Insomnia, for many reasons

I woke up at 3:00 AM. After about a half-hour, I gave up trying to get back to sleep. I made myself some chamomile tea, ate some peanut butter, and started making a to-do list to get things off my mind. That woke me up even more.

So here I am, attempting to write about everything that I've been wanting to write about for the past few weeks:

• My body is not cooperating
• Epsom salt
• Settlement date
• Marriage counselor
• Computer failure
• JF's accomplishments

My body is not cooperating

Over a month ago, I decided to take myself off of the GFCF diet, but I have not been able to do so. Why not? Because I think I should reintroduce gluten and milk one at a time and watch for any reactions, just in case. After four months on the GFCF diet, I may have made myself lactose-intolerant. Also, I've read that many people have celiac disease (gluten intolerance) and don't even know it. So it would be silly of me to just dive back into the world of cheese cake, pizza, and buttered toast.

But what reactions would indicate a problem with gluten or milk? Diarrhea. And what have I been struggling with for the past month? Diarrhea. If I try gluten or milk now, I won't know if it causes a problem for me.

I went to the doctor's office on July 25th. I told the nurse practitioner about the GFCF diet, the stress in my life, and the diarrhea. She told me to give stool samples to the lab, suggested I increase my fiber & water intake, and said I might have irritable bowel syndrome. I also mentioned to the nurse that I had tried taking probiotics for a couple of days just to see if that would help. She said, "Well, you'd have to take it longer than that to see any effect." I think she said a week or two.

The lab results were negative (meaning they found no problems). I've been taking Metamucil, gradually increasing my dosage. I'm currently taking 2 capsules in the morning and 2 in the evening. I'm also taking probiotics (Kirkman's Pro-Bio Gold) once a day. I'm not sure whether these are helping, yet.

In the meantime, I am getting increasingly frustrated about having to stay on the GFCF diet. One co-worker brings in Dunkin doughnuts every Friday. I'm worried that he'll stop bringing them in just as I manage to get myself off the diet.

I've told a few friends about this frustration, and each one has asked, "But what if it's the diet that is causing your diarrhea?" The only way that the diet could be causing it (I think), is if it has caused a deficiency, such as a deficiency of fiber. I probably have been getting less fiber since I started the diet. And I'm working on that. Otherwise, I think the nurse practitioner would have told me to quit the diet.

The more I read about irritable bowel syndrome, the more I believe that's what my problem is. I've had symptoms of it for years (such as abdominal pains just before needing to use the bathroom), maybe even as far back as grade school. I never went to the doctor about it though, because it was never this bad. Maybe I've just never had this much stress in my life before!

Epsom salt

We finally did give JF an epsom salt foot-bath at bedtime (on Friday July 27th, I think), with a quarter-cup of espom salt (magnesium sulfate) in it. My hope was that (a) the magnesium would help calm him down and help him fall asleep at bedtime, and (b) the sulfate would help him to detoxify himself. (If I can't put JF on a diet to avoid toxins, let's help his body to deal with those toxins!)

That night, it was as difficult as usual to get JF to go to sleep. Maybe a quarter-cup wasn't enough? Maybe a foot-bath wasn't enough?

I think the sulfate may have helped, though. After that night, when JF got mosquito bites, they didn't develop into huge welts like they usually do, and they seemed to disappear faster. I think even AF noticed this, but he probably wouldn't agree with my theory that it was because of the epsom salts.

Also since that night, JF has gotten sick once, while we were in Vermont. This was right on schedule, based on his previous frequency, but it wasn't as bad. We were expecting three days of fever, ranging from 100 to 104, day and night. This was a lower fever (100-101), for only two days, and only at night!

Again, AF probably wouldn't agree with my theory that it was because of the epsom salts.

And we haven't tried the epsom salts again (on JF) since then. Maybe I can persuade AF to let us try it again, maybe with a half-cup in a full bath this time, sometime soon. And maybe we can deter JF from drinking the bathwater, by having him wear the mask from his nebulizer.

I have also given myself an epsom salts bath. It was relaxing. I've been taking showers rather than baths for so long, I had forgotten how nice it is to soak in hot water. Otherwise, I'm not sure if I noticed any beneficial effects.

The red bumps on my lap seem to be less pronounced these days, but I don't know whether to thank the sulfates or the probiotics for that.

