Mothering Silence

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.

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.

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.

Have a try at finger spelling your name!

Deaf Awareness Week – Sign language and communication.

Basic signs during early years can really help minimise frustrated behaviours for a deaf/hardofhearing child.

Whilst I am yet to find a workshop to be able to participate in, I have found some fantastically illustrated books by Baby Signing, these books have also been reviewed by NDCS. The signs are compatible with those used in Makaton. This is different to signs used in BSL, the purpose of Makaton is to support speech. BSL is it’s own language with a structure of grammar, you will use hand signs as well as body language, facial expressions along with lip patterns.

As part of Deaf Awareness Week, my aim is to encourage anyone into learning a sign. One small gesture to a non hearing person could ultimately mean the world to them. Remember, a small act of kindness is never wasted.

BSL and Makaton is not accessible for majority of the families and come at a heavily funded price. Small workshops are available but for a family to communicate with their child, this needs funding longer than a once a week, workshop for 4 weeks. They need continued support, to help not only the child but the family too in order to be able to communicate effectively, more funding needs to be added and not being cut or reduced by the government.

Here, are Livys most favourite and recognised signs from her books.

Eating and drinking – these are the signs Livy recognises well and uses them in everyday life at home as well as nursery.

Animals – these are her most favourite and well used signs, she will show a great deal of interest and focus on this page. She really knows what they mean and can match the sign to her Rabbit soft toy.

Here is Livy signing cat.

Basic everyday signs.

Livy signs stop really well and uses it in the right context too! She demonstrates clear understanding of the sign and uses this at nursery too!

I love you.

This is still a work in progress for Livy. But it’s a rather important sign to know for family and friends. Remember repetition is the most important part of a deaf child’s learning.

Mum and Dad.

This is Livys way of signing teddy bear. It’s nearly there.

These are my most treasured favourite memories of Livy.

Why not set yourself a task and spell your name through British finger spelling?

You can find more information on signs through:

https://www.ndcs.org.uk/signlanguage

The books can be found on Amazon:

https://www.amazon.co.uk/My-First-Signs-Baby-Signing/dp/1904550045/ref=mp_s_a_1_1?keywords=baby+sign+book&qid=1557594976&s=gateway&sr=8-1

I would like to state I do not own the illustrations or own any copyright of the material, I am simply sharing to raise awareness and educational purposes.

Whether your family day out predicts a forecast of rainy showers and muddy wellies or sunny blue skies with a scent of sun cream drifting through the air. Regardless of the weather, West Lodge Farm is sure to provide a lovely day out that will put a spring in your step.

Luckily enough we live local to take advantage of this beautifully clean, well kept and mapped out family owned farm.

From the moment you’re greeted with a warm welcome from the minute you leave, there is such a family element to the farm.

I love the fact that the West Lodge has been farmed by the same family for three generations and I truly believe this reflects on your experience and time spent here. The staff and farmers are polite and warming. The farm itself is pleasingly clean from the canteen areas and a hut providing light refreshments with dietary icecreams too, the toilet huts are really good with baby changing facilities inside each individual hut. And the hand washing areas are all kept tidy with warm water, soap tissue paper and alcohol gel with clear guiding instuctions on how best to keep safe after touching and feeding the animals there are a few allocated around the farm along with a boot wash, everything is well kept and sanitised. No litter insight, the pens where you can hand feed the animals are immaculately clean with bedding replenished to a satisfying standard, even I want to jump in the fluffy hay!

We have visited many occasions throughout 4 years of motherhood. And since then I have never realised how important it is to have something this lovely and educational on our doorsteps, if you take not only advantage of feeding the animals which boast a wide variety of livestock and having a good jolly play in the fantastic outdoor adventure and inside play ground, pony rides or a tractor ride. Ensure to bring some wellies if you decide to do the walks in the Forrest provided around the farm. From the troll bridge to the witches house these are situated in the woodlands, it can be a little muddy and a fair few steps in the adventure!

West Lodge have provided many theme days, celebrating the usual Christmas and Easter holidays, we have attend the Halloween pumpkin picking… twice in fact a week after each other as the children just enjoyed it that much. Seeing their proud faces picking and plonking their own pumpkin in little wheel barrows, unseeding and drawing their own design before it is cut out professionally by members of keen steadily handed staff. (Saves us mums a messy task!) It was fantastic to see the staff dressed amazingly for the pirate treasure hunt. Ahoy!

As well as providing walks, adventure play, handling animals or feeding them we have noticed on occasions they host educational trips to learn about livestock and farming also a Forrest school as well as allowing you to celebrate your little ones birthday with parties in true farming style.

Intentionally or not this farm has an amazing access for Pushchairs and wheelchairs providing spacious routes around the animal pens, this has made it easy for the whole family to enjoy. But please note the walks are not all wheelchair or pram friendly. Having chatted to a lovely member of staff she told us this was about to change in the very near future near troll bridge. I have also always felt my daughter was welcomed and the reception staff have always gone out of their way to communicate to Livy, with profound deafness it’s lovely to see them try to include her on her exciting day out, she’s not able to express her excitement or feelings via a lack of communication like her older brother, the staff pass her the bags of animal food and a map to carry on her big adventure. (Thankyou, for the kind gesture that has always been shown with every visit). Also with identification of being a carer, you go free with your child.

