I’m puzzled

October 7, 2008 at 5:13 am 8 comments

     I know there are people out there who dislike the “puzzle” reference to autism that comes from autism organizations. “My kid’s not a puzzle,” some parents say. “I’m not a puzzle, I’m a person,” say adults with autism.

     Well, brace yourselves, I’m about to take a position. I say my kid IS a puzzle, and furthermore, I think ALL kids are puzzles. But I don’t think it has anything to do with autism. We are constantly striving to make sense of children and figure out how they think, what they think, why they think it, and what we need to do about it. That’s our job as parents, caregivers, and teachers. Figure out what the child needs and manage to help him get it.

     The part of C that puzzles me the most relates to his medical issues. Far from being simple, we’ve bounced from specialist to different specialist for years. Each runs some tests, and finds some problems, but nothing tangible enough to come up with a diagnosis. Each one scratches his or her head and admits they’re stumped. Then they send us to another specialist. We’ve seen them all. Twice.

     I’ve somewhat given up on ever finding a medical diagnosis for him and have instead decided not to worry too much about it. His health for the last couple of years has been pretty good. He’s made it two blessed years without having his yearly case of pneumonia (yes, there’s a test for it, and yes, he does have low clinical immunity to pneumonia). Despite his not using toothpaste, his teeth aren’t rotting and falling out. And even though his diet is nowhere near balanced, he manages to seem fairly healthy despite a low weight and height that never seem to get quite back on the growth charts.

     So we go with that until something comes up. His strangest affliction so far seems to be his propensity to limp when he gets a fever. It’s not a muscle fatigue kind of limp, but rather an “I can barely walk” sort of limp. Painful. The first time this happened, he ended up in the hospital, his doctor was so alarmed (I liked her the best, wish she could’ve moved with us). The second time, two months later, followed a bout of double pneumonia. Given I can count on one hand the times in his life he’s actually had a fever, I can tell you without a doubt that every time he gets a fever, he can no longer walk. Last year he spent a week on the couch with a 103 fever, a limp, and no other symptoms. Enter clueless doctor number 435, scratching his head while asking, “Do you think he could be faking it?”

     Today, however, C has a fever. Yesterday he had a fever. I waited, but the limp hasn’t arrived. Yet. It could be due to the fact that this fever is lower than the others. He actually seems just fine. There’s some weird looking bug bites on his ankle (leftover from this weekend’s camp out). Given his history, off we went to the doctor today. Back again to doctor number 435 (don’t ask me why, but the guy gives me good blog material), and again no solution. The fever “could be,” or then again “could not be,” related to the bug bites. I’m not sure why I bother, but somehow it gave me comfort to know that there’s not some huge, recognizable bug bite/fever/deadly infection running around. The doctor didn’t seem to remember the fever/limp combo from last time, and I didn’t remind him.

     We’ll see what tomorrow brings.

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Entry filed under: autism. Tags: , , , , , .

Worse for wear Wordless Wednesday (well, sort of)

8 Comments Add your own

  • 1. Jesch  |  October 7, 2008 at 6:06 am

    I’m a puzzle too.

    Reply
  • 2. Sheila  |  October 7, 2008 at 6:34 am

    Darcy,

    Do you think that maybe there are too many people who get offended too easily? People might think I’m one of them because of the way I rant and rave at times.

    Supporting positions are wonderful! We don’t think of intruding upon someone else’s position. However, there are others who think nothing of their trying to bust down the doors of our positions…as if it’s not okay for us to voice our stand when it differs from theirs.

    You sure sound like you have a puzzle to work on with this fever mystery. Keep sharing the details in you blog. I think the more that others add their pieces to this table, the better our chances are for seeing more clearly what to suspect verses what to eliminate.

    Yes, I think there are people out there who get offended too easily – I know I’m overly sensitive, even though I try not to be! What bothers me the most is that even within the autism community, there are factions so angry and so certain that their position is right (a perfect example being both sides of the vaccine issue) that there’s no good dialogue coming from either side! I guess that’s what happens when you try to put a “one size fits all” stamp on any group of people, which is what I wanted to say about your latest post. I think it’s dangerous to try and assume anything is true for ALL people who share a diagnosis, a skin color, or anything else.

    I do think autism is a bit of a puzzle. But not for the same reasons that the advocacy groups espouse. I really do think all people are puzzles, and we spend our lives trying to figure out other people in an effort to bring our relationships with them even closer. So in terms of my little guy, it’s all about helping him be the happiest, healthiest C he can be.

    As always, thanks for the comment!

    Reply
  • 3. mama mara  |  October 7, 2008 at 7:47 am

    In the words of the King of Siam, “This is a puzzlement.”

    I can’t go back into your blog now to see: were you the one who talked about the research studies that found some kids with autism had improvements in certain autie-symptoms (eye contact, speech/language, social behavior) when they had a fever? Besides the limp, do you see any other changes for better or worse?

    I’ve had some friends who have had that happen. C is not one of those kids who is better when he’s sick. He is calmer, certainly, and more compliant. But I think that’s just from sheer fatigue, poor kid! It’s weird…I think the closest we’ve come is one doc who thinks it’s all related to some auto-immune disorder no one has been able to isolate. We know he has it – the tests show something, but it doesn’t fit into any specific category – yet. Ugh. It’s frustrating!

    Reply
  • 4. robinaltman  |  October 7, 2008 at 4:38 pm

    Wow. I just bought a big autism puzzle pendant, and I was really looking forward to wearing it. I didn’t realize anyone objected to the symbol. Super bummer. Will people get pissed if I wear it to work? Should I give it to someone I hate?

    I’m emailing you right now!

    Reply
  • 5. goodmum  |  October 7, 2008 at 5:42 pm

    Aw, I’m sorry to hear that C has a fever. That limping is definitely a puzzle. It’s so frustrating not “knowing” what’s ailing our kids, isn’t it? I actually just whined about this a little bit on my own blog. Just a little. 😉

    I hope C is feeling better tomorrow. Please keep us posted.

    I’ve been MIA so I need to go catch up on my reading! But yes, it is a puzzle, and it drives me nuts. I’m such an answer person, a knowledge person, that I’m convinced there’s an answer out there somewhere and we just don’t know it yet. Weird.

    Reply
  • 6. robinaltman  |  October 8, 2008 at 9:07 am

    How’s C feeling?

    Reply
  • 7. embracingspirit  |  October 8, 2008 at 1:06 pm

    awwww poor guy. Hope he feels better soon. All kids are puzzles, in fact all PEOPLE are puzzles– and that is simply what I love about it all…:)

    It certainly does keep things interesting, huh?

    Reply
  • 8. Kathie  |  October 10, 2008 at 5:30 pm

    I agree with you…all kids are puzzles! Did I ever tell you that our little guy has done “can’t walk” thing twice? Both times after an immunization. (chicken pox once, flu shot anouther time) The dr says its a virus attacking his joints,(I can’t recall the name…) but he can’t react the normal way, can he? That would be way too predictable.
    Sure hope C is feeling better. I adore that picture you posted!

    Kathie

    I didn’t know that about him! The first time it happened, they did ultimately say viral arthritis, but we were told later that it usually only happens once in a child’s life – that it’s very rare. But perhaps not for our boys! Interesting that your guy’s happened after shots. C’s first time was related to nothing – he limped for 5 days before spiking a 103.5 fever. The next time it was after pneumonia. Then there were a couple more in between. Last fall it was a 103.5 fever, no walking, and no other symptoms. WEIRD!

    Anyway, good to “see” you. Hope all is well!

    Reply

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