This is Carers’ Week. Let’s talk about my son Benedict.

Ben is a young carer. Despite being only seven-and-a-half, and my efforts to give him the childhood he deserves as much as anyone else – it needs acknowledging that he will always be more than a brother to Issy.

It’s not something I can avoid. He may be a CODA (Child of Deaf Adults) by default – having two Deaf parents – but his young carer status prevails more. He’s always going to see Issy with someone hoisting her into the bath, bed or her buggy, encouraging her to self-feed, attending to her lavatory needs, exercising her legs, getting her dressed, giving her a bath, intervening in her play. He struggles to communicate with me because I struggle to sign regularly to him, my hands being full most of the time.

Ben spends more time away from Issy than usual because she’s always going to be with a qualified specialist carer if not me or their dad, and from necessity unrelated to her gender, she doesn’t attend the same school as him.

Consequently, she doesn’t mix in the same friendship circles as him; rarely goes to the same playdates. That her friends’ parents know his friends’ parents is more coincidence than anything else because it depends on his friends having a sibling at her school, which is next door.

If I want to go out on a weekend when they don’t have contact with their father, I have to book two carers; never one, as Issy is too big and heavy for transfers whilst also babysitting Ben.

Which basically means that I do the jobs of three people: parenting Ben, parenting Issy, and being an unpaid carer to Issy. I’ll never be just a parent to both. Our whole household routine centres round her. Whatever we do, wherever we go, I will always seek out access for her – such is the design of the built environment almost everywhere for ‘normal people’ (ahem).

Aylesbury is Issy’s best chance of getting a good education, but it isn’t exactly a hotbed of thriving Deaf communities. Ben’s (and Issy’s) best chances of mixing with fellow CODAs are probably St Albans, or certain parts of London – but those are hampered by transport links inaccessible to Issy.

Anyway the self-absorbed crowds in London send my anxiety levels soaring. I’ve lost count of the number of times I’ve had to yell EXCUSE ME above the Apple earphones so we can jump on the tube together without the sliding doors clamping the buggy – or leaving Ben behind.

Ben sees all of that every day, absorbs it all. He’s never known what it’s like to be a sibling of a non-disabled child. I often worry if he has enough space to work out what he needs to grow as a separate, free-thinking individual.

I would understand perfectly if he resented his big sister – after all, he is too a child in need of constant nurturing love and attention.

But those occasions are surprisingly rare.

Instead, he’s shown almost nothing but compassion, empathy, humour and love towards her. He often climbs into her bed in the morning to cuddle her, talk to her, and play – and Issy, for her part, loves it.

For this reason I’m grateful to Young Carers Bucks that he’s had plenty of chances to mix with young carers, both of his age and older. He needs to be relating to young people and children like him, who understand his frustrations and can give him invaluable peer support. There may come a time when he’ll want to meet fellow CODAs – but right now, his needs as a young carer come first.

Ben is too young for me to be expressing my full appreciation of him like I’ve done just now, although of course I have gratefully thanked him for his help many times. But let no-one be in any doubt: as his mother, I still want the best for him.

Happy Carers’ Week to you all.

My Daughter And I – e-book launch

FOR IMMEDIATE RELEASE
6 March 2014

MELISSA MOSTYN LAUNCHES FIRST E-BOOK

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WENDOVER, BUCKINGHAMSHIRE – Following the popularity of her blog, The Mostyn-Thomas Journal, Melissa Mostyn will be launching her first e-book, My Daughter And I, on Thursday 24th April, 2014.

The book charts the developmental progress of Melissa’s daughter and first child Isobel, who has cerebral palsy and associated disabilities, right from the day of her birth up to the present day via blog posts drawn from the Journal, and includes chapters that were never published online.

“The point of my blog was to help me make sense of what was happening to Isobel,” explains Melissa. “At the time there was so much going on I couldn’t absorb each new piece of information properly. But I had to find a way to keep moving on, so I could be strong and be there for her as her mum.”

What makes My Daughter And I unusual is the fact it is written from the perspective of a deaf person. “I am pre-lingually deaf,” says Melissa, “and have no memory of having hearing. So I cannot say I have a hearing loss. I had worked with people with disabilities before I became a parent, so I probably brought a rather divergent attitude to the table.”

Melissa is open about the fact that she blogged primarily for her own benefit: “Of course I was reaching out. That’s what you do when you find yourself very isolated in your own personal turmoil. But what I didn’t expect was the response my blog would get.”

Indeed, soon after starting her blog, Melissa found herself receiving messages of support from people she didn’t think would have much interest: childless people, adults with disabilities, parents of non-disabled children, members of the Deaf Community, people whose parents had disabilities of their own. “My readers came from all walks of life,” she says, “which, in retrospect, shouldn’t be that surprising perhaps.

“When I look back at those posts, I realise that somewhere in there is an universal message that they can all relate to, and I think it’s to do with the human condition and what it’s capable of in times of adversity.”

Personal circumstances prevented Melissa from continuing the blog, but she wasn’t prepared to give up.

“I became a single parent of two very young children fairly recently, and was too busy to keep blogging,” she explains. “However, by then I had three years’ worth of material to draw from; material that I’d worked so hard to write. I couldn’t let this go to waste.”

Hence the idea of the book. “Not only that,” Melissa continues, “but Isobel was still evolving. There was a concurrence between her child development and her evolving disabilities, ensuring there was no knowing what to expect, and I had to keep adjusting as we went along. The new chapters in the book is a way of reinforcing the sense of a continuing journey.”

Although the book’s title purposefully highlights Isobel’s starring role, Melissa stresses that it also explores the broader family dynamic: “I cannot deny the huge impact Isobel’s disabilities have had on the household as a whole. Building in the arrival of her baby brother Benedict, and the areas of interest I developed afterwards, was just as important a way of showing how we all adapted to being a deaf and disabled family.”

My Daughter And I is self-published. Its launch on Kindle will be celebrated with a small event by invitation only in London on the same day. Press enquiries can be made to themostynthomasjournal@gmail.com

My Daughter And I: a story about child development, parenting, love and disability, out on Kindle 24th April 2014

In advance of the book’s release, The Mostyn-Thomas Journal will go offline on 6th April 2014.

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