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Posts tagged ‘ALTA regional center’

Journey with K: To ABA or not to ABA – my mistake #2

Though I call him “my husband”, we were not legally married.  I was very much opposed to a Japanese law that required a married couple to take the same family name.  I didn’t want to change it.  I really didn’t.  I didn’t like (or hate) the Japanese traditional patriarch system. I will write about it in a separate occasion about that.

What was important was that we were not legally married. My husband was on J-1 visa and I was on F-1 (student) visa. I finished my schooling so I was on “practical training” status. If I quit the job, I would have to leave the US.  Marrying him to keep the visa even didn’t come to my mind. I just finished my Ph.D. and was pretty much hopeful about my future as a scientist. So this was a practical side of the problem. My mentor was very understanding so even if I chose to have ABA for K, I could take turn and work at night, which I did a lot during when K was a little baby.

The more critical was the emotional side. I gave a lot of thoughts then concluded that I can’t tolerate someone else in my apartment for 25 hours a week. Two hours a week of ST was hard enough. I came back home an hour before the visit and vacuumed the apartment. I wasn’t good at all for keeping house clean, and I was too wimp to show my messy apartment. The SLP is a wonderful person and I still feel a lot of pressure and stress to have her twice a week. I was terrified of the idea to have 5-8 students taking turn to visit my apartment and provide ABA to K.

Then I met the opposition from the caseworker and SLP. At that time, I was totally ignorant about the philosophical battle between pro-ABA and anti-ABA. Nor about the funding source of that therapy.  All I thought was who cared most about K and my family. The answer was obvious to me. The developmental pediatrician appeared very cold and even happy that K was autistic. The caseworker and SLP were sorry, told me to love K as is.

So I (my husband didn’t care about having anyone at home and indifferent about this issue) decided that ABA was not for K. 

I wouldn’t learn that that was a mistake I couldn’t recover for the next 5 years or so.

B.

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Journey with K: To ABA or not to ABA – my mistake #1

When K was diagnosed, I called the social worker at ALTA regional center.  She was on vacation, but I left a message.  On our way to get-away trip, she called me.  Apparently, whoever took the phone contacted the social worker on vacation and she immediately called me.  At that time, I was driving on highway so I pulled off to speak.

I think that was a sort of pre-formatted consolation: I’m sorry for the diagnosis; regardless of the diagnosis, K is K, etc.  Still, it was soothing.  She said in a truly compassionate manner and I felt that she was saddened by the diagnosis.

After we were back from the runaway trip, she visited my apartment.  She repeated the condolences and added that she was a bit surprised for the diagnosis.  That gave me some hope.  Even if K was autistic, it might be mild enough to trick the social worker!

When I told her about the recommendation by the developmental pediatrician, she appeared unhappy.  She told me that she had arranged ABA (Applied Behavior Analysis) therapy for some of her clients, but K didn’t seem fit for that therapy.  According to her, ABA was for the most severely affected children and K was not.  She was much happier with Floortime (a.k.a., Greenspan, after the founder of this program) approach, which we had already started to some degree after the speech evaluation six months ago.  The caseworker thought Floortime and regular ST, OT and PT will be good enough.

I had other thoughts, too.  What the doctor recommended was in-home ABA.  In-home ABA team usually consists of a psychologist (now mostly replaced by BCBA – Board Certified Behavior Analyst) or counselor and a few graduate students taking the leadership roles, plus several undergraduate students who receive training by the professional and graduate students.  What was recommended to K was Discrete Trial Training (DTT).

DTT goes like this: a trainer says, “touch your nose”, and someone or the trainer let K touch his nose (called physical prompt). “Good job”, then immediately gives a tangible reward – most often a snack food.  Record how he did. This constitutes one “trial”. Repeat until K can do just be being told to touch his nose and without a tangible reward.  Once he masters to touch his nose, teach him to touch his mouth, eyes, head, etc….until K learns to behave “normal”.

And do it at least 25 hours, preferably 40 hours/week.  What this meant was either my husband and I may have to quit the job to stay with K – leaving house to someone else was completely unthinkable.  And this posed a serious problem.

To be continued.

B.

Journey with K: 18 months to diagnosis #5

On the way to Disneyland, when he drove, I couldn’t cry. He kept an eye on me most of the time. I cried in silence while I took turn for driving. I just let the tears flow without looking right.  In the hotel room, we opened the sparkling wine my mentor gave me. Again, my husband wanted me to be happy. Really happy. For him, My finishing Ph.D. was much a bigger deal than what some SLP told a night ago. So I pretended to be happy.  I pretended to enjoy Disneyland. I let my tears flow down only in the dark or some ride: for example, while waiting for Space Mountain. We couldn’t of course ride together. For some rides, my husband and I took turns for some, nastier rides, only I got on. He knew I loved those thrill rides. But this time, I loved because it gave me some lone time to cry.

K enjoyed it, too. K loved “it’s a small world” so much that we rode five times in a row! He clearly demanded for the ride! Probably we could repeat forever. I wish time were frozen there. I really wanted a music box with the song, but I couldn’t find. We bought “we can fly” music box instead. K loved the parade, too.  He was fascinated with those lights like any of us.

We spent a lot more money than usual. We are usually reasonable about spending but this time, we bought stuff we knew we won’t need. My husband, who hated shopping, bought a lot, too. In hindsight, he was trying to cheer me up or he was also trying to cope with the dire verdict.  At that time I thought he was a bit overzealous about this vacation. I didn’t have any capacity to think in his shoes.

When we came back, a social worker from ALTA regional center visited my apartment. In a sense, this WAS the start of my autism journey and she was the first professional I worked with for K. And this was my first exposure to the United States outside of the lab.  About seven years in the US., the world my husband and I knew was my lab.  And some grocery stores and restaurants and maybe some sightseeing spots.  Of course having Kai expanded a bit, as I was exposed to medical systems and daycare in the US.  But I was merely a recipient of service. In that sense, hospitals and doctors are the same as restaurants.

To be continued.

B.

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