Settlement date

Our house is still under contract, but the settlement date is a moving target. The original settlement date was yesterday (8/17/07). Now the settlement date is Wednesday (8/22/07). And we already have a heads-up that it might move to next Friday (8/24/07). This is all because the buyers have shaky financing and the mortgage lending industry is in upheaval right now.

As I understand it, the buyers have nowhere to live right now. I don't know whether they are living with friends, or living in a hotel, or what. Maybe they're camping in a park somewhere. This business is stressful enough for us; I can't imagine what it must be like for them.

Our contract also specifies a two-day rent-back after the settlement date. This is to protect us. We don't want to start moving our stuff until we're certain, and we won't be certain until it's a done deal. If settlement is on a Friday, that would make it easier for family members to help us move. If settlement is on a Wednesday, that would make it easier for us to contact utilities. I'm not sure which one I prefer. I just want to move!

On Monday, AF and I will take time off work to visit some daycares in the area where we want to move. We'll pick one, and pay the registration fee or whatever it takes to reserve a spot for JF, just in case our house sells. We're risking the money it takes to reserve the spot, but I'd rather have the peace of mind. We should have done this weeks ago. Better late than never!

Marriage counselor

AF and I saw a marriage counselor yesterday. She is a psychologist on my healthcare plan and she was recommended by our next-door neighbors. I wish we'd had more than an hour with her. It's difficult to explain the whole situation in just one hour.

I tried to explain the DAN approach and where I stand as far as wanting to try more biomedical stuff on JF. AF tried to explain where he stands. He complained about my persistence. He said I've been dismissive about his concerns. He said that in most things, I tend to consult with everybody about every detail, but with this DAN stuff, I started behaving differently. I had told people, "This is what we're going to do, and I need your support." (This is my attempt to describe how AF sees me, but I'm not sure how well I'm doing it.)

I think what AF doesn't realize is that I've always had this worrier/warrior dichotomy. When I don't have enough information, I worry. So I start gathering information, sometimes by asking friends and family what they think, sometimes by reading books, sometimes both. After I have gathered what I perceive as enough information, I take action. AF may be wondering why I didn't consult with friends and family about autism the way I usually do about many other things.

And that's a good question. Before I read the Starving Brains book, why didn't I ask friends and family about autism? I guess it was because I didn't think any of them knew much about autism, not even the sister-in-law who is a nurse. People don't tend to learn about autism until someone close to them is diagnosed with it. Nobody in my family and none of my friends had kids with autism. Except for my friends here in Blogger. And one of those friends recommended the Starving Brains book.

I didn't really get to explain the above two paragraphs during the counseling session. AF mentioned that a friend has suggested he read my blog (this blog). The counselor agreed with that suggestion. So maybe it doesn't matter that I didn't get to explain everything to him in the session. I've always felt more comfortable with writing rather than speaking anyway.

The counselor suggested that AF try to read what I've been reading. AF said that he started to read the Starving Brains book, but it had so many uncertain statements (maybe, probably, most, some) in it, he stopped reading it. The counselor suggested that he try again, but this time with the goal of explaining it to her at our next visit.

The counselor suggested that we try to agree ahead of time on parameters whenever we try something new on JF. We should try to track JF's behaviors (eye contact, cooperation, or whatever we're trying to change) so that we can see better when something is having a positive or negative effect. I thought this was a good idea, but I don't see how we can track JF's life in any more detail than we already are. We both work away from home and the spreadsheet that we're keeping takes enough time out of our lives as it is. In trying to explain this, I was afraid that I was about to cry and stopped talking. The counselor changed the subject. I never did get to explain this.

Maybe I will get a chance to explain at the next visit on Thursday 8/30.

Computer failure

After the counselor visit yesterday, I came home and tried to turn on our computer. Apparently, \Windows\System32\Config\System is missing or corrupt. Great. Just what I need right now!

We bought this computer on 6/1/05. (Wow, it's been over two years already?!) We also paid for a 3-year warranty, which comes with a phone number that we can call for technical assistance. We've used this number at least a few times in the past two years. It's great that I can call a number and someone will help me troubleshoot our computer. But it's always a very frustrating process and it's never quick. I didn't call last night because I don't know how long I'll be on the phone. I'm going to try to call today and I hope it doesn't eat too much of my day. Or week.

