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!
We last left you with the amazing news of Livy being put forward to the Multidisciplinary Team Meeting following from her most recent appointment where both of Livy’s ears, hearing test results met the criteria for the Cochlear Implants along with the functionality assessment.
We have some further exciting news to share with you…
LIVY MEETS THE SURGEON 18th AUGUST!
I won’t lie, some slight anxious and anticipation has started to trickle in. But I know this is what’s best for Livy’s future. And that far out weighs my anxiety over the surgery aspect.
As always, thank you for supporting, following and messaging support on Livy’s journey. We will update you again once we’ve attended the surgeon and what the next steps are! We had no idea how quickly this would come around!
Today we attended Addenbrookes, for the final stage of the Cochlear Implant Assessment process.
After 3 variations of hearing tests, firstly a Tympanometry is performed to see how flexible the ear drum is, this was good. Then Livy had a Bone Conduction test, a small device is placed just behind the ear and secured with a cotton band, the device passes sound directly to the inner ear through the bones in livy’s head, which can help identify which part of the ear isn’t working. Livy did not respond to the sounds played, but she responded to the vibrations. Lastly, she had a Visual and Play audiometry.
Livy’s level of loss was a lot less, and to be sure the audiologists had the correct readings she gave a rather defiant Livy a break before continuing the same test again for a more accurate result.
Livy’s speech rehabilitation therapist was present and completed a functionality test. In typical Livy style she was resilient, stubborn yet comical with her gestures and faces. She wasn’t making it easy for professionals.
However, we are delighted to inform you all…
SHE MEETS THE CRITERIA FOR COCHLEAR IMPLANTS!
Livy’s case will be taken to Multi-Disciplinary Team meeting (MDT), they will then make a recommendation as to whether a cochlear implant is suitable for Livy, this takes in consideration her levels of hearing loss, functionality and lifestyle with her hearing aids and the result of what the MRI shows, this is to ensure she is compatible for surgery and what malfunction is responsible for her hearing loss type.
If compatible for the implantation, we will then meet the surgeon and the pre-op assessment begins.
We’re not out of the woods, yet. But this is extremely positive for Livy!
“ I have been wondering about 3 words you might use to describe A and things you admire about A” – Educational psychologist.
This chapter explores the depths of the trials and tribulations of getting our daughter, livy a EHC Plan. Due to Livy’s extremely rare genetic syndrome and complex needs, as parents we feel Livy’s special educational and health needs would be best suited to a specialised educational setting with expertise.
“The purpose of an EHCPis: to make special educational provision to meet the SEN of a child or young person; so as to secure the best possible outcomes for them across education, health and social care, and to prepare them for adulthood as they grow.
I remember the meeting like yesterday, it was a extremely warm autumn morning, of an anticipated meeting with all the professionals in my daughters care. Eight of us cramped into a tiny audiology booth, like a tin of sardines baking. It was then, I felt brave enough to be the voice for my daughter and bring the idea up of Livy needing a EHC plan. As well as voicing my desire for her choice of schooling.
The undermining tone of the response I received as if I was foolish to even think my daughter needed a plan was overwhelming, it takes a lot of courage to stand up in a small room full of medical and educational professionals. Whilst I appreciate they’ve continued their studies for countless of years and the experience they hold, sometimes, this doesn’t mean they know specifically what’s best for your child. I was made to feel that I’d already set Livy up to fail in my mind they all truly believed in 4 months time She would catch up…
This wasn’t the case, I knew my daughter was behind and I could sense she was struggling to progress with the current level of loss of hearing and the current support provided. Everyone agreed in that meeting that my daughter would not need a plan, she would be perfectly abled in a mainstream school. The male professional’s speech came across heavily over convincing, her father crossed paths leaving me held at ransom with my feelings.
From that moment on it was me and my beliefs of wanting the best for Livy against the professionals and her Dad. Why couldn’t they see what I could? I spent months forcing myself to believe I was wrong and I was the problem…
The build up to Christmas is my favourite part of the year, working in retail we feel the Christmas spirit for weeks. Yet this was the year I just couldn’t feel anything but a worry like pain. Anxiety much like poison. Slowly crawled through my system and there was no antidote to counteract the chaos unfolding in my mind. I forced myself to smile whilst wrapping customer’s gifts to their loved ones, as if i was packing away each racing thought one at a time, make believing if I forced myself enough, that warm fuzzy feeling of excitement would ignite deep down, somewhere. In between asking customers how they was spending their holidays, I had become a woman obsessed on my breaks, researching ways to get a EHC Plan without a professional referral. It was me against the time.
