Purple Tuesday

You can almost feel the buzz of anticipation and excitement in the air, jolly festive music plays in the background, cheerful chatter amongst fellow shoppers fills the store, the gentle hum of the air conditioning units and persistent bleeps of the scanners.

My palms feel sticky, I dread conversation, avoiding eye contact at all cost, a thousand thoughts race my mind as I constantly look side to side and behind almost becoming overwhelmed and anxious of my surroundings. On the odd occasion I catch an assistant’s eye, panic sweeps over me as I fear I’ve misheard them and they’re cussing me in their mind.

I have lost a degree of my hearing for nearly 16 years now, shopping alone is something that is still unpleasant for me.

I try to avoid social situations and work parties in the fear of appearing stupid and thick. Im the girl at the shaded end of the table quiet and would rather not speak and join in than mishear and repetitively repeat ‘pardon?’, My hearing is a barrier that I have been ashamed of showing for so long now. And it’s time to use my experience and passion to spread awareness of the non hearing world.

Purple Tuesday is giving all retailers big or small the awareness of how important accessibility for disabilities is. Working with staff to ensure that the disabled community have an equally pleasant experience. And as cliché as it sounds, minor changes can really contribute to independence. Something we desperately seek and deserve.

Rushden Lakes has encouraged the entire complex to participate in this event and raising awareness. Majority of stores will be reducing their music (which is fantastic for the deaf community). The Rushden Lakes customer service team will be in purple for awareness of the day and easily spotted on site, so if in doubt please don’t be afraid of asking any lovely member for assistance or help with your bags!

I am so proud to work on a complex that really cares towards improving and valuing the additional needs of people with disabilities. To showcase the awareness on such a big local retail park is honestly humbling. And this could really be the start of changing the lives and empower the confidence to shop independently.

Why is shopping with Deafness difficult?

Background noise of music that is vocal is really disorienting, conversations of other shoppers can be picked up and makes it harder to concentrate on the conversation we are having, loud bleeps of scanners and air con or refrigerators is an excessive noise and high ceilings with hard flooring creates an echo and magnifies the noise – the larger the store the worse the situation is. With the excessive noise it is almost unbearable and insurmountable to carry a conversation out or even try to purchase our products, upon research majority of us that are deaf will walk out of a store or leave their purchase due to the overwhelming noise.

Loop systems still seem to be unknown and a myth, do people still use it YES. But are staff trained in knowing how to use this system to its best ability for the hard of hearing customers and where to stand?

Quite simply, No. But the loop system does not work across the entire store, so reducing background noise and training staff in deaf awareness could conquer the issue if needing to ask for help around the store.

What could help?

I believe if stores in the U.K. Could really increase their awareness of how to talk and how to engage in conversations with deaf customers, even with behaviours of deaf children it could really make the store more accessible and pleasant to visit. Making these minor changes, it could really benefit the store and customers.

To combat the popularity of online shopping which is evidently the reason for the increase of store closures across the U.K Could learn a thing or two from listening to the feedback of the disabled community, Simple adjustments of turning music down/ more preferably off, less vocal music and more instrumental music would really help during communicating with staff, good lighting to see face or lips and visual engagements, small knowledge of simple basic signs, quiet times should be welcomed across every store no matter how big or small no matter how big and successful, without your customers the stores simply couldn’t trade, staff presence to be allowed 1-1 time with customers for preferred communications, like texting/writing rather than spoken. A lot of people prefer online due to struggles or accessibility around stores for wheel chairs to navigate more freely, those with ‘can’t wait’ cards and keys are often unknown if they can use the stores accessible toilets. This should be widely allowed. There is more info online and easier to answer your questions which is a strategy of avoidance due to the barriers with in store staff.

Being a part of the deaf community, has really opened my eyes to just how much there is to learn about accessibility for disabilities in this modern day and age. Whether that is Autistic, Hearing impaired, vision impaired, mobility or physically impairments or learning disabilities we all have certain needs that are still struggling to be met in order to help us live independently lead a normal life.

The complex is also asking for our help, please let your voice be heard, whether it’s for you or for your children you’re their voice and the future depends on you!

