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Shopping with a disabled trolley - first look pics!

March 12, 2014 at 09:45

Mama Lewis

15

What happens when you combine one cutie in a wheelchair + one wonky shopping trolley + one wonky mama pushing it all? 

Listen to the repeat at You & Yours, BBC Radio 4. Then use the hashtag #YouAndYours to let us know what you think.

And here’s what happened next…

May just wants to shop.

And Sainsbury’s heard her cries. We tested out the Firefly ‘GoTo Shop’ trolley and it is awesome.

The trolley provides a five-point harness to secure children who are challenged by tone, balance and sitting. It also has a fifth wheel underneath to stop those dangerous situations where the trolley veers in one direction (down a ramp and directly into the car park) instead of where you want it to go (safely on the pavement). This seems especially important given that the children using these trolleys will weigh more than a baby or toddler, and that weight, combined with the shopping, will pull against us poor parents.

The seat is padded and there is plenty of room to hold an older child. The Firefly ‘GoTo Shop’ trolley is aimed at the 3 – 10 year-old range.

Some initial thoughts… The size of the basket is about half the size of a normal trolley. On a bigger shop, will all our food fit in? Will the weight of a huge shop (plus May) impact on pushing the trolley? More testing is required before we’ll know.

The most pressing issue is that the harness is too large for a child May’s size. It should fit snuggly around her torso. But, the manufacturer spotted this immediately and are creating a smaller one. They are also adding some head support. I’ll have photos of the “Trolley Mock 2″ in a few weeks. Testing will continue over the next 6 – 8 weeks.

In the meantime, do you have any questions for Sainsbury’s or for the designers the Firefly ‘GoTo Shop’ trolley?

If the trial works, we may see these all over the country so your input is important!

Disclaimer: Sainsbury’s gave me a voucher to use while shopping during the trial. All opinions are my own.

We work! (We do. If you'd let us...)

March 10, 2014 at 14:18

Mama Lewis

5

May and I, a month after I returned to work

May and I, a month after I returned to work

Only 16% of mothers with disabled children work.

Compare that to 61% of mothers who work whose children are not disabled.

I’m one of the mothers who had to cut back on her working hours after I had a disabled child. I took a 20% pay cut and work one less day a week. It wasn’t by choice, it was by necessity.

My workplace, a school, was gracious enough to trial me returning to work at my pre-maternity hours. But, it was only after a long meeting where I agreed that we would revisit the subject the following term. For one term, I could miss any days I needed to, to attend May’s appointments.

And, there were plenty. Occupational therapy. Equipment meetings. Epilepsy clinics. Specialist ophthalmology. Physiotherapy. X-rays. Brain scans…

Just today I received a call about availability for an appointment in two-days time. “We work,” I said. “So, I’ll have to call you back.” I get calls like this almost every day, usually with only 24-hours notice. But, given the choice between 24-hours and a six-month wait, I often chose to give my work one-day’s notice.

Even the most understanding of bosses, and mine was, couldn’t help but see the difficulty employing me posed. So, at the end of the term, we reconsidered and I agreed to cut down to three-days a week.

Even then, I remain one of only 16% of mothers in the UK who returned to work after having a disabled child. Just 3% of mothers with disabled children work full-time in the UK, and 13% work part-time.*

There are many barriers to returning to work. An understanding boss and the ability to attend a multitude of medical appointments being two already mentioned.

But, I believe one of the main issues is child care. I documented our struggle to find a provider who would take May. A child like May costs more money because she requires more supervision, time and equipment.

But, the government was not forthcoming with help. I was told that returning to work was a lifestyle choice. There is no statutory requirement to take children like May, even in state run nurseries. And, only weeks after she was admitted, our council cut the funding for her one-on-one care. Without it, the nursery would not have been able to watch over her safely.

A long fight ensued that we won. But, the children that followed May were not given the same provision.

Without exaggeration: if the funding hadn’t been reinstated, May wouldn’t have been able to attend and I would have had to quit my job.

I am more than May’s mother. Is it wrong that I want to use my two post-graduate degrees and over a decade of teaching experience? I have published a novel. I have written for major publications in the US and UK. Why is it less important that I work full-time than it is that my husband does?

What does being May’s mother mean? Does it mean my life is not worth as much as hers?

I want to work. I want to be independent. I want to pay my bills. I want to be a part of the world. Help me.

#WeWork. (We do. If you’d let us…)

*All the statistics in this post came from a study by the Papworth Trust.

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

March 6, 2014 at 10:11

Mama Lewis

0

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

2

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

5

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.