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The Story of the Delivery
March 19, 2011 // 56 Comments -
Guardian Article
November 14, 2009 // 36 Comments -
What's God's plan for May?
November 25, 2011 // 35 Comments -
Milestone for May! Her first steps! (VIDEO)
July 18, 2012 // 27 Comments -
The Amazing Half-Brained Baby blog has been taken over. ...
January 30, 2011 // 24 Comments -
May made me cry today. My amazing half-brained baby.
September 19, 2011 // 24 Comments
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WIN! Family tickets to In the Night Garden LIVE (worth ...
May 13, 2013 // 0 Comments -
Councillor expounds further on why kids like May "shoul ...
May 12, 2013 // 7 Comments -
What do you think of our theory about May's pain?
May 11, 2013 // 5 Comments -
Why you haven't heard from me...
May 10, 2013 // 10 Comments -
"Disabled children should be put down" says re-elected ...
May 6, 2013 // 5 Comments
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Wow what a horrible evil man. Wish I could sign bu ...
By Jenny, May 13, 2013 -
I tend to be unsentimental about disabilities. I a ...
By Karen, May 13, 2013 -
I'm in Canada so unfortunately I can't sign but ha ...
By Michelle, May 13, 2013 -
We've given her some baby pain relief - like you s ...
By Mama Lewis, May 12, 2013 -
I completely agree with you on how significant thi ...
By Mama Lewis, May 12, 2013
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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.





I am so glad you got the chair you wanted. I think this is what happened. I got confused and distracted by his stupid comments. Why don't they use professional therapists to evaluate the files rather than social workers? Not really right.
Wow. I guess the lesson is never meet these social workers alone again. Mama Lewis wins this round!
If it makes you feel any better, the situation can be just as bad here. Aren't Squiggles and Mygo by the same maker - Leakey based in Belfast? Would it be an option to have the vendor present, too? That is done here, but a therapist is required to sign-off on the wheelchair prescription (called that here).
No small victory when you know the implications. And you have encouraged others by your actions and post.
They are made by the same manufacturer. We had a rep come from the company to the meeting. May seemed to like the chair which had a far better head support - it was a gel padding - and an elasticated harness that sat across her hips. I'm hoping it works!
Back again - only you will be able to say whether the chair 'works'. Only your opinion counts but the parent's opinion is not always honored. Ahem.
I've tagged you for a meme (don't hate me!) Go here to learn more about me and decide whether you want to share also:
http://www.therextras.com/therextras/getting-to-know-me-more.html