And time is never on your side when you need it most.
I had fortunately gained a place for my daughter to attend a pre school session within a specialist educational setting. It was only then I realised I was not alone. I met other mum’s who were in a position like myself, some more supported than others. The small group my daughter was placed with, I finally felt acceptance and no one stared holes into my daughter with judging looks. The two ladies V and M, who I won’t name, are two incredible ladies. Their smiles radiate warmth the moment you enter the room. Im almost certain they can read our child’s minds and their processing thoughts, like text book. They soon learnt Livy’s strengths and weaknesses. She flourished and embraced signing in this setting. Livy learnt skills she wasn’t able to in any other setting, she was understanding of taking turns and began to fall into their routine. I truly cherished the full hour and half every Tuesday morning. Like the sun’s rays I absorbed every smile, every giggle even the stubbornness from my changing child, the character that was blossoming and bloomed within such a few short sessions. I don’t believe V and M know just how influential they are on parents. I learnt coping mechanisms to handle my daughters challenging behaviours, I realised the strength I never thought I had and they gave me an insight into my daughters world that I never anticipated. The pre school is a beautiful place to be, the range of diversity and characters blend spontaneously. I hope the school continue to provide the sessions to the community, because it’s truly an amazing opportunity for parents and children alike to bond and support one another in a safe, like minded environment.
I applied instantly, after an agonising debate with myself, after all Livy has been deaf from birth, throughout her short 4 years on earth she has shown complexity to her educational, health and care needs. These have been known, as it’s not something Livy can shy away, for a significant amount of time. After that meeting in September, months considering if it was me with the problem, I realised no professional would be making a request, so from 24th January I put in a parental request for an assessment. I thought long and hard planning on how I could sell my side of the story. How I could summarise the depths of my daughter’s strengths and struggles on a piece of paper. This paper became the vital piece of my puzzle, something that if lost, the entire puzzle would never be. I emailed directly to the local authorities Department expressing my sincere concern for my daughter (something I highly recommend doing, to ensure your child’s name is not heard but known), as well as filling in the brief very short few questions online. I spent every spare moment, pondering over the words I had written, were they strong enough? Did they paint a true reflection of our everyday life? I knew the average, according to BBC, 50% of parental applications are turned down at the first hurdle, typically for the lack or wrong type of evidence. I had no Room for slip ups, no room for failure.
It was now or never.
I had little idea about what the EHC assessment was, nor did I realise that in order to be able to attend a specialist school, the children have to be referred. Until I attended this specialised pre school session, I wondered why I couldn’t find the special school on the council list when applying for a school. I tried the postcode. The school name. Beyond confused, I was soon supported in the applying process by the setting, you can tell every person who plays a vital role in that school genuinely wants to be the difference, and make a difference in a family’s and child’s life. It’s not just a school. Anyway, not all parents wish for their Children with an EHCP to go to a specialist setting, the plan provides provisions in order for children to access learning tailored to their SEN.
In my case I strongly feel Livy’s needs will be met at a specialist school, where she will flourish and her achievements will be celebrated at her own pace.
I was overjoyed when I got a response to say Alivia was going to be assessed. The impossible felt possible and the overbearing weight, slightly lifted from my shoulders. I felt I could sigh from relief, something I dared not release before.
Yet I should have known from that moment, it wasn’t going to be straight forward, I should have known, things don’t come easy for us. In somewhat way of twisted fate, what I didn’t anticipate was the long warped, unsupportive challenge that awaited me. With what felt only one professional body, was on my side. Ready to pick me up and forced me back out to battle with strong words of wisdom. A true reflection of what type of woman she is. Strong with a forceful approach.
I didn’t realise the depths of feelings I would sink to. Like the bottom of the nightmarish seabed. Where the Darkness surrounds you, the misty, restless war torn bed of sand full of the unknown. Deep down the tempestuous water is no longer beautifully majestic.
