I didn’t quite expect the thump, you know that middle landing, directly into your chest cavity type of punch.
I’ve been so busy with your sister, I’ve been so busy pushing myself at work, to gain gratification that I was worthy of a promotion.
Lost in a working Mum’s world, I forgot. I selfishly forgot.
I never thought I’d be one of those mums, the type of ones that are crying at the very thought. The ones that mourn over the prospect.
Our last baby, is starting school.
It wasn’t until it stopped me in my tracks, and if it could it would be looking me dead in the eye. For extra measure, giving me those stares that goes down deep in my soul.
I wasn’t anticipating to be pinged with a pinch of sadness or is that guilt? This moment in last baby’s life is enormous. Not teeny weeny, it’s huge.
I admit with my first, I was so keen for him to put down the play doh that I would find squished and moulded in places I never knew possible and pick up the phonics. I couldn’t wait to experience the school runs, I couldn’t wait to proudly show off I had a school baby!
My daughter, was a whirlwind of emotions raging from anxiety, apprehension and anguish that it wasn’t the right setting for her. We had the lock downs, and major surgery… she was home more than she was school.
But my little boy, my little NICU baby. My little ginger fox. The baby that with every one of my tears, was a breath that you was fighting for. How are we here Parker-James?
You’ve over NICU, multiple infections in your first year of being here, your breastfeeding journey lasted 20 months, which was possibly my favourite memory. You’ve grown out of your shell recently and we’ve had the cherished pleasure of watching you explore the world in roam for another shell to claim as your own, but that too will be outgrown, and no longer fit as require as you grow.
As much as I’m sad, that this chapter of my motherhood has come to an end. I’m excited for the chapter of being a mum to 3 school children starts.
I can’t wait to see you face, as it beams with pride when you can write your name. Or when you bring your first phonic book home. A book that you call your own, instead of pinching your brother and sister’s on the sly. I know you’ll be immensely proud when you pick your first reading book and I then have 3 stories a night to listen too, just like the 3 of you use to listen to mummy.
It won’t be long until we’re singing you’re favourite nursery rhyme which will now consist of, 3 little ducks went school one day, over the hill and far away.
To learn and develop through play is incredibly valuable for children, and it’s no different for those with special needs.
Since Livy’s Cochlear Implant surgery, and going through the speech and language rehabilitation that comes after, I’ve come to realise that through play, it can in fact support the specific difficulties a child might have.
Like Livy who has a duel sensory impairment due to hearing and visual loss, play can help strengthen her other senses which in turn will help her navigate and explore the world.
Livy has been enjoying exploring this brilliant multi use Wooden And Counting Play set. We have used this for encouraging independence in counting. She has enjoyed signing and sounding out the colours of the shapes and the coloured counters are helping her understand number values in a different format to just seeing the number. Under the shapes are beautiful bright, coloured illustrations that spark curiosity into what they are, which helps towards working on Livy’s preferred method of communication; total communication approach’ which is use of speech, sign and symbols.
‘Educational, colourful and beautifully crafted from premium wood, our shape-sorting and counting playset will give your little one hours of entertainment. Sorting puzzles can really help the development of creativity and logical thinking in children, and the selection of rings, shape and number blocks on a sturdy, robust base will help promote hand-eye coordination, stimulate sensory development, and cultivate shape and colour recognition, all whilst having fun.’
It’s important to remember to focus on what your child’s strengths are, rather then focus on what they cannot. I try to remember although livy has special needs, and may need a little support, but to ensure she has the freedom to decide what to play and how to go about it.
Child led is best in Livy’s case, what do you your children enjoy?
The benefits of sensory play for children with special needs:
• Cognitive development: understanding how things work, comparing the characteristics of different materials
• Social skills: Children can watch how others play, copy and share ideas
• Self-awareness: Children learn what materials they like and don’t like, increasing their understanding of themselves
• Physical development: Sensory activities can be a good workout for the small muscles in their hands and fingers (known as fine motor control)
• Emotional development: Play can be a good release for energy or stress, and means children can also express positive feelings
• Communication skills: Whatever their level of language development, children can express their reactions to the materials, e.g. showing excitement at splashing water, or surprise when they experience something new.
