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
WANT MAIL FROM MAMA?
- 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
Don’t understand a term?Click here: TO SEE MY GLOSSARY!
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
- November 2013
- October 2013
- September 2013
- August 2013
- July 2013
- June 2013
- May 2013
- April 2013
- March 2013
- February 2013
- January 2013
- December 2012
- November 2012
- October 2012
- September 2012
- August 2012
- July 2012
- June 2012
- May 2012
- April 2012
- March 2012
- February 2012
- January 2012
- December 2011
- November 2011
- October 2011
- September 2011
- August 2011
- July 2011
- June 2011
- May 2011
- April 2011
- March 2011
- February 2011
- January 2011
- December 2010
- November 2010
- October 2010
- September 2010
- August 2010
- July 2010
- June 2010
- May 2010
- April 2010
- March 2010
- February 2010
- January 2010
- December 2009
- November 2009
- October 2009
- September 2009
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.