mama whose curiosity knows no bounds

Archive for the ‘Autism’ Category

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.

My thoughts on the Stapleton case

It seems like Kelli Stapleton, who attempted to kill her autistic teen daughter, Issy, is campaigning to reduce her jail time. Her appearance on Dr. Phil produced the desired effects: so much sympathy – and anyone who criticize her for her action is judged, “Don’t judge her unless you walk in her shoes.”

As one who indeed walked in her shoes, I know firsthand how devastating aggression of autistic teens could be. I know how powerless that anything parents do to help have no impact. I know how scared the parents are for their own and more importantly, the sibling’s life.

Still, she should be judged for what she did – attempted murder (well, should I call child abuse?).

I know the shortage of services, though apparently the Stapletons had more resources than many families. As I live in one of the poorest area of America, I know how little local agencies provide for impoverished families. But that’s not the case for the Stapletons.

I understand the feeling of being at the end of the rope. I’ve been there, twice. First time, when it asked to give up the custody, the services suddenly poured in and I survived.  The second time, it was physically impossible for me to take care of him.  I had lupus and my son was growing.  So I had no choice but to place him.  After a long turmoil, I am at peace.  I realized finally that K needed much more than I could potentially provide: now he has two aides at all time except during sleep, when he has only one aide.  At his school, he has two behavior technicians at all times.  I think the same might be the case for Issy.  But Kelli Stapleton COULD choose residential placement and she didn’t.

Being a well resourced parent and well-known blogger, she must have been aware of such arrangement.  More disturbing, though, was that rumor says she bought a shock collar to use on Issy (she didn’t) to hype up the blog.  The current campaign with Dr. Phil might fall on the same line – to raise her fame.  What’s next…a book deal?

“Judgement argument” aside, I can say for sure about this: Kelli Stapleton should NEVER earn money and fame for what she did.  What she did was an attempted murder and child abuse.  We shouldn’t get trapped by her media strategy.

B.

How we processed the diagnosis – difference between genders or else?

My husband (“papa”) processed the K’s diagnosis of autism quite differently from the way I did. The difference may be our personalities, but I am afraid this is somewhat tied to our gender. I don’t want to group and stereotype one gender’s reaction as such, but I do see a difference and understanding the potential difference may, just may, help avoid marital tension. Autism alone brings enough tension between couples. If papa didn’t say, “we MUST get along” so repeatedly that I can still visualize the scene so vividly, we might have ended up separated.

So, here’s my observation.

 

Acceptance/denial curve of papa and mama

Papa was in rock solid denial of K’s autism/disabilities even after speech evaluation. He told me that we showed him too much TV and if we stop doing that, K would be fine.  He wasn’t happy at all about my worries and negativities about K’s prognosis.

Everything changed on the day of diagnosis (a friend of mine coined the term, “our D-day”. I know this is a small stuff compared to the real D-day, but to individual parents, it is an earth shattering event). He switched from 100% denial to 100% acceptance. As though he flipped the coin. Therefore, he sustained a HUGE mental trauma at the D-day.

My reaction was very different. Since K was referred to hearing evaluation, the worries and certainty crept in slowly as I gathered more information about the symptoms and disability. Therefore, in a sense, D-day was just a verification of what I was almost certain. Still it was a blow indeed.

What irritated me was the fact that he didn’t trust me at all! But when the developmental pediatrician told, he was 100% convinced! I sincerely wondered about our relationship and if he believes me in any matters. But that is how HE processed.

On the other hand, it took me the next two years or so to fully accept that K had autism and that was not reversible. You can see the “denial bump” on the graph. When K utters something like a word, when I heared about GFCF diet, when K started music therapy, a new preschool, new therapist, and on and on and on, my “hope” which is in fact, denial, went up. And disappointment followed. As I repeated these processes, I came to a point that K is K no matter what. Then I realized that autism and being nonverbal is part of him and that I can love him as a whole. Papa took 1 day plus the recovery period to reach there. This mama took 2 years to get there.

There is no right answer for the way to accept such a devastating diagnosis. I just noticed that my husband had a really different coping strategy installed in his brain. And I felt that it was something I can’t obtain. Therefore I came to blame gender difference. I was born female and always will be. And I don’t have to pretend to be a male, because his coping strategy is different, but not superior.

Yet, I still encounter occasions that I want to say, “I TOLD YOU SO! DIDN’T YOU BELIEVE ME?”

B.

Journey with K: 18 months to diagnosis #10

After we came back to our apartment, my husband sat at the dining table and started crying loudly. I joined him. I don’t remember how long we cried, but after at least 30 minutes of crying, he squeezed, really worked hard to squeeze out these words:

“We must get along.”

He repeated I don’t know how many times, he repeated, “yes we must get along well, otherwise everything will collapse”.

All I could say was “yes, we must.”

We hugged each other in pain. And he said, “we must go somewhere. I can’t stay here. Go somewhere else for a few days.”

