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Again, what's worse: being born disabled or in Florida?

March 6, 2014 at 10:11

Mama Lewis

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This week, the Florida government insisted that children with severe disabilities, even those who are dying, be subjected to weeks of standardized testing.

I’ve reported on the State of Florida’s shocking treatment of children before. The disregard they show towards the most vulnerable population of their state is truly disturbing and even criminal, going as far as judgement in the federal courts.

Remember this?

may_florida

This is the same state that locked away children from birth. Even the pleas of the mother of a three-year old child with Down Syndrome, begging “I want my baby home” fell on deaf ears. This child, and many others, were placed from birth in a homes for the elderly, hours away from their families.

At the time, Florida politicians defended their actions. They have done so again over a story that hit national headlines earlier this month. As the Washington Post reported, “Andrea Rediske’s 11-year-old son Ethan, is dying. Last year, Ethan, who was born with brain damage, has cerebral palsy and is blind, was forced to take a version of the Florida Comprehensive Assessment Test over the space of two weeks last year because the state of Florida required that every student take one. His mom has to prove that Ethan, now in a morphine coma, is in no condition to take another test this year.”

Ethan wasn’t the only child this has happened to.

This week, Florida released a statement saying they are looking out for all children, especially children with special needs who they claim would be ignored and their teachers not held to account without these tests. They are using this an excuse to press forward with educational policies at the expense of very ill and disabled children.

They can try, but they can’t spin this story enough to remove the whiff of contempt they feel towards these children.

Florida politicians were elected to serve and protect. They allow children, whose lives are already more difficult than any of us could imagine, to suffer for the sake of what? It is completely baffling.

And let’s be frank, it is possible to not assess dying children’s reading and writing. It is possible to not penalize teachers who don’t want these children to suffer. It is. And only laziness and political ideology are standing in their way.

Want more? Please read: What happened to the disabled children Florida abandoned?

This story originally appeared on the BabyCenter Blog. Photo credit: Stacie Lewis

For once, the kind of madness you'd vote for...

March 3, 2014 at 16:44

Mama Lewis

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Mama Lewis and the Amazing Adventures of the Half-Brained Baby has been nominated for a MAD Blog Award. Want to help us to win? Consider this:

In the last year, this blog:

  1. fought the supermarkets and won shopping trolleys for disabled children across Britain.
  2. helped families with special needs kids to visit London’s attractions in the series Kids All Access… London.
  3. shamed the councillor from Cornwall who thinks children like May should be put down.
  4. started a petition demanding Florida not lock away children in old folks homes just because they are disabled.
  5. battled through Leukaemia. (And how many people do you know who have said, “Leukaemia your ass is grass”?)
  6. Also May is super-adorable and that is a power no one can resist. FACT.

 

The more nominations, the greater chance the blog has. We’ve accomplished a lot this year, and much of it with your help. So, I’ll thank you again in advance. Clearly, you are awesome.

I’m nominated for Best Blog Writer and Best MAD Blog for Family Fun for my Kids All Access series. There some amazing blogs out there, so don’t put me down for everything. I don’t create fantastic dishes or redecorate nurseries. So, if I win a food award for best “shove it in a microwave” or craft award for best “pile of laundry” I’ll know who to blame.

Here’s how to nominate.

1. Click on the badge:

MAD Blog Awards

2. Choose the categories you want me to win and enter my blog: www.mamalewis.com

3. Pat yourself on the back. You just made this mama feel gooooood.

When there is no answer

February 28, 2014 at 13:22

Mama Lewis

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Photo by Kevin Dunnett

Photo by Kevin Dunnett

A couple of weeks ago, a professor running a vision clinic drew my attention to my daughter’s eyes. Her beautiful, big eyes. “She has very large corneas,” he said. ”Do you know what happened to May? Has she been seen by the geneticists?”

She has. In fact, she’s had two MRIs, many brain scans of various types, three lumbar punctures to her spine, blood tests (hundreds?), genetic photographic testing (where they examine her facial features) along with tests for Strep-B, infection and vitamin deficiencies. They’ve revealed nothing.

“How was your labour?” the professor asked.

It was protracted,” I said bluntly. “68 hours.”

“That’s probably it then. But, I could refer you on if you wish.”

“Let’s say I did take May in for further genetic testing and they found something. Would it help her now? Would that information benefit her in any way?”

“No. It probably would just give us more information.”

“Then, I’d rather we didn’t. We’d be testing her for our own curiosity. It wouldn’t be right to put May through that.”

I had another conversation with another doctor, a neurologist, three years ago after an overnight stay in a hospital to trial her with a new seizure medication. We’d been testing her for a year and a half at that point and had found no answers.

I asked him: “How long do we go on testing May? How many tests are there?”

“We could continue to test her forever,” he said. “New tests come out all the time. As doctors, we are always searching for the solution.”

“But, will it help May? If we find out?”

“Probably not.”

“Then, I’m done. I’m done testing her. I’m done putting her through this.”

