Friday, April 16, 2010

Autistic Journey...

If you FaceBook, some of this may sound familiar.  But I go into more detail and move on with other thoughts.  Please bear with me.  Sarah came home yesterday, smiles and cheers.  She had a good day at school, earned more points and continues to climb her goal chart.  We hug, she hoots, we enjoy a snack and she's to the backyard to play.  Erin and Taylor come home, she shares the good news and she convinces brother and sister to play in the backyard with her.  Finally, I grab her backpack and pull out her daily notes from her teacher.  Confirmed the "good day" and catch a note, "Sarah said it hurts when she pees".  Uh oh.

Now, you have to understand something about Sarah.  She may be phobic about bleeding, hang nails (can't stand them) and needs a band aid for every little scratch, nick or bug bite.  But she's not one to let on she's not feeling well, until she throws up on your feet.  She'll display zero symptons but then poof she's SICK  Erin has been known to do this on a Friday at 6:30 pm, after our Dr. has gone home for the evening...I quickly glance at the clock.  It's 5:30pm crap.  I now keep my eyes and ears open, watching Sarah for any indication of unwellness, pain or stress.  Nothing, until she comes in to use the restroom.  Yep, that sounds like a UTI.  And of course it's also so Sarah in a manner of speaking.  She dreads using the restroom, she wants to avoid the pain, she already quickly associated drinking fluids = bathroom later....it wasn't a fun evening or night for my little one.

Friday morning, I let Sarah sleep and stay home.  Call Dr. first thing and we head out for her 10:45 appt.  Nuts, our pediatrician is on maturnity leave.  Our pediatrician rocks when it comes to strep throat, bronchitis, chronic ear infections.  She doesn't believe in letting a child suffer while confirming symptons with lots of tests.  If  95% of the kids at school suffer from strep and you think your child has it, she's presribing the RX and looking for the symptons.  If your childs throat looks like a nuclear bomb went off in there, she's not torturing your child with a swab.  Having ranted about this, we see our substitute Dr....explain Sarah's symptons, share that we suspect Sarah is suffering from a possible uti, and that I'm familiar w/ the symptons as I suffered from many as a child myself.  Okay, here have her pee in this cup.  WHHAAA?  Did I mention Sarah has a severe adversion to public and "unknown" restrooms and it HURTS to pee?  The first attempt results with Sarah nearly bolting out of the bathroom half dressed, knocking the sample cup INTO the toilet and me calming her for another 5-10 minutes.  Dr. then tells Sarah she really needs to pee in the cup otherwise she may have to go to the hospital and have a tube inserted.....Sarah shuts down.  Tunes him out.  He looks at me, quizzically.  Hmm Dr. did you read her chart?  Severe Anxiety Disorder and Autistic Spectrum.. he has the nurse bring Sarah a cup of water.  ARrghghgh.  An hour later after finally convincing Sarah to pee in the cup, he comes into the room and tells us that the sample suggests that Sarah has an UTI.  REALLY?
Sarah grabs herself a pencil AND a sticker, I get the RX and note for school and we're outta there.  You want chicken nuggets?  You got em!  M&M's no problem.

Now after all this ranting and rambling...Sarah insists she goes to school (no problem), I'm here checking email, reading my FaceBook and some favorite blogs and comments.  One blog in particular called ThePaperLife.com has recently sponsored a contest promoting Autisim Awareness this month.  There was a contest, all you had to do was leave a comment.  Today I spent time reading these comments because they were more than the typical "Great idea, hope to win your prize".  A good majority of comments were made by women with children who are somewhere on the spectrum and they shared their appreciation.  One woman referred to her daily life with her child as an "Autistic Journey".  Autistic Journey, I like that.  It made me realize that I might create a journal, a blog or something to record these moments, milestones and experiences for Sarah, for family and for people reaching out.  So I'm brainstorming right now.  Thoughts and comments are appreciated.  And I'm gonna have to steal this woman's description..Autistic Journey as we've been on this journey for sometime and I see no end in site.  But I do see adventure, heartache, thrills, joy...and there'll be so much to share.


1 comment:

Just us three said...

i know you prolly have enough support on your team but if you ever need me to do anything for you, please let me know!

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