This time last year, I was a crazy person. I didn't realize it, but I was.
I was at home full-time with my four-year-old autistic son and my one-year-old wanna-be Tazmanian Deviless, and I pre-planned every moment of each day in 15-minute intervals. I am not even exaggerating. I wish.
Three weeks into this road map to the nut house, I was actually half-praying to get sick, so that I would have an excuse to go to bed and not sing “5 Little Ducks” again. I was convinced that my children hated me and that my failures amused them.
Things definitely got better once I loosened the reigns a little bit and allowed everyone the occasional half-hour Dora break. But still, I looked on with envy at the parents happily packing their kids off to camp at the science museum or the children's theater or local parks department. Or even those parents that just let their kids spend all day in the back yard without worrying whether they were learning or not. No one had warned them about the dangers of "regression."
FYI, my parents never worried about regression over the summer either. In fact, I can't even remember much about my parents being THERE during the summer. I know they were; somehow we got fed, bathed and put to bed. But summer was spent riding my bike around the neighborhood, playing in backyard forts, digging holes in stuff and generally, avoiding adult intervention at all costs.
Anyway, it's not that "normal" camps wouldn't accept Billy. But in the case of most camps geared toward normally developing children, with staff trained to handle aforementioned normally developing children, I get the impression that they consider the day a success if no one calls 911. As long as everyone's smiling most of the time, job done.
And if I were them, I would feel the same way.
I wanted Billy to continue to learn, at his level, throughout the summer. I wanted him to have the chance to work on those areas we've identified as challenges – social skills, expressive language, emotional control, independent work time – but I also wanted him to enjoy himself. Really enjoy himself.
Rather than Camp Stims-A-Lot where he'd be allowed to wander around aimlessly, lost in his own world, so long as he wasn't hurting anyone, I wanted him to be challenged. At the same time, I wanted him to have the opportunity to engage in those activities in which he really excels.
I don't ask for much.
As it turns out, my extremely high expectations are not impossible to meet.
This year, for the first time, Billy's behavior therapy group, BMC Southeast, launched a special summer program, Camp Escape, for elementary- and middle-school-aged kids. During the first three-week session, their theme is “Planes, Trains, Automobiles and Carriages.” The second session will have a “Legends and Fairy Tales” theme, while the final session, running two weeks is all about “Games and Sports.”
The Camp Escape staff are ABA specialists, with the director, Dr. Dawn Bailey, BCBA-D, being a Billy specialist extraordinaire. So far this week, every day in which I've been there, there has been a 1:1 ratio of staff to kids, and they're committed to never having a greater than 1:3 ratio throughout the summer. Because of this strong staff ratio, each child's day can be tailor-made, to some degree, to fit their individual needs, interests and challenges.
Since Billy started working with the wonderful people at BMC about a year ago, he's made remarkable progress. I'm a firm believer that no single intervention has ever been enough for Billy – he has been blessed with a multi-faceted and committed team of speech, occupational, and behavior therapists – as well as wonderful teachers and aides – but the therapists at BMC have been a part of his school day, as well as his home life. Ms. Elyse, his private therapist, has come to church with us and helped us get a haircut. And every time she and/or Dr. Bailey has been involved in some challenge we've encountered along the spectrum, they offered up ideas and the situation has significantly improved.
A year ago, Billy wasn't potty-trained. His functional language was limited. He would eat about three things. He had a great deal of difficulty transitioning from one activity to another, and he rarely played with other children – or even seemed to care whether they were there or not.
On his second day of camp, he apparently approached a new friend, called him by name, and said, “Come play with me!” When the kid in question didn't immediately jump at the opportunity, Billy guided him over to his newly discovered wonder: Zhu Zhu Pets.
The campers' days have been full of music and dance, outside games, crafts, water play, developmental play – all with an eye toward encouraging social interaction, better communication and the kind of learning that happens when they don't even realize it. As Dr. Bailey said to me at the beginning of the summer, “I don't want this to be Camp Therapy.” And it's not.
That being said, at the end of every day, I get an in-depth one-on-one report from Dr. Bailey about Billy's day, the parts of it he enjoyed most, the moments during which he had challenges and how those challenges were approached/handled. A picture choice chart, for instance, has eliminated aimless wandering during free play time. His use of pronouns, I'm told, has been improving steadily. And today he had a full day that was essentially meltdown-free!
And yesterday, Billy won a trophy for his expertise at “Train, Train, Car” (“Duck, Duck, Goose”). I'm not even sure how one actually wins at “Duck, Duck, Goose,” but the award has joined his Bash and Dash trophy on the mantlepiece nonetheless.