In case you're wondering, I'm using my work laptop to write this post. (Shh, don't tell!)

JF's accomplishments

I've been wanting to write about JF's accomplishments for a long time now. I think I should start including a section on his accomplishments in each post. However, it will be harder for me to remember them without access to our spreadsheets on the (currently) defunct computer. I will do the best I can from memory:

• JF can cut up soft meats (like chicken) with a knife and fork.
• He can drink from an open cup, but we let him do so only at the dining room table. Everywhere else, we give him a sippy cup.
• He is a lot neater about eating than he used to be. I still have to change his clothes after some meals, but only a few times a week, rather than after every meal. I can give him cereal without cringing!
• He is a little more thorough about brushing his teeth. (I still do it for him, too.)
• He's more reliable about telling us when he has a canker sore. Usually just before I brush his teeth.
• If I hold his underwear or pants for him, he steps into them and pulls them up. If I hand him a sock, he usually puts it on by himself and might need my help only to turn it around. If I put his shirt over his head, he pulls it down & shoves his arms through. He tries to slip his shoes on by himself, but he is more successful when I loosen the laces for him. He tries to loosen the laces by himself. He tries to tie the laces, crossing and recrossing them until they're completely twined.
• He can button buttons and snap snaps!
• He can take off any article of clothing by himself, except for his shirt. (He apparently doesn't have the arm strength and coordination to pull his arm out of his sleeve.)
• He cooperates better if I sing to him. In this way, he has been learning to sing Amazing Grace, Oh Say Can You See, Oh Beautiful, and Little Boxes.
• On Thursday evening, after I had started heating vegetables in the microwave as part of dinner, JF said, "Thank you Momma for making dinner." (The "Thank you Momma" part is a script, but I had never before heard him adding what he is thankful for!)
• Yesterday morning, when JF woke up, I told him Daddy's home. (AF had been in New York visiting his dad.) I told JF to go wake up Daddy. He ran to him and said, "Wake up, Daddy!" AF started tickling him and wrestling with him, as usual. I said to AF, "He missed you." JF said, "I missed you, Daddy." (Notice the pronoun switch! And the appended name!)

Oh, and school starts on Monday, August 27th. We still have no idea whether it will be in Montgomery County or Howard County, but at least we know the date. (It's the same in both counties.)

Adenoidectomy

It's been a while since I've written because I had another deadline at work. I will continue to have these deadlines until maybe the end of July, so my posting may be sparse for a while.

Today I will write about:

• Lamotrigine
• CST
• Dr. Cohen
• Bronchitis
• Yasko
• Rebuked
• Adenoidectomy

When I write, I try to keep things in somewhat chronological order, but I also try to focus on only one topic at a time. Sometimes these goals conflict with each other because events in my life become very intertwined.

Lamotrigine


Back in March, JF's neurologist prescribed Lamictal because he had an abnormal EEG and he often stares off into space. We're assuming that the staring spells are sometimes mini-seizures, and sometimes just normal daydreaming. Then we switched to the generic form, Lamotrigine. We've been increasing the dosage, per the neurologist's instructions.

Then JF was on a 25-day course of antibiotics for his chronic sinus infection.

While JF's school year was still in session his teachers reported that he was increasingly spacey.

As I see it, there were two possible explanations for his increasing spaceyness:

• The antibiotics are causing or aggravating a yeast overgrowth problem, and the probiotics aren't helping, yet. (We started the probiotics long after we had started the antibiotics.)
• The Lamotrigine is making him more spacey, rather than less spacey. I've heard that this is possible. (The cure is worse than the disease!)

I have no idea how to figure out which theory is correct. So I typed up the relevant sequence of events and faxed it to the neurologist. I was hoping to talk it over with her. She left a message on our phone for us. She said to drop back to three Lamotrigine tablets in the morning and three in the evening. (We had worked our way up to four & four by this time.) She also said that she wanted to see JF in July, rather than October.

We obediently dropped back to three & three tablets per day, and scheduled an appointment for July 24th. But I'm annoyed that I didn't get to talk to her. If she had called me at work at that time of day, I would have been able to talk to her, but she chose to use our home phone number instead, and didn't bother to try a different number when no-one answered. I understand that doctors are very busy, but I'm still frustrated.

