Tuesday, February 27, 2007

An update

Here's an update:

  • Hernia vs. hydrocele
  • My continuing autism research
  • Potty-training progress
Hernia vs. hydrocele

AF took JF to his consultation appointment with the surgeon yesterday. His name is Dr. Buck. (AF loves to say the name with a twang.)

Our understanding for the past two weeks has been that JF has a hydrocele, and not a hernia. From what I've read about hernias and hydroceles, the only way to determine which one a boy has is to shine a light through it. If the light is blocked, it's a hernia (intestines). If the light isn't blocked, it's a hydrocele (fluid). Hernias are dangerous, because of the risk of strangulation, but hydroceles are relatively harmless. Both need surgery.

When AF called me at work after the consultation, he said that Dr. Buck had said that it's a hernia. I asked whether the doctor had shined a light through it. No. My anxiety about this upcoming surgery went through the roof. Of course, at this point, it was too late in the day to call Dr. Buck myself.

So I did my best to sleep on it, and called Dr. Buck's office this morning. I told the lady who answered the phone how I feel like a ping-pong ball between doctors diagnosing my son's problem as a hernia, then a hydrocele, and then a hernia again. She said that the two are very close and that JF's diagnosis is definitely hernia. When I asked about using light to diagnose a hernia or hydrocele, she said she's never heard of it. She said that Dr. Buck diagnoses hernias and hydroceles by the way they feel, and he's been doing it for years.

I guess, at this point, I decided to just trust these people. I asked her whether the change in diagnosis means anything different in the surgery. She said that it's still outpatient surgery, still home the same day. She said to keep him home from daycare one full day after the surgery. (Based on DDM's account of her son's recent surgery, I'm guessing we'll need to keep JF home two full days after the surgery.)

Then the lady asked whether I want to schedule the surgery now. Gulp. I passed the buck. I told her to call my husband, because he'll be the one to chauffeur the boy to and from the surgery. After I hung up the phone, I started to worry about whether I should take time off work to go with them.

And I still hope these people know what they're doing.

My continuing autism research

The bookstore called a few days ago, to say that the Children with Starving Brains book I had ordered had come in. On my way home from work today, I stopped by the bookstore and looked it over. It was a used copy, with pencil marks all through it. I asked the cashier why am I being charged $40 for this? He said it was low supply and high demand.

I decided to buy it, because I was afraid I'd always wonder about it if I didn't. Fortunately, I still had a gift card with more than enough on it to pay for the book.

I haven't started reading it, but I'll find the time somehow.

Oh, and we still haven't picked up the two Out of Sync books from the library yet.

Potty-training progress

JF is almost reliable now about peeing on the potty, but he has pooped in the potty only once, and that was at daycare over a month ago. We had pretty much resigned ourselves to cleaning poopy underwear for a while.

After JF ate dinner tonight, he climbed down from his chair and squatted on the floor. Most of the time, we don't notice that he is doing this until it's too late. This time, I saw him get into position.

Without hesitation, I said, "Time to sit on the potty!" He gave token resistance, then allowed me to lead him to the bathroom. He dawdled a bit before taking down his pants and sitting on the potty. Then he peed in the potty and said, "All done!"

I worried for a moment that I had read the signals wrong, but persevered.

I handed him a Craftsman tool catalog that AF had left in the bathroom and suggested that he sit there and look at it for a while. I told him, "Maybe you can push the poop into the potty while you're looking at the catalog."

He enjoyed looking at all of the wrenches and storage chests. After a while, he stopped turning pages, and had a pensive look on his face.

Then, certain sounds and smells indicated success!

JF pooped on the potty!

I called AF into the room and we both clapped and cheered for JF. After a moment of confusion, he started smiling and cheering, too. When I cleaned him up, I marvelled out loud how easy it was to wipe him clean. When he pulled up his underwear, I pointed out that his underwear was still clean.

He earned three M&Ms right away. Later, we gave him a bowl of ice cream. By then, he was doing his own crowing: "I pooped on the potty!"

I want to shout it from the rooftops, but it's cold outside and I'm afraid of heights, so I'm blogging about it instead. :)

Thursday, February 22, 2007

Why did I wake up at 2:00 AM?

I woke up at 2:00 AM worrying about too many things. I'm not sure which one woke me up, but they took turns nagging my brain until I got up and wrote down my anxieties:
  • The recommendations for home staging
  • How I told my boss that I'm moving
  • The latest poop incident
  • My high school memories of special-needs kids

The recommendations for home staging

On Tuesday, while I was at work, a lady came to our house, took pictures, and took $250.

That's my tired attempt to make a joke out of home staging. AF was at home to show her around and write the check. Then she sent us a link to an online photo album, with her recommendations as a caption under each photo.

Some of her suggestions were expected and acceptable: Repaint the walls, refinish the floors, and pack away the clutter. However, AF and I will need to discuss some of her other suggestions. For example, she recommended that we move JF's easel from the living room to his bedroom. The problem with this is that JF requires supervision while using the easel, and it's easier to supervise when the easel is downstairs. We don't want him to leave his mark on newly painted walls!

So we'll need to figure out which of the recommendations we should heed to the letter, which ones we should compromise on, and which ones we should ignore. I'm making a spreadsheet to sort these out.

How I told my boss that I'm moving

Also on Tuesday, I told my boss that I'm planning to move to Howard County within the next few months, which will increase my commute from 20 or so minutes each way, to an hour or more each way. I told her that I intend to stay with the company until the current project is done.

I think my boss is a nice person, but sometimes it's hard to read her. I couldn't tell whether she was happy for me or angry that I'm leaving.

I asked about regular telecommuting, but she said, "Not gonna happen." So I dropped the subject with, "Oh well, we'll just see how it goes, then."

Later in the day, I asked my boss whether all of my stock options will expire when I leave. She said she'd find out for me, and then asked when I'm planning to leave.

Why did she ask me that? Did she not understand that I was leaving when I told her the first time? Did she think she was going to get a different answer? I had already given her the only answer that I can give!

I held in my temper, and repeated: "I will be moving in the next few months. Then I intend to stay until the current project is done." I refuse to be baited into making a promise that I can't keep!