Sometimes there is no answer. Sometimes life just deals you a bad hand. These doctors meant well, they really did – and it makes no rational sense. In life, we expect answers. But, the truth is they don’t always exist. There is no solution. There is only a little girl with half a brain.

People are always asking me why. Why is she crying? Why is she having seizures? Why isn’t she sleeping? The definition of unbearable should be: when you don’t know why your daughter is in pain.

More information isn’t the answer when no answer exists. It is an awful truth. But, I’ve come to think of it as the only sane approach. Acceptance isn’t about fixing the problem. It is about accepting the problem.

I could shout and scream about it. I still want to demand answers. But, in the end I hope someone will lead me back to my  little girl. That she will be enough. They will take my hand and place it on her head. My little girl with half a brain, a half brained beauty. She is the answer.

What happened when May went back to Waitrose

February 25, 2014 at 09:45

Mama Lewis

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I love Waitrose. I can’t help it. They have an incredible selection of olives.

Confucius once said: you may intend to pick up “just a pint of milk” from Waitrose, but you will never leave without having spent £40 minimum.

So what happens when a fiscally blind and loyal shopper such as myself is faced with an major challenge: the inability to get around Waitrose because there is no disabled trolley for my daughter?

Two weeks ago, I wrote Waitrose requesting a trolley and received a very bizarre response and refusal. So I wrote every other supermarket in the area too, and posted it on my blog, and some friends spread the word, and their friends spread the word, and then the supermarkets – including Waitrose – got back in touch and it just spiralled.

The Sun picked it up. Tesco’s, Sainsbury’s, Morrisons and even Waitrose agreed to buy a trolley for their branches that are local to me – which is awesome and means that not only May, but May’s schoolmates who use these stores too, can shop just like her.

But, one disabled trolley in my local Waitrose isn’t really enough. “I hate to put you on the spot,” I asked when they told me they were ordering one, “but what about all your other stores? There are 800,000 disabled children in the country, what about them?”

Waitrose was pretty reluctant to consider them. They said branch managers could decide on a case-by-case basis. But, those other families don’t necessarily have a blog, or a friends who would share their plight on social media, or even know that disabled trolleys exist. A family like mine hears “no” a lot, would they even ask their branch manager?

So, when You & Yours the consumer radio show on BBC’s Radio 4 contacted me, I jumped at the chance. “We want to go shopping with you,” they said. “We want people to know how hard it is.”

May preparing her superiour power of cuteness for a return to Waitrose

May preparing her superior power of cuteness for a return to Waitrose

And that’s how one curly-topped, four-year old with a superior power of cuteness, returned to Waitrose yesterday to test out a new disabled trolley they had ordered for her. It didn’t exactly go to plan.

On BBC Radio 4 at 12.00 on Wednesday you can listen in as this mama pushes May in a wheelchair AND pushes a shopping trolley AND nearly collides with woman with a baby, all to seek out gourmet olives.

Follow @MamaLewisBlog on Twitter? Tell me what you think during the show: #YouAndYours

Kids all access... the Barbican Arts Centre

February 17, 2014 at 10:10

Mama Lewis

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Oh, Barbican Arts Centre: you audacious modernist complex, you concrete slabs and jutting angles, you that supplies not one, but six different flavours of ice cream (of which I bought four of today, yum).

Oh, Barbican Arts Centre: I think I’m a little bit in love with you.

Check out the padded seats at the Barbican. (That's Grandma Bar holding May- May before the convent)

Check out the padded seats at the Barbican. (That’s the gorgeous Grandma Bar with May before the concert)

Here’s a brief list of the reasons why:

  1. Free parking for Blue Badge holders
  2. Free carer ticket to events*
  3. Lifts, wide corridors, automatic doors – everywhere
  4. Easy access to wheelchair seats – and they are good seats
  5. Home to the London Symphony Orchestra – lovelovelove

 

May has been to many exhibits/concerts at the Barbican. It is not a solemn and pretentious arts venue. It is a noisy place where her screams of glee or complaints are masked behind the screams of glee or complaints of hundreds of other children.

It is the perfect place for children, disabled or not. Did you know, for example, that the audacious modernism I mentioned earlier is actually a playground for children? I didn’t either until I saw hundreds of the little buggers sliding down the Barbican’s banisters and chasing each other up and down the stairs, and outside weaving in and out of the pillars in the gardens.

It is a space that is meant for fun, and fun for everyone.

Incidentally, though we have been to other things there, I mentioned the LSO particularly because May has seen them perform four times now. Their family concerts, during the school holidays, are ridiculously inexpensive (£10 adult/£5 child – and don’t forget that free carer ticket). And they include free music, craft and story workshops beforehand. And a free creche for under-7s (that I’ve used four times for my son and is marvellous). Ice cream is extra. But worth it.

More information:

Disabled access guide to the Barbican 
The Barbican has a Changing Places facility

* Free carer tickets available once you sign up for an access pass online

Kids all access… London is an on-going series on Mama Lewis to encourage special needs families to explore London. If you want May to review your attraction or know of one she should definitely see, please comment below or email: contact@stacielewis.com.