he is NOT TOUCHING ANOTHER HUMAN BEING IN THE WATER!!!!!

 

 

abnoodle1
AB, floating with a noodle just after he put his face in the water.

 

 

abnoodle2
AB kicking around with noodle and foam dumbbell

 

 

snboodle2
SB with noodle and foam dumbbell. Again, not touching another human being. Did I mention that this is AWESOME?

 

 

lockerroom
Even if there were no such thing as sexual predators, I am certain that SB (who is almost 8) would not be able to enter the Men’s locker room, change his clothes, and come out to the pool all by himself without getting distracted. So I still take him in the Women’s locker room with me. (Shhhhhh!!!!!! Don’t tell anybody!)

 

 

skatepark
Watching the cool dudes at the Skate Park. There was much jumping up and down and hand flapping from SB. I wish that I could have caught him in the air mid-jump and mid-flap, but I’m not that good of a photographer.