Friday, October 12, 2007

Suffering from blog deprivation

Wow! I haven't written a post in over a month.

Part of the problem is that I now have a long commute, 45-90 minutes each way. I spend all of my time just surviving now.

The other part of the problem is my Internet connection at home. It took over a month for Verizon to give us a dial tone at home. Then it took me a week or so to call my Internet service provider and inform them of my move. That's when I learned that I can't have DSL at our new house. We can have dial-up or cable.

As I understand it, if we get cable, I would have to change my e-mail address and then maybe I'll be able to import all of my old messages into the new e-mail account. I want to avoid that if I can, so I wanted to give dial-up a chance. So, theoretically, we now have dial-up Internet access.

However, when I tried to use it, it wouldn't work because our phone line had the stutter sound to indicate that we have voice mail. And we couldn't check our voice mail. (Murphy's Law?)

I called Verizon a week ago and solved the voice mail problem, so now we should have dial-up access. I just haven't had time to try it. (I'm posting from work. Again.)

I'm worried that I've lost all of my readers with my long absence, but just in case, here is an update:
  • The appointment with the counselor went well, I think. AF still had not read the Starving Brains book, so the counselor suggested that we put off scheduling the next visit until after he has read it. Her reasoning is that once he has started reading some of the things that I've been reading, then we can discuss it more easily. The problem is that I read fast and he seems to think that he has to keep up. AF promises to read the book, a little every night, but I'm not sure whether this is happening.
  • We drove up to Rhode Island on Friday 9/7/07. It took over nine hours. JF called it "road trip island" and seemed to enjoy the long ride. We shed some tears at the service for AF's mom. JF played with a boy cousin who is two years older and has only one arm. The boy couldn't understand why JF wouldn't answer his questions or pay attention to him. (How do you explain autism to a six-year-old? I didn't bother to try.) We drove home on Sunday 9/9/07.
  • On Monday 9/10/07, we drove down to Virginia Beach, to visit a new DAN doctor. We had been under the mistaken impression that it would be only three hours each way. It was five and a half. Doing this immediately after a long road-trip weekend was traumatic. However, AF actually accepted this DAN doctor enough to go along with his suggestions. We are planning to try a magnesium-B6 supplement, a melatonin supplement, a urine/stool test, and a blood test.
  • On Monday 9/17/07, JF started attending a Howard County special education preschool program. (I hate the acronym that they use: RECC.) It's two and a half hours per day, five days a week, so he's getting less time than he did in Montgomery County (3 hrs x 5 days), but I told them I would wait and see how well he does.
  • We settled on the new house on 9/21/07.
  • JF is off of Lamotrigine (generic Lamictal, the anti-seizure medication). Back in July, the neurologist had said that we should gradually reduce the Lamotrigine. If we saw any seizures (mini or otherwise), we were to go back to the previous week's dose and that would be his dosage henceforth. We've reduced it to nothing and have not seen any seizures. (I'm worried that we're missing something, because he did have an abnormal EEG earlier this year.) We have an appointment with the neurologist sometime this month.
  • I asked JF's new teachers to evaluate whether he needs occupational therapy. Wednesday 10/10/07 was the IEP meeting. Both AF and I attended. They decided that he is eligible. Yay! Accomplishment! (But I think they are squeezing the OT time into his existing 2.5 hr schedule.) At this meeting, I asked the teachers what they think of our plans to start giving JF a magnesium-B6 supplement and a melatonin supplement. His new teacher said that she's seen many students benefit from melatonin.
  • I haven't had a chance to start job-hunting yet.
  • AF bought a new toilet for the new house. Years ago, a guest at our old house had clogged the toilet. Apparently, this had been traumatic for him. So he has spent $200 on a toilet that was advertised as being able to flush an entire bucket of golf balls.

On that note, I think I should sign off. On my way home, I'm stopping at Barnes & Noble to spend a gift card that AF & JF gave me for my birthday. Wee!

Wednesday, September 5, 2007

We've moved!

The settlement on 8/24 went well! Yay!

