mama whose curiosity knows no bounds

Posts tagged ‘SLP’

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 #7

I really didn’t have to understand the “system” to get the service I thought would help K.  The caseworker at ALTA did all the arrangements for payment.  I filled some paperwork but all I had to do was to confirm the time of actual therapies.  Since we needed to take K to a therapy center about 20 minutes from our apartment, my husband and I shared responsibilities.  Mostly, I did PT and ST, and my husband took care of OT.   They were all well trained and compassionate people.

The therapy center was so full of therapy equipment so there was no open room for speech therapy session.  So SLP came to my apartment to do speech therapy for twice a week.  She had a large built and long dress fit her so well.  She had a very cheerful attitude and became friend with K immediately.  Most of the time, K sat on my lap and SLP face me, doing a lot of play.  The first goal was pre-verbal skills, especially joint attention that K was really delayed.  I learned a LOT, really a LOT from her.  How to gain attention of K, lots of hand-song play, traditional songs, and educational toys.  How ignorant I was as a mother!  I did bought some toys for K, but I mostly looked at the age level on the toy.  I didn’t give much consideration if it was educational or to increase specific skills.  I thought if I provided toys and play with him, he would learn.  Pretty wrong, huh?  After a while, my husband and I spent lot of money on those “educational toys” in a fancy local toy store, as though if we provide these toys to K, K would start talking!  Until then only toy store I went was Toysrus!

OT was a quiet, but consistent and reliable person.  She introduced me to bean pool, which K LOVED, and we didn’t even imagine that K couldn’t ride a swing.  I didn’t even imagine that 2 year old should ride a swing.  She explained a lot mostly to my husband about sensory issues K has and what kinds of activities would help him “organize” his sensory system.  We remained with her until we moved to Mid-west when K was four, and stayed in touch for several years thereafter.

PT happened to be a Japanese so we did therapy and chat in Japanese.  She was petite but athletic and cheery.  She told me one of the most valuable parenting skill: no facial expression.  When the child behaves, sometimes we want to yell, scold or even laugh. According to her, all of them, especially laughing, would be reinforcing.  Even if it was very difficult for a parent to have real scolding face when she/he wanted to laugh, it was possible to erase all facial expression and that would be the most effective way to reduce the behavior.  That worked like a magic!  At least until he was 6 or so.  And this technique certainly still works with S, my 11 years old gifted daughter!  She can sense that I’m dead serious when I erase all facial expression.

Both my husband and I loved all of them.

To be continued.

B.

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