But the greatest reward so far, without a doubt, has been the image of him greeting a new friend with excitement and actually asking him to come play with him. A year ago, I was not sure if that moment would ever come, and if I'd been able to choose one goal for the whole summer, that would have been it. So as far as I'm concerned, this camp has already been TOTALLY worth every penny.
Speaking of our pennies, Camp Escape is $300 per week for a full 8:30 – 3:30 day (after care can be arranged for $75/week.) Session 1 runs June 13 – July 1; Session 2 is July 11 – July 29 and the final session runs August 1 – August 12. They can also arrange half-days, if someone's schedule doesn't permit a full-day program.
The location is at Good Samaritan United Methodist Church and you can find out more at www.bmcsoutheast. There's still room for more campers, if you're in the Tallahassee area, and Billy and I would LOVE to have you join our beautiful little group!
But keep in mind that the competition for “Duck, Duck, Goose” is fierce.
Despite the title of this post, I'm not writing about a fear that Billy will run off to Vegas and marry a showgirl.
No, it's just the running that scares me -- and with good reason. The behavior therapist who's working with him at school says this running -- as far and as fast as possible at the drop of a hat -- is called "elopement."
Yes, I said "behavior therapist." As much as I am a proponent of Floortime therapy and the developmental approach, I do believe that behavior therapy is effective on behavior problems.
For those of you aren't familiar with the "civil war" going on in the autism world, there seem to be two camps, with parents either choosing sides or vascillating between the two, pitching their tents a little closer to one side or the other.
For a few years now, behavior therapy has been publicized as the only successful treatment for autism. That is hogwash (in that it is the ONLY successful approach, not that it has been successful, which is undisputed), but it is a position widely adopted by the media, in part because of the successful lobbying/press efforts by ABA therapists. They are organized, well-funded and they get things done. (Just as an aside, I would like to know what happened to turn the TV show "Parenthood" into a VERY successful Public Service Announcement about behavior therapy.)
Applied Behavioral Analysis "is a system of autism treatment based on behaviorist theories which, simply put, state that behaviors can be taught through a system of rewards and consequences," according to About.com. (I used their definition because it's simpler and easier to understand than that on the Association for Behavior Analysis International page.)
In the past, I have heard some occupational therapists and developmental therapy devotees describe ABA as "dog training" because of its emphasis on repetition and reward to alter surface behaviors. For instance, behavioral therapists might focus on getting the child to sit for longer periods in class or eliminating stimulating behavior like hand-flapping or spinning. To some degree, all parents naturally use behavioral principles to reinforce good behavior and eliminate negative behaviors.
That dog training image, though, is the image I had in my head less than a year ago when we wholeheartedly adopted Floortime, a strongly developmental approach, as our philosophy of therapy -- a philosophy and outlook we still consider our guiding principle.
Often seen as the opposite pole to the ABA approach, developmental-based therapies follow the child's lead, de-emphasize routine and repetition over following the child's "joy" and trying to create desire for communication. But to compare apples to apples, let me go back to About.com for their definition: "Developmental therapies are intended to directly addresses autism's core deficits. To achieve this goal, they recommend that therapists and parents work with the child's own interests or actions to slowly build engagement, interaction, communication, affection, and then specific skills such as logical reasoning, symbolic thinking and more."
Strengthening Billy's ability to communicate is our primary goal. Everything will get easier once he can successful describe what he wants, what he feels and what he needs. We have seen amazing gains on this front since we adopted a Floortime approach and enrolled him in occupational and speech therapy with professionals who also believe in a more developmental approach.
All that being said, it's hard to communicate with a child who's half a mile away from you and increasing the gap with every stride of his long legs.
Last week after occupational therapy, as we were going through our getting-into-the-car routine, he suddenly slipped past me and bolted. It happened in an instant and was seemingly unprovoked (I say "seemingly" because I don't know what provokes him sometimes; he might have been hot and wanted fresh air).
Within seconds, he was around the side of the therapy building and there I still stood, with Willow still in the stroller and Billy on the run. I was terrified, frozen, unprepared.
I pushed her as best I could as far and fast as I could until I could make eye contact with him. He had cornered a nearby nightclub and was standing on a rickety deck, a few feet from stairs that went down towards ... what I don't know. And he was grinning at me.
I screamed to him, begged him to him to come back. "Willow is scared," I said. "She's by herself (she was a few feet behind me) and she wants Billy to come back."
He seemed to consider for a few moments. It could have gone either way. But slowly, he shuffled back toward me, until he was within my grasp.
I admit it: I yelled him then. I yelled at him that he had scared me and he was never to run off. And of course, then he got upset and tried to pull away again. It just went from bad to worse until I was able to bundle everyone back in the car.