I don't know how long it will take to prepare this house for selling, or how long it will take to sell, or how long it will take us to move, or how long I can stand an hour-long commute for a job I don't enjoy anymore. I don't know what the future holds for the current project, but I know that software projects can be delayed, and delayed, and delayed. All I know is that I owe it to my friends to do my share of the work for this project before I leave.

Not being able to telecommute regularly will probably shorten the amount of time that I can stand to stay, but I shouldn't have to spell that out for my boss.

The latest poop incident

When I came home from work last night, AF told me that I had missed a good one.

JF had been playing upstairs while AF was trying to find something on the computer downstairs. Suddenly, AF heard the toilet flushing. AF ran up the stairs, worried about what might have been lodged in the drain pipes.

He found JF with his pants off, the toilet apparently plugged up, sopping wet and poopy underwear hanging over the edge of the toilet, and poop everywhere.

AF's recounting of this incident had me hiccuping with laughter.

We knew JF had watched how we respond to a poop accident: We dump poop from his underwear into the toilet, gingerly rinse the poopy underwear in the toilet, and flush while maintaining a grip on the underwear.

But we didn't know JF that was capable of mimicking these actions!

My high school memories of special-needs kids

When I was in high school, a girl named Tina sat next to me in one of my classes. Looking back now, I think she had Down's Syndrome. She often had headaches, and would occasionally lean her head on my shoulder. She told me about kids who teased her, and I tried to be supportive. But I never went out of my way to be nice to her.

There was another special-needs kid that I met briefly, but the circumstances weren't ideal. I had my lunch tray and was looking for a place to sit. As I walked past one long table, a few of the kids sitting there invited me to sit down. This had never happened before. I was wary, but I sat down.

If I remember correctly, it was a mixed group, boys and girls. They started talking to me about how hard it is to play the dating game. They asked me what kind of guy I was interested in. I may have said something like, "Tall, dark, and handsome." I may have added that I would like to meet a bookworm like myself.

Then they introduced me to a young man sitting in their midst. I don't remember whether I even noticed him until they pointed him out. He may have been sitting in a wheel chair. I think he didn't have complete control over his arms, legs, or mouth. Maybe he had muscle spasms. I definitely remember dark hair, large glasses, and his mouth hanging open.

I honestly didn't know what was going on until they started explaining how this young man was exactly what I was looking for. The young man was looking at me with a hopeful smile.

I felt betrayed, humiliated, and trapped.

I tried to think of a way out, that wouldn't hurt the young man's feelings. But while I tried to think, my reaction was already starting to hurt him. His smile had disappeared, and I could see tears in his eyes. I stood up, took my tray, and said to the young man, "These people are not your friends. They are tricking both of us. I'm sorry." Then I walked away as fast as I could.

I was not mature enough to humor them, face my fears, and give the young man my friendship. I regret my behavior back then, to both of these special-needs kids.

Now I look at my son and worry about his future. Will he have bullies? Will the majority of his classmates ignore him? Will he have any friends?

We'll find out eventually, I guess.

Monday, February 19, 2007

My weekend

I have a lot to share again:

  • Buying the Jessup house
  • Visiting the library
  • Visiting brother-in-law
  • Allowing JF to "help"
  • Visiting the mall
  • Watching shows about autism on TV
  • Having a liesurely Monday morning
Buying the Jessup house

My husband has determined that we can afford to buy his brother's Jessup house! Yay!

So now we need to figure out how to sell our Gaithersburg house and how to move all of our crap. I'm excited, but also overwhelmed. AF is taking this whole week off of work to prepare the house. We need to refinish the wood floors and repaint the walls. We need to put a lot of stuff into storage so it won't look so cluttered when potential buyers see it. AF's brother said we could move stuff directly to the Jessup house, to save money on storage. (Ain't family grand?)

AF has also decided to pay $250.00 for home staging. I'm not convinced that this is necessary, but AF feels strongly about it, so I haven't raised a fuss. The real estate agent said that we'll get the $250.00 back at closing. I think maybe we should get that in writing.

I think it is now time to tell my boss that I'm planning to move. I'd had the impression that it would be a bad idea to tell her too soon. But now that it is more definite, and we have all this work to do, it will be harder to avoid the subject. I will reassure her that I intend to stay until the current project is done, because I don't want to abandon my friends when they need me. However, I will ask her for permission to work from home on a regular basis (maybe two days per week), considering my increased commute.

We're allowed to work from home occasionally, such as during inclement weather, but we're not allowed to do it on a regular basis. At one point, over a year ago, my boss allowed a few writers to telecommute regularly. This was before I had Internet access from home. I signed up for Internet access, planning to start working from home regularly like the other writers. My boss knew about my plans. But then her boss learned about her policy, and changed her mind. His argument was, if we writers were allowed to work from home regularly, then he'd have to allow his developers to do it, too. And he didn't trust his developers to maintain their productivity at home. My boss didn't put up a fight. So that was the end of that.

One of the writers on my team asked for special permission to work from home regularly, considering her long commute. They didn't give her permission. So she switched to a department that does allow regular telecommuting. We're still hurting from the loss of that writer, but the developer boss doesn't care. He seems to think we can handle four times the documentation with half as many writers.

So I will be surprised if I get a special dispensation to telecommute regularly, but it can't hurt to ask.

Visiting the library

I'm embarrassed to admit that I'm not familiar with the library system. When I was a kid, my mom took us to the library often, and I had always pictured myself doing the same. But when I started living on my own, I discovered that I could afford to buy any books that I wanted to read, and stopped going to the library. I'm proud of my own personal book collection (even though it will be a pain to move it all to another house). When JF was born, he was given so many books by family and friends, that we haven't needed to go to the library.

When JF's PEP teacher came over for the home visit, I told her that I've ordered Children with Starving Brains from the bookstore, she suggested that I check out books from the library first, so I don't end up buying a book I don't like. I don't think she was criticizing that book. I think she was just making a very practical suggestion. She also suggested that I look for Floortime by Greenspan, Out of Sync Child by Kranowitz, and Out of Sync Child Has Fun by Kranowitz.

Another reason for going to the library has come up: We're planning to move. To help JF deal with the trauma of moving, I decided to check out some books for him about moving. After all, it would be wasteful to buy books that we won't need for very long.