So we wrote a quick email to our boss (who was my Ph.D. Mentor), saying, “K was diagnosed with autism. We need some time off to reorganize ourselves. I’m sorry.” The boss quickly responded, “take as much time as you need.” Beforehand, we spoke to him about K’s possible autism and early intervention because either my husband or I will be taking time off for these therapies.  He was very understanding and, kindly told me that his son was a really late talker as well and we shouldn’t worry.

We left message to K’s social worker at ALTA regional center, packed up our stuff and left the apartment. At this point, we had no idea where to go.  We just left.

First stop we ended up was Bolinas lagoon in the north of San Francisco. We often hiked with K on my husband’s back. It was already early evening, and very quiet. Just we heard the sound of waves for maybe about an hour.

After leaving, we headed south along CA-1. CA-1 runs along the Pacific Ocean shore of Bay Area. When it got dark, we decided to stay in Santa Cruz and reserved a hotel.  It was pre-smartphone era. We always carried AAA tour book and map then whenever we felt right, we found and called the hotel to book and checked in a few minutes or few hours later. Cell phone made it a bit easier, though.

At least it was not our room. That appeared a good relief for us. We somehow managed to smile and drink. Then slept hard.

We spent the next few days in Santa Cruz and Monterey area. One time at the board walk restaurant, we had a breakfast. The waitress was young, but looked so much like K’s SLP. K clearly thought so, and he reached out to the waitress. The waitress was impressed, “I’ve never seen a boy this cute!” I know, K is really cute and super handsome (it’s true!). But in my mind, I was saying to her, “but this boy is autistic, you know.”

We had some superficial fun at Monterey bay aquarium and headed home. We stopped by a Japanese bookstore in San Jose and bought several books about autism.  I was surprised to see the big collection.  I didn’t know about the high occurrence of autism in Silicon Valley. Totally ignorant parent.

We started reading. We need to understand and decide what to do. Getting diagnosis itself turned out to be a year-and-harf journey, but it was just a beginning. My journey with K won’t end until my death.

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.

Journey with K: 18 months to diagnosis #8

It was mid May of 2002 K was scheduled to visit UC Davis MIND institute for a full evaluation.  In advance, we filled pages after pages of forms.  The appointment was 8:00 a.m. My husband and I took a day off and arrived about 30 minutes early. At that time, MIND institute didn’t have its own building, so it operated on the basement of ambulatory surgery center.  When we went down the elevator, I noticed that MIND institute was located right next to ultrasound department, where I had ultrasound exam when I was pregnant with K.  I felt like I was drawn to a gate to a hell, being sucked and couldn’t come up forever.  I know this type of expression really offends many, but I must be honest.  That was what I felt.

After we checked in, we waited in a waiting room full of good toys. But K didn’t play with none of those, except one puzzle. I believe it had a fish drawing.  For whatever reasons, he was fascinated with this particular puzzles and even though I had many toys with me, he wouldn’t let it go.

We waited.  And waited.  Then we were called and taken to an exam room.  Then we waited.  Nurse told me that the doctor was stuck in a traffic.  Oh well, I think traffic problem is a norm in Sacramento.  The developmental pediatrician finally appeared around 9:30 a.m. We were already exhausted.

The doctor looked young, maybe in early 40’s.  She had a refreshing voice and cheerfully greeted me.  Too cheerful for that occasion.  She reviewed what we were there for, and explained what will happen.  And then let us sign a release of video, and default was to use the video for DIAGNOSTIC USE ONLY.

Then while waiting for a psychologist to perform a test (it turned out to be ADOS, of course I didn’t know such a thing), we played with a pop-up toy, like this.  It had sesame street characters instead of farm animals.  This was one of the toys I brought.  K grabbed my hand to press the button to pop the character up.  He repeated, over and over.  That’s when the doctor came in again, more cheerfully than ever.  She told me that what K did was very interesting so she would want to use it for educational and other purposes (like presenting in academic conference), too.  So I signed a new release approving such use, not just diagnostics.  I wasn’t happy at all with this attitude.

Finally a psychologist, a tall, well-dressed hispanic woman with curly, long black hair.  She donned a little more serious face when she greeted us.  Then she started a test.  She changed her mask to a cheerful, child-friendly face and brought a toy up. “Hi, K.  Let’s play.” At every play, she filled a form.  It seemed like the form itself was a flow-chart, that determines the next test based on the current test result.  I really don’t know how ADOS works so I’m not sure if this was correct or just my impression.  She was very careful checking the chart.

One test that shocked me was a birthday cake.  The psychologist brought up a plastic birthday cake and K, of course, didn’t blow.  I felt, “what’s wrong with not blowing a birthday cake? We’ve done only one birthday celebration at home and he was one.  He had never been to other’s birthday party.  Does this determine if he was autistic?”  The test was mostly focused on social skills, like playing with a doll (“we don’t have a single doll in my house!”).

By the time test was over and the psychologist left the room, her face looked doomed.  I didn’t need anything further.  Her face told what she was going to say.  At the same time, I felt rebellious with the fact that the tests contain some cultural contexts like blowing birthday cake.  That was a disadvantage for K.  Looking back, this was a typical symptom of DENIAL.  The characteristics of DENIAL is that the person who denies doesn’t think she is in denial.

To be continued.

B.

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