We continued the probiotics for a week after the antibiotics ended. Day by day, I could see JF becoming slightly more alert and more talkative. But was it because of the timing of antibiotics/probiotics, because of the decrease in Lamotrigine, or because of the other supplements we've been giving him? I have no idea.

CST

My sister (Sister1) has been telling me about CranioSacral (or Cranial Sacral) Therapy. At first, she was telling me that I should try it to see if it helps my scoliosis. Recently, she has been suggesting that we try it on JF for his autism. She sent me this link: http://www.upledger.com/clinic/autism.htm.

The theory behind CST sounds like pure quackery to me: The therapist uses gentle pressure, about the weight of a nickel, on the body. This pressure somehow moves the bones of the skull, which in turn moves the dura mater beneath it, releasing built-up tension. The theory is that the dura mater normally expands and shifts as the brain grows, but in some people, it gets stuck. This theory is used to explain why some autistic kids bang their heads, supposedly to counteract the internal pain of a restricted brain.

What frightened me about Upledger's article was this statement, "The therapy must be continued until the child has reached full growth, because once the dura mater has lost its accommodative ability, it must be physically stretched by a therapist." That raised a red flag in my mind. It implies that you must continue the therapy for years. Maybe it's true, but that makes it sound like a classic scam.

I politely told my sister that I'm very skeptical about this. I'm keeping an open mind about it, but there are so many other therapies that I want to try on JF first, that have more science behind them.

However, I have been hearing about this from different places. The Spring 2007 edition of "New Developments" (a newsletter published by Developmental Delay Resources) has an article about the lymphatic system and lymphatic drainage therapy. It sounded similar to (but much more plausible than) CST. They use gentle pressure to massage the lymphatic system. Sure enough, at the end of the article, there was a reference to the Upledger website.

I have two possible theories about CST:

• Maybe it works only because the people who try it believe in it. Belief can be very powerful. If parents believe that a particular therapy will work, they will raise their expectations, and the child meets those expectations.
• Maybe it really works, but not for the reasons that John Upledger described. Maybe it works because of lymphatic drainage, rather than because of movement of the dura mater. Or maybe it works for some other reason.

I'm keeping an open mind, but this is still at the end of the list of therapies I want to try.

Dr. Cohen

On Monday 6/25, I took JF to see Dr. Cohen for a second opinion about vision therapy. He did the same tests on JF that Dr. Appelbaum had done, in slightly different ways. For example, instead of moving a penlight around to test JF's ability to track it, he used a wand with a tiny cube on the end. The cube had a different picture on each face. He asked JF about each picture while he moved the wand around. I think Dr. Cohen's way of doing things is much better for a 4-year-old.

Also, I didn't get to see what JF's eyes were doing this time. But I guess it doesn't matter.

Dr. Cohen said that he saw no reason for JF to have vision therapy. My jaw dropped. I told him about Dr. Appelbaum showing me how JF's eyes were not tracking the light appropriately for his age. I asked, "What could explain the difference?" He offered two theories:

• JF might have an intermittent vision problem and maybe he just happened to be okay that day.
• The supplements that Dana Laake prescribed may have improved his vision.

There's apparently no way to know which it is for certain. I asked whether we should come back for another evaluation, and he said we can come back in a year.

And now, I've heard from multiple people that Dr. Appelbaum prescribes vision therapy for everyone.

Bronchitis

After JF's visit to Dr. Cohen, it was my husband's turn. He took JF to the pediatrician the same day because JF was still coughing. He had been coughing for several days. The pediatrician diagnosed it as bronchitis and prescribed more antibiotics, Azithromycin.

JF has been off of antibiotics for 16 days, and now he's back on them again!

This time, however, we started him on probiotics the same day. I think it is helping to keep the spaceyness at bay this time, but not the diarhea.

On a happy note, this doctor visit also revealed that JF has gained back three pounds. Maybe this means that adding more nuts and peanuts to JF's diet is helping to compensate for his lack of enthusiasm for rice bread. And maybe this will make it easier for my husband to accept putting JF on a GFCF diet.

Yasko

On Tuesday 6/26, I attended a meeting of a group of parents who are exploring biomedical treatments for autism. Most of the parents at this meeting are trying the Yasko protocol. It appeals to me because sounds like a much more scientific approach, but they said it starts with a $700 genetic test.

