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!

IEP meeting

I have the impression that many IEP meetings are frustrating and painful experiences. Well, maybe I'm doing something wrong, because the IEP meeting that I attended today was a relatively pleasant break for me, compared to all of my pain and frustrations at work!

There were only four attendees: myself, JF's teacher, JF's speech teacher, and the chair of the meeting from Program Support. As I may have mentioned before, I really like JF's teacher. I've met both of the other two women before, and haven't had any problems with them.

During this meeting, I raised a few concerns:

• Number of hours per week
• ESY
• Pre-kindergarten

And then there were miscellaneous discussions, too.

Number of hours per week

I was worried about the number of hours of instruction for JF. I asked whether it could be increased from 15 hours per week to 20. They asked why. I told them about the recommendation in the DAN! website for 20-40 hours of ABA per week. The first response was that JF doesn't need intense ABA therapy. He does well with some ABA, but if that was his only therapy, he would actually make less progress than he is making now. They said ABA isn't ideal for higher-functioning kids like JF. I think they also said that ABA would reduce his ability to generalize what he is learning. They suggested that I look into Applied Verbal Behavior (AVB). They also mentioned something about a Pre-K Autism program.

I said, "I'm not worried so much about what type of therapy as I am about the amount of time." They asked why. I said, "Because more is better." They said that they don't have a program for kids like JF with 20 hours per week. The program that he's in, PEP-INC, has the longest amount of time per week. I asked whether it should be about what resources the county has, or what JF needs. They agreed that it should be about what JF needs.

Then JF's teacher made the point that having JF in daycare with his (neurotypical) peers is crucial. One of his strengths is his tendency to imitate what he sees and hears, and a large part of his week should be spent with his peers, so he can observe how they talk, behave, and interact. This was persuasive for me, because the more time he spends in a preschool program, the less time he would have with neurotypical peers.

His teacher continued, asking whether we know about the autism waiver. We don't. She explained that it is money (from the state) to explore outside therapies. However, there is a long waiting list, and higher-functioning kids are less likely to get it.

ESY

I wanted JF to receive ESY services. Fortunately, the team determined that he will. The reasons included:

• Presence of emerging skills or breakthrough opportunities: He "is beginning to have more spontaneous speech and decreased echolalia. The team is concerned that he might lose those skills over the summer break."
• Special circumstances that require ESY: He "has missed a lot of school due to illness." (For each of the past two illnesses, JF lost a week from school. Someone at the meeting mentioned that he has missed about a month, total.)

The ESY dates are 7/2/07-8/3/07. Right away, I asked whether there is any wiggle room in these dates, because the last week of these dates conflict with our family vacation in Vermont. The answer was, "There is no wiggle room, but you should go ahead with your vacation plans anyway. It will be good for him to be with his family on vacation, even if it means that he'll miss a week of ESY."

I asked whether this decision to give JF ESY services would transfer to Howard County when we move. (I mentioned that we are still planning to move, but we don't know when.) They said yes, with the new state IEP form, any other county in Maryland should honor this decision. I speculated that Howard County might not have the same dates for ESY. JF's teacher said that it's usually in July, because that gives the school time to hire and train new teachers before the new school year starts.

Pre-kindergarten

I asked whether JF should be enrolled in pre-K in the fall. (He will turn four in May.) JF's teacher said that the Montgomery County pre-K program is a special program under Head-Start, with enrollment based on income. The goal of the program is to help the less-advantaged kids. It's five days per week, but only 2.5 hours per day. There are about 20 kids in each class, with one teacher and one aide. The PEP-INC class is a much smaller ratio, and JF still needs that smaller ratio.

On the other hand, they said he might attend a normal class by kindergarten!

I don't remember how they worded this, but it made my heart skip a beat. I pictured JF as a completely "normal" five-year-old, playing and conversing with his classmates. It wasn't until I typed the above statement just now that I realized, they weren't making any promises about JF outgrowing his developmental delay. They were merely talking about including him in a regular kindergarten class. Oh, well. Even that is progress.

Miscellaneous discussions

JF seems to be learning a lot of Spanish. He apparently likes to say, "No mas, " to one of his PEP classmates.

JF has days where he makes progress on a skill, but then one day he'll seem to forget the skill. His teacher called these his "ups and downs." I asked whether this was normal. She said, "No, but we have to address it."

JF's speech teacher mentioned that he sometimes seems afraid to be wrong. He knows the answer, but hesitates about answering. She suggested, when we're working with him at home, if he gets something wrong, we should respond gently, as in "Yes, it looks like a chicken, but it's a turkey." I told her that we generally do respond that way to JF's mistakes at home, but I admitted that I might be responding too strongly when he makes a mistake getting dressed. I speculated that this might be where he's getting his fear of making mistakes. The speech teacher suggested a book by Boynton called Oops. And we should let him see us making mistakes. She also suggested, when we're waiting for him to answer a question, sometimes it helps to look at him expectantly.

I mentioned that JF bit my chin last night and then laughed at me when I screamed in pain. Both teachers offered a series of suggestions that I've probably mentioned here before. Once we were past that, I reminded JF's teacher how she had responded to JF once during a home visit, when he spat on the table. I told her that AF and I still haven't figured out how to duplicate that tone of voice. She has a knack for making him nearly cry when he's done something bad. When we try it, he just laughs at us. She said we should use a deep, stern voice, authoritative without being angry. The speech teacher said sometimes it helps to get down on the child's level first. She said this suggestion came from "the Nanny book" (related to the Super Nanny show on TV).

So that was JF's IEP meeting. I really don't know whether I did a good job of getting my son what he needs. Maybe I'll be wiser and more confident about these things the next time.

Meanwhile, AF took JF to Dr. Buck, the surgeon who repaired JF's hernia, for his follow-up appointment at 4:00. AF called me a short time ago complaining about the long drive to get there, and the long wait to see the doctor. And after all that, the doctor looked at JF briefly and said he's fine. Of course, he was relieved that JF is fine, but annoyed that it wasn't a big deal to the doctor.

Then, AF took JF to the pediatrician's office. JF was out sick all last week, with a fever, runny/stuffy nose, and a cough. The fever went down by Friday, but the congestion and cough continued throughout the weekend. On Saturday night, his cough had started to sound like asthma, so we gave him albuterol. It seemed to help him enough so that he could sleep. We gave him albuterol again last night, too. So today, AF called the pediatrician and asked for an appointment sometime today after the 4:00 appointment. The best they could do was 7:15 PM.

AF just called me with the results of that visit: bronchitis and antibiotics. Go figure.

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.