No assembly required – Your playset will arrive ready to go, so your little one can start playing straight away. The set comes with 1 sorting board, 55 rings, 10 number blocks, 10 shape blocks and 10 stacker rods. The perfectly-sized pieces have been lovingly designed for little hands, ready for hours of play.
Quality wooden construction – Crafted from premium natural wood in bright, modern and engaging colours, our high-quality construction ensures durability to withstand energetic play – whether in your home, or out and about.
Education, learning and skill development – Fascinating continuous motion for plenty of dynamic playtime; stimulating sensory development, encouraging hand-eye coordination, and promoting colour, number and shape recognition.
Great gift – Perfect as an educational and learning toy for both boys and girls, and suitable for a wide age group, our playset is easy to transport and makes a great birthday or Christmas gift.
Child-safe – Our playset has been designed to enrich your child’s skills in the safest possible way. CE tested, made using non-toxic paint, and a smooth-edged design makes it safe to play with – day after day.
Your hand sways in perfect rhythm in mine. The warmth of the July breeze was a gentle reminder to wake up from my anxious pondering thoughts. I looked down at your white blonde curls, bouncing with every step you took. You’re blissfully unaware. Your Dad looked tense as were about to make a big decision for you, a decision you have to forgive us on, as we cannot ask you so.
We can only hope, it’s the right one for you.
Giving a cochlear implant to a child who has had extremely limited access to sound is a extremely sensitive and I’ve gathered controversial subject within the community.
The surgeons advise against implanting children after the age of four, as the likelihood of being able to interpret and make use of the sound is diminished. Whilst Dad and I firmly stood by wanting to wait until you was old enough to know what you wanted, but time was running out and irreversibly so was the opportunity…
We have to choose for you.
For the last 4 years you’ve inhabited a different world to us. And you have no idea just how incredibly special that you are, just the way you are.
But I guess that’s a biased opinion.
Since birth we knew that you was deaf, a world of blissful silence. We had early intervention of hearing devices, from 3 months old which was essential to your future.
Much like a wild flower, We’ve seen you adapt to your surroundings and watch you flourish in all your beauty.
And for every time someone says to me, “It’s such a shame, what she goes through” in response to the news that you are deaf, I’ve always wondered if they’re blind to all the things YOU CAN DO!
We absorb your happiness as you talk through the use of your hands, the pride shines out of you like a flower reaching the sun’s golden glow. You babble with so much to tell and so much to say. Seeing how happy you are to use your voice and make it be known is mesmerising. But we recently started to realise your quench for more language to be known has overtaken the speed which I can learn and teach you.
Throughout the years, I’ve always said there’s nothing on this earth I would give, in exchange to change anything about you. I admire the fact you’ve grown in places that people never assumed you would. I love the uncertainty that you bring.
Whilst you’ll always be deaf. We now have a opportunity, that will open doors of fields and meadows for you to roam and chase the setting of the sun. There’s a chance that one day, you may be able to communicate purely with your voice, but that’s your choice if you wish to communicate that way.
I would like to say, the decision to give you this opportunity of a lifetime wasn’t easy. I can’t lie, it was, we had no second thoughts.
But the decision to be made for you wasn’t easy, whether it be one you would be thankful for, but to me, the idea of you being put to sleep was the hardest part to make.
Deep down, the feeling of making a decision for someone which was one that could change their life was impossible, the type of decision that was on a loop of whether you was and was not doing the right thing for your child. Like your swaying back and forth on a rocking chair and there was no medium or balance as it continued to sway to and from.
No parent has ever taken this decision lightly and carried each baggage of pros and cons on their shoulders and I’m sure at one point in their journey, they became weighed down in the depths of their responsibility to make this decision.
Like most surgeries, what if it doesn’t work? What if you become poorly? What if the side effects outweighs the goodness? What if you hate hearing new sounds? What if you feel you no longer fit anywhere? What if life becomes overwhelming?
