mama whose curiosity knows no bounds

Archive for the ‘K’ Category

Sabbath? no not really

For the last 3 months or so, I defined Sunday as my “rest day” as though it is a Sabbath. But in my case, it is merely “mental and physical health day”.

On Sunday I do nothing I have to do, I do something that I want to do –like blogging, or when I feel good enough, sewing. Most of the time, I spend the day in bed, just resting, doing nothing.

Now K is in group home, most Saturday I visit him, unless flare-up or other stuff interferes. Even if my husband drives for most of the time, and in cover myself with UPF50+ shawl, still 4 hours or ride is stressful to my body. That made it start my rest day habit. It allows me to recharge myself so I can go forward with the week ahead of me.

During weekdays I now have to wake up an hour earlier than before, thanks to S going to middle school that starts an hour early. I think this triggered the development of this habit.

Of course it needs cooperation of my family, and luckily, I have. I don’t cook – I often spend all day eating only cereals and my husband and my daughter enjoys meat dish – like bacon and spinach. And now S is old enough, I can ask her to prepare Monday’s lunch – or she will have “hot lunch” at the school – and she always opts for preparing one, even if that means that the lunch consists of three cookies, a cheese stick, and a cupful of fruit. Today she prepared cheese pasta with some vegetables and apparently ready to go.

I don’t do dishes – it’s always my husband’s job. I don’t do laundry, even if that means I have to do two loads on Monday.

This turns out to be quite a good arrangement.  Interestingly, no matter how much I sleep during Sunday, I can sleep through the night. So I just think I’m catching up, even though I usually sleep seven hours every day. I sometimes wish if I could do with less sleep but that was not the case. So I try to make the most out. 

I think many people with chronic illness can make use of this rest day.  It also helped me to say “no” on everything that happens on Sunday. 

When K was at home, Sunday used to be the toughest day of the week. He woke me up at around 8, asking for food. Then ask me to stay with everything he does, even though it means stimming and immerse himself in his world. Because I couldn’t take him to public place out of fear of meltdown, he demanded to go out for a ride. So I drove my neighbor, 30 minutes at a time, sometimes stopping by a gas station to buy his favorite junk food so he learns to stand in line and wait until I pay for the item before he opens the bag. We usually repeated it for 3-4 times a day. What a waste of gasoline! Then whenever he appears to enjoy himself, I sneaked out to do a week’s worth of grocery shopping. Prepare dinner and next days lunch, give K his sleep med, and had harder time making him fall asleep because I was too lazy to wake up as the same schedule.

As I write this, I wondered how I managed THAT.  Probably the sheer force of will/situation.  I realize how much I stressed myself. 

I’m finally learning how to rest myself. And I’m hoping that this will lead to better self for my family. But only they know if they are happier or not with me in bed all day.



Journey with K: pregnancy and birth #3

I checked in the hospital directly from the clinic as at the 41st week check up, I brought my suitcase.  It was a so-called LDR room.  All furniture was light birch color and it was big.  It had a big TV and there is a sofa that can be converted to bed.  There even was a rocking chair.  I was impressed.

Then the perinatologist at the shift whom I’ve seen a few times during prenatal visit, rubbed on something in my cervix.  It was a tablet, apparently and I started to bleed.  That is supposed to loosen my cervix and induce labor.  It didn’t.  So a few hours later, he started me on Pitocin.  The labor began.  From the beginning, it was 10 minutes interval.  Then soon became 5 minutes.  Still there was no sign of my cervix opening up.  Pitocin dose kept increasing.  Time has passed and his shift ended.  Apparently, there was no perinatologist in the night shift. Because of that, they stopped Pitocin dose increase.  They’d rather have a delivery after 7 am next day when a perinatologist is available.  That meant that I, in labor, have to wait overnight.  I’ve been waiting and waiting and waiting and an obstetrician resident occasionally checked my cervix but still no sign. Around 3 or 4 am, I no longer could tolerate the pain and requested for epidural.  I was asked at the check in, but I declined.  I somehow thought it was against nature.  But in that pain, nothing really mattered.  But the nurse told me, “you can have the epidural at 7 a.m., when an anesthesiologist is available”.  Oh, sh-t!  It’s all about hospital’s convenience.  In hindsight, it was a reasonable.  They’d rather have an anesthesiologist in the night shift available for emergency.  Mine was by no means, life-threatening emergency.