Last Sunday (the 11th), I managed to take JF to the library. (I learned the hard way that the Gaithersburg branch doesn't open until 1:00 pm on Sundays.) A nice librarian found a bunch of books about moving and I checked them out. It wasn't until we were on the way home, and JF was asleep, that I remembered that I'd wanted to look for the Floortime and Out of Sync Child books. Doh!

This past Saturday morning, I found the online catalog for the Montgomery County Public Library. I searched for the three books that JF's PEP teacher had recommended. Floortime was "in transition" at one library and checked out everywhere else, so I gave up on that book for now. The two Out of Sync books weren't available at Gaithersburg, but they were available at several other libraries.

AF volunteered to take JF to the Olney library and pick up the two Out of Sync books. I was worried that they might be unavailable by the time he got there. Then I discovered how to put a hold on these books at Olney. I even called the Ask-a-Library number to make sure I was doing it right. The man I spoke to said, if they are available at Olney now and I put a hold on them at Olney, they should be available for my husband to pick up when he gets there. So we tried it.

AF called from his cell phone a short time later, saying that the two books are in transit. They apparently had to be shipped from the Ashton library to the Olney library. If I were the swearing type, this would be a good time for it.

Maybe I've spoiled myself, getting all of my books from the store all these years. Maybe I'm expecting too much from the public library system. But I'm very annoyed with it right now.

Visiting brother-in-law

On Saturday evening, we went to dinner at my brother-in-law's house. This is the same brother-in-law who wants to sell us his Jessup house. He and his wife have nearly finished fixing up their new house in Columbia, so they invited the whole family to come see it. Their house is beautiful.

JF has two cousins his age, but they are both girls, both neurotypical, and both loud. When these girls went downstairs, JF came upstairs. When the girls came upstairs, JF went downstairs. I think he likes his cousins, just not all at once.

I also noticed one of the older cousins' reactions to JF. This cousin is about nine years old. Whenever JF said something, she would look at him as if he had just sprouted horns, and then look at me for an interpretation. I asked her if she's ever heard of autism. She had not. I told her that we think JF might have autism. She asked what autism is. I said, "Kids with autism speak differently and maybe even think differently than we do." I don't know whether she understood, but at least she stopped giving JF funny looks.

When one of the same-age cousins sang a song, everyone clapped. Without even thinking about it, I tried to encourage JF to sing a song he's been practicing lately: "I've got sunshine, on a cloudy day...." He sang a few words here and there, but didn't sing as well as he usually does. On the way home, I discussed it with AF. I said that the girls have no trouble saying, "Look at me! See what I can do!" But JF doesn't do that, and I worry about him getting less attention from his aunts and uncles. AF pointed out that it seemed too contrived, and asked whether I really do this for JF's benefit or my own. I would like to think I do it for JF's benefit, but now I'm not sure.

Allowing JF to "help"

Every weekend, I make several peanut butter and jelly sandwiches and put them in the freezer for JF's lunches for the week. This time, I allowed JF to help. It's a good learning experience for him, but it's hard for me to ignore the imperfections. For each sandwich, I put a dollop of jelly on one side and a dollop of peanut butter on the other side. I gave JF a dull knife and showed him how to spread the jelly. Then I had to restrain myself from "correcting" JF when he wanted to spread the jelly from one slice of bread onto another slice. I had to tell myself, "It really doesn't matter."

JF also stretched the definition of "spread" to include poking the bread with the knife. I had to draw the line there. I told him, "No cutting" and showed him how to spread again. In the end, he worked on two sandwiches, while I made the other sandwiches, and then I finished up his two sandwiches for him. Then I held baggies open while he dropped in the completed sandwiches. I gave him a hug and told him that he's a good helper.

There really wasn't as much of a mess to clean up afterwards as I had feared. I guess this is as much of a learning experience for me as it was for JF!

Visiting the mall

Yesterday, my sister (Sister2) and her daughter came to visit. My niece will turn thirteen this week. Niece asked me what kind of teenager I think she will be. I guess she worries about what other people think of her. I told her that she will be a good teenager. Niece seemed happy with that.

Sister2, Niece, JF, and I went to Cartoon Cuts at the mall. JF and I both got much-needed haircuts. At some point today, I'll ask AF to take a photo of JF and me with our new haircuts. However, we don't have a digital camera, so it might be a while before this photo shows up on this blog. And I have the impression it will cost me something to post a photo. I need to find out about that.

We intended to take JF to the play area in the middle of the mall after the haircuts, but this area was occupied by a Lunar New Year celebration. We could hear the performance and see glimpses of a dragon, but there were too many people for us to see anything else.

Then I suddenly realized the mall was crowded. Aack. I hate crowds. I don't know whether it had been crowded the whole time we were there and I just didn't notice until that point, but it seemed to become crowded suddenly. We skedaddled away from the performance.

I treated the four of us to Cinnabon. Mmm. I generally don't like to cook, but I want to try making cinnamon buns someday. We were almost done eating when Niece announced she needed to use the bathroom. That reminded me. I asked JF, "Do you need to go pee?" He thought for a moment, and said, "More sit on the potty?" That's his way of saying, "Yes!" I asked Sister2 to watch our stuff. When JF stood up, I noticed he was already walking like a cowboy. I grabbed the bag of JF's spare clothes (we still call it a diaper bag), took JF's hand, and told Niece to take his other hand. Then we plowed our way through the crowds to the bathroom. Most of the people apparently saw the look of determination on my face and got out of the way.

Unfortunately, JF's pants were already drenched by the time we reached the family bathroom, and he didn't have any pee left for the potty. And I didn't have any wipes. So I stripped off everything from his waist down, wiped him down as well as I could with toilet paper, and redressed him in clean clothes. One of his boots was damp, but we didn't have any spare shoes. I had to just put the boots back on him. And JF kept flushing the toilet. I yelled at him for that. Normally, I'm not so quick to yell at him, but the crowds had me in a dither.

I like the bathrooms in this mall because there are smaller toilets and lower sinks for kids like JF. But this time, the place was a zoo. And there wasn't any soap.

We eventually managed to make our way back to Sister2, bundle up, navigate the stairs (escalators scare me), and head out. And it was snowing. Haven't we had enough snow?