But what if you could finally hear your name being called? Do you like your name? What if you could hear the birds tweeting in the morning? What if you can hear the waves of the ocean lap across the shore? What if you can hear the rain in the car, do you like the sound as much as you like to see the rain? What if you can hear the squeals of delight whilst playing with your siblings? What if you can hear your mummy tell you she loves you as well as using her hands…
Our promise to you is we won’t stop signing with you, and I refuse to allow any professional stop this. I refuse to believe some of your professionals, that believe we have to choose between raising you as a ‘talking’ or signing child.
Signing hasn’t always come naturally, but like most things in this world, it takes time. And time brings practice and practice makes perfect… there’s been moments of frustration and anger where signing just isn’t telling us what you want, need or feel.
And the moments you insist on demand to be carried to snuggle your face into my neck to block out the world of stares, I cannot communicate with you. So for as long as you need to be held closely. For the moments you need to be held and carried for comfort and grounding. For the times you need reassurance. I will pick you up and carry you to where you want.
What ever you decide is your preferred method of communicating with me, I’ll never stop learning and talking your language.
We’ve made the decision for you because we feel it’s the best for you and your future.
Darling your surgery is 8.10.2020, When the world stopped still, and everybody stayed home.
I don’t know why I never posted this before. But I guess I had reasons, I never explored…
Livy has had her glasses for over a week now, and we cannot believe how well she has taken to her another new addition!
Livy has a convergent squint, a form of strabismus in which one of her eyes deviate inward she also has a horizontal nystagmus, a condition where the eyes move rapidly and uncontrollably. In addition to Nystagmus people can also have movements of: up and down (vertical nystagmus) in a circle (rotary nystagmus). Livy’s conditions only affect her right eye.
Her vision in the right eye is 6/60 which is quite a significant loss and 6/18 in her left.
Distance acuity is the measurement taken when we read an eye-chart on a wall when we visit an eye specialist. The measurement is expressed as a fraction. The numerator (top figure) represents the measuring distance and the denominator (bottom figure) represents the size of the letter that can be identified at that distance. The smaller the fraction, the worse the vision. So, an acuity of 6/48 is worse than an acuity of 6/18.
I have been spending some time trying to understand the depths of Livy’s visual difficulties. I understand her vision in the left eye is classified as low vision. And her right eye is actually perceived to be legal blindness.
It’s incredible she has gone for so long with such minimal vision and whilst she’s no stranger to presenting with challenging behaviours, I have created a bigger picture now. How disorienting and frustrating it must be with low vision and no hearing.
Yesterday she had a check up with her ophthalmologist team to ensure the glasses were correctly fitted and whether her right eye was responding well.
Her eye is definitely straightening with the help of the glasses and she sat throughout the test really well! She may need patching in a couple of months time.
However, she is doing incredible, adapting to the glasses and there’s strong hope within the team that her eyes can be taken care off locally rather than a referral to Leicester Hospital.
We noticed yesterday, the team was in pink tunics, this made such a significant impact on Livy’s medical related trauma induced anxiety! She was only hesitant for a short time before forming into the bouncing ball of energy that we all know and love about her.
I never knew I would end up being so proud or passionate about something that I use to believe was a limitation that would hold me captive all my life.
I use to somewhat fear the ‘social identity’, the power someone has to define you and put you in a category.
Yet, this has done a complete U-turn. My limitation, which I now see as motivation towards succeeding a challenge I find myself in, has been a source of both pride and frustration…
It’s moving looking back at how I saw my hearing loss as a limitation, hairstyles and extensions covered my ears, as if I was barricading them from the stares of the outside world.
The two pale peachy aids, I begrudgingly despised. I hated how I was now identified by a label. The moment I was handed those aids, came with a baggage of emotions, or perhaps a burden, I hated I was disabled.
In hindsight, despite your diagnosis being disabled or not, you have the right to define what you are yourself.
