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!
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May in the news!
- March 19, 2011 // 56 Comments
- June 21, 2013 // 45 Comments
- November 25, 2011 // 37 Comments
- November 14, 2009 // 36 Comments
- July 18, 2012 // 28 Comments
- November 6, 2012 // 27 Comments
- April 22, 2014 // 0 Comments
- April 18, 2014 // 4 Comments
- April 16, 2014 // 3 Comments
- April 15, 2014 // 3 Comments
- April 7, 2014 // 5 Comments
- By Mama Lewis, April 22, 2014
- By Ellen S., April 21, 2014
- By Mama Lewis, April 19, 2014
- By Scott, April 19, 2014
- By Mama Lewis, April 17, 2014
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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
Mama Lewis v The So-Called Social Services
Two weeks ago, I had an uncomfortable conversation with a Social Services Occupational Therapist (SSOT). It disturbed me enough to request he not meet me at in my home, which he was meant to review for his records, but at May’s school where her community OT and physio could join us. I’m grateful to them for their support and professionalism, as well as, their familiarity with May, both her needs and preferences. Their confidence meant I could relax and focus on the chair. After all, lost in all the wranglings from our last conversation was whether the chair we were viewing that day was appropriate for her.
Also, I felt buoyed, after a visit from our normal social worker, who told me she would speak to the head of his department and to contact her with any further issues. “Don’t you let them bully you,” she said.
Before an examination of the chair, I asked the SSOT whether he’d read May’s notes. “Oh, yes,” he said, “of course. As I had done before we spoke on the phone last week.” May’s OT and physio were in the room when I asked, so you make what you will of that lie.
As we all discussed the chair we were about to see, the SSOT piped up. “I am considering the Squiggles chair* for May,” he said.
Let me repeat something I said earlier: I am grateful for the OT and physio. Imagine they hadn’t been there. I would have been arguing against this chair – one I’d seen the school try out with May every day, because that was the only chair available from storage. I’ve seen her cry in it. Struggle in it. Not eat in eat. Moan and complain in it.
But, it wasn’t just me that immediately dismissed his choice as “uncomfortable,” “inappropriate” and “not supportive.” Even so, he wasn’t put off. “I’m considering the chair long-term though. The Squiggles chair could last her four or five years.”
This is another example of a so-called expert making a medical decision based on budgetary requirements. It is completely irresponsible. You don’t purchase a complex, therapeutic chair because it lasts the longest. You purchase it because long-term it is the one most likely to help May sit independently, position her hips safely and allow her better postural support.
If we are really talking long-term gain – what is more important or cost effective than that?
But, here’s the crazy thing, the chair we chose – the Mygo – could possibly last twice as long as the one he wanted. So, he hadn’t even done his research there – in the one part of it he thought was essential.
By the end of the visit, he’d decided he’d seen enough. He is recommending the chair.
In this, another major trial in exchange for a small victory.
*This chair is not inappropriate for all children; it just doesn’t work for May. The Squiggles mat was an essential piece of equipment when May was a baby.
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