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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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 16, 2014 // 3 Comments
- April 15, 2014 // 3 Comments
- April 7, 2014 // 5 Comments
- March 31, 2014 // 3 Comments
- March 30, 2014 // 2 Comments
- By Mama Lewis, April 17, 2014
- By Mama Lewis, April 17, 2014
- By Irishmama7, April 17, 2014
- By Madgew, April 17, 2014
- By Aunt Carrie, April 16, 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
One story that has received almost no coverage during the Paralympics
The Paralympics are here and, at least in Britain and many other countries around the world (America not being one of them) – people see disability in a new light. I went to the Paralympics with my family. I enjoyed being a part of it – but it was not an easy day. May was teething and desperate for a bottle and the Olympic Park is the size of Chicago.
“Just keep walking,” I said to my husband. “She’s will stop crying when she has a bottle in her mouth and the chance to sleep.” Which turned out to be true, but “just keep walking” resulted in a 40-minute scream fest.
When I spoke of our visit to people, I made no mention of the scream fest. Instead, I spoke of how great it was to be a part of sporting history.
In other words, much like disability coverage during the Paralympics, I glossed over the hard stuff.
Meanwhile, the same week we watched world-class, disabled athletes, we also received a letter from Lambeth saying they would no longer provide SEN transport to children like May. The Paralympics is the show; that letter is the reality.
This week, I found one story more troubling than anything I’ve read about all year. Where is the coverage? Languishing in a small column in the back pages of American newspapers.
Florida has been removing children with complex medical needs from their homes against their parents wishes to save money. The children are placed in nursing homes for the elderly, often not located hours away from their families and receiving little to any stimulation. Never going outside. Not living with other children. Receiving less than 3 hours of education a week.
If May had been born in Florida – they would have attempted to force us to place her in an institution from birth.
From The San Francisco Chronicle (and it goes to show how little coverage this is getting that no Florida media outlet has written as lengthy a piece):
“the state turned down nearly $40 million in federal dollars for a program that transitions people from nursing homes back into the community. The state has also been paying community-based providers less, reducing payments by 15 percent last year because of legislative budget cuts, the letter stated.
Yet the state implemented policies that expanded nursing home care, by offering facilities a $500 enhanced daily rate for caring for children, which is more than double than what the state pays for adults, according to the letter.”
So, it didn’t even save the State money and for nursing homes it made money.
I read the full Attorney General’s report and their demand for a response from Florida and I sobbed for two hours last night. After, I published a piece about it on BabyCenter, What’s worse: being born disabled, or in Florida?
Readers asked if they could sign a petition against Florida’s barbarism. I’m not sure a petition will do any good against the wave of conservative ideals sweeping America. Will Florida protect its children, or its right to profit off them?
I can’t do much from the UK, but I can stand in solidarity with these parents and ask you to do the same by signing and share this petition, and see where it goes from there.