Never feel bad about twisting some expectations you hold of yourself as defined, you have every power to resist or challenge your own mindset.
Since Covid19 gripped the world, and we’ve become a masked society, the Hard of hearing community are needing their voices heard and their needs to be known. Due to the safety measures in place, this has left a devastating and isolating impact on the community.
I have recently exceeded my own limitations, with PRIDE. I now wear badges that proudly help others to identify my needs and the barriers in communication I face as well as my Daughter, Livy.
Because, now we shouldn’t have to sacrifice, We shouldn’t have to feel awkward or stand in anticipation at tills of someone talking to us and the anxiety of appearing dumb.
I have in many ways overcome the challenges of hearing loss and developed more or less functional coping strategies.
I still feel the frustration that this path has not always been easy, especially when being challenged at doors of shops about why my daughter needs a mask free mummy to communicate with despite her screaming and taking all efforts to remove the mask I’ve been forced to wear although legally exempt, about being perceived as a careless rule breaker, who doesn’t put the effort in protecting their community.
I am proud to now identify my needs and Livy’s. I hope with my approach others can feel confident to do so too.
There’s been a lot happening for this little one. Livy has completed a gruelling disimpaction programme, a psychologist assessment, cochlear audiology and speech and language rehabilitation therapy appointment.
Yet, here she is being her best authentic happy self. But that’s not to say she’s not had her days where she’s emotionally and mentally drained from her hospital experiences.
Most recently, Livy has had a referral made to Great Ormand Street Hospital, London, to the Developmental Vision Service.
Livy has, 6/60 vision in her right eye and 6/18 vision in her left eye. She also has amblyopia and esotropia in her right eye. Which you can see quite clearly in this photo.
There has been concerns regarding if Livy has a underlying neurodevelopmental difficulty that may be linked to her current difficulties.
A DEVELOPMENTAL VISION EVALUATION INCLUDES:
Visual Perceptual Testing
Visual Integration Testing
Baseline Reading Testing
This evaluation will determine the presence of:
Amblyopia (Lazy Eye) – which Livy is already diagnosed with. Convergence Insufficiency (CI) & Double Vision See-Sick Syndrome (Motion Sickness) Strabismus (Cross or Turned Eye) Vision-Related Reading/Learning Problem
We are unsure what to expect, and experiencing this new path of Livy’s journey alongside her. But what we do know is, we’re walking side by side into an incredible hospital full of potential and possibilities towards what ever the results may be for Livy.
It’s almost, somewhat captivating seeing the free spirited happiness radiating from the children, that freely explore across the golden sandy shore.
As we as parents sit a little further back absorbing their rays like a warm summers day.
Their legs are almost giddy, reminding me of bambi, as they try to run along the sand. The sea salted, crisp fresh air, teased Livy’s blonde white curls. Blowing her ringlets with the airs song of the sea. You can almost taste the salt from the heavy air, I’m unsure if that’s the sea or particles of someone’s supper of fish and chips, salted and covered in vinegar. A comforting smell and a taste that always goes down pleasantly well.
Things haven’t been easy for the best of us, our new normality has taken others harder to adjust too. Whilst others have this superhuman ability to adapt and adjust to what ever faces them. And for that, I applaud every single strength that you have.
4 Months with a complexed health and clinically extremely vulnerable yet most beautifully delicate, strong willed and abled child, wasn’t all that easy. We broke down together, we smiled and laughed together. We held one another together. We took on a new way of living together and we took on challenges we had no idea how to conquer them together. But together, we did ok together. And we saw our parting, end of shielding and back to normality, reaching closer together.
My anxiety to return to normality, like the sapphire tinted waves of the sea, rippling like a pleated blanket across the shore, was hard to ignore. The overwhelming thoughts consumed my mind like the squabbling angered seagulls, circling overhead a discarded, half eaten supper of crispy glistening, battered fish. My heart sank to the bottom of the depths, with a mixture of pride and sadness as our time came to parting, a girl with eyes that sparkled like the ocean as the ripples touched the sun, I was forced to wave her goodbye until she faded of of sight, into the doors of the school. A moment of watching a boat sail its independent journey into horizon, where the sun and water meet. A place of paradise and dreams, a place where you can grow, learn to express yourself and be who you wish to be.