No changes can be made if we do not shout out for our needs to be met, let the team know today your thoughts surrounding accessibility on site.

What changes would you make and why?

Please look out for my blog post tonight, being employed with a disability and my experiences of overcoming set backs, complex health and how working in retail ironically helped me gain my confidence in myself again.

Autumn

Ahh, Autumn soon as your hear the word its almost certainly snuggles you up in a warm blanket on a chilly morning as the rain caresses the windows. As a autumn born baby, there’s no secret this is my favourite season of the year (autumn is even my daughter’s middle name, aha!).

As much as a few sunny days with a tropical suncream scented air fills your lungs, laughter amongst the children playing in the sand, family bbq’s full of buzz and excitement, stripping to your swim suit on a beach full of strangers laying all your flaws to bare, really doesn’t appeal to me, there’s nothing that compares to the sheer delight that autumn brings, you know like cosy jumpers or woolly hats, dusting the wellies off for a wonderful welly walk and stomp amongst the transitional hues of crunchy leaves in the beautiful golden hour of woodland, until our noses and cheeks are a little rosy, so we cup our hands around the savoured sips of hot chocolatey or gingerbready filled mugs, as much as I love a rhubarb and ginger gin over rocky ice, I love how we feel when a hot chocie brings the warmth back into our bodies after a drizzly, bitter morning walk, (something that’s much more welcomed, than summers rain) puddle jumping, hill rolling, stream exploring adventures.

Or maybe the thrill of Halloween, preparing spooktacular activities is one of my favourite things to do, Halloween crafts, costume making and decorating and finding the perfect pumpkin patch to fill you with excitement, not forgetting bonfire night, the one night you sneak a cuddle with your loved one, but in reality we’re genuinely just here for the warmth of their body and inadvertently looking like love struck teens you once was before. Log fires with melted mellows, nothing beats sitting next to a roaring crackiling fire in your thickest cosiest socks during the autumn and winter nights does it? When you get a little hot but damn right fighting against yourself to move because soon it’ll be over and spring will creep upon us and those guilt free days of staying inside for the rest of the day after your fall adventures in your real life hug of a sweater, delicious cup of hot chocolate with extra mellows, without feeling like you’re wasting a day.

RoamingTheOutdoors.

Whether the weather forecast predicts thundering rain or scorching shine, there is nothing stopping this trio of mine. With a backpack full of snacks and raincoats, suncream or woolly hats. We’re ready to explore the wonderfully wet woodlands, stomp along the crunchy colourful leafs under our trusty patterned wellies and paddle in the cool flowing stream hand in hand.

Having a daughter with a sensory disability has really changed my outlook on parenting, the benefits raising little explorers of the great outdoors are somewhat incredibly interesting and endless.

It’s no secret we allow our children to roam around woodlands and explore new exciting experiences on their own, we take a back seat approach and participate when needed, allowing them to engage together which stimulates creativity when playing, this could be Luka-james building a sandcastle and encouraging through gestures for Livy and Parker to help him dig a castle moat or a big tower. The curiosity amongst the three of them bounce from one another.

We recently come across a beautiful long pathway of conkers in our recent adventure, it was very exciting for the children, and as parents it’s really important to empower their imaginations so we ask questions like;

what are they?

Why are they different sizes?

Who eats them?

How many are on the floor?

What is the texture like?

What colours run through them?

How many can you hold?

Can we find the biggest and smallest?

What can we make with them?

Their ages are 4, 3 and 2 so each mind is at a different development stage.

Livy is of course behind due to her profound deafness and being non verbal. But she uses a great amount of interest when exploring in her own way. She will shake the conker, perhaps try to lick it or crunch the leaf in her hand. She will almost certainly put her fingers in puddles and becomes excited to see the ripples pointing enthusiastically at what she has created!

I also believe exploring the outdoors communicating and teaching our children as a family helps us to recognise danger in different environments, we improve their social skills by talking them through the seasons or helping them through challenges, is this hill too steep? If we need to jump, shall we hold hands, or do we need to sit and wiggle forward? We explore through communication and assess a situation into safety. Instantly we’re so engaged in a exciting new activity and their curiosity is heightened to figure a way over this obstacle enhances their problem solving and confidence, they forget their fear or worries.