I told my husband about it the next morning. At one point I said, "This scientific approach makes Dana Laake's recommendations seem like just throwing supplements at him and seeing which ones work." He said, "That's what I've been telling you all along!"

So maybe he'll decide that the Yasko protocol is worth investigating. I think I should wait for him to bring it up again, rather than nag him to tell me what he thinks about it.

Also, one parent at the meeting championed CST.

Rebuked

When we took JF to see Dana Laake back in May, she gave us four test kits. By 5/24, I had sent all four to the labs with hair and urine samples. We were told it takes three weeks to get any test results returned.

On 6/14, Dana sent me an e-mail message saying that she has gone over test results and we can discuss them the next time we meet. I started saving up all of my questions for that meeting, instead of sending them to her as they came up. I called her office and asked whether the results for all four tests have come back. All of them except the opiate peptide test have come back. I asked them to call me when they get the fourth one.

On 6/19, I sent a message to Dana asking whether the fourth one has arrived yet. Dana said her office will call the lab. I continued to save up my questions.

On Thursday 6/29, I gave up and sent a long list of questions to Dana. (It was pretty long, but not as long as my blog posts.)

She responded, politely explaining that she doesn't have time to respond to all of my questions right now, but we can schedule a phone consultation for the week of July 9th.

I don't blame her for this, but I'm frustrated. (And I'm hurt, but maybe I'm being oversensitive.)

Adenoidectomy

On Thursday 6/29, my husband took JF to the ENT doctor for a follow-up. The ENT doctor said JF should have his adenoids removed.

JF has had surgery before, to have his inguinal hernia repaired. That surgery was unavoidable, because a hernia can quickly turn into a life-threatening situation.

I'm not so sure about an adenoidectomy. I have done a few minutes of research on it, but I've found nothing useful so far.

I guess my fear is that we'll remove JF's adenoids and then someone will tell us, "You should have tried such and such first!"

Much better now

For those of you who read my previous post, I did feel a little better the next morning. Not a lot, but just enough to get me through the day.

Another possible reason for my depression was that my hearing and balance had been distorted for several days. I finally went to the doctor on Tuesday morning. Turns out both of my ears had fluid in them. I took one Claritin D and within 12 hours, my hearing was back to normal. All of the fluid that had been clogging my ears drained out. Then I felt feverish for a day or two. Now I feel much better, physically and emotionally.

My theory is my ears got clogged because I spent one or two nights sleeping without a pillow. My allergies (which I can normally ignore) provided the fluid and gravity did the rest.

JF has been home sick all this week, with a runny/stuffy nose, a cough, and a fever. His IEP is on Monday at 2:00, and his surgery follow-up is the same day at 4:00, so I hope he's better by then.

So far though, it has been one of his standard illnesses, rather than the circus act we had the last time with HSP. I have a theory about that, too: JF had been starting to get sick (runny/stuffy nose) when we spent a weekend at the Jessup house. I got tired of the dirty floors, so I found a broom and started sweeping it up. JF wanted to help, so I allowed him to push the broom a few times. My brother-in-law and his wife had many pets in this house, including cats. JF is allergic to cats. My theory is that the sweeping kicked up a lot of cat allergens (and who knows what else) into the air. JF's body responded to it by pulling out all the stops. We really must have that place professionally cleaned of allergens before we move in!

I think I should take back one thing from my previous post. I complained that I had not had one of my typical weekend breaks (reading fiction) since before Thanksgiving of last year. While this is true, it's not the whole truth. After Thanksgiving, Christmas, and New Years Day was over, I probably had a few opportunities to read fiction. But by then, I was hooked on blogging. I squandered my free time writing blog posts!

I don't mean to disparage blogging. I just mean that my complaint wasn't as valid as I had thought. I will still try to make time for reading, soon. But it doesn't feel as urgent any more.

Another possible reason for my depression was frustration about going to church. I was raised Roman Catholic, and we went to church every Sunday. We had to be in dire straits to skip it. This annoyed me when I was little, but as I got older, I found it to be time well spent. It provides a welcome break from the rest of our lives, and makes us think about how we are living our lives.

Shortly before AF and I got married, I switched to Unitarian Universalism, because of my skepticism about many things in the Roman Catholic creed. We married in a UU church, and we started attending that church nearly every Sunday. I even joined the choir.

