Fever!

Well.  The last six weeks have been insanity here.  It is the end of the school year.  My husband is a teacher at the local high school, and we are used to June craziness.  It’s always hard.  This year, I wasn’t teaching, but Jake was finishing kindergarten.  We had four field trips, (which I volunteered to help with, a dream come true!) class parties, and of course, sick kids.

Jake gets a fever when he is stressed.  Or overtired.  It is miserable and predicable.  My husband, mother and I have all caught the pattern.  He missed 26 days of school this year.  Of those, 1 was for a family trip, 7 were medical appointments or fun days off, and the rest were due to the fevers.  That is a lot of fevers.

They almost always come along on a Friday.  That brings the lovely addition of ruining any fun plans we had for the weekend.  Jake gets miserable, lethargic, whiney, and very snuggly.  The snuggles and sweet lovey conversations are the best part.  But I hate seeing him so sick, with no other symptoms.  He loses his appetite and we go through bottles of Tylenol and Advil.  We have had so many fevers this year that I have started keeping a ‘fever journal’ to show the pediatrician when we see her next.

I wonder about Celiac disease, and I am looking into the gluten free/casein free diet.  I picked up a recipe book from the library yesterday, and it said this in the introduction:

“A short time later, Eric started to respond to the diet… Eric’s mysterious fevers disappeared.” (The Autism Cookbook: 101 Gluten-Free and Dairy-Free Recipes by Susan K. Delaine and Peter J. Bauth)

Of course, I have Googled ‘autism and fever,’ and I did learn some interesting things.  There is a medically documented correlation between fever and improvement of autistic symptoms.  There are enough parents who have noticed their autistic kids improve when they have a fever that it has been studied, documented, and put through scientific and statistical analysis.

A study discussed in Time magazine found the following:

The brain region that drew the attention of the authors is known as the locus coeruleus, a small knot of neurons located in the brain stem. Not a lot of high-order processing goes on so deep in the brain’s basement, but the locus coeruleus does govern the release of the neurotransmitter noradrenaline, which is critical in triggering arousal or alarm, as in the famed fight-or-flight response. Arousal also plays a role in our ability to pay attention — you can’t deal with the lion trying to eat you, after all, if you don’t focus on it first. And attention, in turn, plays a critical role in such complex functions as responding to environmental cues and smoothly switching your concentration from one task to another. Those are abilities kids with autism lack.

Certainly, many other parts of the brain govern concentration and attention, but the locus coeruleus does one other thing too: it regulates fever.

http://content.time.com/time/health/article/0,8599,1889436,00.html

While this is utterly fascinating to me, it does nothing to help me ease Jake’s fevers, or to prevent them.  I can see a connection to the noradrenaline and being over tired or stressed.  Perhaps the locus coeruleus is having trouble maintaining the high octane life and shuts down, resulting in a lack of noradrenaline and also, a fever.  That’s my personal hypothesis, however.

Aside from drugs, it seems the only thing I can do is to manage Jake’s stress levels better.  I will have to work harder to keep him relaxed, and work with him to learn some strategies he will actually be willing to use to lower his feelings of panic.  And I guess I will have to look into the diet with more conviction as well.

What (on God’s green earth) is there to say?

Alright, here we are, summer holidays.  Jake and Aiden are thrilled that school is over and they are facing an endless cycle of cartoons, play time, and trips to the beach.  It is my absolute favorite time of the year.  And yet, we are now four whole days in, and some patterns have already become painfully clear.

One of the hardest things that my husband and I faced last summer was Jake’s constant interruptions.  All of a sudden we were all home together, for the entire summer, and no one, NO ONE but Jake could speak.  We would go for hours, looking at each other, trying to start conversations and giving up.  We talked to him about interrupting.  We tried to model conversations.  We tried to walk into a different room for three minutes to quickly figure out who was grocery shopping and who was cooking dinner.  Nothing worked.  He followed us.  It was so hard.

We were relieved in knowing that we were getting help.  We had started having home visits from an energetic and encouraging family support worker.  While technically out of her usual cliental, she took us on as a favor to Jake’s soon to be kindergarten teacher. She arranged for our first visits with the occupational therapist and we felt so thankful to be getting help that somehow we survived.  But it was so hard.

This summer, my husband has a new iPod that he can text with.  He joked with me that we can just text each other all summer so that we can communicate while in the house with Jake.  As we laughed, we realized that this is an awesome idea.  It doesn’t deal with the actual problem, but it may save our sanity.

Jake has learned so much this year, and the interrupting was listed right away as one of the goals we wanted to make a priority with his behaviour consultant.  So they have been working on recognizing whether someone is ‘available’ for conversation.  It is getting better.  In the last four days, there have been many times when Jake started talking to me and asking for my attention and I responded, “I’m just not available right now, give me five minutes.”  I was busy doing something like cooking on the hot stove or keeping Penny from falling off of her change table, situations not obvious to Jake yet.  He has followed up with, “Mom, are you available now?  Now?  Now?”  So it is a work in progress.

His interruptions are varied, from chants that make no sense whatsoever, but seem musical in nature to demands for attention so that he can discuss the fine points of his newest Lego creations.  He mimics both music we have played and TV he has watched with great joy.  To this he adds his own ideas of what is important, a request for pretzels or to create a new sports playoff bracket.  None of it is bad, or really hard to deal with, the problem is just the constant nature of his verbose interruptions.

In two more days my husband joins us at home full time for summer.  I am hopeful, and praying for a smoother summer for all of us than last year.  Jake has learned much, and is also doing more independent play.  We still have a long way to go on the interrupting, however.  It’s one of the most difficult things about Jake’s autism for our family.  Aiden has started repeating, “I want to talk, I want to talk, I want to talk,” until we get Jake to be quiet enough to hear what Aiden has to say.  It’s cute, and heartbreaking.  I want everyone in this family to be heard, to know that they are valued, and to be able to listen to each other.