mama whose curiosity knows no bounds

Posts tagged ‘ABA’

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.

Advertisements

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 #9

After the serious-faced psychologist was gone, we had some break.  I spoke to my husband that K must be autistic.  And then, he responded, “who knows? result is not in, yet.”  Yes it was.  It was all in her face.  I was irritated by his denial attitude.

The developmental pediatrician walked in.  She did other testing (later found that Mullen Scale of Early Learning) as well as physical exam.  She was cheerful along the way.

Then she walked out.  After a while, she and the psychologist walked in.  The developmental pediatrician said that they need no additional testing by OT and SLP waiting and watching the whole exam from some other room. The psychologist’s eyes were wet and she was apparently trying not to cry, she faced upward, not looking at us at all time.

The developmental pediatrician started speaking.  I really don’t remember everything, but I do remember, “are consistent with Autistic disorder”.

There you go.  The verdict is in. I think this is a sort of self-protection mechanism. I felt as if I observed myself from outside.  Then she started speaking like (parenthesis is the voice I heard in my semi-hallucinated state):

  • K’s developmental age is 21 – at 30 months, this is considered HIGH FUNCTIONING. (“Hey, what does it mean to you?”)
  • K could be a genius and live independently or he could end up in institution.
  • K’s diagnosis is NOT PDD-NOS or anything, it is AUTISTIC DISORDER (“Don’t be so hopeful, lady”)
  • K needs to have ABA therapy right away (I didn’t even know what that is). UC Davis must have an intern referral service.  Ask ALTA regional center for more.
  • You need to come back in three months to make sure ABA IS IMPLEMENTED. (“Okay, it MUST be A.B.A.!”)
  • Sensory integration therapy is a simple desensitization and there is no evidence that it works (“I have no time for a quackery, ma’am”)
  • You need to have the pediatrician order “Fragile X testing by KARYOTYPING” (“Otherwise, I can add your son to my data! So re-test at your and your insurance’s expense”)
  • You need to have him order “chromosome 15q duplication by FISH probe. (“Well 15q will be HOT and will my paper go, well, Nature?”)

Probably I should explain the last two.  K was tested for Fragile X syndrome by PCR, cheaper, slightly less accurate, method. Fragile X is the most common genetic cause of intellectual disabilities and autism among boys.  X chromosome, one of the sex chromosome (the other is Y) of boys with Fragile X syndrome has a three nucleotide sequence repeating thousands of times.  Then that repeats do not fold properly before cell division like all other regions of chromosome, thus, if the chromosomes right before the cell divisions are looked at, the X chromosome will look to have a fragile region.  This is called Karyotyping.  It takes cells to stop at the cell division stage and needs to look at multiples cells to verify it.  Therefore this is labor intensive and expensive.  On the other hand,  PCR (polymerase chain reaction) is just amplifying that repeats.  It is much less labor intensive and less special skill is required.  The developmental pediatrician–I’m positive about this–asked to redo the test at our expense so that in HER paper can say, “all the subjects were ruled out of Fragile X syndrome by karyotyping.”

15q duplication was less offending to me.  But there wasn’t enough evidence to justify that IS the abberation that cause autism.  Therefore, the doctor was collecting the evidence — again, at our own expense.  FISH (Fluorescent in situ hybridization) uses a short synthesized DNA with fluorescent dye that can bind to that duplication area of chromosome 15. This is even more complicated technique. Now most everyone can do it, but at that time, only select lab can do it.  So ordering must be really expensive.  Since K was covered with HMO and it somehow covered these, we didn’t pay anything, and we didn’t receive any explanation of benefit to see how much it costed. But both my husband and I are biologists, though we were biochemist specialized in DNA metabolism, not a cytogeneticist, we understood that much. So I couldn’t help but felt we were “samples” to her.

Anyway, the verdict was over, so we arranged the follow up appointment, and headed home. It was well past 2pm. K was exhausted and asleep. I cried all the way. My husband didn’t say anything.

To be continued.

B.

Tag Cloud