After the agreement of accepting to assess your child, in line with statutory timescales once an EHC assessment has been agreed it must take place within 10 weeks and the EHCP issued following the consultation has of no more than four weeks after that. The process should not take any longer than 20 weeks from the initial request therefore Livy’s (Alivia-Ellen’s) EHCP should, in any case, have been concluded by 12th June 2020…and yet we’re still waiting…
To say I was naive to begin with, is the biggest understatement going… I foolishly and genuinely believed this would be the break through that my daughter deserved, to have the access in all things she should be entitled to have access to in life, that she thoroughly deserves, and has been, evidently missing out from.
It wasn’t long before the the cracks, to cut through began to appear, from the lack of active engagement from the EHC team to myself as a parent. I felt I spent more time than needed to chase for updates frequently, there was numerous of delays in professionals completing the necessary assessments, which after much force, where I can only imagine I must have felt like a pest to the EHC team, yet no fumigation would get rid of me. I was there, still am here to stay.
24th April I’d reached my limit. It was 4 weeks from the deadline of all professionals submitting their evidence. Yet one vital piece of evidence, the last remaining piece of the jigsaw was still not submitted. I wrote a text to the case worker expressing my concerns for Livy A. The lack of communication and B. How negative this was going to impact my daughter’s case. C. How delayed this was.
I expressed how aware the deadline which expired nearly 4 weeks ago for submitting all information by professionals was required by 31st March. How increasingly concerned that the support isn’t in place for not only Alivia, but for parents to be able to support and prepare for Alivia’s transition since she’s unable to attend preschool which would be helping us. (DUE TO COVID19) In order to be able to understand, I needed clarification how professionals are continuing to undertake their statutory responsibilities for assessment during this period and to plan for Alivia’s transition to mainstream education.
It was after a string of text’s I got the final one I was hoping for, the case worker informed me the SEN Officer green lighted for all the evidence that the caseworker had successfully collected, to be gathered and presented to the panel, which was happening the following week. I was advised however, the panel may turn down the case due to the lack of evidence, and needed to wait for the final missing piece, which was the EP’s advice.
It was a risk where I was willing to put all my chips in. I was all in. I dislike any form of gambling, yet I could now see why players become addicted to adrenaline rush, your heart beat begins to pulsate at a speed you’ve not experienced since you ran in the Corby athletics 200M final. A puddle forms from the sweat of your palms, for the first and only time I have ever pleaded to God himself, out of desperation and disrepair, for this stake. I desperately for the first time of my life needed this only gamble to pay off.
It was an nauseating wait, the 6 days seemed a blur, which i know is an phrase so over worn, like your favourable pair of support pants. I don’t think I slept that well, and no amount of caffeinated drinks was seeing me through my day’s. I don’t drink, yet I found myself craving the weightless edge of a big bowl glass of Gin that took from the weighted feeling, which was starting to hold me ransom beneath the surface of the once comforting bubbly bath water. I held each child a little tighter, everyday. As if each hug was enough fuel to see me through my days. My children are the light of my sunrise. They radiate the golden orange hues, they mark the suns journey in the sky. From the moment they rise in the morning to the moment they fall to sleep at sunset. Their natural beauty, much like Mother Earth, fill you with gratitude, as does their individual quirky personalities. They rid you of your distractions and stop you in a trance as they perform a dance to paw patrols, adventure bays opening theme tune. You find yourself forgetting your worries, as a smile creeps across your face stealing the sadness and worry from your eyes. Your heartbeat steadily comes in sync with the calming beat of their heart. My children’s happiness is the antidote of the crippling anxiety. I found myself easing from the tidal wave of emotions from the EHCP’s exceptional pressure.
Thursday 30th April2020
“Hi, just to let you know that the Local Authority has agreed to issue Alivia with an EHC plan despite us not having EP advice…”
Relief wept over me, like a unsuspected wave catching you out, drenching you from top to toe, it was such a transitional emotion from the unpleasantness of the days, moments before. If it had a taste, it would be that puddly, salted buttery mouth- watering crunchy toast hitting the spot first thing in the morning. It smelt like a bed of freshly blossomed English roses, or maybe the smell of roast chicken, teasing our tastebuds after a chilly walk from a autumnal afternoon.