Then JF was born. I quit singing in the choir. We dropped the habit of going to church. I have taken JF to church maybe twice in the past (almost) four years. At first, it was because I felt too overwhelmed to squeeze in a trip to church between breast feedings. Then JF became old enough to attend the UU Religious Education classes. When children reach this age, they attend the first part of the service with their parents, then they go to the RE classes so that the parents can enjoy the rest of the service in peace. Sounds great, until you ask about enrolling your child in RE. You have to volunteer for the church, spend a certain amount of time on RE work or other church work. You can't just pay a fee.

Maybe this is okay for most of the parents in the congregation, but it doesn't work for me. I have a hard enough time juggling work and housework and bills and so on, I don't need to add more responsibilities to that. I know when to say no!

So I gave up the idea of going to church. Until recently. When JF and I spent a weekend at the Jessup house, I tried to visit various places in the community, like the library, playgrounds (of course!), and the UU church in Columbia. We were late for the service, but I peeked in. I saw no children. My heart sank. I didn't realize until then, that I had been hoping that this UU church would be different. I talked to people in the hallway, and was introduced to the RE manager. She said that they just recently changed their policy, so that you can't just pay a fee to enroll your child in RE, because there's just so much work to be done. They need the volunteers. (Is it really volunteering, then?)

She did, however, mention that volunteers are needed to buy supplies for the RE classes. Each volunteer chooses a class and goes shopping once a month for the supplies needed in that class. I'm hoping that this volunteer position is still open after we move.

As far as addressing JF's autism, I've been making some progress:

• I've learned that JF has had two doses of Thimerosol from flu shots: One flu shot given to me when I was 15 weeks pregnant and one flu shot given to him at 17 months.
• I asked my sister-in-law, a nurse, to take a look at generationrescue.org. I haven't heard from her since then. I hope she is as impressed as I am. My husband is still skeptical about all of it.
• I started conversing via e-mail with a Rescue Angel from the above web site. She has given me so much valuable advice, it will take me time to digest it all.
• I shopped at Whole Foods and Trader Joe's for GFCF foods. Each has a selection of gluten-free products, and I can figure out which of those are also casein-free. Whole Foods had only two that I could find (molasses ginger cookies and morning glory muffins). Trader Joe's had much much more.
• I ordered four books from Amazon.com: Special Diets for Special Kids, Unraveling the Mystery of Autism, The Out-of-Sync Child, and The Out-of-Sync Child Has Fun. So far, only Special Diets has arrived, so I've started reading it.
• JF has voluntarily switched from cow's milk to almond milk. We give him a choice, and he always chooses almond milk. He still eats cheese and other dairy products, but this bodes well for when we do change his diet. He has also tried bites of rice cake and other GFCF foods that I've been eating.
• I think I've seen some improvements in JF's communication, but I'm not sure. Maybe I need to do another snapshot soon.

I'm sure I'm forgetting something, but I need to get off my butt and get ready for work. It's going to be a long day.

Rash

JF has a stuffy nose, a fever, and a rash on his legs & feet. AF is at the ER with him now.

I also have a stuffy nose. Maybe a fever. (I rarely bother to take my own temp.) But no rash.

The house is still not on the market, but a neighbor's friend came over yesterday morning, with his whole family, to look it over. It would be great if we can sell the house without ever putting it on the market, but I'm not holding my breath.

JF's blood has been drawn, in preparation for starting Lamictal for epilepsy, but we haven't heard results yet.

I recently met a nice lady who said she was "made on a Friday." She said she had so many things medically wrong with her, it must have been late on a Friday, almost quitting time, when God made her. I believe that God is all-powerful, and does not make mistakes, but I like that analogy. It works for me, and my son, too!

Parenthood is an adventure.

Thank you to everyone who has commented on my blog recently. Sorry I haven't had time to comment on anyone else's blog. I've been lurking, mentally sympathizing and celebrating with everyone.

***************

Update: The ER has diagnosed JF's rash as Henoch Scholein Purpura. And the adventure continues!

Busy, busy, busy

We've been very busy lately:

• Too much to do and not enough time!
• Results of JF's EEG
• Weekend plans
• Last post for a while?

Too much to do and not enough time!

When I woke up on Thursday morning and realized that it was the first day of March, I started to panic. AF's brother wants to sell us his Jessup house by April. All this time, I've been thinking of April as being a few months away. Now it's March and we haven't put our Gaithersburg house on the market yet!

