SUMMERTIME, AND THE LIVIN' AIN'T EASY.... or: WHAT THEY DON'T TELL YOU ABOUT ABA THERAPY

Do you remember a time when your really, really wanted something really badly, pinning all your hopes and dreams on it, awaiting that incredible something with massive anticipation, and when you finally got it, it was a major disappointment? Or worse yet, it was horrible, awful, terrible, and you just wished you could give it back but couldn't?

That is exactly what happened when Dovi finally started therapy.

The first therapist to show up was a Speech Therapist, named Vivian. She was gentle and kind and loving, but Dovi just cried and cried throughout the sessions. He refused to sit in one spot and felt overwhelmed by the simplest task, the slightest touch. He did not know what the therapist wanted from him and did not respond to any of her commands. He cried and cried.

And so did I.

It's really difficult to listen to your child cry and be unable to -- or not permitted to -- intervene and make it all go away. My brain knew that this was for Dovi's good and the crying did not mean he was in distress. But my heart was aching and I couldn't take it.


So Vivian started doing her sessions in Dovi's bedroom, which  was accessed by passing through my bedroom. This way I was two rooms away from the crying, but I liked sitting in on the sessions and observing her methods. So we alternated; part of the time I was in the room, and the other half I "enjoyed" the break and was able to do my housework, phone calls, etc.

There was one toy that Dovi loved, which he quickly mastered and knew how to put the gears on and off, for which he was rewarded by being allowed to press the button to make it all go round and round. I debated buying one for the house, but then decided to leave this as a special toy reserved for Speech Therapy only.

Instead i later bought a similar toy, and Dovi really enjoys putting the gears on and then pressing the button to make it go round and round.

Playskool has other similar gears - themed toys which look just as good; working with gears is fun and rewarding and an easy choice. 

    

The one that Vivian used, the Busy Gears, was perfect for Dovi since he got the instant feedback from the  music and lights once he had completed the task of putting the gears back on. The first few months Vivian had to do it hand-over-hand and he did not grasp the concept of imitating or responding to commands. He cried, wanting the lights and sounds all the time. But Vivian was firm and did not relent. It was hard for me to witness and I was glad I didn't have to be present the entire session.

Four sessions later, we went upstate for the summer. For two weeks Dovi received no services; Finally in early July his schedule started. It was crazy. He had speech therapy every day, occupational therapy every second day, and Special ed for 3 hours every day. He enjoyed the speech and OT since it was mostly conducted in the swing -which he loved; he could be in the swing for hours and hours, often even falling asleep there.

  

I had been warned that "ABA therapy is brutal", but I did not know just how brutal.

The therapist showed up  on the first day, and without preamble - without trying to get to know him first, to warm him up a little and gain his trust and rapport, she sat down in front of him and said, "Do this!" and clapped her hands. Dovi did not know what hit him. He began to cry bitterly, his piteous wails resounding throughout the bungalow colony. The therapist wouldn't budge until he had done "this"  - which of course, he didn't. Seeing my baby in distress was torture. I tried to hug him, to offer him a cold drink on the scorching day - but the therapist waved me away, telling me that "it won't work like this. He has to know there's no way out and he has no choice."

This was antithetical to everything I practiced. I admit it; I'm a pushover mother who has a hard time - neigh, impossible time -- setting limits for my children. I do not believe in letting children cry, especially when they can't express themselves and you can't know what's going through their mind. So sitting there watching my barely 2 year old screeching his guts out, red faced and tear stained, but he had to clap his hands before he could get a swig from his bottle, or any other 'reward', felt like white hot ice picks in my heart.

I turned around on my heels, ran to the swimming pool, and burst into tears.

Was this what poor Dovi would be subjected to, for the next year or more?

What had poor Dovi done to deserve this?

Wasn't there another way to get him to open up and respond to commands?

Was it too late to back out of this and look into Floor Time?

One thing was painfully clear to me: Dovi was severely impaired. Severely. At age 2, he had zero cognition, zero reciprocation, zero imitation skills. He was truly locked in his own world. The last vestiges of denial went out the window.

It was a difficult summer for both of us. Eventually a kind cousin of mine allowed me to use her bungalow for those 2 hours every day, so I wasn't subjected to the crying and tears. He cried almost the entire 2 hours of every session. I steered clear of the bungalow.

Not much was accomplished over the summer. The therapy only succeeded in holding him at status quo, so he didn't regress further. But not even a baby step had been made towards regaining Dovi's lost skills.

Other than his therapy sessions, though, Dovi thrived. The sensory experiences of the grass, trees and nature, and the open spaces, were just what the doctor ordered. He loved sitting in the swings,loved feeling the grass under his bare feet (we simply could not keep his shoes and socks on - that's a whole other post!), and finally, at the very end of the summer, learned to love the swimming pool as well.

