Stacie Lewis’ experience raising hell…
... erm, raising a little girl with severe brain damage. The blog began in 2009 when May was 4 1/2 months old.
Currently, May enjoys bouncing and the dulcet tones of dub step.
Click on May's photo here to link to her best bits, including videos!
Email her or her mama at: firstname.lastname@example.org
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- March 19, 2011 // 56 Comments
- June 21, 2013 // 45 Comments
- November 14, 2009 // 36 Comments
- November 25, 2011 // 35 Comments
- July 18, 2012 // 28 Comments
- November 6, 2012 // 27 Comments
- November 29, 2013 // 0 Comments
- November 25, 2013 // 3 Comments
- November 7, 2013 // 4 Comments
- October 23, 2013 // 12 Comments
- October 9, 2013 // 11 Comments
- By Katie B., November 26, 2013
- By Ellen Lewis, November 26, 2013
- By Madgew, November 26, 2013
- By tee, November 11, 2013
- By Alexa, November 8, 2013
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Posts about May on BabyCenter!
A bit of praise but is it art? CP Info Dealing with Doctors Fun with May Giveaway Hip surgery Hot Air Ieuan Kids all access... London Leukemia Life with a CP Baby Lycra (Supergirl) Suit May vs The Hospital May's History Medical Records Music Not special needs. More like NEED IT. Nursery Physio Potty Training Preschool Seizures Sleep So-called experts Success! This week I'm... Transportation Visual Impairment
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This week I’m… waiting and waiting and wait…
After a meeting at Mays’s school about special needs transportation, where I sat with a squirmy Baby Ieuan on my lap and discussed every remote possibility whereby May might have a seizure on route and need an ambulance, I was released back into May’s school, and with great relief found her working with her new visual impairment therapist.
Great relief because May’s new VI therapist is awesome. But before I reveal why, let’s remind ourselves of VI therapy so far. Do you remember these hits from yesteryear?
1. A waste of good trees: 100-doubled sided pages of advice for parents of VI children. That was only Volume I. That’s what parents like me need, a little light reading for all our spare time and no guidance on what section to start with. (Incidentally, I now know one of the writers of this tome and I can’t imagine she had any intention of it being passed on to parents in full without any dissemination.)
2. Dealing with doctors: Who can forget the first time a doctor inspired me with the words, “There’s nothing you can do for her.”
3. Conversation with May’s first and quickly dismissed VI therapist:
Me: “I’ll have the hospital send you the results of the VEP exam.”
Her: “What’s that? How will I read the results?”
As a parent of a special needs kid, you never EVER want to know more than the therapist. (If you don’t know what a VEP is, don’t worry. It’s not your profession! VEP stands for Visual Evoked Potential. It’s brain scan that checks whether signals from the eye are being received by the brain.)
So – floods of information I can’t use, and why would I anyway since there is no hope and my only guiding force is an absolute moron. These were only some the highlights of over a year of begging – literally – professionals of all kinds to point me in the direction of some real help.
Fast forward and, especially over the last six months, May has made some – be they slight – improvements to her vision. Today, I think I may have met one of the reasons why: her new VI therapist at her school. May loves her. And, as we know, May’s barometer of bullshit is sharp.
I had a few minutes before I needed to take May to an appointment, so she checked if the school’s sensory room was free and in we went. She takes May there a couple times a week (yes – not every few weeks or so!) to use their various colored lights in a darkened, quiet space.
She knows May’s visual impairment is severe. She has devised a system where she times how long it takes May to look towards a light. She watches her carefully for the slightest recognition – and she notes the same kind of responses that I see, ones that I thought would be unrecognizable outside of my own desperate imagination. She sees them too!
Above all I admire her patience. She said that whenever she thinks May won’t respond, she waits just that little bit longer and then May does. And, she’s noticed that May’s response time shortens as the session progresses. She is also working with May’s OT to see how vestibular movement (AKA bouncing) followed by the visual cue improves May’s response time.
This is the kind of woman I want on Team May.