By the time we got home, JF was asleep and I was exhausted. Is a haircut really worth all this hassle?

Watching shows about autism on TV

I generally don't watch much TV, but I have two favorites: House on Tuesdays and Extreme Makeover Home Edition on Sundays. So I was already planning to watch TV last night. Then I noticed a blogger comment (I can't remember where) that said there will be two shows about autism on TV on Sunday: 60 Minutes at 7:00 PM and Extreme Makeover Home Edition at 8:00 PM.

I managed to watch both, but didn't really learn anything new.

  • I think Leslie Stahl may have made an over-generalization on 60 Minutes about vaccines, but I'm not sure. I'm glad that the doctor they featured is trying to find a way to detect autism early. But I worry that people who don't know about autism will conclude that you can diagnose autism by calling the child's name and seeing whether he obsesses over a particular toy. It's much more than that.
  • On EMHE, the cast seemed to be stressing the importance of getting it right this time. And I wondered about the dad, who had been working two jobs to support his family. Now that their mortgage has been paid, does he still need to work two jobs? If not, will he be able to handle more of the parenting now? The EMHE cast didn't mention anything about counseling for either of the parents, but I think the dad could probably use some help adjusting.

Having a leisurely Monday morning

Today is President's Day, so I have off from work and JF doesn't have his PEP class. AF was already planning to take off this whole week. So AF made banana pancakes this morning, and we had a nice leisurely breakfast.

We thought the daycare was closed today, too. But when AF stepped outside to smoke, he could see cars in the daycare parking lot and hear kids yelling. Hallelujah, JF is going to daycare today!

I think this is the first time that AF and I have both had a day off of work while JF was at daycare. My goodness, what will we do with the time? :)

Friday, February 16, 2007

Kadri Atalay is a friend of mine

From the Washington Post:

A 29-year-old District man was killed early this morning when his car was struck head-on by a sport utility vehicle speeding on the wrong side of Wisconsin Avenue NW, D.C. police said.

The driver of the SUV, 42-year-old Kadri Atalay of Gaithersburg, was charged with second-degree murder in the crash, D.C. police spokesman Sgt. Joe Gentile said.


Kadri is a kind and intelligent gentleman, and it's hard for me to reconcile the person named in the news articles with the person that I know. Apparently, he made a deadly mistake.

My mom died in a car accident when I was 19, and there may have been alcohol involved. I can't remember the details of the trial afterwards. But even before my mom's death, I have had strong feelings about drunk drivers. When I heard the news this morning about Kadri, I was very upset. I still am.

I don't know what might be going on in Kadri's life, or what led him to the situation he is in now. But I hope that he can find the strength to endure the results of this accident. He will have to carry this with him for the rest of his life.

I grieve for the man who died, and I pray for his family. But I also pray for my friend, that he finds support, in spite of his mistake.

Wednesday, February 14, 2007

Snow

We have ice on top of snow on top of ice. I think the decisions of various powers-that-be reflect how much they value the safety of their employees:
  • Montgomery County schools are closed, which means JF has no PEP class today.
  • JF's daycare is also closed.
  • The federal government is open on a two-hour delay policy, and my employer follows the federal government.

Good thing I brought my laptop home last night, so I can work from home today.

I think the each county government should have control over response to inclement weather. If a county is closed for snow, everyone who lives or works in that county should stay home, except emergency personnel. With fewer of us on the roads, there would be fewer accidents and the road crews can clean up the mess faster.

Tuesday, February 13, 2007

Freedom to Marry Week

I noticed that two of the blogs that I like to read currently have posts about Freedom to Marry Week: O for Obsessive and tied to my apron strings. I don't know why it took two to convince me to write my thoughts about it, too.

I believe that people should be allowed to marry whomever they choose to marry, as long as they are both adults. I believe that love knows no boundaries.

Several years ago, I asked my dad why he didn't like gays. With a pained look on his face, he said that the Bible says, God ordered us to "Go forth and multiply."

After a couple of years, I summed up the courage to bring it up again. This time, I pointed out that Earth is crowded, we're using up resources at an alarming rate, and many plant and animal species are going extinct because of human carelessness. (I knew he would agree with all of this.) At what point can we assume that we've done enough multiplying?

By this time, he had mellowed out a little and we were able to discuss the issues philosophically. I'm hoping that he (and many other people like him) can work past his upbringing and become more tolerant of differences.

Hernia? Hydrocele?

Last Thursday or Friday, when helping JF in the bathroom, I noticed that he's not as symmetrical as he used to be. I've never raised a little boy before, and I don't know much about normal male development, but this seemed odd. I asked AF to take a look at him. AF took a look and agreed that something wasn't quite right. Yesterday morning, AF called the pediatrician about it and made an appointment for 5:00 last night.

I was still at work when AF called me at 5:30 to say that he's taking JF to the ER. The pediatrician who saw JF had said it looked like a hernia. She said that if the ER doctor can't push it in, they'll have to do surgery. For an hour or two, I fretted. I looked up hernia on WebMD and Wikipedia. Based on what I had seen, I figured it was an inguinal hernia. I sent an e-mail message to my dad and all of my siblings about it and told a handful of co-workers about it.

Then AF called again to say that it's not a hernia. It's a hydrocele. But JF still needs outpatient surgery to repair it. The ER doctor gave AF the name and number of a surgeon and said to have JF seen this week. We figured it wasn't as bad as a hernia, but we thought it was still an emergency.

I looked up hydrocele on WebMD and Wikipedia. On the Wikipedia page for hydrocele, there is a Further Information link to a diagram that helps to explain it. Based on what I had seen, I'm guessing it's a non-communicating hydrocele. He's apparently had this all his life, but it wasn't noticable until now.

This morning, AF called the office of the recommended surgeon, and was told that the earliest JF could be seen is the 26th. What?! Isn't this an emergency?

Apparently not. AF accepted the appointment for the 26th, and then called JF's regular pediatrician. Dr. Strahlman said that it's okay to wait until the 26th and JF can continue going to daycare and PEP with his hydrocele, but we need to keep an eye on it. Since then, I've also heard that many boys have this.

I sent an update message to my family and co-workers. I was embarrassed about the false alarm, but all responses were supportive.