The pricing of entry is extremely affordable for families, I really hope this stays put. There is reduced entry after 3.30pm, this is something I truly value about the farm. Modern day families budgets vary, and it’s so nice this farm has allowed all budgets to truly enjoy a day out.

What ever the weather you face on your family day out, this lovely rural farm is sure to cater to all your needs. Wellie boots or not you’re adventure is bound to be enjoyed

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Expectations.

This week is a beautiful reminder how united the deaf community is, yet how much adversity we still have to face in this modern day and age. 11 Million people solely in the U.K. are deaf or hard of hearing.

In a world of silence, like my daughter, it can be astonishingly difficult to comprehend how she must feel. She is fortunate enough to have hearing aids and so recently a radio aid through our NHS and council. It is still uncertain just how much accessibility she has to sounds through the equipment. At the age of 3, the tests are never conclusive.

My feelings towards being a parent to Livy.

My expectations of Livy are not much less or greater compared to my hearing sons. I still believe she can and will achieve great things in her life of silence, I may be instinctively protective of my daughter but I also allow myself to not be over protective… she has no form of knowledge of risks or assessing dangers. Whilst I watch her obsessively. I allow her to take certain risks to allow her to learn and stimulate an independent upbringing in life…

If her brother climbs a rock climbing wall at the park, you have no chance to even have an input to stop her… the girl has an inner mountaineer with an added extra mix of an adrenaline junkie!

She’s climbing before you can even blink!!

I show no extra fuss or protection to Livy, than I do the boys, I treat her no differently and this is because I do not wish for her to see herself as different to others. I still take her out to the Parks, play barns, farms, meals out, library’s. All the normal things mothers do with their children, I simply just have to have a dose of extra patience and understanding to calm or pause a situation to comfort a disoriented and flustered Livy.

Not only does Livy suffer with profound loss, she also recently has a form of vision loss/ difficulty which has caused a sudden turn to her right eye. This has complex problems in itself. Along with a communication barrier she can often display frustrated behaviour that may look questionable to other parents, unknown to her. Although Livy has a hearing loss and wears aids, but honestly she really is no different to any of her fellow friends and nursery peers.

Her sweet bubbly personality is infectiously likeable. She’s constantly smiling and making content squeals or Hums. The way she beams with warmth and pride, a smile that glows as she claps to herself in delight. She’s extremely maternal towards younger children and although she hasn’t got the awareness or ability to understand to be kind and gentle towards them, rarely does she need reminding. She’s got an inner entertainer about her, nursery sent me a beautiful short clip of her playing peek a boo with a younger peer. She loves to dress up as superheroes whilst wearing child’s dress up heels. Her desire to explore and learn how the world works is enhanced by her nursery key worker, Chloe. She gives her the courage to explore and be her own individual person. I believe sending her to a nursery setting has enabled her to shape her quirky diva personality to the best it is and this is all down to Chloe, I have wrote more about her nursery experience in a previous blog post.

All the above shows she’s just like all the other three year olds, exploring and learning. Developing the very same way. Please know that everyone should be treated in the same way, no one should be excluded, thought of differently for a disability.

Expectations for a deaf child can be the exact same as that of a hearing child. With a little guidance and understanding patience, they can extraordinary achieve the same.

However, Livy really struggles with basic communication. She tends to scream and squeal at us using hand gestures. And really clear facial expressions. Her cross face has been nailed beautifully!

She can sign few basic signs to help her tell us what it is she wants. But if it’s something we’re not understanding she has a tendency to show anger with frustration and occasionally lash out or throw herself to the floor upset. As a family and her key worker we try our hardest to work through her upset and frustration to understand what it is she wants, then show her signs for what it is to help her in the future to tell us or she will show us.

The funding unfortunately just isn’t there to support families and friends to communicate with their deaf child/friend. There are very few workshops available but they come at a price. Which some families just don’t have accessibility to.

I spent a lot of her first year in worry about the prospect of bringing up a deaf child in such a complex society. I worried about schooling, bullying, meeting parents who wouldn’t understand my child’s needs. If nursery’s could cater for her ect… I need not had worried myself silly.

Since living in the moment, she has amazed myself and others with her stubbornly fierce independent personality. I no longer worry about bullying, I believe she’s shaped into such a strong character, she can really hold her own. For now as parents and nurturers I will always support and guide my children to reach their absolute full potential in what ever they wish to succeed in.

Regardless if she wasn’t deaf, bullies could find a dozen of things to pick on may it be Skin, hair, clothes they wear or characters they enjoy to watch.

I will continue to bring my children up with a strong mentality to love and respect everyone and not to define a person by their colour, disability or difference.

There is ability, in every disability – Mothering Silence.