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
- March 10, 2014 // 3 Comments
- March 6, 2014 // 0 Comments
- March 3, 2014 // 2 Comments
- February 28, 2014 // 4 Comments
- February 25, 2014 // 8 Comments
- By Madgew, March 10, 2014
- By Mama Lewis, March 10, 2014
- By C Smith, March 10, 2014
- By Susan Bell, March 10, 2014
- By Mama Lewis, March 6, 2014
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
The bombshell’s explosive result
Let’s start with my email to Head of SEN Services who said Lambeth would cease to deliver SEN transport for children like May, for the sake of “developing their independence”:
1. How exactly do you hope to reach your ambition of independent travel for my three-year old daughter, who has epilepsy and can not sit? Doctors believe she will never sit independently. Please share with us your magic solution whereby she can sit on a bus without falling over. We are keen to learn.
2. Why did it take you eight months from decision to posting out this letter? Could it be you waited until school was no longer in session? Your decision may be the difference between my husband or I working, which seems no small matter. We are both teachers and contractually we have to give our schools an entire term’s notice. Perhaps you could explain the challenges of your policy to my students who may not have a teacher after the October half-term holiday.
3. Other parents have the means to drop their children off at school early to breakfast sessions, or pick them up late. Or, have access to childminders who do local primary drop-offs. None of the parents at Livity School will have access to any of these things. How exactly are we meant to arrive to work and drop our children off at school, which starts at 9 AM?
This is a shameful act on the part of the council. And, you should feel personally ashamed for framing it under the veneer of charity.
He responded almost immediately. I can’t say he sounded pleased with me. But the end result is this:
1. He said removing transportion for children who qualify for Motability cars (or the equivalent funding – meaning, every family that attends May’s school) will not happened until the new year.
2. After grilling me for several minutes about how we can possibly get May to school now, he begrudgingly said that it was no means a blanket policy, and that it wouldn’t apply to families with two working parents.
Of course, his letter didn’t say either of those things, though he claimed it did. I had to read it to him over the phone to prove it didn’t. He didn’t seem too troubled that parents would not be aware of his “miscommunication” as he called it. He said that May’s headmistress could send a clarification, if she felt it was needed.
I said, “It is your responsibility to send a clarification!” I said a lot of things. He was exasperated that I was so insistent he send a correct to all parents, since he’d already told me May’s transportation was safe. “But, what of the other families?” I repeated.
In response, he regurgitated the same rubbish that politicians say to turn the public against disabled people: he said that many families claimed “double’ the benefit they deserved by using the transport and the Motability car, and all they wanted was for parents to contribute their fair share to their child’s transportation.
I said, “You have no concept how difficult it is to travel with a disabled child. You have no idea what our lives are like.”
This is The Big Society the British government has created. A society where people are encouraged to believe that families like mine use disability for our advantage. We are greedy and we only need to pay our fair share.
I ask you, what is fair about our situation? Why are people so resentful, and not grateful, that they don’t need the help we need?
I ask you: Would you trade your child’s brain for a car?