March 21, 2008 at 10:29 am 5 comments

     I’ve never felt like C’s diagnosis of autism was the end all diagnosis. In my mind, there’s more to the story. I remember when he was a baby, long before the word “autism” came into our lives, I used to sit up, late at night, putting different combinations of words into google. Thinking if I just came up with the right grouping of words I might find out what was going on with him, I’d pour through the latest neurologist’s report looking for keywords I might try. “Low set ears, wide nasal bridge, small feet, sensory issues.” “Failure to thrive, developmental delay, easy skin scarring, low muscle tone.” “Delayed speech, motor planning problems, food allergies, asthma.” As if I could put in the ingredients and out would pop the name of the dish.

     What came out of google were unpronounceable, horrible maladies no one should ever have to know about, let alone experience. Pictures of children who didn’t live past the age of one flooded my screen, and I cried as I read about syndromes and disorders I knew my child didn’t have. Yet the researcher in me wanted, needed answers, so I kept searching. I was never one who didn’t want to know; to me, knowledge is power, and I wanted someone, somewhere to be able to give us answers. 

     Of course no one could.  We have certainly closed in on many issues that are likely the explanation of all the things that have happened to him since his conception, of which autism is only a part. But now the google searches are done, the medical records are stored in a notebook that accompanies him to any doctor appointment but otherwise sits mostly closed, and I have a stack of development and autism books that sits unread on my bedside table. Yet what I know now, and have come to accept, is that we’ll probably never have an answer, because to have an answer, we’d have to have a reason, and I don’t think we’ll ever have that.

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An Easter ditty Hello? Hello?

5 Comments Add your own

  • 1. awalkabout  |  March 21, 2008 at 9:29 pm

    And truly, D, what would the answer get you besides a title to the masterpiece you’ve created? What’s important is the developing little person that each day brings illumination to another part of what he or she will be. I find I’m willing to let the “big picture” slip away to hold onto those small things that show me there’s hope every minute.

    And that’s exactly where I’ve come to land. No more obsessing about all that stuff all the time! We’re always still trying to help him feel better phsycially – tummy, muscles, etc., and then other things seem to fall into place when he feels well. It took a long time for me to conclude that an answer would never come, and didn’t really need to. 🙂

  • 2. Jesch  |  March 22, 2008 at 3:40 am

    well said, awalkabout

  • 3. FXSmom  |  March 25, 2008 at 5:54 am

    It makes me truly thankful that I didn’t have a computer or internet when we were trying to find out what Matty’s dx was.

    I know – it was a tough time for me, and I scared myself a lot. But I also gleaned some good info that came in handy later. I’m such a researcher by nature, and I still sit down in front of google with the latest bloodwork and testing in hand, but nothing like those long, late nights!

  • 4. lastcrazyhorn  |  March 30, 2008 at 8:09 am

    I had tummy problems for the longest time. They largely stopped when I got on anti-anxiety meds.

    But things that help, that I’ve discovered through the years . . . when I’m stressed, no lactose products (I have stress induced heartburn, vertigo and lactose intolerance); lots of water–no sugary drinks/caffeinated/carbonated; if I feel a stomach crisis coming on, I should take two tylenol and start drinking as much water as I can stand without getting sick and see if I can’t flush it through before it really revs up; water in the mornings before anything else; relaxation exercises while I’m lying in bed (if you sleep relaxed, your stomach does better the next day); cut out beef totally, pork mostly, and live off of chicken and fish; no raw veggies, ever; stay away from pasta/tomatoes on bad tummy days; hot peppermint tea; if constipation is a problem, eat grapes or apples (both natural laxatives) but not to excess and take fibercon every day; stay away from foods with lots of preservatives (no slim jims ever); if diarrhea is the problem, ignore the rule about how cheese is a constipator (doesn’t work like that in most people with IBS and other tummy issues–has the opposite effect, in fact); music therapy is a good way to get out overwhelming emotions (anxiety, anger etc), especially for aspies, since we tend to have problems with locating and naming our feelings (here’s another word for you – alexithymia:;
    man, some of these things I’ve been doing for years . . . it’s hard to remember what life was like before . . . yoga helps with gas too . . . heat too of course. There are these things (not sure of the name, but my mother nicknamed them “body buddies”) that are basically little pillows made of cloth that are filled with rice. You just stick them in the microwave for 1.5 minutes-3 minutes and they stay warm for an hour or more. Very portable. You can even make your own. We did. Makes me think that I should turn this into a post at some point.

    I’ve wondered about the relationship between tummy aches and stress/anxiety as well, and feel strongly there is a connection there for C. He’s totally wheat and milk free, and I know that helps his stomach. It feels good to get this validation from you, who lives with this sensitive stomach, that we are doing the right things. We do all the things you suggested, except the body buddies. I was just thinking about that the other night though as he was complaining about a tummy ache and I could tell he was just tight with gas in his belly, poor kid.

    Yes, do a post, please!

  • 5. lastcrazyhorn  |  March 30, 2008 at 8:12 am

    Oh and icecream is always iffy. And for the carbonated drinks, there is an exception–ginger ale. Really good for helping tummy aches. In fact, they sell ginger supplements in most pharmacies. If you can get him to take them, they really help the stomach. Ginger snaps too. Very tummy calming.

    I’ve been working on the ginger snaps. Ginger supplements are a no-way at this point. He’s eaten a ginger snap, but since it’s his first cookie he’s ever had, and really has no desire for sweets, he doesn’t see it as a treat of any sort. Someday we’ll get there!


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