With Livy’s needs we have to give a little more support in areas of development. She is slightly pressured and overwhelmed when trying to correct her when stimulating the development of fine and gross motor skills. What we have found is when we’re out we try to encourage the children to pick up a pebble to throw into a lake, also ask questions like, who can throw the furthest? Who can make the biggest ripple? When climbing trees, what can you see? What does it feel like? What animals or insects lives in trees? Simply picking up a leaf, twig, berries or conkers all these help to refine a child’s gross motor skills, without the pressure of a classroom or preschool being taught how to correctly position a pen or how we pick up objects with our fingers. A natural but fun way to help our children’s development, which is perfect for Livy.

The pressure I currently face combining being a working Mum of three, a Mother of a child with a disability, a Mother of a school boy. A home runner bill payer l and guider and a partner. I know I don’t often succeed in finding a balance in all of these. I carry a burden of guilt in this rucksack of mine 24/7.

But I know just for a few of these hours, going on an adventure means pure quality bonding time with my children and partner in the country air, I get to exhale the pressure and guilt that exhausts me. I get to be this fun Mummy who doesn’t need to keep clean ready for work. A Mummy who isn’t limited on time. A Mummy who climbs trees, dances in the rain, splashes in the puddles, makes sand towers and dens, who isn’t afraid to get dirty and crawl with her children in the muddiest tunnel you ever did see. Outdoors is a good healer.

And do you know what my favourite benefit is, they’ll be so knackered from running around and having a great time in the fresh air, they’ll sleep like a log you saw in the forest. And I can slip into my bubbly bath with a G&T in hand and feel no shame demolishing that most deserved chocolate bar guilt free (KID FREE)!

JustYouAndI.

To say juggling a career and motherhood is a challenge, will be the biggest understatement going to the majority of us.

There is no denying, in my blog how often I voice my ‘Mum guilt’, and it is absolutely right to do so. We shouldn’t barricade our thoughts and feelings because society have made us to believe for too long that Motherhood is a beautiful piece of art.

It’s not.

It’s tough. Sodding tough.

I often torture myself in split seconds I have to ponder; am I doing the right thing, should I work so often? Should I be spending more time at home with my children? Do the children remember that I miss bedtimes, sometimes upto 4 nights a week? Do I give them enough divided attention? Do I show them I love them enough? Do I discipline them enough? Do I discipline them too much? Am I shouty Mummy? Am I doing homework ok? Am I giving Livy enough guidance? Am I giving Luka-james enough attention around his school day? Is Parker’s needs being met? Do I tell them I love them enough every day?

These are the type of questions that batter my mind, like a energetic adrenaline junkie, high on candy floss at the funfair bumping the shit out of every poor soul not quite fast enough to dodge the dodgem of doom, every night before I close my eyes on another day.

This Friday Livy and I saw Luka-James off to school, Parker-James went happily off to Nanny and Grampy’s and whilst our morning consisted of a visit from the Teacher of the deaf and blood tests we had a rare afternoon together.

The world was our oyster.

I cannot remember the last time we had just a Mummy and Livy day, and whilst I sing my praises of what a lovely little girl my daughter is, as we walked hand in hand in the autumn warmth, I honestly felt choked up at what a beautiful special soul she truly is.

Her nature is bubbling of curiosity and excitement of what’s to come next. With every leaf, she found herself carrying such eagerness and enthusiasm that the exact leaf she choose to give to me, was definitely extraordinarily different to the hundred others that have fallen upon the footpath full of autumnal hues of soft golden browns and orange.

And whist she still cannot communicate clearly, being non verbal and not so fluent in sign just yet. I understood every single gesture, I could read her expression to radiate the same look of surprise or enthusiasm back to my kind hearted girl. It’s like when we’re both in the great outdoors, where we’re surrounded by nature’s beauty, we just connect on the same level.

Even if we’ve walked this same footpath 20 times before, her hand in mine we made it more exciting and I think we both truly cherished this rare Mother and Daughter time.

