PECS

Introducing Livy to something new!

Since Tuesday we have been given a communication book by her SALT therapist.

A new project to both Livy and I. I’m still trying to educate myself on PECS and the best way moving forward with this. Her book is quite intimidating and very busy with lots of pictures/symbols. But luckily Nanmar came to the rescue with some bigger and colourful PECS that we can use but we are learning together along the way.

Hopefully this eases some frustration for her.

Here you can see she’s identified the customised hearing aid PECS to her hearing aids.

I will keep you all updated on our journey. And remember what works for Livy may not work for everyone. It’s all down the the individual.

Good work Livy.

Acceptance.

Talking about my own journey with hearing loss is still something I struggle to admit to. It’s not something I feel freely comfortable about. And whilst I realise the irony of raising a daughter to be proud and accepting of her deafness.

She is really the one reason that’s leading me on a journey to accept my own disability myself. I lost my own hearing around the age 8-12 nobody really truly knows. And I have spent many of my teenage year feeling sheer anger towards the world, hating myself,
Embarrassed by myself and the new life I was forced to live as a now deaf person.

But perhaps one day I’ll talk about this soon, I’m just not ready yet. So here is a little insight to one of my struggles…

As an adult with hearing loss, the simple things, everyday things in life can become exhausting.

How can hearing loss lead to a feeling quite like exhaustion, I hear you say. (No pun intended!).

Having a device like a hearing aid, which works by amplifying the sounds, leads us into being ‘in between’ the deaf and hearing communities, the aids act like a bridge bringing us together.

Yet, I cannot solely depend on the hearing aids. The aids do not always give me the accessibility to access all sounds when there’s lots of disturbances like background noise in shops for instance, the music, air conditioning, hums of chatter by others around you, footsteps and clatters, the high pitch of a baby or child scream or cry. Doors opening and shutting, rustling of a bag can all take away the sound you’re trying to focus on.

Being deaf you can absolutely find yourself working above and beyond to hear. Working in retail, possibly the hardest career choice for a deaf person, I concentrate intensely and rely on lip reading my customers and fellow team members and have to concentrate in order to be able to keep up with hearing people. When needing to use the phones, you have taken away the help of lip reading, taken away the ability to read people’s body language and facial expressions which is extremely helpful and important when trying to identify the nature of topic which can be problematic. I have to consistently repeat myself and really focus on ensuring I’m hearing correctly without the aid of support when a person is in front of you.

I really do struggle and the focusing is exhausting. Whilst I am incredibly lucky and privileged to live in a country where resources like hearing aid equipment and testing is free via NHS, being given the ability to hear my children say I love you is overwhelming and I’m beyond grateful to have this opportunity, but times when the days feel tiresome or challenging I do take the hearing aids out and it is very liberating to really appreciate and take pleasure of the silence and be deaf again.

TaleOfTheMissingAids

Now this is a story all about how these pink aids life got flipped turned upside down and I’d like you to take a minute just sit right there I’ll tell you how they became the missing aids of a palace called Blenheim.

In Northamptonshire born and raised
In Livys ears is where I spend most of my days chilling out, relaxin’ took a trip to a palace all cool and when a couple of fingers who were up to no good started makin’ trouble in my ear’hood.

Those fingers got me in one little fight and thrown in the mud and it was from that night I knew I would be lost and staying right there, in the palace of Blenheim.

I begged and pleaded with every stranger that passed day after day, but another kick by trainer sent me on my way.

I long for those days all dry and away from rain, muddy puddles and cold nights is this what it feels like living in the wilderness

Well uh, a torch light landed and my shiny case reflected in the pouring rain. A dude looking like a steward was standing there, whistled down his hands and he picked me right up.

I pulled up to a house about 20, 21 and I yelled out to the postie, yo I’m homie! Looked at my kingdom I was finally there, back next to that blonde frizzy hair.

https://www.facebook.com/BlenheimPalace/

It’sNotThatEasy.

For every parent in the senhood, we build a strong exterior to face the battles, not only for our children but ourselves too.

Livy does not only face profound deafness, she has multiple complex health conditions which aren’t always as visible. The happy, bold fearless little girl you see suffers in a world of silence too.

Livy has chronic constipation issues which comes with no signs and no warnings, unable to express herself or make her pain known. We solely rely on our instincts, observing her facials, her body language and emotions. As non trained medical professionals we have slowly become dependant on our gut instincts.

Although Friday came with absolutely no changes in herself and no warnings. Within a second she went down hill.
I have not posted this for sympathy, it’s more of a insight on how our confident daughter with almighty sass can turn a corner quite suddenly. This is our reality. Her bowel impaction is one which has its own set of complications and additional needs, something I don’t share with you often.