I'm also frustrated that my poor little boy has had one thing after another for the past two weeks: first the stomach virus, then the fever virus, then a head cold, and now a hydrocele. It would be nice if he could have a few weeks of health between each illness.

JF doesn't seem to be in any pain or discomfort due to the hydrocele, but he likes to play with it. It's a new toy to him!

I just hope that he's not traumatized by the surgery.

Saturday, February 10, 2007

This is going to be a long one, because I have a lot to share today:
  • An update on JF's health
  • Observing JF in his class
  • Enjoying a home visit
  • Solving a mystery about JF's behavior
  • Progress on dealing with autism
  • Weekend plans

When writing, I habitually type Ctrl+S after each sentence or so to save my work, because I never know when something will go wrong. Unfortunately, Ctrl+S is the key combo for Publish in Blogger, so I end up publishing my post before it is finished. So I will put a "To Be Continued" at the end until I'm done.

An update on JF's health

JF is all better now, except for a stuffy nose and cough, which may just be allergies. Throughout the day on Wednesday, we took JF's temperature three times, and he stayed below 100.0 F, which is the daycare's threshold. He attended daycare and PEP on Thursday and Friday. Finally!

On Thursday morning, as I was getting him bundled up to go to daycare, he started acting strangely. He seemed worried about something, sticking his lower lip out like he was about to cry. I asked him what was wrong, but he wouldn't/couldn't tell me. When I dropped him off at daycare, he started bawling. I couldn't figure out what was wrong, so I gave him his usual hug & kiss, and said goodbye. I didn't figure out this mystery until Friday morning.

Observing JF in his class

Both AF and I managed to observe JF in his class on Thursday. I took my laptop home Wednesday evening so that I could work at home before and after this appointment. This worked out so well, I think I'll do it more often.

We watched from another room, behind a one-way mirror, for just over an hour. (This hour was over way too soon!) After JF worked on a workbox, a teacher helped him work on a puzzle, which involved recognizing colors and tall/small.

Then it was Circle Time. They sang an ABC song to the tune of Jeopardy; They took turns activating a toy snowman that danced and sang "Let It Snow"; And they played a game of fishing for letters. When JF was asked what letter he caught in the fishing game, he was guessing everything except the correct letter. His teacher later told me that when there is too much noise, he doesn't pay attention to what he is seeing.

Then the speech therapist worked with JF on the Lego table. They worked on tall/small and sorting by color. She also encouraged him to say, "I want ___ please." With each word, she held up a finger, as if she were counting. She later asked us to do the same at home, and not allow him to just say, "More ___."

JF's main teacher and speech teacher came back to visit us behind the mirror occasionally, to discuss what we were seeing. Many suggestions were given to us: When offering him a choice, back away a bit, to make him put more effort/thought into it. At dinner, say, "I have pizza, what do you have?" to prompt him to ask for pizza. When he is drawing, ask him to draw a snowman or house.

We discussed his staring spells again. I asked whether it's different than other kids. They said it definitely is different. Also, they have noticed that JF's pupils are often dilated. We speculated that this is due to his Zyrtec or Pulmicort.

Enjoying a home visit

We finally had our home visit on Thursday evening. JF's teacher gave us a lot of stuff and stayed for a whopping two hours! (I love this teacher. When JF moves on to another teacher, I will be very sad.)

She gave us:

  • A workbox with magnetic uppercase and lowercase letters.
  • A plastic notebook with many picture communication symbols. There were big ones attached by velcro and two laminated checklists with smaller pictures for JF's morning and evening routine.
  • JF's progress report. (In case you don't already know, code one is not addressed, code two is not making sufficient progress, code three is making sufficient progress, and code four is achieved.) Last quarter, he had two code ones, three code twos, sixteen code threes, and zero code fours. This quarter, he has zero ones, zero twos, seventeen threes, and four fours! One of his fours was "express wants and needs to request help" and another was "express wants and needs to comment on recent experience, for example: 'I'm done.'"
  • Recommendations for books/activities that we could order that would suit JF.

She also answered many of our questions about treatments and therapies that I've recently read about.

  • With the caveat that she's not a physician, she said JF probably doesn't need any kind of medication or the GFCF diet. Since a digestive problem is a symptom of milk/flour sensitivity, we talked about JF's output. JF's pooping is variable in frequency and consistency, but this is probably due to his frequent illnesses rather than anything else.
  • She hasn't worked with Irlen lenses, but it's worth a try.
  • Regarding ear plugs to block certain frequencies, she pointed out that we should consider how often JF has had ear infections and find out whether plugs might make that worse.
  • I told her that I've ordered a used copy of "Children with Starving Brains" and she recommended that we preview books at the library before we buy them. She also recommended "Floortime" by Greenspan and "Out of Sync Child" & "Out of Sync Child Has Fun" by Kranowitz.
  • I told her that I went to the DAN website and found the list of participating physicians. I printed the list of doctors in Maryland and checked for each on on my health insurance website. Of the ones in the network, there was only one pediatrician. I had already called that one doctor, and he had said to find out whether any of JF's vaccines had mercury in them. I had not started to do this yet. JF's PEP teacher said that this means the doctor would want to try chelation. I'm not ready to try chelation yet, so I won't bother to find out about the mercury until I'm ready.

JF's PEP teacher gave me the name of a developmental pediatrician that she trusts, Dr. Robin Chernoff of Children First Pediatrics. She suggested that I try Dr. Chernoff before I try the doctor that I had found on the DAN website.

She said that JF is still at parallel play, and suggested that we sign him up for a weekend fun fit type class. I asked about playdates with his PEP classmates, and she said that the parents of one of his classmates might be willing. We could arrange to meet at a playground. She suggested that we also ask about this at daycare.

I also mentioned that I want to sign up JF for another music class, perhaps the next level up from what he attended in the Fall. She said that's fine, as long as it's active and social. I'm worried that this may be a point that she and I disagree about. In Temple Grandin's book "Thinking in Pictures", she recommends encouraging an autistic child's interests and skills, rather than focusing exclusively on his weaknesses. I want JF to learn how to read sheet music and either play an instrument or sing well. I don't want to push him too hard in this direction, but I want him to have this as a hobby, if only for stress-reduction and self-esteem. His PEP teacher wants everything he attends to improve his social skills. We may be able do both for now, but I don't want to lose the opportunity to teach him music while he's young enough to absorb it.