I received the text whilst on our daily adventurous walk with my daughter. It was a rainy afternoon but the sun was threatening to break through the clouds of rain. A rainbow was well on its way. I must have startled the grazing herd of cows on our trial round stanwick lakes. Livy, who as you can imagine doesn’t have a lot of accessibility to sounds pulled up the hood from the pram, to access the facial expressions of what was going on from her screeching Mother behind the wheels. I swept her out of the pram, spun her in a circle in the rain, as the rain drops poured down our faces, she squealed in delight, blissfully unaware of what had happened, but happy nether the less, nothing could pour down the smile and delight from us. I cannot imagine the reaction of the receiver of a call to announce they’d won the lottery. Because the way I felt at that very moment had got to be close.
The feeling of being on top of the world, soon vanished. 7th May, I found myself chasing for the EP’s advice followed by the 18th May. I was promised by the 1st June the EP should submit her advice. Which would then mean the case worker could fill in the gaps of the draft plan and I would be able to select the school I wished for Livy and get the ball rolling for the team to consult the special needs school. 1st June arrived and I was told that the EP would try to submit her advice by the Wednesday which would have been the 3rd. Which finally was received by the case worker. Almost 3 months late, the case worker had all her evidence to be able to send across the ‘draft’ plan. Unfortunately, we did not receive a copy of the draft EHCP until 17th June 2020.
Again, this entire process was exhausting, and I don’t mean the type of exhausting where you collapse in the arms of your bed, as you lay in a fluffy plump pillow which almost feels as if it’s stroking you into the land of nod, knowing a good sleep heals your problems. The type of mental exhaustion which leaves you emotionally drained, any slight feeling or comment left an overwhelming surge to cry, enough tears for my children to put their wellies on and go stomping in the salty tears that dropped from their Mother’s face. I struggled to get out of bed in the morning to the point it was my safe haven. A place I could curl into a ball and think myself invisible, with my responsibilities just outside of the door. Every small task, like washing the dishes seem impossible. Arranging medications, arranging medical appointments and admin just felt a battle. I became detached from myself, almost as if I was floating beside myself, each step I took didn’t seem real. My mental health was at stake. I could feel myself crumbling under the paramount pressure. I was just an ordinary Mother, doing her best to support her daughter’s future education which ultimately would be a significant impact on her future adult life. And yet here I was just an ordinary Mother feeling herself rotting away like the compost heap at the back of the garden.
If we open the door, we so very fear to allow anyone to have a glimpse into our life, maybe conversations wouldn’t be strained. Perhaps strangers, loved ones doctors and therapists could see into the depth of our fears. Just maybe, people could understand our pressures better. But by doing so, we open ourselves to the vulnerability.
Experiencing humans emotions can be the most beautiful to the ugliest. The sheer joy and happiness radiating like the warm caress of a summers sun’s ray. To the deadliest of storms, as the shores tremble in terror as its pounded by furious waves in the darkness of the night.
As we finally received the EHCP draft, it was rewarding to know I’d achieved something incredibly hard, to achieve and accomplish by yourself, as a parent, with no professional’s referral. Despite having to negotiate further to get the right type of provisioning, nobody could now take this EHCP away from my daughter. It provided a safety net and something which will stay with her until her adulthood. We held an online consultation meeting the next day with Livy’s Educational Audiologist and Teacher of the deaf, on 18th June where changes were agreed and this changes would be sent to the caseworker before the finalised plan is formed. We made our parental response and parental changes as requested by 24th June 2020. The four week consultation period should, therefore, have ended and the Final EHCP issued, naming Livy’s placement by 16th July 2020.
As it stands, it is currently 23rd July, we still have no named school, no named type of school and no finalised plan, to date.
It came as no surprise when we was told by text that our chosen preference of school, came back with ‘NO’. The text I received was extremely insensitive, “Response from Rowangate today is a ‘no’ as they have no spaces. Admin are awaiting a response from the Officer regarding next steps (i.e. Whether to consult with mainstream or not).”
Whilst I understand this may seem an extremely mandatory message to receive, I believe compassion can go a long way when you’re on the receiving end of the text. Your hopes and dreams are banished and once again, quoting from the Trolls movie ‘hello darkness my old friend’, it felt like the storm was brewing over once again…
Both of our preferred school and our local primary school have declined to offer a place and at this point, we have no indication of what school the local authority intends to name for Livy. It seems Livy has been doubly disadvantaged as she does not yet have any offer of a school.
The local authority has a statutory duty to offer any child (without an EHCP) who is four years old in April a school place for the term starting the following September by 16th April 2020. Livy appears to have fallen between both processes as she was awaiting a decision as to whether she was entitled to an EHC statutory assessment.