Interestingly, during the following winter Vivian remarked that she was unable to replicate the gains she had achieved with Dovi over the summer. While in the swing he was extremely relaxed and receptive to therapy activities,and she managed to get him to hold her eye contact. She tried to mimic the country environment in my home but it didn't work. It took six months of research until I was finally able to figure out how to obtain a swing and put it up in my home, but it wasn't the same anymore. His ABA therapist, too, used the swing as the best reinforcer; every time he awarded her with a smile or extended eye contact, he was rewarded with extremely high swinging. And I mean extremely high. As I would finally figure out, he had extreme vestibular sensory needs, which is why he was in constant motion and only extreme swinging could calm the 'dizzy feeling'.

Despite his limitations he remained the beautiful child he had always been, and photogenic when the right opportunity arose, such as when he raced across the empty, grassy fields he did not have in the concrete city.

I had feared - not without reason - that the cat would come out of the bag during the summer. I was spending my days and evenings in close proximity to 55 other families, and it was almost a given that at some point the secret would come out. The first few weeks, it was easy to continue the white truth; that Dovi was speech delayed and needed a lot of therapy. Eventually it became clear that he was an extremely atypical 2 year old. All the other 2 year olds went to morning day camp, and obviously Dovi could not go. The gaps between him and the other kids his age widened greatly. One little girl only 2 months older than him, who had played with him adorably the summer before - was speaking in full sentences, and Dovi did not even answer to his name. At some point I finally admitted that his 'condition' had a name, Pervasive Developmental Disorder. This was gibberish to most of the other ladies, which was a relief. However, one smartypants in the circle just had to pipe up with, "It sounds like autism to me." There; the cat was out of the bag. I refused, however, to call it autism, and told them it was a 'cousin' to autism. To me, Dovi was still just a 2 year old with delays, and he was NOT AUTISTIC!!

Of course, this revelation sparked a myriad of questions, which I fended off through gritted teeth. Did he ever have head trauma? Did his older brother ever hit in the head? And my favorite worst, DID YOU GIVE HIM THE MMR SHOT?

Grrr. Grrrr. Excuse me while I stop punching the drywall. No other question quite riles me up as much as this one. YES, HE GOT HIS MMR SHOT, AND GUESS WHAT, HIS VOCABULARY EXPLODED FOR SIX MONTHS AFTER THE SHOT, SO IT'S NOT THE SHOT, AND GO AWAY!!!!

Don't worry, I will address the whole MMR business in a later post.

The nature of being upstate in a bungalow colony is a bit like communal outdoor living. Every day the women of the colony sit out and chat while folding laundry or doing needlepoint or whatnot. The little  ones crawl between their mothers' feet, wander off into the playground and come back,and so forth. It's a totally safe setup; the place is fully gated and is like a ginormous park. With Dovi, however, it was a whole other story. He moves at the speed of light and has no attention span. Classic ADHD. I barely had the luxury of relaxing and vacationing like my peers; I frequently had to look for Dovi all over the colony, and since he did not answer to his name, it was terrifying. I learned of his favorite haunts and usually knew where I could find him,  but there were some truly terrifying moment. He liked to run in and out of different bungalows, and I never knew just which bungalow was his favorite du jour. He often wandered into the adjoining colony - of which we shared a playground - and liked to run back and forth on the bike path, fascinated by the yellow dividing line. He learned how to go up and down the slide and I often found him there. The only way I knew he was safe was by putting him into a swing - from which he couldn't climb out - and sitting nearby and reading. I lost out on a lot of 'circle time' with my friends, but I was totally not in the mood to socialize anyway. My life had changed drastically; I was different from everyone else and my mind was in a whole other universe, the inside of which they could not possibly begin to understand.

Towards the very end of the summer, he figured out that the grocery store held his favorite treats, and he was found there twice, nibbling on some wafers. Even scarier than that, once he began loving the pool, he started wandering into the pool area, having no concept of danger! Once he darted between the legs of a swimmer exiting the pool and once he followed in the pool cleaning guy early in the morning. He moved at the speed of light; one minute he was right next to me, the next I was combing the colony grounds trying to locate him. It was truly a relief when the summer ended and we came home. I was looking forward to the next phase with a mixture of dread and hope. I was looking forward to the 3 hour break every morning when I could go shopping or run errands; I hoped I would be able to see a social worker or therapist for myself to deal with the overwhelming issue of being a special needs parents and other issues.

I had no idea that I had jumped from the frying pan into the fire.

The worst 10 months of my life were about to begin.

No matter how bravely I squared my shoulders, how many gulps of air I took in before I plunged straight into the icy cold waters, the sea was about to get even stormier, thrashing me about with no means of escape, threatening to engulf me all the way.

I was about to feel the full wrath of the Stormy Sea.

To be continued...