Medically Fragile Kids are Students First in School

Yesterday was Shannie’s IEP.  Mark went as we had some concerns and I knew he would make the case in a non-emotional, calm, cool and collected way. He is just so much better at getting the same result with less emotion involved in the process then I am.  I’m always so grateful to have a partner in these situations.

Shannie is in a classroom geared for kids who are classified as medically fragile.  She definitely qualifies, but only in the technical sense as far as I’m concerned.  She hasn’t been in the hospital for illness, always pneumonia, in over 10 years.  All other times were scheduled orthopedic surgeries.  Compared to many kids in this classification she’s on the milder end – no trach or ventilator – for which we are super grateful for sure.

Our main concern was that Shannie be treated as a student at school, not a patient, and sometimes it seemed as if that line was blurring.  Often her notebook came home with oxygen stats or temperatures on days when she was not the least bit sick.  In fact she’s maybe missed 3 days of school this year due to illness, general illness,  not life-threatening illness.

I tend to prepare myself for a possible fight in these situations, but more often than not, when we lay out the issues and clarify our expectations all is well.  In this case, Mark shared with her staff the anxiety Shannie feels surrounding medical situations and whether her anxiety was playing in to what they perceived as illness at school.  Everyone seemed surprised that she responded with anxiety – to the point that versed, an anti-anxiety med which also produces amnesia, – is given to her as soon as she enters the hospital for the injections she receives four times a year under anesthesia.  She has been known to raise her temp. several degrees when she is anxious.  This is why I was so concerned that the hyper-vigilance over her medical issues be dialed back.  She has enough real issues that have to be dealt with, let’s not pay attention to anything that’s not a real issue.

Shannie often freaks out people who are not familiar with her frequent coughing, rattling in her upper chest and occasional gagging.  We, who are familiar with her, know for Shannie, this is normal.  It is always upper, as in back of her throat, respiratory stuff.  It is very rarely actually in her lungs.  Her “normal” takes some getting used to and absolutely requires some relaxation on the part of her caregivers.  You can not get worked up over every funny sounding breathe or muscle cramp/jerk, seizure etc. or you’ll make yourself sick with worry.

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Yesterday was a great example of the purpose of an IEP, in my opinion.  It helps clear the air and get everyone on the same page.  Ultimately, with Shannon, we are the ones who will pay the price long term for whatever decisions are made regarding her health.  Our goal has always been for her to be comfortable and experience as much in the school setting as possible.  When she is a student first and a student with some medical issues second that goal is a lot more likely to be achieved.

4 thoughts on “Medically Fragile Kids are Students First in School

  1. Carrie Zeman March 15, 2013 / 9:54 pm

    This is so helpful to hear. Joy is moving up from special-ed preschool (on an IEP) to kindergarten this fall (on an IEP). I, too, have been surprised when teachers/paras have shared a concern. Like people generally perceive her as fragile, when she’s actually, physically, as sturdy as her sisters. But unless they say it aloud in our hearing or note something in her communication book, I wouldn’t know to correct their impression and assure them that if they use ordinary precautions, they will not hurt her by taking her in an out of her wheelchair –which, in her case, allows her to participate in class activities more like her peers. I love her teachers this year; they have her well-being at heart. But there is definitely more to our kids than meets the eye!

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    • SerialAdopter March 19, 2013 / 12:24 am

      I’ve definitely found communication easier with some staff than others. It’s so great when everyone is on the same page. I hope Joy’s move to Kindergarten is a very smooth transition for you all.

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  2. Tess Kruser March 16, 2013 / 3:18 am

    So nicely said Paula!!! Shannon loves to have fun. I’m so glad she’s in a place where you and Mark feel like can share your thoughts and concerns!!

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    • SerialAdopter March 19, 2013 / 12:26 am

      Thanks Tess. It’s great when everyone listens to each other and no one – on either side – gets their feathers ruffled. Presumably we all have the student’s best interest at heart. I always knew you were listening whenever we had concerns. You’re a wonderful advocate for your students.

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