Anyway, in the morning, I finally got an epidural.  I was really scared that a resident did the epidural under supervision of attending anesthesiologist.  That’s the nature of teaching hospital.  Anyway, she did very well and succeeded at the first attempt. Immediate relief kicked in.

After that, they pumped up Pitocin even further.  Nope. My cervix was so resistant even if my contraction is less than 3 min interval.  Then around 10 a.m., perinatologist in the shift (who turned out to be the one I consulted) came in and broke my membrane.  Water gushed out.  In two hours, my cervix is fully open.

Now the time to push.  I’ve read a horror story about a doctor laughing at laboring mother accidentally pooping.  I really wanted to avoid that, especially in front of my husband.  So I probably didn’t push hard enough. Still, somehow, my baby decided to be born and came out.  It was 24 hours after the doctor rubbed in a tablet on my cervix.

I think so many have described that moment of joy.  I was exhausted but elated.  My husband was really scared, though.  Yet, he cut the cord and he held K. K was now with us!

The recovery was pretty good. At first K was jittery because his thyroid hormone level was a bit high. As a new mom, I struggled to nurse at first.  It took about 5 days for me and K to collaborate to nurse.

In the LDR room, after all the nurse left, my husband said, “I never thought my own baby is so lovely.”  This word was etched in my brain.  We were really happy.


Journey with K: pregnancy and birth #2

This time, the referral lady at the student health was not as kind as before. Her first response was that my condition doesn’t qualify for seeing a perinatologist. That’s the first time I had a question about US healthcare system that almost everyone has asked: who decides I need to see which doctor? Apparently it’s the lady at the student health or the insurance company behind it. Until then I didn’t pay attention to all the buzz about HMO and other healthcare stuff. All I knew was Hillary Clinton tried something and was flatly rejected.

So I rashed out. I thought my baby’s life was at stake. I explained that it is the endocrinologist who recommended to see a specific perinatologist because she is an expert of genetic issues and high risk pregnancy. In fact, the local hospital refused me to have birth there because they didn’t have a perinatologist.  Why can YOU, a referral lady, can tell me I’m too healthy to see a perinatologist???? I insisted and insisted to call the endocrinologist.  The lady at first refused but finally gave in.  The endocrinologist was crystal clear: I need to see a perinatologist.  So reluctantly, she processed my referral.

At the perinatologist’s office, however, I was told that there is no particular genetic implication with my Grave’s disease (by this time, blood test showed that I have antibody that stimulates my thyroid to cause hyperthyroidism).  So, in one sense, the referral lady was correct. Only complication she might see was that because my thyroid stimulating antibody (called TSI) was so high that baby’s thyroid might be stimulated and enlarged.  If the baby’s neck was enlarged, he might have trouble going through birth canal.  She told me that there are three ranks of obstetricians – regular obstetricians who handles healthy pregnancy, high-risk obstetricians, and perinatologists, who handles the highest risk for both mother and baby.  She thought I was more appropriate for high-risk obstetricians, but she’s willing to take me as patient.  So without hesitation, my husband and I decided to have our baby delivered by one of the perinatologists at UC Davis medical center in Sacramento.

It was quite different from the birth I first envisioned, but the baby’s health is the first and foremost priority.  I was happy with it.

The rest of the pregnancy was rather stable.  My thyroid hormone was brought to normal in about three months and the doctor was monitoring things really well. We were so excited when we were told that the baby was a boy.  I knew that our parents in Japan would ask for a boy, as the tradition goes.

I kept working in the lab.  As my belly expanded sometimes I cannot reach stuff but my lab mates including my husband were very kind and helpful.  In one occasion, K kicked my bladder and without realizing, I wetted my chair!  I thought the water was broken.  Well, false alarm. And due date was near.