Isn’t it funny, how inspiring sitting on the beach can be. In its truest form of nature, as the call of the waves reaches out to you and it’s quite impossible to resist it reaching out to connect you, inspire you, to remember who you are and why you’ve always loved to write.
I know for most people, Christmas is the most wonderful time of the year. Unpopular opinion, but I believe as an Autumn baby, Autumn is my most wonderful time of the year.
There’s something specially welcoming when summer falls, as the sun allows itself to set back, which enhances natures truest form of glistening beauty. Just like spring when flowers bloom, berries rise, sparkling in the autumnal morning sunrise against the mist of the hills. The buoyant warmth of the scarlet orange and golden leafs dance between the falling of the tree to blanket the once dull grey pavement, we can hear and feel the crunch and rustle under our feet. You find yourself inhaling more of the crisp brisk breeze, and feeling thankful more than you ever have done for a lungs worth of freshness of the air since COVID19 Lockdown. Often the damp woody smoked aroma floats, a smell that lingers over the woodland, a warming scent of tenderness. Even in the autumn rain, there’s beauty in the greying clouds as the raindrops gently glitters amongst the golden hues.
But the one thing I genuinely get excited for, not just the autumnal fashion but the truest identity marker of autumn is, Pumpkins.
Pumpkin picking, glowing pumpkins that line a pathway of doors, Pumpkin Spiced Lattes, Pumpkin pies and Pumpkin soups.
During the Pandemic of COVID, I think it’s fair to say the awareness of importance of shopping and supporting local produce has risen. And we found ourselves searching for a local pumpkin patch to take the children too, instead of rushing out to the supermarket as a last minute resort for a fanatical purchase of pumpkins!
We came across Overstone Grange Farm, which is a working family farm in Northampton, just short of a 20 minute drive. Upon arrival we are met with smiling faces guiding us to a available parking space. Our first visit was 4th October, which was a day after the ‘Pick your own’ experience opened to public. It was a rainy day, with a heavily thick blanket of grey fluffy clouds that floated above. Due to being a working farm, your wellies are a saviour from the muddy grounds and wet puddles. But as you all know, no amount of rainfall or muddy adventures would ever stop us!
COVID safety guidelines are all in place approaching the wheel barrows, you have to check in on your NHS app, with hand sanitisers available if you’ve forgotten your own. The wheel barrows in return from fellow pumpkin seekers are washed down and disinfectant, ready for the new hands of seekers. All staff are incredibly friendly and welcoming. Greeting children and asking them questions towards their visit. Within a blink of an eye, our youngest Parker had dashed towards the enticing field, array of orange hues.
The Pumpkin Patch is laid out over a large space of field. Even for an adult it was overwhelmingly exciting to search across for the perfect pumpkin. Not to mention the fact it was incredibly ‘insta’ worthy. The children enjoyed every aspect of searching the field for their chosen one. The twisting twines are bound to give you a little trip or two if you’re not careful causing outburst of giggles from the trio. And of course out of all of us, our Luka-James was the first to fall in the mud, squealing of hysterical laughter. Isn’t that exactly what Family Sunday’s are about! The trials and tribulations of a family day out.
The 5 acres of field boosts 9 different varieties of pumpkins and squashes to choose from. There’s enough pumpkins to satisfy your hearts content. And in my own opinion, I think they’re incredibly reasonably priced too!
But what I really did find incredibly touching was the Farm has thought of our SEN community. They’ve mindfully and kindly allocated SEN/Quiet time slots, there’s no need to book, but they’ve asked for the public to be respectful of these timings and if you can attend at the appropriate time. On the 4th October, we attended the SEN allocated slot of our daughter. Who has a complexity of SENDs, along with deafness. She can become very overwhelmed and distressed in the hustle of an overcrowded environment. Not only that she cannot focus on lip reading and her only way of expressing herself and her feelings of anxiety and fear is through screaming or crying. Which then can mean the public look at us and this heightens the behaviour more.