It saddens me that it feels very much that the local authority isn’t complying with my preference and naming the special needs school. The special needs school cannot simply refuse and turn down Livy due to simply ‘No spaces’. The school is suitable for her age, ability, aptitude and meets the SEN of my daughter. There is no reason to believe that her attendance would be incompatible which would negatively impact the efficiency of her educational learning. And I find it very hard to believe that it would be down to an inefficient use of resources. There is no reason to be able to demonstrate the above on how Rowangate could use the above criteria to refuse her admittance to the school. Which, I already have been advised has been in the purpose of ‘No Space’.
I believe, firmly, that my local village mainstream school would struggle to meet the SEN of my daughter. Not because of unwillingness, I have had countless of meetings with the SENCO and I met with the head mistress in the autumn term. They’ve been nothing but a breath of fresh air during this process. I am really lucky to have a son that already attends the school. He has flourished under their nurturing. The teachers care, for each and every one of their pupils. Their honesty and wanting to learn more about my daughter in order to see if they could provide for her needs, it’s been absolutely beautiful to have two ladies that are willing to fight my corner and themselves can see this route, could ultimately lead my daughter towards failure. The head mistress politely declined my daughter, giving the most detailed and professionally highlighted views as to how they would struggle and be unable to meet certain aspects of her plan. I cannot express how fast paced the Head of this school has been in her response, as not to delay the process anymore. (If you’re reading this thank you! And thank you to the lovely SENCO, you’re both a credit to the school, even to Livy’s potential 1-1 support worker, how you volunteered and wanted to take this challenge on, potentially being the difference to my daughters future education, is inspiring. There needs to be more people in this world like you.)
I really hope, In some way speaking out will help other Mother’s and families fight. You are your child’s voice. If you’re struggling to be heard. Then do the actions to be seen. I feel I have made it extremely clear during this process I wish for my child to attend a specialised educational setting. I feel the fact the school is full is of little relevance, I have been extremely proactive in seeking the support for my daughter, who is of multiple needs. My preference is not being listened too, I feel the professionalism of my daughter’s allocated professionals fail to recognise my daughter is not just deaf, they’ve not acknowledged Livy’s slight visual impairment and other complex medical needs, as well as physical characteristics which make it even harder for her to access education, as well as personal care. The draft plan states many of times Livy needs a lot of support from staff who have expertise, experience and relevant training. Livy needs to be in an environment where she can thrive and get the best education outcome for her, as this is her entitlement. Not only do I, but also her family and the teaching bodies at the mainstream school feel, expecting Livy to simply cope would be setting her up to fail. This could simply turn my vibrant beautiful child introverted, with a burden of low self esteem.
“…It is extremely hard to describe my daughter in just 3 words, however I feel she is vibrantly vivacious, fearlessly Free spirited and spontaneously challenging. I adore her unpredictable nature and she really is a beautiful little girl who can light a dim room with her Peggy toothed smile.
I admire A’s ability to show resilience to the point of stubbornness towards any difficulty presented to her. Her quirky personality captivates everyone in a room. A’s zest for life and enormous boundless energy make her brim of affection, attitude and curiosity. Her feistiness is almost humorous. She has an incredible vitality. I am immensely proud of the young person she is becoming and I cannot wait to see her flourish with the correct tailored support which empowers her needs.”
To the parents that are battling for their child/children with disabilities day in day out, who often are left exhausted leaving little time or energy to care for themselves, increasingly aware of the isolation that begins to suffocate around them.
I’ve never met a strong person with an easy past, whilst we’re left feeling helpless and questioning our ability. Often grappling with ourselves if we’re good enough, or doing good enough.
“The strongest people are not those who show strength in front of us but those who win battles we know nothing about.”
In the world of SENHOOD, Strength doesn’t come from what you can do, you do not need experience or a degree in biomedical or genetic science to be the best parent of your ability. You’ll often find you become to have a self taught PHD in your child’s diagnosis and educate professionals themselves. It comes from overcoming the things you once thought you couldn’t, perhaps look at all those tests you’ve watched your daughter or son endure. Comforting a child mid meltdown. Preparing and digesting worst case senarios. Believing you cannot administer medications and injections. You’ve OVERCOME these self doubts because you’re strong. Without even knowing it yet.