There was much more, but I worry about going on too long. Overall, it was a great two hours. :)

Solving a mystery about JF's behavior

On Friday morning, as I was getting JF bundled up to go to daycare, he started acting worried again. This time, it occurred to me that he might be disappointed that he never had his usual weekend. I said to him, "I think I know why you are upset." He listened intently. I asked something like, "Is it because you never got to play outside this weekend?" He burst out crying.

Aha! That's why he was acting strangely. He's starting to understand (and rely on) the concept of weekend. And he can understand far more than he can say!

I gave him a hug and told him, "I'm sorry that you didn't get to go to the playground or the mall over the weekend. You were too sick! But you know what? Tomorrow is the weekend!" He calmed down. Thank God it's Friday! :)

This time when I dropped him off at daycare, he didn't cry. I think this mystery is solved.

Progress on dealing with autism

While at work, I called the number for the developmental pediatrician that the PEP teacher recommended. I verified that she is in network for my health insurance, then made a consultation appointment for March 15th.

I can't believe how long it took me to do this. The PEP teacher gave us this doctor's name when JF first started PEP, and we were "too busy" to call her. I guess it was fear of the unknown and being overwhelmed with too many options. Maybe it's like the proverb, "When the student is ready, the teacher will appear."

Weekend plans

We're invited to a birthday party for a neighbor's kid today at 1:00, and a birthday party for a niece today at 4:00. I'm hoping we can all go to both parties, but JF's stuffy nose and cough needs to be considered. I don't want to expose JF to more germs if he's still recovering from the previous illness. I also don't want to expose other kids to JF's germs. But, we can't keep him cooped up forever. And it may just be allergies. When AF wakes up, we'll discuss it.

I was planning to take JF to Cartoon Cuts this weekend with my sister and her daughter, but my sister called a few days ago to put it off a week because something came up. JF and I are both getting a little shaggy, but we can wait another week.

If you've read this whole long post, thank you.

Tuesday, February 6, 2007

Overconfidence? Wishful thinking?

JF's last dose of fever-reducer was at 2:00 AM yesterday. All day yesterday, he seemed magically better: His forehead temperature felt normal to my cheek, he was up to his normal ativity level (driving us crazy), and eating almost as much as he normally does.

So we sent him to daycare today. Everything seemed peachy until AF went to pick him up at daycare this evening. JF felt hot again, and sure enough, he was at 101.9.

My first thought was, he's been hit by yet another opportunistic bug and AF and I will have to work half-days all week. But then, after discussing it over with AF, we realized that neither one of us actually took his temperature yesterday to verify that his fever was gone.

Doh!

AF took the boy to the pediatrician this evening to make sure nothing has changed since the ER visit on Saturday. And nothing has changed. It's still just a viral infection. The doctor predicted that he'll be all better by tomorrow. But we still have to keep him home tomorrow because of the rules that he has to be fever-free for 24 hours. AF volunteered to stay home with him all day so that I can have a full day at work. (I'm not sure whether to be thrilled or disappointed.)

We've increased JF's Pulmicort doses back to two doses per day, hoping that it will help decrease the frequency of infections. We've found out the hard way that the nebulizer parts will warp if we soak it in water that's too hot. Until recently, I had been using the microwave's "beverage" setting to heat water for soaking the parts. AF, however, has always used the tea kettle to heat the water. I recently started following suit. Now the little cup that holds the Pulmicort is lopsided. I think I'll go back to using the microwave.

I'm annoyed that these nebulizer parts (and all of the other medical stuff we've had to deal with) didn't come home with better instructions. Our current set of neb parts has instructions for assembly, but none for cleaning. (Maybe this doesn't bother other parents; Maybe it bothers me only because I'm a tech writer. I dream about writing instructions.) If I had time and energy, I'd write to the manufacturer and complain.

Time and energy? What's that?

Sunday, February 4, 2007

Fever update

AF and JF returned from the ER only two hours after they left last night. Apparently, the last dose of ibuprophen kicked in the moment they arrived at the ER. The ER doctor said JF has a viral infection and sent them home with nothing.

(There ought to be better ways for parents to determine what's wrong with their kids at home, to prevent pointless trips to the doctor or ER!)

Throughout the night and this morning, we've been alternating between ibuprophen and acetaminophen, and encouraging him to drink Gatorade or apple juice. He actually ate some toast this morning, threw it up, and then ate more toast. I guess his stomach fills with junk while he's asleep, and he had to clear it out before he could digest anything.

He's napping now, but after the first hour, I've been interrupting his nap to give him sips of Gatorade every ten or fifteen minutes. I'm hoping this will prevent any further vomiting. He was due for another dose of ibuprophen a few minutes ago, but I took his temperature and it was only 100.1. I'm going to wait & see.

Saturday, February 3, 2007

Considering a job change

To take my mind off of worrying about JF, I'll write about something that has been on my mind for a long time. I need to find another job and quit my current one. Preferably in that order.

I hate changing jobs, and I've been told that I'm tenacious. Once I sink my teeth into a challenge, I have a hard time letting go. So you would think that my current job would have to be Hell on Earth to persuade me to look elsewhere. But no, it's more like Purgatory.

Perhaps this will make more sense if I start from the beginning. (I'll try not to be too verbose.)

When I was in grade school, I often escaped from reality by reading science fiction and fantasy. I think much of who I am today came from these books, because my favorite authors used the fiction medium to explore issues of morality. I wanted to be like these authors when I grew up. I wanted to do the same for other people that these authors did for me.

When I attended college, I gradually came to accept the fact that I wouldn't be able to earn a living from writing fiction, fresh out of college. So my plan was to start some other career and use that as a stepping-stone to my fiction career. That stepping-stone career turned out to be technical writing for various software companies.

I intended to develop a habit of writing for an hour every day, and sending short stories to magazines. I did manage to send short stories to a couple of magazine contests, but I never won anything. I also never did manage to keep the habit of writing for an hour every day. The problem wasn't writer's block. Instead, my problem was the opposite. Once I started writing, I found it hard to stop. (Still do. Can you tell?)