On arrival there was just 4 families, due to the space of fields we was able to successfully avoid the other families and go about our adventure without any hiccups.
Not only, to our surprise, there is more to your day than just Pumkin picking. There is a maze of hay bales, which then lead on to a mini assault course. Which each of the trio enjoyed tackling, and dare I say, myself and dad released our inner child and fought against one another at it! In this case, we got muddier than ever and the extra wash load was worth every single laughter from our family.
If your child has sensory seeking behaviours, or enjoys exploring textures, the farm has every single need of those covered, from the mud and puddles to the pumpkins, hay bales and tractor wheels full of sand with buckets and spades provided!! (Bring your own hand sanitiser if you want to keep Covid safe)
Now let’s talk refreshments, it was a chilly rainy day, we all lean towards hot drinks to warm ourselves up. The refreshments offerings was wide and all sounded absolutely delicious. The children had chocolate baby chinos, white hot chocolate with coconut syrup for dad and a caramel hot chocolate for myself, not forgetting a ghost cookie for the children and it all came to a reasonable price of just under £13 and resulted in 5 empty cups, warm belly’s with smiles! In the words of Luka-James, ‘it was actually banging’.
The farm has free parking and free entry, which I was incredibly shocked by, from the experience we had, we would have happily paid parking, knowing the funds are put back into the farm. But this means the accessibility for all families across the community who may, or may not have been harshly affected by the effects of COVID, can enjoy and create memories at this wonderful family farm. The pumpkins are so reasonably priced, there’s a size and price that can cater to all. I found this aspect absolutely beautifully thought of, whether it was intentional or not.
Payments, the farm take card as well as cash, so fear not if you, like me always forget to carry your purse and solely rely on Apple Pay! I really must make this my New Year’s Goal, REMEMBER MY PURSE!
The Overstone’s family are very welcoming, upon paying for our pumpkins the staff are cheerfully chatty which make your visit even more delightful and leaves you wanting to return. I explained about my daughters deafness on two occasions and the lady on refreshments really went above and beyond to try to communicate with Livy, as a parent of SEN, I’m sure this simple act of kindness can touch a fair few hearts. Even the lady on payments was just as lovely and really took her time with Livy who was bouncing of excitement and waving, the lady engaged all children to select the pumpkins into the holes that have allocated prices. Talking about Halloween and what they’ll be doing. Meanwhile they also have a charity fundraiser going on, just guess the weight of the huge pumpkin! Dad being the overly competitive sports man he is, was lifting the pumpkin and was taking a good sheer amount of deliberating time to guess. I’m sure his ego will be dented if he loses haha!!
We really did have the best time exploring some place new. And it certainly didn’t disappoint the trio of high expectations of days out! We will most definitely be back for the Christmas Tree Experience. And No doubt be back for another Pumpkin experience in the next coming weeks! It was honesty that good!
As stated on their website, there are safety measures you need to take and be mindful of when visiting.
‘The pumpkin patch is a field! Please come prepared for mud and uneven ground and take care. We are a working farm. Please look out for tractors, trailers etc and do not wander the farm. it could be dangerous.’
I think it’s easy to forget just how intense hospital appointments, examinations or assessments can be for young children.
White daunting clinical rooms, medical professionals look barely recognisable due to COVID19 PPE, the once smiley welcoming faces are covered by blue masks. The buzz and hustle of the hospital corridors, patients whizz past wheeled in beds and having to be prompted to stay to the left side keep a distance, all whilst not being able to grasp an understanding why there’s so much change. No longer are there colourful enticing play areas, all stacked up with caution signs a far cry from the social distraction there use to be, now there is nothing to keep young children’s anxiety at bay.
The concentration, bravery from uncertainty and expectation required from a child with deafness and non verbal is exhausting.
Just like the gentle waves of our happy place, it was calling in our names for a shore side adventure.