Meanwhile, the job that AF has been working on for over a year suddenly dried up, two weeks ago. They have occasional work for him to do, an hour here, a few hours there. Normally, AF would be complaining loudly because when he doesn't work, he doesn't get paid. However, we have so much work to do on the house before we can put it on the market, he's been grateful for the time off. His normal income will be missed, but we'll manage.

For the past two weeks, AF has been packing up stuff that we don't use very often or we aren't using right now, hauling it to (and storing it in) the Jessup house. He's been arranging what's left according to the home-stager's instructions. He's been taking down pictures and spackeling (sp?) the holes. He took our W2s and other paperwork to H&R Block to get our taxes done. He went to our credit union and applied for a pre-authorization for a home loan.

And his self-esteem is plunging because he hasn't been "working." I try to pump up his ego by telling him how much I appreciate everything he's doing and that he's doing a great job at it. I'm not sure how well that's working.

Results of JF's EEG

AF also went to a follow-up appointment today for JF's 1/24/07 EEG. Are you ready for this? JF has epilepsy. The patient instruction sheet said, "Epilepsy - partial or multifocal."

Why am I not surprised? Because it explains his staring spells. We didn't notice these staring spells until his PEP teacher mentioned them. We're so accustomed to JF and having to regain his attention in the middle of a task, that we never noticed them. These spells are apparently mini-siezures (petit mal?).

I haven't done much research about epilepsy, but I've started reading the WebMD epilepsy topic overview. This article lists the symptoms of a seizure, incuding "Your senses may not work right." I'm wondering if this might explain JF's sensory issues and developmental delay. The way I see it, if JF has had these mini-siezures all of his life, and his senses don't work right before/during/after these seizures, why wouldn't he have sensory issues and a developmental delay?

Yet, when I searched WebMD for the words "epilepsy" and "developmental delay" the only useful result was an autism topic overview that says, "about a third of children with autism develop a seizure disorder (such as epilepsy) by their teen years." This seems to be the opposite of what I was looking for.

So, I'll keep researching (beyond WebMD), in my free time. (What free time?)

Meanwhile, we need to schedule an MRI and a blood test. (The MRI I can understand, but I'm not sure what the blood test is for.) I'm going to ask the doctor to have them look for Arnold Chiari Malformation. The last time I had asked her about ACM, she had said that there wasn't enough to justify an MRI. Now that we're doing an MRI anyway, why not look for ACM?

The doctor also prescribed medication for JF to start immediately. If I'm reading the doctor's handwriting correctly, it's Lamictal 5mg chewable, on a schedule that increases the number of pills every two weeks. I hope it helps.

Weekend plans

We've been talking for the past two weeks about how we're going to repaint the inside of the house and refinish the floors. One part of the plan is that AF's friends will come over and they'd have a painting party. Another part of the plan is that JF and I will spend a weekend elsewhere, so that we're not in the way and so that JF isn't breathing in all the paint fumes.

AF had suggested that we spend the weekend with one of my two sisters. However, they both have cats and JF is allergic to cats. I worry enough about JF's allergies (and his associated infections) when we just visit my sisters for a few hours. Spending the night was out of the question.

Then I had an idea. I could take JF to the Jessup house, and spend a weekend there! Not only would we be out of the way and avoid the fumes, but JF would have a preview of living in the new house! (I had been worried about JF's reaction to the move.)

So we had a tentative plan, but we didn't know which weekend it would be.

Then AF called me at work this afternoon. "Honey, I know how you hate last minute plans, but my buddies are busy every weekend except this weekend." Sigh.

So AF asked his brother whether it would be okay for JF and me to camp out at the Jessup house this Saturday. Yup. We're good to go.

Last post for a while?

Considering how busy we will be for the next few weeks (months?), this may be my last post for a while. I might have a few minutes here and there to post comments on other blogs, though.

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.

Potty Training & Other Things on My Mind

About Blogging

I switched to a different blog template so that I could move a few things to a sidebar. I think this template looks better overall, too.

About Potty Training

JF amazes me every day:

• Yesterday morning, I heard him say, "More sit on the potty?" AF didn't understand him at first. Instead of waiting for Daddy to understand and take him to the bathroom, JF ran to the bathroom on his own! Yay! (Afterwards, AF said he had heard, "More silly putty?" Is this an indication of JF's pronunciation?)
• Today, Just as AF arrived at the daycare, JF had pooped in the potty!