We weren't sure that the house would sell until we were in the settlement meeting, and the title company representative came in the room announcing that the buyers were fully funded. Then we had two days to move. My family & AF's family helped, and it wasn't an organized move by a long shot, but we got all of our stuff out of the old house just in time. We're still trying to sort out the aftermath at the new house.

Buying the new house hasn't happened yet. AF and his brother are still making arrangements, but they hope to have a settlement by the 16th. Until then, we're technically renting from AF's brother. We had to create a contract showing that we're renting so that I could enroll JF in school. We're still waiting for a placement meeting, to figure out which program JF should attend.

JF came down with a fever soon after we moved, and it went as high as 105.3, but it actually blew over in only two days. He's attending a new daycare now and he apparently loves it as much as the old one. I think he misses the old house, daycare, and school because he keeps talking about the "blue house" but he doesn't seem to be traumatized by the sudden move. He's good at going with the flow, I guess.

We still don't have Internet access at home, so I'm posting this from work. Maybe the next time I post, it will be from home.

Upcoming events:

  • Second appointment with the counselor will be this Thursday evening. (This was postponed from 8/30.)
  • The memorial service for AF's mom is this Saturday in Rhode Island. We will drive up on Friday and drive back on Sunday (at least six hours each way).
  • JF has an appointment with a DAN doctor on Monday in Virginia Beach (three hours each way). This is an appointment that I had made back in June, before AF said "no more" to the DAN stuff.
There are other things that I want to write about, if only just to vent frustrations, but I don't quite feel right about doing so at work. (I'm doing this on my own time, but anyone could walk up to my cubicle at any moment and look at my screen.)

Tuesday, August 21, 2007

Friday at 10 AM

The settlement date has, in fact, moved to Friday 8/24/07. However, this time, we have a time-slot! Our settlement is scheduled for 10:00 AM.

This is huge! Until now, the time has always been TBD. I've been told that they don't schedule a time until everything is approved and they are certain there will be no surprises. Even so, we're still doing a 2-day rent-back to avoid moving our stuff before settlement (which would be a risk).

Other updates:
  • I think the fiber and/or the probiotics are starting to help me with what I assume is IBS. I've had two good days in a row!
  • In case you are wondering, we have not tried the probiotics blind-test on JF yet, and we will not be able to try it until he gets sick enough for antibiotics. And I won't be able to post the results of our blind test until after he has been on antibiotics four times.
  • I gave JF a full bath with a half-cup of epsom salts in the warm water (rather than just a foot bath). I put his nebulizer mask on him to deter him from drinking the bathwater, and that helped. (I still had to stop him from dipping his face, mask and all, in the water.) Based on just two uses of epsom salts on him, I think it makes him sleepy 12-36 hours later, reduces the effect of mosquito bites, and maybe improves his immunity. But I'm not sure.
  • My computer is working again. Fixing it involved three separate calls to the number that came with our 3-year coverage, ~$90 at BestBuy, the purchase of an external drive housing, my work laptop's virus-scanning software, and my work laptop's CD-burning capability. I now have all of the files under My Documents backed up on CD, and I plan to back up files every time I do my finances, so if this ever happens again (God please forbid!), I will be able to fix it much more easily.
  • I should clarify something I wrote in my previous post. For most students in Montgomery and Howard counties, school starts on Monday 8/27/07. However, for the Montgomery County PEP class starts on 9/4/07. I'm hoping Howard County also delays the start-date of their equivalent pre-school special education class. (I'll call tomorrow to find out.)
  • This evening, AF bought a two-wheel bike with training wheels for JF. It seems like just yesterday, he was unsteadily trying out the big-wheel tricycle. Could he really be ready for a bicycle? Already? Apparently so. He hopped on and started pedalling as if he'd been doing it for years.

Saturday, August 18, 2007

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.)

Wednesday, August 15, 2007

Rest in peace, NHF

My husband's mom died yesterday. Her decline began a year and a half ago, when she went to the doctor for a sore throat and difficulty breathing. It turned out to be a cancerous tumor in her throat. They removed it and started a treatment of chemo and radiation therapy. She's been bouncing back & forth between hospitals and nursing homes ever since.