From my own experience, frequent visits as a child to hospital requiring tests, travelling to unknown and unfamiliar hospitals, blood tests to operations, watching faces of your parents fall as if they’ve just watched their entire house be gobbled down by a sink hole to the earths core, when they’re delivered a diagnosis’ or unexpected news… that in its self can leave a scar of emotional and anxious trauma.
I’ve always wondered, Livy being unable to have a great and consistent access to sound, being unable to communicate what she’s experiencing feeling wise, is she scared, anxious or nervous? Yet as a parent I suppose we can almost sense the changing of feelings that radiate from our children, the emotions can come in any form regardless if the child is aware or not being able to understand what they’re experiencing emotion wise. Anger aggression, uncontrollably crying, restraining or giggling from excitement and happiness.
Livy lacks so much control over her life and the environment she’s in, being able to roam freely, feeling the sand beneath her toes and let her soul decide if she takes a turn into the the sea or explore the depths of digging in the sand. Collecting as many rocks and seashells as her heart desires. Or just how much more the boot of the car can take, I’m pretty sure we’ve collected enough sand and seashell debris to make the sandpit at Wicksteed Park green with envy!
Obviously there’s myself close by, following her looking as if my own mind’s sat nav has gone awol doing swoops and loops after my daughter, stops and starts, dashing and immediate halts. But I wouldn’t change it for the world as I absorb the warmth of her authentic smile and crazy blonde curls, each ringlet taking a different direction of their own amongst the salty winds caress.
When your child visits a healthcare setting, the medical professional is trained to recognise triggers in children and prevent or reduce healthcare induced anxiety and trauma. By giving your child the choice, which alternatively gives the child the feeling of empowerment in a powerless, unknown environment. Using a agenda so the child knows what to expect at the time of their visit or future visits and what is expected of the child, are they having blood tests? Do they need to cooperate in order for treatment to work? By highlighting strengths and reframing weaknesses provides resilience, and lastly being able to recognise when emotional support is needed, normalise the child’s common fears and anxiety in a situation. As a parent I’ve slowly and gradually learnt to not apologise for the way Livy reacts in these situations. And nine times out of ten, the professional has reassured me it is a common reaction and totally normal.
C A R E – Choices, Agenda, Resilience and Emotional support.
Yet, with Livy having a barrier that connects her with the hearing world and non disabled society. I cannot begin to imagine the sense of helplessness when she’s confronted with the surroundings of a hospital. She must begin to bubble with fear like a over boiling pan of pasta on the stove and anxiety flushes through her little body as she remembers pain associated by historical tests. Due to Livy’s developmental delay, and severely significant speech and language delays, cognitive thinking delays, Livy cannot communicate her needs and feelings through words so she communicates through her behaviour and body language. Feeling powerless and out of control, of what little control Livy has in her day to day life, it goes without saying she presents emotional responses in appointments. As a parent it’s down to us too, to anticipate her reactions and comfort her before she’s emotionally erratic.
At times these emotional responses have had a significant delay in audiology assessments which will impact finding important results and delay seeking further medical treatment like being delayed for a referral of participation in Cochlear Implant Assessments. By no fault of her own, she must be allowed time to bond and reduce her anxiety in order to be able to trust the person and in return she cooperates in what is expected of her.
Although we try to sign alongside speech and with use of PECs or visual photographs, Livy still struggles to anticipate what is expected of her and what the day may bring. And I always wonder if she forms a lump in her throat from anxiety, when she steps into the car whilst wondering where will her journey take her, if it’s not a beach!
All three children adore the outdoors and what nature has to offer. There’s something incredibly comforting as a parent knowing that they don’t crave adrenaline from rollercoasters or expensive trips out. Pop them to the beach and we can spend endless of hours creating new memories, new games that create continuous excitement. Adrenaline comes in all forms, whilst in nature, you can find tree swinging, rock climbing, finding the biggest Conkers, who can make the biggest splash in the puddle, whilst we may be crazy for adventuring in the pouring rain or swimming in the sea as the sun warms our skin. It’s clear this fulfils all of Livy’s sensory seeking needs and she’s most content.