Then I cranked up the air conditioner and the Kindermusik CD on the stereo until I could barely hear the screaming in the backseat and lowered my head to the steering wheel and finally let myself start shaking.
He could have run directly into traffic, I told myself. He could have fallen off that deck. A hundred nightmare scenarios went through my head, none of which were productive. But I told myself one thing: I would not be unprepared for this particular scenario again.
My solution is not elegant: I attach him to me with a strap locked on to his belt loop the second we leave therapy. He might get away but he's not going too far too fast if he has to drag me and Willow behind him. And I reward him for getting into the car and waiting patiently for his car seat strap to be attached. Good behavior = treat.
The point of this long story is this: Sometimes there's a place even for dog training. It's not pretty but this particular behavior is an absolute no-go.
Do I think that behavior therapy can cure every autistic deficit? I'm certainly no expert, but I think pure repetition and reward is unlikely to create a desire for more rich communication.
That being said, I've learned enough about actual behavior therapy to realize that very few of them actually practice in this manner. Practical behavior therapists are adopting developmental principles, particularly with younger children. And many developmental enthusiasts are finding a place for the principles of behavior analysis.
Parents should weigh every bit of advice they get better than I did in the beginning. See for yourself before making a judgment. And see more than one therapist.
Also, realize that your child is going to require a unique recipe that only you can write. After watching your child over a long period of time in a variety of situations, you will be the best judge of what is a behavior problem and what is an autistic deficit. And when you try one therapy combination, it may not work, and the recipe will require some tweaking. And it may work for a little while and then your child's behavior or progress will require something a little different.
That's OK. We're parents. The only place we're required to set up camp permanently is in a place that makes our child happy.
Are any of you engaged in behavior therapy? If so, what behaviors are you targeting? How successful has it been? If you're adamantly opposed to this form of therapy, I'd love to hear from you too.
Monday July 11 2011 10:14:49 pm
Shannon C
So the part of me that loves billy almost cried at the part about him asking a friend to play. The part of me that is training to be a therapist says you should JUMP on that train... talk to his parents set up play dates! (Maybe with a behavioral aide or atleast one of each kids parents) and let me know how it goes :)
Camp LuckyDuck
Thursday June 16 2011 07:51:26 pm
Amanda Broadfoot
@Cheryl: They work really hard to keep prices affordable, and decided early on that the camp wouldn't be about making money but providing a much-needed service to our community. I can't speak highly enough about the committed individuals involved in Camp Escape and BMC in general. They really really love what they do and their dedication to the kids shows every day ... even at the end of the day :-) My dream would be to do some fundraising over the upcoming year to create some scholarships for families for whom $300/week is still way out of reach.
@Randi: Are you working with BMC through the school system? They aren't allowed to do any "marketing" of the camp through their school system connections, which sucks, because I think there are a lot of people who may not have gotten the message. I passed along flyers to all the parents I could think of who might be interested, but hopefully, by next year, more people will know about this excellent camp!
what?!
Thursday June 16 2011 03:49:44 pm
randi
We work with BMC and never heard about this camp. Sounds amazing and I am so glad it is working out for Billy......and mommy! Going to check it out soon!
monster beats
Thursday June 16 2011 05:03:08 am
monster beats
It sounds like a dream camp!
Wow!
Thursday June 16 2011 01:56:49 am
Cheryl D.
What a great camp! I can't believe how reasonably priced it is. My daughter is going to a normie camp and it's a lot more money! And there will be about 2 counselors for about 15 kids! Here, a social skills class for an hour or an hour and a half runs at about $80. How can they do this camp so cheaply?
Wow
Wednesday June 15 2011 11:02:00 pm
stephanie
It sounds like a dream camp! So glad Billy is enjoying it & you can have a few moments free of the 5 Little Ducks this summer!
Camp Escape!
Wednesday June 15 2011 11:01:50 pm
Amanda Broadfoot
@Noelle: You can contact Dr. Bailey about the camp directly at bmccamp@bmcsoutheast.com. I know she'd be happy to talk to you about the camp and give you any additional information. There is a flyer at the BMC website too: www.bmcsoutheast.com.
@Erika: I'm SO glad Jared is having a positive experience too! The people involved are just so committed to each child having fun and learning that it makes me wish I could spend all day with them too ... especially since tomorrow is Water Day :-) FYI, Billy identified Jared in a picture today and said, "Jared is very good at swords." So I'm not sure exactly WHAT they were playing today!
GREAT Camp
Wednesday June 15 2011 10:50:54 pm
Erika
I am loving this camp, and Jared has been remarkably positive about the experience. Last summer, he complained (loudly) every morning about going to Camp Noisy, which was a terrible fit for him. Here, he gets lots of one-on-one attention AND quiet time when he needs it.
Total 9 comments