We collected leafs of many colours, we pointed out the ducks that gently went along their business, we waved at dogs that bounced happily past us, we skipped amongst the crunchy leafs, we ran side by side hand in hand, we splashed in the waters and the muddiest of puddles until our socks went soggy and our cheeks throbbed from laughter. We went down the slide nearly fifty times just to hear her sweet giggle of joy as she kissed my forehead after every go and I’d go down that slide fifty more times daily just to hear that sweet precious sound for the rest of my life, until she cannot fit on my lap and glide down the slide in happiness.

Sometimes we become so consumed and wrapped up in making a living, that we forget to live and to make memories with our children.

The pressures that modern day family’s face, the pressures to rise to expectations that families with disabled children, have to ensure we go above and beyond to reach their needs, the pressures to succeed and be noticed at work. The pressure of failing with all these people’s faces curiously watching the way you carry yourself, the way we parent or work.

The fear of failure, fills me with dread.

We let slip of the true meaning of happiness of life, because no amount of money could even buy me the happiness of my hearing my daughter giggle in my lap every time we splashed or glided down the slide, like we did that day.

Every doubt that ever crossed my mind if I’m doing ok as a Mother, reminded me that everything she is becoming is from our guidance and nurturing as parents.

And Alivia-Ellen, my darling. Whilst we wait in uncertainty if you’ll be ready for mainstream school in 2020, I, for one know you’ll move mountains in anything you set your desire on.

WonderfullyWetWellies.

On a rare Sunday off from work, we decided a classic Sunday was well over due.

You know the ‘Family Sunday’s’ where a ray of colourful wellies sit in the back of the car, excited for their next wonderfully wet adventure on 3 sets of tiny toes. Jumpers are finally making an appearance as the autumn chill hits your nostrils filling your lungs with the crisp fresh air.

With a rounding of troops, we set off for our adventure of anything goes. Are we searching for bears amongst the once fully leafed woodland, that now looks naked and bare. Or are we looking out to the foggy grey skies for what boat is escaping the deadly jaws of the lake monster…

As poor dad is suffering post rugby bodily aches and a equally as matching pounding head from the post beer consumption from the day before, sulking from a slow learning that a 30 year old body no longer recovers as a 29 year old body. The adrenaline starts to hit all 3 kids and head straight to the waters to put their trusty wellies to test and splash in the cool autumn breeze.

Whilst trying to aid all three kids from falling face first into the lake, (with minimal effort aka absolutely non help from a hung over dad), whilst they take pebbles from beneath their wellies and give Olympian worthy shot put throws into the angry rippling water. The skies turn a dark grey, setting a scene that could give Harry Potter films a run for its money, as mist sets heavily across the distance… we decided to move on and get our walk over and done with before the rainstorm falls.

Hand in hand Livy, Luka and I set off in front pointing out colours of the leafs and boats within minutes Dean is shouting Beksie look!!! Run!!!

As we turn to our left we see the lake in the distance taking an absolute battering from the rain with the wind blowing it heavily across, sail boats are rapidly trying to make their way back to shore, rain is drawing closer making Luka-james scream in pure delight!

IT’S RAINING.

But not just any rain. It’s a pounding down power shower at full pelt hammering it down on your head, with no forecast predicting such heavy down pour, this ever so organised for all weathers mother, who packed no sodding coats.

Obviously.

So prepared.

What may seem a disaster of a family Sunday, soon turned out to be the best 45 minutes of sheer delight, squeals and smiles that didn’t drop or disappoint. Sometimes in life specially in this generation we’ve become obsessed with posting our best bits in life, not everything will be insta worthy. Not everything in life will be perfect and sometimes won’t go the way you imagined it. But that’s ok, because 3 children in ankle deep puddles with a strong full pelt rainstorm made the best memories we will treasure for a life time.

Stop waiting for the storm pass. Learn to make the best and most out of everything in life, pull on your wellies and dance in the rain with your babies.

Here are some photos of our unexpected wonderful rainy day out.

l

OnYourRoadToSchool

This morning was a little busy,

For your first day of school,

Your belly might feel a little fizzy,

It’s hard to believe, I know.

Just how much you’ve grown.