As were approaching another operation for Livy, a life changing one, for cochlear implants, I can almost taste the fear of anticipation.
Holding your child close to your body whilst others restrained her legs, arms and neck so that the anaesthetist could place a mask over her face to induce a sleep. The sheer sudden panic and sharp look from widened eyes, as she fought for her life to push this mask away… nobody could communicate to her what the mask was fire. Nobody could prepare her for what was to come. And she couldn’t ask or express her thoughts and feeling either… I could see and feel that she felt in danger as her body should have been limp from inhaling the gas, she got stronger as she fought, until the gas eventually worked.
Unlike many others, Livy cannot understand or grasp the concept of pre surgical preparations. She doesn’t have the ability to ask questions to ease her sudden feelings. She won’t be able to digest the information on how it will feel to have a mask placed over her face, and that as the effects of the anaesthetic takes place you will become drowsy. I cannot comprehend how incredibly scary this must be for her.
But for now, all I can hope for is that Vitamin sea continues to help Livy heal and trust in the calmness of nature.
To our precious little fox, on your third Birthday.
The fizz and excitement was unreal, the morning I popped my surgical socks and gown on. Although I’d been here twice before, the butterflies twist and danced in my belly, or that was your gentle kick of reminder that today was the day, I’d finally hold you in my arms. I could finally study your sweet delicate features whilst inhaling that tender newborn essence.
Nothing quite prepared us for the situation that had risen, as quick as a bolt of lightening, you was taken. It took 7 hours before I could anxiously peer into four glass panels, amongst the wires and bleeps of machines was a beautiful little boy.
My little foxy, those days were submerged in worry and pain. For each day we sat in the neonatal unit we watched nurses and doctors tend to your needs, as I watched on helplessly and hopefully. It dawned on me as each hour passed by, was a hour you fought for your precious life.
But here you are, so strong and full. I don’t know where or when the years have flown by. You’ve started to talk and express your interests of all things diggers and fire trucks, with a splash of Spider-Man for good measure. With each day you’ve lost your baby face as you grow into a little independent boy, you’ve successfully toilet trained taking to it so spontaneously… even if it’s meant I’ve lost a couple of new loo rolls for flushing entertainment purposes!
You’ve managed to clone your Father’s looks along with his attitude. I’m uncertain exactly where, if any, I got a look in with your genes! Your feisty little temper and little stroppy whines, never seem to be over looked from your tender loving nature. Your smile and growing personality can light the way in anyone’s darkened tunnel.
You bring so much joy around you.
It seems like you’ve completely missed out on the baby phrase as you waved goodbye to Peter Rabbit and welcome Marvel heroes, just to be like your Big Brother Luka. I’m not sure how long I’ve got, until your foxy no more. As you choose to be known as Spider-Man or is it iron man? Your fuzzy little foxy that kept you company, in your four glass panelled incubator. I often find him under your bed, looking so hopelessly lonely as Spider-Man teddy has taken the prized placement upon your pillow. Another little reminder you’re growing up so quickly and I can’t quite believe it so.
I absorb all the warmth and pride when you discover something new, did you jump twice on the spot, or kick a ball into the net. Your face radiates the most beautifully proud smile. You’re constantly asking questions with a burning desire to digest all the answers. You love the beach and have become quite a sea bug. Nothing fazes you, unless you’re in clothes that’s wet! With a preferred nakedness you confidently stroll across the beach to jump and swim around! You love to pick up rubbish and pop it in a bin.
I struggle to bare the thought of my precious little boy going to big boy school. The very last of my babies setting of on the path to independence. And I can’t wait to see you thrive and enjoy every moment of being at school with your older siblings. And as much as I know you three will keep each other safe and happy, my heart hurts a little knowing you’re all nearly grown out of mummy’s lap.
And just one day I’ll be told to stop squishing your big toe, you’ll always be my little baby, whether you end up taller than me or not!