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May has the answer to all your ills

March 27, 2014 at 23:14

Mama Lewis

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A reminder that when the world is throwing a storm of misery your way, one little girl knows what to say.

From the archives, here is May, only a few months old. She severely physically and cognitively challenged and yet she knows what you should be shouting. It is the perfect and only response to everyone who is giving you grief. For when you want to play with your child but feel pressure to do therapy. When only a cuddle will do, but a mountain of work awaits.

Don’t mess with her. May says, “No!”

Warning: cute baby alert

May's amazing picture book GIVEAWAY!

March 19, 2014 at 09:00

Mama Lewis

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Thanks for entering the giveaway – the original winner did not respond so I’ll be randomly drawing from the list again. Your original entry will count, but if you share this post by midnight April 11, I’ll put you in for an extra one. Good luck!

To celebrate the creation of the Mama Lewis Facebook page, Mama (that’s me) and May (that’s her) are giving away three gorgeous picture books to one reader.

Up for grabs are:
Just Because by Rebecca Elliot, a sibling, special needs adventure story.
A First Book of Nature by Nicola Davies, a beautifully illustrated introduction to the delights of nature.
Baby’s Got the Blues by Carol Diggory Shields, an adorable rhyming tale about the woes of being a baby.

Here are some photos to tempt you:


All the books are hardcover and retail for £14.95 each. You can enter in several ways, the first being simply to “like” the Mama Lewis Facebook page. (Anyone who has already liked it is still in the running – just follow the same instructions and it will recognise your “like” exists.) Any shares will earn you an additional entry.

It’s that simple – share and win! Click below to get started:

RULES: All entries must be from the UK. The books will not be shipped overseas. The competition is not open to anyone in my family – sorry family. The winner will be chosen at random and be announced at the top of this post by midnight of the last night of the competition. I have not been paid to promote these books and all opinions are my own.

5 simple ways to comfort a sensitive child

March 15, 2014 at 10:09

Mama Lewis

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I HATE THIS! …says May in a million ways every day.

May has a lot of sensory issues that could limit us if we let them. But, we want to be a part of the world, not locked away in our house every day. When we leave our house, I can’t control the environment – but I have picked up a few tricks that help comfort her.

Here is one way to tackle each of the 5 senses:

1. TOUCH – Touch anything wet or cold to your child’s hand before touching it to their face. The face is a very sensitive place and it will be less shocking for them if they feel it first somewhere else.

2. SIGHT – Children with cognitive visual problems often see things better in their periphery. Place the item to their side and then be patient and leave it there until they make sense of it.

3. SOUND – In noisy places, try using headphones to play their favourite songs and block out unfamiliar or sudden noises.

4. SMELL – Wear perfume early on when they are just babies. The sense of smell is often overlooked and perfumes are a strong scent they will associate just with you.

5. TASTE – Nutritionists will hate me for saying this, but a favourite baby food pouch tucked into your bag means that no matter where you are, you have food at a pureed consistency that you know your child likes the flavour of.

*BONUS TRICK* PHYSICAL – Want to help your child touch an object, but they clench their hands? Gently hold their wrist and press your fingers on the top of their hand. Their fingers will open like a blossom.

Know a trick that could help a child tackle their sensory sensitivity? Please add it to the comments! Disclaimer: As always, please note that I’m not a doctor. These are just tricks I picked up along the way that might help you too.

Shopping with a disabled trolley - first look pics!

March 12, 2014 at 09:45

Mama Lewis

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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

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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.