So, for a few days in a row, I would be up late writing for hours on end. Then, something would happen to interrupt the daily writing habit, and then it would take weeks or months for me to try again.

Then, after I had been a technical writer for seven years, my son was born. JF was a relatively easy baby (and I love him more than words can say). I stayed home for twelve weeks, the maximum under which the law guarantees I could come back to the same job. My husband became a stay-at-home dad the moment JF was born and didn't go back to work until JF was two and a half. You would think, under these conditions, that I would be able to continue trying to write for an hour every day. Where there is a will, there is a way.

No dice. It was all I could do to keep up with the top-priority stuff, like breast-feeding and pumping, going to work, and getting enough sleep at night. There was no way I could squeeze in time to read fiction, much less write it.

I came to realize that I was trying to fit three things where only two can possibly fit: Motherhood, my job as a technical writer, and a fiction writing career. I gave up on the fiction writing, putting it on a "back-burner" at least until my son, and any other children I might have, are old enough to take care of themselves.

So I started re-evaluating what I really wanted to do with my life. I want to help people. After all, isn't that why we're all here? To help each other? I decided to look for some way to earn a living helping people, without the extreme ramp-up time required for fiction writing.

Technical writing for software companies doesn't really fit the bill. The guides and online help that I've written or updated probably have helped a few people while they are at work, but I have very little idea what they are doing with my assistance. Are they trying to find a cure for cancer? Or are they finding new ways to rip people off?

Call me cynical, but I'm willing to bet it's more often the latter. Add to that, I don't trust the upper management at the software company where I currently work. I'm not sure that I trust upper management at any software company any more. They seem to consider only the bottom line, and nothing else.

I considered changing to an urban planning career. The idea of planning roads and public facilities appeals to me, like a bigger-than-life puzzle. But then I was told that urban planners face a lot of disappointment: They work hard to produce a plan, only to have some politician shoot it down.

I considered becoming a software engineer. Software engineers earn more respect (and money) than tech writers, and have more control over what they produce. But I would have to go back to school, which would be just as time-consuming as starting a fiction career.

Meanwhile, my boss was the best boss ever, but she didn't want to be a manager. She even arranged for another manager to take her place, so that she could take a demotion and be a writer like me, one of the grunt workers. Then the company reorganized, splitting my department into two, and my boss was promoted back to manager status again. She found a better job and quit.

We hired another writer to replace her. Because of budget constraints, she was hired as a team-lead, rather than a manager. But she became our manager in all but name. After a year, she also quit. I've lost two great managers in two years.

That's just the tip of the iceburg. Many other things have frustrated me about this job, but I can't really go into any details. Meanwhile, I keep my nose to the grindstone and try to produce quality work, despite the frustrations. Every morning, I dutifully drag my butt into the office, but I really don't want to be there any more.

However, I have not been actively looking for another job. Why not? Partly because of my tenacity. Partly because I really don't know what kind of job would satisfy me. Partly because it's been eight years since I changed jobs, and the prospect scares me to death. Partly because I imagine an interviewer asking me why I want to change jobs, and I'm afraid that all of my honest answers would give them the wrong impression of me. Just writing about this makes my hands shake.

I can understand why some women remain in abusive relationships. Better the devil you know, right?

So, I've been praying for divine guidance. "Help me figure out what I should do."

Then, my husband's brother asked whether we want to buy their Jessup house. If we bought this house, my commute would be at least an hour long each way. This house appeals to us for many reasons, but it also appeals to me because it would give me a more acceptable reason to quit my current job.

Then, I was diagnosed with a brain malformation (Arnold Chiari Malformation Type I). I hypothesized that if I have it, my son might also have it, and it might explain his developmental delay. This hypothesis led me to DDM's blog, which introduced me to the world of blogging. I found many blogs by parents of children on the autism spectrum and other children with special needs. I started to learn more about autism and other medical issues. It became a new puzzle for me to chew on.

Then, I opened a fortune cookie. It said, "You could prosper in the field of medical research."

Is this the answer I was looking for?

We're waiting to find out whether we can afford to buy the Jessup house. If we can buy it, I intend to endure the long commute until we have finished our current software release. (I don't want to abandon my co-workers when they need me the most.) I might have to endure it for several months.

Then, I'll start actively looking for another job. Perhaps I will find a writing job in the medical research field. Perhaps it will even be an autism-related job. That would be ideal.

I hope my current plan is appropriate. I hope I'm doing the right thing.

JF is going to the ER

JF now has a fever. With the puking and diarrhea the past few days, he didn't have a fever. We think some opportunistic germs took advantage of his weakened state. So his stomach virus has morphed into something else. Ibuprophen and acetaminophen has had little effect. AF is now taking the boy to the ER.

I should go to bed now, but who can sleep at a time like this?

Friday, February 2, 2007

Home visit postponed again

JF's PEP teacher called me at work to ask whether he's feeling better. He is apparently feeling better: He ate multiple English muffins and slices of toast today and didn't vomit once. But we kept him home from daycare again today because he vomited at bedtime last night. The PEP teacher suggested that we postpone the home visit until Monday evening, because both JF and she were so recently sick, one or both of them may still be contagious. So we're looking forward to Monday. Sigh.

There are so many things that I want to write about, but I really need to go to bed and get some sleep. I want to write about JF's potty training progress, his aggressive behavior, the house that we'd like to buy from AF's brother, my frustrations at work, my attempts to manage my time, my attempts to absorb and digest information about autism, and so on. Maybe I'll have time to write tomorrow.

I love to write, so I should probably reserve blog-writing for the end of the day, as a reward for getting stuff done. Otherwise, I'd spend all day writing a thirty-page post. Who would want to read a thirty-page post?

Thursday, February 1, 2007

Stomach virus

JF apparently has a stomach virus. From 7:30 PM until around midnight on Tuesday night, he was vomiting every half-hour or so. Then he had diarrhea at 2:00 AM yesterday morning. I woke up because I heard him say, "More water?" Then as I was getting up I heard, "More sit on the potty?" So he was thirsty (already dehydrated) and aware that he was sitting in poop (potty training progress). I cleaned him up again, changed his sheets again, and allowed him to have some water.

