mama whose curiosity knows no bounds

Posts tagged ‘denial’

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?”



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.


Journey with K: 18 months to diagnosis #4

I was relieved and happy when my mentor signed my dissertation and gave me a handshake, “Congratulations”, and a bottle of sparkling wine. I didn’t have much time to be immersed in the relief and joy. I had to submit the copies to the official. She was quick. All she cared was whether the pages were numbered correctly. There were lots of strict rules in formatting. She flipped through the page in one swift motion. It took maybe about three seconds to look through my 250 page dissertation.  She told me that she would detect if something was wrong.  Fortunately, my dissertation passed her test and was accepted.  Next stop was binding shop in the library. I needed to have my copies bound like a book. There I also submit the paperwork and check to copyright my thesis, and ordered several book binding: one for my mentor, one for library, one for myself, and one for my husband. I remember I ordered five binding but I don’t remember whom I gave the fifth bound copy. After all, it was 13 years ago.

I had a babysitter available for the party. My mentor and lab friends knew I could drink a lot and my mentor was somewhat worried 😉 Yet I knew I couldn’t get drunk. Once I finished all the dissertation work, I was swept with fear about K’s speech evaluation in two days. Of course he didn’t know. No one except my husband, who was a post-doc in the same lab. So everyone who passed by the hallway like other professors or janitor congratulated me and had a bottle or two of beer. (believe or not, it was absolutely okay to have a party with alcohol in the hallway of research building. We even brought bottles of beer in the lab…I’m not sure if this practice is still okay or not.)

Anyhow, I came back home with K. I was in no way in a mood to enjoy, but my husband was sort of excited. He was so happy that I finally finished my Ph.D., after lots of struggles. He supported me through my journey to Ph.D, in America!  He wasn’t concerned about the upcoming speech evaluation at all. After all, he hadn’t read all the webpages about autism and intellectual disabilities I read while printing my dissertation in the lab during the night. I didn’t want to ruin his happiness.

Then the day of speech evaluation came.

It was a small room with a huge mirror (I think observation room was attached). The SLP, a nice, middle-aged lady, cheerfully came in and played….no, TRIED to play with K.  I was shocked to see his unresponsiveness.  Was it just me who believed that K and I enjoyed playing each other?  And I was shocked to see the demand of play she introduced. Was he supposed to play THAT? He simply didn’t know how to play.

She interviewed me and my husband. I didn’t know much about child development, as I believed that each child can grow at his or her own pace and I didn’t think that being delayed was wrong…so in hindsight, I revealed my complete lack of awareness on what a 18 months old should be doing.

Then after a long, probably 5 min— my heart was pounding with fear— wait, the SLP came back. Her eyes looked wet to me.  She never made eye contact until she finished her verdict: K was probably autistic.  I was almost sure by that time that was indeed the case, but being told by a professional still had a real blow. She explained that she was not allowed to make an official diagnosis and she told me to contact his primary care pediatrician to make a referral (again!) to UC Davis MIND institute for the definitive diagnostic tests. She also told me to contact ALTA Regional center to start “early intervention”. That time, I even didn’t know the term “early intervention”!

I was crying on the way back, but I needed to get ready for our Disney vacation.

Anyway, we arrived at my apartment. I started to cry. My husband’s response was totally different.

“We probably showed him too much TV. Let’s cut back and he will be fine.”

Lucky him. I was too exhausted with my thesis as well so I didn’t have any mental room to outrage. Besides, in hindsight, part of me really wanted to believe him.

To be continued.





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