She has suffered chronic constipation for well over a year now, her bowel has been under so much pressure, she has lost the sensation of her need to pass stools. She is on two medications to help her consistency but yet we are to find that balance. And she’s still in pull up pants.

Friday, we attended a emergency audiology appointment to replace her hearing aids that she spontaneously and deliberately lost the evening before (more to follow up on that!) she was playing with the audiologist, suddenly she went very quiet and made her way back to me. As I stroked her hair and tried to read her expression, she projectile vomited everywhere. I have honestly never seen so much vomit from a child. A passing ENT nurses and a NHS governor body came to our help, and I honestly cannot thank them enough for their quick actions and empathy.

Unlike hearing children we cannot comfort them with our voice and calm our children down, but Livy solely relies on touch – sensory feedback. Which makes soothing her during this is incredibly challenging needing close touch and resulting most vomit down myself than in the sickness bowel. Due to being in freight she proceeded to panic and choke.
It took all my strength not to cry for my little girl. And the worst feeling is not being able to calm her down and take this away from her.

This is what happens when she gets too much pressure from the impaction and inability to control her stool movement.

She was rushed to a&e whom assessed her situation and increased fluids to replace what was lost from vomiting. And altering medication to return home.

These type of days take us by surprise, and remind us of the strength and resilience Livy has towards her complex needs. She bounces back and ready to tackle life as we know it.

I am so thankful for our NHS.
We are incredibly lucky to have this service.

Honesty.

When I started blogging around my daughters disabilities, I made myself become open to questions.

One struck me yesterday and it’s still on my mind.

‘How do you cope taking Alivia out with her brothers and is it hard to cope with?’

The intention of my blog was to be as real, honest and raw. Whilst I share photos of my children screaming of delight, beaming smiles exploring another national trust park… they are also the most challenging days we face as a family with Alivia’s ever testing behaviour, but there comes rewards too.

To see her express herself and explore new surroundings is simply beautiful, to stand back and watch.

Her little quirky noises, shrugs of over excited shoulders, her peggy toothed smile lights her entire face as her blue eyes glistens in the sunlight.

Yes, days out can be extremely stressful and left feeling exhausted, things never go to plan no matter how much we’re prepared. She is unpredictable. We try not to let her behaviour take away the goodness of the day for her brothers and we see it through.

Sometimes I become her mobility and carry her 5 miles to the car. Sometimes we give in just to make life easier. Sometimes we cut days back slightly shorter than planned. Sometimes they feel more hassle than it’s worth.

But the stress does not lie within her hearing loss itself. It’s the frustration of communication barriers and being unable to express herself, express to her the dangers of keeping her safe, unable to warn and guide her of what’s next.

When days out feel a little hard, this is when you dig a little deeper and find the beauty in the depths of your stress.

AssessmentsBegin

As her warm hand swayed with mine and Daddy’s down the steps to theatre, she showed no signs of anxiety, anticipation or apprehension of where the nurse in pink was leading us to.

I wanted to express my anxiety and share with you how it truly feels when your child is under General anaesthetic. I am more than aware there are millions of surgeries that take place within children under 5 and you maybe thinking what an over reaction this post may seem. But as soon as I received the letter I was already nervous for when my daughter needed to go under. For the next 7 days I tried helplessly to research other parents experiences to fully understand what to expect. (Like all those sleepless nights researching hearing loss in babies, you may recall?) I really struggled to find anything that I needed to read to settle my over racing thoughts.

This increased my anxiety and heightened my emotions. I am, unfortunately one of those people, who when feel out of control they need to know all steps of a process in order to be able to feel at ease and feel slightly in control of a situation without being there. Even if that means knowing all the nitty gritty details.

Due to the nature of the tests we both surrendered our hearing aids, the only connection we had to the hearing world (the only chance of communication to the specialists in the room). The only feeling I can explain is you feel isolated, withdrawn and detached from anything and everything. I immediately felt her pang of anxiety.

A silent bright, anaesthetically white room, full of machinery and uncomfortably unfamiliar faces restraining her, unable to speak out, unable to understand what was to happen, my daughter fought back as the mask was placed over her sweet little face. I held her tighter than I could imagine, knowing I couldn’t combat the anxiety and uncertainty my daughter feared, knowing I couldn’t be there to oversee and protect my little girl, yet even the tight hold of her mothers embrace wasn’t enough to comfort her. The muffle of her screams beneath the mask will be a sound that will haunt me for a while. As her eyes rolled back, her body finally reacting to the anaesthetic, went from pure restraint to suddenly limp and floppy in my arms.