And passed.  My husband started to get so irritated.  So was I.  My mother was happy about the delay, because she wanted the baby be born on my father’s death date, believing he is reincarnation of my father (eventually he was born three days after my father’s death date).  But I wasn’t.  I couldn’t wait to see my baby.  So I did the only think I could in such a mental state: knitting.  I started and finished a full size knitted afghan in three days!  My husband did something more surprising – he sewed a computer bag from old pair of jeans!  He had never sewn anything.  And ever since.  So he must be so out of character back then.

A week later, the doctor checked my fluid and noticed getting lower.  So she sent me to the hospital to induce labor.

To be continued.


Journey with K: pregnancy and birth #1

I cannot forget the excitement when I saw the positive line on the pregnancy test! I think many mamas can relate to that.

I was a graduate student in University of California, Davis back then.  So to confirm and start prenatal care, first I went to the student health center on campus.  My health insurance required that.   After I gave my urine cup in the lab, I was waiting in the exam room when a nurse practitioner entered. Nurse practitioner was somewhat nervous: not surprising, probably she had given many pregnancy diagnosis to many women who did not wish.  She first placed a piece of paper on the desk.  Nothing was written.  Then in a nervous face, she asked, “do you intend to get pregnant?” and I said “YES!!” then she flipped the paper that had a big “+” mark, “Congratulations, you are pregnant!”

This was actually only the second time I went to the student health since I came to the US.  I didn’t see a doctor for five years!  I had no idea about the complication of health insurance system in the US then.  Now that side of journey had started, too.

The referral person asked me where do you want to give birth.  Without much thought, I chose the nearest and only hospital in town.  The she arranged the first prenatal appointment and there my husband and I went.

I saw a nurse midwife.  She explained that in the hospital’s birthing center, they offer water birth with midwife.  That sounded very cool!  Both my hubby and I were very excited of that and I started to imagine.  Then she started physical exam.  Touching my neck, she said, “Hmmm…it’s a bit large.  Do you have thyroid disease?” I said “No”. And she started to tell several symptoms like loose stool, fatigue, etc….I had them.  I blamed my loose bowel to alcohol, and fatigue for lack of exercise.  To overcome, I walked about an hour in the morning and by the time I arrive at the lab, I was exhausted and ended up resting in the backroom of women’s restroom. Only solution I thought was, “I need to do more exercise.”

But suddenly what midwife told fit into pieces.  She ordered thyroid panel blood test and we left making the appointment for the next prenatal visit.  Then the next day, the hospital called me that I have hyperthyroid and they can’t deliver my baby because it was such a high risk, and that another hospital in the same group about 40 minutes drive from where I live, can.  She also said that I need to see an endocrinologist.  The hospital group didn’t have an endocrinologist locally, so they suggested to go see different medical group, run by UC Davis.

Now I came back to the referral room in the student health. This time my heart was heavy.  There was only one endocrinologist in town so they arranged appointment to see her.  At the first appointment, she told me what I already knew: I have hyperthyroidism and my pregnancy is high risk.  She made a referral to a perinatologist, who is very famous for her genetic diagnosis work.  Well, I knew a thing or two about genetics: I was a Ph.D. student in molecular genetics then.  But what happened at the molecular level and what was happening in my body were somehow disconnected.  The endocrinologist immediately started on Propylthiouracil – or PTU for short – second commonly used medication for hyperthyroidism.  Most commonly used one is methimazole, but because it was teratogenic, I couldn’t take it.  Suddenly, I started studying FDA’s pregnancy category – both PTU and methimazole was category C – that is, unless absolutely necessary, the medication shouldn’t be used during pregnancy.  I was devastated.  Did I have to give up this pregnancy?  Will I have miscarriage?  I was overwhelmed with these ideas.  Anyway, she ordered additional blood test and I left.

The next thing was to see a perinatologist.  I had to go back to the student health again to get referral.

To be continued.


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.


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.


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?”


Tag Cloud