I’m one of those Mothers that changes her mindset multiple time’s a day. I go from having a good day, bad day, overwhelming day, too tired day, I’m awesome day, I can’t go on day. And yet every hour passes I still show up and get through my day.
Parents who feel guilty about not doing enough are usually the ones doing everything possible.
Why we need face masks with visible panels for our Deaf and Hard of Hearing community.
As England was delivered with the mandatory requirement to wear a face covering in shops and supermarkets, I can only imagine people of the deaf community tried to hopelessly swallow the lump that formed in their throat.
Since COVID-19, the Deaf and Hard of hearing community have been fighting for their voices to be heard. Yet ironically, it’s falling upon ‘deaf ears’, those with the privilege and ability to hear are choosing to ignore the voices desperate to be not heard, but listened to.
It may be hard for a hearing person to fully comprehend just how incredibly exhausting it is to be deaf, living in a hearing led society…
Coping with hearing loss is much like a jigsaw puzzle, each word that’s spoken our brains are tirelessly finding the pieces of the jigsaw to put together, yet to always discover one piece of the jigsaw is missing. We depend on lip reading, processing the sound of speech and reading your gestures of facial expressions and body language.
Have you ever tried to imagine what it’s like to listen with your eyes? Have you ever imagined what it’s like for your hands to be the illustrators of your life? The fatigue that Deaf and Hard of hearing people experience in day to day life, simply from concentration is draining.
Being a member of the Deaf and Hard of Hearing (HOH) community, the requirement to wear masks or face coverings is an enormous barrier to communication and is leaving a large part of our population isolated.
Over the last few months, having being required to have investigations in hospitals not only for myself but for my daughter too, I have been affected first hand by the struggles created by COVID19. Facial coverings are clearly a priority for both those in medical fields and patients. However, accessibility and the ability to understand information is crucial, where a PPE face mask covers the entire lower face, I cannot lip read, nor can I read the expression of the person‘s face, which are both vital for a HOH person to support their hearing and to understand what is being communicated. Like most deaf or HOH people I cannot solely rely on hearing aids to communicate. Although the PPE visors are see through, the sound quality is affected as in normal speech it does not travel through the mask and the sound is extremely muffled. These two items worn together leaves the deaf community feeling extremely separated, overwhelmed and frustrated.
Another factor for the public and retailers to consider when using face coverings, is if a person also presents with deafness, that their speech can be muffled and unclear so naturally as a sales assistant wearing standard PPE, this will create a communication block and would be failing to meet the customers needs. I do fear therefore how inaccessible standard face masks will make our stores and the impact on our customers’ shopping experience. After all aren’t we all entitled to accessibility? It’s a basic human right.
In any stores, on a normal basis there are many factors of disturbances to consider for a deaf employee, as well as for a HOH customer. For example, from the air conditioning to store music. I have included my blog post which explains in more detail the obstacles and barriers below.
Meanwhile, while the fashion economy are now feeding of this opportunity with several offering reusable masks, none seem to have taken advantage of meeting the needs of the deaf and HOH population through using masks which make lips visible for lip reading. The publicity of accessibility and building bridges for those who are isolated in the way could be a phenomenal success for a retailer if this was achieved.
As a fashion retailer who has access to materials, manufacturers and designers to create masks with transparent windows could become a jewel in their crown.
With all the uproar surrounding diversity, why are disabilities still being held at random of disabling! After all diversity isn’t about race it’s about disabilities too.
Please join us, let’s stand together and and make the voices heard of the Deaf and HOH community. Let’s not isolate and exhaust those in need.
The only way I can describe deafness is being claustrophobic, you cannot escape the walls compressing the ability to hear.
As anxiety crawls through your system like adrenaline, you feel trapped as the enclosed walls drown the sound you used to be able to hear. No longer can you breathe deeply and hear you’re voice again, your loved ones whispers are carried away with the breeze before falling upon your ears.
I have struggled and continue to struggle to this very day, with losing my hearing, my past identity and self esteem deteriorated too. The ugly painful baggage of self hatred.
I felt I could implode under the paramount pressure of investigations from GOSH and London Royal ENT. The anger and embarrassment I felt towards myself, the isolation and anxiety is something I never wish to pass down onto my daughter.
So I will continue to use my voice, for her.
It’s ok, not to be ok. And it’s ok to start your self acceptance journey when it’s your time. Nearly 17 years on I’m still struggling.