mama whose curiosity knows no bounds

Archive for the ‘Disabilities’ Category

lupus flare and prednisone and self-hate

For the last few days I’ve been really sick. I think I did my best to calm my angry immune system down and recover. Basically, I rested whenever I can.

For whatever reasons, I’ve been having more flare-ups than , say, a few months ago. Maybe my synthroid is not enough to manage my hypothyroid from thyroidectomy. Maybe I’m too busy doing stuff. Maybe because since S started middle school, it’s been difficult to go to walk track to exercise. Maybe I’m too involved with emotional discussion in Facebook. Just maybe.

Yesterday it was overwhelmingly hard so I had no choice but stay in bed all day. I had an event I must attend in the evening so I need to recover even for a little bit for that. Thanks to the bed rest and Vicodin, which I take very sparingly, I was able to function at the event. One stuff on the list down.

Then this morning, pain and fatigue is back again. Also today is my Fosamax day. I wake up before 6 am and take Fosamax then stay upright for 30 minutes. Usually I lean on couch and pretend to be awake, but I even couldn’t do that. Nausea and pounding headache was added to the mix. Only after that Fosamax time, I could take my morning medicine, which include tramadol and etodolac to control pain and inflammation.

Today simply that was not enough. Last week I was sick so I canceled my visit to my son, K. So I MUST GO SEE HIM NO MATTER WHAT. Then I gave in the temptation—-I took some extra prednisone, which guarantees to bring back energy and reduces my joint pain. My rheumatologist prescribes some extra prednisone for that purpose.

Now the self-hatred kicks in. I feel like a drug addict trying to recover and relapsed. Since I already have osteoporosis, I’ve been making a conscious effort to minimize prednisone. And trying to replace it with much healthier option — rest. I tend to do more than I can handle, so saying no and setting aside some time to rest both emotionally and physically was something I  worked hard to achieve. 

Now I’m letting my schedule taking over my rest and taking that magic pill. At the expense of my bones and probably pancreas. Well, of course my son is worth giving up some bone health and I can work to catch up with exercise. Still, my effort for the last few days to rest was replaced by the magic pill. I feel defeated, as my energy level goes up. 

All I can do now is get off of it very quickly, though it will take at least a week.



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.



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.


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.


My First Post – shouts in a well

Well, this is my very first blog post.  Let me introduce a bit.  I’m a Japanese mom in late 40’s.  I have a husband, a son, and a daughter.  My curiosity is endless – thus the blog title, “Boisterousmama”.   Or just totally unfocused.  Anyway.  I’ll post whatever I’m up to.

My dominant interests are, as a mom, of course, parenting.  But in my case it’s twisted.  First, my son is severely autistic and lives in a group home.  Second, my daughter is gifted and does gymnastics.  So my parenting interest expands to special education, gifted education, gymnastics, autism/disability advocacy, etc.  Of course I still deal with a “regular” stuff like puberty and teenage (my daughter is a tween) issues, too.

Being a mom is a huge deal and occupies a huge proportion of myself.  But I’m other things, too.  For my wage earning, I am a molecular biologist.  My hobby is mostly crafts like sewing and knitting, but I’m also a novice learner of blogging and programming (oh, sooooo novice).  Then I have a bunch of diseases — lupus, fibromyalgia, osteoporosis for a starter.

So I can post on any of it.  If you are interested in what I post, read and comment, if you don’t, just ignore it.  But I know this first blog is like barbar’s scream in the well “king’s ear is donkey’s ear”…..


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