I think JF's sudden series of successes on the potty are due to the following:

• Months of preparation (having him sit on the potty every morning, teaching him how to pull his pants up and down, teaching him about pee and poop, and so on)
• Support from his teachers at daycare and PEP
• Two and a half days of Potty Island (described in a previous post)
• After Potty Island, schedule training (we tell him it's time to sit on the potty when he wakes up, before bed, before we leave anywhere, after we arrive anywhere, and after each meal)
• After Potty Island, reserving diapers for when he sleeps and using underwear otherwise
• Neutral reaction to accidents ("Okay, let's clean it up. Maybe next time you'll get to the potty in time.")
• Rewards for successes in the form of hugs, kisses, praise, stickers, and especially M&Ms

I don't intend to claim that he is completely potty-trained at this point. I won't say that until I can rely on him to take himself to the bathroom as needed, during the day. Most of his successes right now are still when we tell him it's time to sit on the potty. But a few times over the past few days, he has told us that he needs to go, which means he is starting to recognize when he needs to pee. Yay!

About My Dream House

AF's brother wants to sell us his Jessup house. We're still figuring out whether we can afford to do so, but the idea has prompted me to think about my dream house, and how we might make the Jessup house more like my dream house.

I guess my requirements come from living in a trailer as a child, then an old house on Cobb Island, then a series of apartments as an adult, and now our current old house in Gaithersburg. I was frustrated with the design of each place and wanted to solve the puzzle of designing a better house. I remember a conversation with Mom in the Cobb Island house, where she said she was frustrated with the kitchen. We had to close the oven door before we could open a cabinet door. We had to climb on the counter to reach stuff in the top shelf. We had to pull everything out of one cabinet to reach stuff in the corner cabinet.

I decided that an ideal kitchen should:

• Be big enough so that opening one appliance or cabinet won't block another.
• Have doorways placed so that all corner cabinets are accessible.
• Be adjacent to a pantry so that we don't need to store things where we can't reach them.
• Be open to the rest of the house so that people working in the kitchen don't feel left out.
• Support the flow of work: Supplies in one area (fridge, dishes, pots & pans), cooking in the next area (stove, microwave, & counter top for food preparation), and clean up in the last area (dishwasher, sink, drying rack, & an under-counter trash can).

Another problem arose when I started living on my own and had to haul groceries from my car to the kitchen. I thought that houses ought to be designed so that the distance between the car and where the groceries go is as short as possible. The breakthrough in solving this puzzle came from a magazine. Maybe it was This Old House. It had an article that described a mudroom-pantry. What a great idea!

I decided that an ideal mudroom-pantry should:

• Be the hub of the house, with doorways to the garage, kitchen, office, a powder-room, and the rest of the house.
• Have cabinets on one side for use as a pantry. (Drop off half of the groceries here.)
• Have cabinets on the other side for purses, keys, coats, hats, gloves, scarves, boots, and so on. Each person in the household should have his or her own cabinet. Each cabinet should also have a mirror and other supplies for last-minute grooming.
• Have a bench for sitting on when taking off or changing shoes.
• Have a counter top for temporary placement of mail, newspapers, and other paperwork.

When I was renting apartments, I hated having to haul laundry to another building! Now that I own a house, I still grumble about having to haul laundry up and down two floors. It's better than having to go to a laundromat or to the landlady's basement, but it still sucks. I decided that an ideal laundry room should be on the same floor as the majority of bedrooms in a house.

Also, our current house has radiators. I've decided that I like radiators more than any other heating system that I've lived with, which has included forced-air heating and a kerosene stove. Radiators give off subtle heat, and are better for allergy sufferers than forced-air heating. The problem with radiators is that they limit furniture placement options. When AF and I were watching This Old House on TV one day, I was amazed to learn about radiant floor heating. You have the same subtle heat as radiators, except it comes from the floors!

Alas, we probably won't be able to implement all of these ideals in the Jessup house. AF broke it to me gently that I can't move the laundry appliances upstairs. But maybe we can implement pieces of the ideal kitchen, most of the mudroom-pantry idea, and radiant floor heating. That's a heck of a lot better than our current house!