Saturday, February 10, 2007

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

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

An update on JF's health

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

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

Observing JF in his class

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

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

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

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

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

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

Enjoying a home visit

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

She gave us:

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

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

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

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

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

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

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

Solving a mystery about JF's behavior

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

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

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

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

Progress on dealing with autism

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

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

Weekend plans

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

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

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

5 comments:

Mom without a manual said...

I'm glad to hear that you were able to keep all of your Thursday appointments!

There is so much in your post I am not really sure what to comment on! I'm glad you got to observe. It is really amazing to see how our kids are when we aren't there with them. Sometimes it is very eye opening!

I'm glad your homevisit went well. Although I am discouraged by her biomedical blow off. Not surpised however. People are either behavioral or biomedical. Not many minds bend both ways.

I would encourage you to not walk away just because of the chelation talk. Our DAN doctor did not push chelation. There is much to our children's chronic illnesses beyond the mercury. And even if you were open to addressing the metals it would take months before you could start. A good DAN doctor will stabilize the chronic illnesses before moving forward.

Truthfully, your son's chronic illnesses do match the profile for a child that could benefit from some of the other natural therapies. But I am not a doctor either.

I can only say that my son has benefited from both types of interventions. And I truly see him responding better to the behavioral therapies now that we have biomedical supports in place to help him feel better in his body. No doubt that it was pretty hard for him to keep up with his Verbal Behavior curriculum when he was chronically miserable!

Anyway, my two cents.

Em said...

I'm so impressed with how you are so "on top" of all of this. Your son is so lucky to have such a strong advocate in you!

Anonymous said...

It sounds as though JF's teacher is a gem. And from the other side of that comment, it sounds like she has cooperative and enthusiastic parents to support what she is doing.
The best success is when home and school can work together. And it sounds as though you are working hard to do just that. Bravo!

WarriorMom said...

Thanks, everyone!

mjsuperfan said...

I understand your wanting him to take your son to a music class, rather than always finding something social. I drag my twins to things hoping they'll socialize, and I do think it's helpful for them to be around their peers in all different settings. But I also want to encourage them in the areas they really enjoy (as Temple Grandin recommends).

I guess we've got to find a balance. We can't spend every second trying to fix their "weaknesses". And if your son gets really into music, that'll be something he can use to connect to other people as he gets older.