mama whose curiosity knows no bounds

Posts tagged ‘autism’

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.

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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.

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 #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.

Journey with K: 18 months to diagnosis #6

The social worker was a really cheerful, big lady, who panted to walk to my 2nd floor apartment. She immediately established a rapport with K. It was amazing that how well she and K played together.  While playing, she performed several tests (some of them aren’t even noticeable as the test!).  After then, she told me that except speech, he didn’t have too much delay.  And she told me that she didn’t think K had autism.  That was assuring.  After all, my husband was correct! But she noticed that K has some sensory issues (this is the first time I was exposed to “sensory integration disorder”).  I also told her that K couldn’t jump yet.  Those things made him eligible for not only speech therapy, but also at least evaluation for occupational and physical therapies.  They are all set up at child therapy center who serves kids like K.  There was no space for speech therapy there, so SLP would visit my apartment for assessment and therapy.  But for OT and PT, we were going to take K.

Both occupational therapist and physical therapist came to the same conclusion: K qualifies for their service.  They were all paid for by ALTA regional center (this is California’s unique system of service delivery).

Meanwhile, I took K to his pediatrician for yet another referral.  He was a bit surprised with the result of speech evaluation, which suggested autism.  He brought a bouncing ball and played with K for a few minutes.  Then he told me that because K was very interactive and enjoyed the play, the doctor didn’t think K was autistic.  But he sent the referral anyway.

I should have been hearing from UC Davis MIND institute to confirm/arrange appointment within a few days.  For hearing and speech evaluation, it was the case.  K was on UCDMC health system and referral process was annoying but smooth.  But this time, there was no call.  I waited and waited and about a month later, I couldn’t wait any longer so I called the MIND institute.  I think it was a nurse who spoke to me.  She pulled up a file and told me, “he’s been diagnosed with speech delay, I don’t see why he was even referred to us.  He already has a diagnosis.  What’s the point of seeing us?”

I snapped. I was quietly speaking on my cellphone in the lab, but I rashed out to the veranda.  Then yelled, “HE NEEDS AUTISM EVALUATION!!! HE MIGHT BE AUTISTIC. THAT’S WHAT SPEECH EVALUATION REPORT MUST SAY!”.

The nurse’s reaction was, “oh.”  “Oh”? is that it? for delaying evaluation for a month by overlooking the report? But at least she got why the referral was there.  And I was told there was five months  wait.  I lost words at this point.  Do I have to wait another five months before I know the answer? He’s already 2 years old.  But I was told, K was getting evaluation ahead of others because he was young.  If he were, say, 5 years old, they kept postponing the appointment.  That seemed so unfair to the older kids.  I had no idea at that point was their mission was to identify early and study (or prove) ABA on very young children.  You can tell how naive I had been. “Five month wait? Lucky you!”, you might say.  Now 8 months wait is norm and wait could be even longer.

Anyhow, I made an appointment for the diagnosis and received tons of paperwork to fill in.  I was swinging between hope and despair.  Caseworker, SLP, pediatrician and my husband didn’t believe K was autistic, though he definitely had a speech delay. OT and PT remained silent.  But filling those skill inventory forms made me devastated.  How many of these skills should K be performing by now?  Some of the questions appeared to be autism-specific. And I appeared to check most of them in the direction to the autism diagnosis.

Around the same time, the therapy schedules were set up and early intervention was started.

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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Journey with K: 18 months to diagnosis #3

While waiting for speech evaluation, we changed daycare, and my husband and I took K to a retreat – basically graduate students and faculty members go to mountain cabins with a conference facility and present their work either orally or by poster.  I didn’t have to present, but my husband did.  K and I walked along the lake and played.  He didn’t like to interact with me although he did respond to my call.  He preferred to play alone.  He particularly liked watching leaves waving in a wind.  It was fall, so he also played a lot with fallen leaves.  Just throwing and watching. By that time, I was very seriously worried about him having serious developmental delay.  During the search, sometimes the word “autism” appeared but it wasn’t a perfect match.  Rather, “mental retardation” matched what K did.

We brought a very spicy dish (stir-fried bean thread) with us. K liked VERY spicy food.  He could take spicy food that was too spicy for even me.  He ate some jar food, but definitely prefers curry or chili flavored dish.  In fact, during the meal time, he ate ONLY that spicy bean thread.  There were a lot of food that toddlers could eat and the cook and server were asking if K needs specially processed food, but I knew he wouldn’t eat any of them so I declined, feeling so sorry for them and myself.

In the cabin, I tried to teach him to use a puzzle (a wooden box with various shapes of hole and a matching wooden block).  K didn’t get it.  I was so irritated and scared then yelled at my husband “K may be mentally retarded.”  At this point, my husband had no concern at all.  He was very irritated that I had such a negative attitude.  He scolded me that K was absolutely normal and it was me who were wrong.

(Note: I am fully aware that the use of R-word is totally inappropriate, and I oppose the use.  However, this was the direct translation of the Japanese word I used then (2001).  Please forgive me if you feel upset about my language use.  I was one of those who “didn’t get it”).

The appointment of the speech evaluation was two days after I finish my Ph.D.. My mentor had planned a party for me.  I was doing final printing on cotton paper, taking the copies to professor’s room, getting signatures from committee members.  Two emotions were going on simultaneously – elation that I’m completing my Ph.D., and fear/worry/devastation that K has a developmental delay.

To be continued.

B.

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