Just over a week ago, my husband learned from his siblings that his mom was getting worse. She wasn't eating as much. She was tired of fighting for survival. They started giving her hospice care. As I understand it, this means they gave her drugs to make her more comfortable, drugs reserved for the terminally ill.

Yesterday, AF called me at work and said just two words: "She's gone." I knew what he meant.

I think the treatment (chemo & radiation) was worse than the disease.

AF drove up to New York this morning, to visit with his dad. He'll be back tomorrow evening.

I asked him whether he'd like to go to church this Sunday. I figured, it might be a comfort to him. He thanked me for the suggestion, but he said that the golf course has been his church these days.

There will be a memorial service, but I don't know when. I didn't really get to know her very well, but I want to do everything that I can to support my husband and his family while they grieve. I'm even thinking about singing Amazing Grace at the memorial service, but only if no-one else wants to do so.

Death kinda puts things into perspective, doesn't it? There were several other things I wanted to write about, but I think I'll save it up for next time, because I think NHF deserves a post all to herself.

Thursday, August 9, 2007

Back from Vermont

We came back on Saturday, and I haven't had time to blog. I'm stealing time for this post.

Our vacation was great. We had fun playing in the lakes (Rescue and Pauline). We also enjoyed nearby Bromley, especially the Alpine Slide.

In the comments to my previous post, there were questions about the probiotics blind test. I'll do my best to answer them:
  • We haven't done the test yet because JF hasn't needed any antibiotics yet. It might be months or years before I can report the results, but I will (if I can).
  • The doctor didn't recommend any specific kind because we already had some from Dana Laake's recommendations: Kirkman's ProBio Gold. This is in capsule form, but we open the capsules and mix it into JF's morning beverage.

The house is under contract, but I'm trying to not get my hopes up that it will all work out.

AF and I still have not been able to work out our differences about biomedical treatments for JF's autism, and the stress is starting to disrupt other areas of our lives. So we're planning to see a counselor. We're hoping the counselor can help us work things out. I'm trying to keep in mind that the counselor will have suggestions for both of us (not just for my husband).

I'd like to write more, but I gotta finish getting ready for work.

Thursday, July 26, 2007

Short post

We're going to Vermont for a week-long vacation this Saturday.

AF agreed that we could give JF epsom salt foot-baths before bed to try to calm him down. (JF has had insomnia, difficulty falling asleep at bedtime for months.) But when he bought a carton of epsom salts, the age-specific directions frightened him. So now I'm waiting for him to call the pediatrician to make sure it's okay to use on a 4-year-old. I'm frustrated because I can't find anything on the Internet that says epsom salt baths have been proven safe for children. It's like trying to find an article on the safety of H2O!

I finally went to the doctor yesterday for myself after two weeks of diarrhea. (You don't mind if talk about diarrhea, do you?) The nurse-practitioner that I saw is a very nice lady who actually listens to me, and anticipates my concerns. She also mentioned that her son has Asperger's. I wanted to ask her more about him, but I didn't want to be nosy. Anyway, she said I might have irritable bowel syndrome. She suggested I get more fiber and water. (I probably have been skimping on the fiber since I started the GFCF diet.) She also had me give some stool samples to the lab.

We took JF to a follow-up visit with the neurologist on Tuesday. She (the neurologist) said we should gradually reduce the Lamotrigine (generic Lamictal) until we start seeing seizures again. This will tell us what JF's dosage should be. During this visit, I tried to persuade the doctor that his epilepsy, autism, allergies, asthma, and frequent illnesses are caused by nutritional deficiencies. Her response was to refer us to a gastroenterologist. Better than nothing, I guess. But the best part of the visit was the doctor's suggestion that we conduct our own blind trial to prove the effectiveness of probiotics on JF. Two out of the next four times that JF is on antibiotics, AF will give JF probiotics without telling me which two times he's doing it. It will be my job to report to AF when I see the negative effects of the antibiotics. Isn't that a great idea?