mama whose curiosity knows no bounds

Posts tagged ‘dissertation’

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.






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.


Journey with K: 18 months to diagnosis #2

While K had a referral to hearing and speech evaluation, the relationship with the head teacher at the daycare went sour.  She was very irritated that K didn’t take a nap with everyone else.  Of course for the staff, that’s the only time they could have a break, so irritation was understandable. I thought if the teacher hated K, it wouldn’t do any good to K, although the daycare center was so convenient for me.  It was located in the same student family apartment complex and it was about 30 seconds from my apartment.  Still, I started to get sick with the head teacher’s attitude, although in hindsight, it was probably full of concern.  But at that time, I didn’t understand and thought the teacher and staff were simply lazy.

I started looking for a different daycare.  It was a sort of first experience for me.  I first went to City office to obtain a directory and started calling.  I made appointment after appointment to visit the daycare, mostly home-based.  They are pretty good.  But when I told them that K didn’t take a nap, I could see everyone’s face stiffened.  Then I realized that not taking a nap was THAT bad. I kept calling. One time, I called the daycare that refused K again!  I was losing track!  I had to extend the search to larger area.

Then I found it. This preschool/daycare (14 kid capacity) was run by a very sophisticated and educated lady from India.  Her husband was from Nepal and taught agronomy at UC Davis.  I knew a few professor at agronomy department though I didn’t know him in particular.  But this made me relax a bit.  When I told her about K’s napping problem, her response was that everyone was different and we as a society were pushing children too hard to perform.  And that performance included a nap at the same time!  Since this daycare has zero-to-five, there were kids who didn’t have a nap anyway, and she assured me that it was absolutely fine if K didn’t take a nap.

Although it wasn’t close (about 10-15 minute drive from my apartment), I really wanted him to be there, being cared by this caring lady.  So we signed up.  I wasn’t exactly nice when I left the previous daycare center for the last day.

Both my husband and I took turn to drop him off and pick up.  K (and my husband and I) was much happier, but he didn’t talk and he didn’t play, either.

And the deadline for my dissertation was quickly approaching.  I had shown the draft to all the thesis committee members and had a good feedback. But printing 250 page thesis for many copies and revise it and printing again occupies the lab printer.  So to print freely, I started working at night.  It also helped me focus.

While I wait for printing, I surfed the web and made reservation for Disneyland trip (and staying in Disney resort hotel) as a reward for finishing my Ph.D..  At the same time, I searched for speech delay and K’s symptom.  “Mental retardation” and “Autism” were the things that was frequently found.  And by this time, K’s behavior changed a lot.

To be continued.


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