As you smiled in your royal blue uniform,

You stood so proud and ready,

As you turned off the telly.

We arrived just on time,

Hand in hand, I’m so proud you’re mine!

It’s time to face your fears,

Just one more kiss for goodbye,

As you begin to walk inside,

I promise not to start to crumble,

As I wipe away my tears with pride.

I’m excited to see the changes,

Of this little boy of mine.

Independence that you’ll grow

I know you’ll be just fine.

WALKSBOATSANDICECREAM

Sunday.

A day usually associated for family time, long country walks and a satisfying smell of a chicken roasting that fills the air, setting our taste buds tingling from anticipation, which leads to the repeated question of ‘Is dinner ready yet?’

What could be more peaceful and bring a feeling of content sitting in the fresh air, sun shining, Luka-James attempting to be the next Joe Root, Parker sulking at the wait of dinner and watching Snow White, water the flowers, boarder line drowning them with intent…

A delicious gammon and chicken roast with all the trimmings finds its way to the table, a trio of satisfied tiny bellies. We rounded the troops up and set off on a promising 3 mile adventure across the country fields to reach our final destination, ice creams. Whilst we take in the views of the cheerfully colourful narrowboats, resting upon the canal after a busy Sunday of punters.

Bliss.

Or so it seemed…

The 1.5 mile journey there resulted into one power walking mother pushing a daughter who was certain she would break free of the trike on the narrowest footpath, we may as well walked on the road. Pointing at every farm animal in sight which developed into making her break free attempts even more tempting, than sipping the ice cold gin i was fantasising over in my mind, making the experience ever so slightly bearable. A Father balancing an iPad on the hood of a Quinny, like his life depended on it because naturally watching England play in the finals, was a life or death situation. However Parker who was full of delight pointing at every zooming car that passed us, couldn’t have been more content with our outing. Luka and Nana Bev was partners in crime, making a tribe of sloths look Olympians.

Upon reaching the top of a torturous hill climb, slightly sticky and sweaty. I come across a phone laying on the grass verge. Strange. Why would a phone be laying on a country path… pretty much in the middle of nowhere residential.

After a quick phone call to the owners wife. A owner who was drunk, made his way home on a bike after a afternoon piss up, without realising the phone was missing… happened to be married to the Ice cream lady!

RESULT BEKSIE!!

A clear sign this walk was worth the effort, a sign it was meant to be.

A kind gesture of returning the phone to its rightful owner, resulted into free icecream and drinks all round. Small act of kindness goes rewarded and all that…

As the sun started to set, greeting us with a sky of pretty orange and pink hues, narrowboats rainbow of colours glow invitingly against the warm summers sun, sparkles hit the ripples of the canal. As we sat with ice cream and sprinkles, feeling slightly rewarded from walking such distance with 3 irritable kids and nobody losing their shit with one another, Luka-james asks for a photo near a sign of the museum. Hesitantly taking my phone out and took the photo I urged him along for the anticipated walk home…

Of course he had to cover the C, making my inbox influx with hilarious comments at the unfortunate mishap of a photo.

At this point, Livy has fully lost her cool and throwing a whooping tantrum, her usual snowy white skin is now red with rage, her screeching scratchy scream is beyond insufferable. I’d rather be in a room with multiple of people scratching nails down freshly laid plaster. Obviously being non verbal and refusing to wear her aids means she’s beyond reasoning and screaming like her dependency assured her an escape of the safety clasp of the trike straps.

Luka then sits firmly on someone’s immaculate front lawn. Refusing to move, ‘I’m tired. My legs tired.’ Resulted into a swift non hesitated lift home from Papa Jon with Nana Bev.

So then that leaves 4 to get through the 1.5 miles home. Seems pretty reasonable right?

No. Livy was completely and utterly relentless, for the entire half hour walk back. Luckily for Dean he was taking a shockingly slow pace to ensure he didn’t miss any important detail of cricket. But as he turned the corner, he dropped the valued precious iPad into the road causing a cracked the screen… resulting into a pissed off daddy. I’m pretty sure 2 days on I’ve still got the torturing scream scarred into my ear drum for eternity. How nobody stopped to see if the child in distress from being kept safe and unharmed, was actually not kidnapped. Calves burning, heart pumping, sweaty hair and matching red faces and potentially a migraine statically in place for the entire week.