This was something I found incredibly hard to bare placing your limp child on a bed leaving her in the hands of someone you’re forced to trust and needing to walk away. It’s was like gravity pulled me back and I kissed her snowy white cheek.

Alivia’s effort to fight against the mask being placed over her, like the little warrior of fierce stubbornness we all know, meant the usual guidelines of 10 seconds to work, took a little longer but just under a minute she was put to sleep. When our children inhale,the gas travels through the lungs, blood stream which then pass to the brain which begin the effects of inducing unconsciousness. Then to keep the affects of the anaesthetic a cannula is applied to the back of the hand, this will be when they inject an induction drug.

I looked back as the specialists began their work on my daughter, placing a cannula on the back of her left hand. She appeared safe and sound. Two nurses accompanied me outside the surgery room asking me if I was ok and cuddled me. I reassured them I am fine but my heart and gut felt anything but. Dad was waiting for my return. We grabbed a coffee and bite to eat, to pass the 45-60 minutes that we had to spare before being reunited with our daughter, neither of us could bare a chat. After a hour we made our way back hesitantly to the waiting room.

Every time I heard a door open I felt a pang in my heart. But every time wasn’t for us.

A hour and half later a male dressed in burgundy scrubs asks if I, mum could follow him as Alivia was just coming round.

I wasn’t sure on what I was anticipating to become face to face with… I assumed my daughter would be drowsy and curled into the ball she tucks herself in, all long limbs tucked under her delicate little body with her bum in the air.

As I walked towards the recovery room the sound was like something of a horror movie. She was screaming and distraught. As I reached the door I could see she was fighting against one of the nurses who was desperately trying to console my little girl. All limbs lashing out bending her body in unusual positions. Mouth wide open with a half scream half groan. It was like watching her being possessed. Horror movie material.

I tried to comfort her with my touch to let her know that Mummy was there and she was safe (to state the obvious talking is no option here) But she didn’t sense me, saw straight through me and resumed to closing her eyes tightly shut and throwing her curly blonde haired head back, continuing to lash out and groaning uncontrollably. I was reassured that this was a reaction to anaesthetic in young children that they see often. And she would need to sleep again until the effects are worn off. As they felt sure she would be ok, we met dad in the corridor of the hospital whilst I tried my hardest to lay on the bed with my daughter providing a source of comfort and keep her from wiggling around the trolley bed. We had to pass the main entrance, which Alivia’s reaction meant we was met by concerned, curious looks of the publics faces.

Emergence Delirium, you can forget the thought of being reunited with a drowsy sweet child. You’re presented with your child being a force to be reckoned with. An irritated, inconsolable, uncompromising and combative possessed child who cannot recognise her family, objects (a sodding £19 jelly cat unicorn she hasn’t touched since!) Alivia was basically thrashing herself around on the trolley bed, eyes shut tightly closed, kicking punching and part incoherent screaming and crying.

It was honestly not the nicest thing to witness as a parent and there was nothing we could do or help Alivia, until she went back into a deep sleep. I don’t know how I’ve become emotionally strong and resilient with regards to challenging times. But I am so thankful I am, otherwise I think dad, would have broken down too.

As we made our way back to the children’s ward, after 20 minutes passed of this possessed energetic acrobatic body movements, Alivia feel back into a deep sleep.

In a deep sleep after the effects worn off.

Her dad and I kept exchanging looks of WTF… what an experience! To think she was only down for a hour and a half. I dread to think how she will react if cochlear implants are a success.

The best snuggles.

After nearly two hours of a sleep, where she continually had her obs checked. We decided to ask a nurse if she was ok to wake up and try again. After a couple of minutes our cheeky girl was back, almost immediately signing for food and ate an entire plate of sweet and sour chicken, go on girl! Nobody really truly knows why this reaction takes place, but it’s nothing to be alarmed about or causes any affects to her. Apart from being in the moment where they can potentially pull their line out or fall off the bed. I wish I could have prepared myself a bit to know what sort of reactions are possible. But we know now, and there is no need to worry because after the initial 15-20 minutes we know the episode will die down and she will fall to sleep.

Food. Drink. iPad. What more could you need?

We look forward to the future with Alivia continually taking every test, assessments, hospital appointments and educational appointments in her stride. As always her strength and resilience to her daily struggles is outstanding how at 3 years olds she is this remarkable. Mummy and daddy love you darling, and although mummy can’t always take your fear or pain just know for every tear that falls from your big blue eyes, two fall from mine.

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)!