When he's thirsty, he gulps it down. When he's sick, it comes back up. So we have to dole out the water carefully. I hand him his sippy cup and take it away when he's had two or three gulps. Then we sing a song or two. Then we repeat until JF stops asking for more. Sometimes we misjudge how many gulps he can handle or how often to offer the cup, and he throws it all up. Sometimes we hold back too much and he ends up going to the ER for dehydration. It's a fine line, and sometimes there just is no happy medium.

He had diarrhea two or three more times and vomited two or three more times yesterday. (I lose count.) When he's losing fluids like this, we worry about dehydration. We've been to the ER with JF many times. In fact, he was admitted to the hospital the day before his second birthday because of a rotavirus and dehydration. Not a great way to spend a birthday. We've never had it as bad as Kyla and her family, so I tip my hat to them. But it's never a walk in the park. So we try to avoid ER visits when we can.

JF has long ago made clear to us that Pedialyte will not be tolerated. So when he's losing fluids, we try to get him to drink Gatorade. Sometimes, if I offer water even once, he will completely refuse Gatorade. So yesterday, I was pushing the Gatorade. I don't even frame it as a question any more. ("Do you want some Gatorade?" No, of course not.) I tell him it's time to drink, as if it were medicine. Each time, he might take one or two sips.

All day yesterday, JF had no appetite. I got him to nibble at an English muffin (which we call simply "English" to avoid painful misunderstandings about muffins) and a cracker. That's right, one cracker. All day.

He was also lethargic, lying on the floor most of the day. This is not like him. He usually runs, jumps, climbs like a monkey. I brought toys to him, and he played with them, but mostly from a prone position. In spite of his lethargy, throughout the day, he kept asking, "Ready for daycare?" or "Go to the playground?" or "Go to the mall?" It broke my heart to keep telling him, "No, not until you're all better. Maybe tomorrow."

After his nap, at 4:30, he was even worse. He was pale, staring off into space, not interested in playing, not laughing at any of Momma's silliness. He asked for water, and I was so worried I forgot about the Gatorade. I let him have three gulps of water, and he threw it all up. Then Daddy came home from work and we discussed his condition. We called the doctor.

Dr. Strahlman said if he's vomiting and having diarrhea, he probably has a stomach virus. Try to get him to drink juice, an ounce every hour. If he continues to refuse, he might go into ketosis. I asked whether he can send a prescription for an anti-nausea medicine. (I knew about this from an ER visit.) The doctor said he can't prescribe it without seeing him, to rule out appendicitis or any other obstruction. He said if you can't get an ounce or two into him by 7:00 PM (by now it was 5:30), take him to the ER.

I filled up two medicine cups (about one ounce each) with grape juice, and we pushed it on him, sip by sip. By 7:00 PM, he had finished both cups and was much more like himself. No ER trip.

While I was on the phone with the doctor, I asked about the dosage of his Pulmicort. When JF had been on two doses of Pulmicort per day, his frequency of getting sick had decreased. As soon as we dropped down to one dose per day, he got a fever that week, and he's sick again now, two weeks later. Dr. Strahlman said that we can go back to two doses of Pulmicort per day.

In spite of that, we skipped his Pulmicort and Zyrtec doses last night. AF didn't want to risk making JF throw up again. I hope skipping these doesn't make JF worse.

This morning, JF seems much better. He still doesn't want to eat or drink much, but he's nibbling and sipping a lot more than he did yesterday. (He has finished two whole crackers already!) He seems to have learned some restraint when it comes to drinking fluids. Or maybe he just isn't as thirsty. Knock on wood, but he hasn't had diarrhea or thrown up all morning. Maybe he has turned the corner. Maybe? Please?

Staying home from work all day yesterday and all morning today has given me the opportunity to catch up with a mountain of laundry. It has also given me the opportunity to work with JF on his language skills. (Perhaps it's a bad sign that I think of the laundry first. But a sick boy has to have clean sheets and clothing, doesn't he?)

This morning I realized that it has been a long time since I played the game of pointing to each thing in the room and asking JF, "What's this?" I could make the excuse that I'm a working mom, and when I come home from work, I'm just too tired to do anything except eat dinner and go to bed. (Perhaps I need a higher dose of Synthroid?) But that would be just an excuse. Where there is a will, there is a way.

I realized that I've been hesitating (for months, maybe even a couple of years) to try to teach JF things that are subtle. A couple of weeks ago, JF's PEP teacher told me that he needs to work on recognizing lowercase letters. My first thought was that the lowercase L looks like the number one. I remembered my own confusion as a child over the lowercase letters b and d.

I now realize that I was hesitating to try to teach JF the lowercase letters because of these subtle distinctions. I was afraid that he wouldn't get it. I was afraid that I might confuse him by trying to explain the differences. I was allowing my fears to limit his potential. Silly Momma.

So yesterday, I wrote each of the lowercase letters on a small piece of paper, and mixed them up in a big bowl. I tried to make a game of it, asking him to take out a letter and tell me what it was. He recognized the letters a and i. I gave him praise & clapping for each of those. The second success I also gave him a kiss because I was worried that praise & clapping weren't enough. There were about five or six letters that he guessed wrong or refused to guess at all. When he guessed wrong I said, "Good guess," and told him what it was. When he refused to guess, I told him what it was. After a while, he seemed to lose interest, and I decided not to push it.

This morning, I played the game of pointing to each thing in the room and asking JF, "What's this?" I tried to alternate between things that I know he knows (door, floor, table) and things that he might not know, to keep him from getting discouraged. I also tried to explain distinctions (wood floor, carpeted floor, linoleum floor) and things that have more than one name (Thomas toy train, rather than just Thomas).

I should try to keep doing this (teaching JF to recognize objects around the house and lowercase letters) every evening, every weekend, and whenever he's sick. I should try to avoid working late at least two or three days a week, so I will have more energy to do this. This is where I was at when I checked my blog for comments this morning.

I described in a previous post that I was worried about whether JF was getting enough therapy at PEP. He attends PEP (actually PEP-INC, but its easier to just say PEP) three hours a day, five days a week. I had recently read that the recommended amount of therapy for an autistic kid is 20-40 hours per week. A commenter (Mom to JBG) suggested that I could work with him after work or on the weekends to bring up JF's 15 hours of therapy to the recommended 20 hours. This comment cemented my resolve to try it.