We made it. Just.

Obviously the real winners of the day was Papa Jon and Nanny Mags, choosing a air con cool room, cricket on a tv with a chilled beer in hand was more appealing that a hellish walk for a icecream that was only chucked in the bin after all…

How ever, family time is something that comes cherished and valued. Even if it wasn’t picture perfect, it’s still memories made to last a life time.

LONDONWEGO

For the first time in sharing our journey of Alivia-Ellen’s hearing loss and all the trials and tribulations that follow, came a feeling of reluctance.

When we was first faced with the diagnosis of progressive bilateral hearing loss for Alivia-Ellen, a tornado of feelings and emotions spiralled in a space of a minute. My brain was ticking faster and faster and there was no off button to pause for a second and think rationally. I skipped 20 years and imagined how her future could be affected, and dwelled upon that, she was only 10 days old.

In the thick of things, when we’re dealt a hand we never expected, never anticipated, never imagined in the 9 months of a blissful pregnancy. The feelings of receiving life changing news can be intense, stressful and overwhelming.

My armour and exterior provide my children with a strong Mother. In the waiting room of these appointments, there’s a mutual silence amongst the parents, gentle unaware hums from the children playing or colouring. The tick of the clock is almost in sync rhythm with the beating of my heart. 3 years into our journey I have mastered the fine art of withstanding my emotions and attend these appointments with no upset.

But beneath my confidence and positive exterior, I’m scared too.

‘Come what may.’

Recently we found out Alivia will be embarking onto her own adventure to London to discover her true diagnosis. Same as Mummy, from the age of 10 I was under the care of Great Ormand Street Hospital and Royal National Throat, Ear and Nose Hospital. My daughter is following my medical footsteps but for a wider range of reasons. I now feel ready to share with you all.

⁃ Progressive bilateral sensorineural hearing loss.

⁃ Alivia’s vision is worsening

⁃ Albinism proposed as a possible diagnosis.

⁃ Significant speech delay (non verbal)

⁃ Impacted bowels (constipation)

⁃ Bilateral divergent squint. (Turn to eye)

⁃ LADD Syndrome and Alport Syndrome proposed possibility.

During these appointments, what feels like your child is stripped of her identity and is now just a mystery medical examination.

All her features that I find make her the most beautiful little girl that she is, are now just part of a genetic flaw. From her flat button nose to the fair colour of her hair and brows. Her cute peggy toothed smile and wide feet with short stubby toes that I kissed individually at night from the moment she was born. From the way she stands and holds a pencil, are all listed and sent off for a genetic discussion.

During the process of these genetic appointments, which feel more nerve wrecking than waiting for your GCSE results in front of your parents, I am certain there is a process slightly like what I can only imagine a grieving process to be.

How we cope and feel before, during and after these appointments will be different for every parent. I tend to talk openly about these appointments to anyone willing to listen, no matter where I am if a thought appears I tend to blurt it out, it helps me process what happens and formulate acceptance. I allow myself time a day where I digest my thoughts and feelings surrounding medical appointments. Where as her Father absorbs and internalises his feelings. Coping looks different for everyone. And that’s ok too. All part of the acceptance of a diagnosis.

SELFLOVE

Embracing the flaws of what’s left after child birth, is ultimately a challenge most Mothers admit defeat to.
Learning to accept the remains of loose skin that accommodated growth of our precious bundles. To find comfort in the scar of our csections which delivered a baby safely. The imperfections which caress our skin where our baby had once pressed against from the inside. Boobs slightly deflated from nurturing our newborns.
Yes the extra pounds of weight will eventually disappear, much like the pounds we willingly give over secretly sobbing of hope that the creams and oils will erase the left over tell tale signs and be a distant memory. But the marks left upon our skin will stay, the journey of self love is a long hard road to conquer. With a insta perfect society we currently live in, we are somewhat discarded and no longer admired.
Because your skin has torn and produced tiny kisses across your body as a gentle reminder of the battle we endured, pregnancy.