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.
Two BunBuns in hand and her backpack in the other, our confident, yet defiant daughter made her way to the car. Naturally, with such little awareness or understanding of where she was going. We made the short 55 minute journey to Cambridge, Addenbrooke’s Hospital.
4 years since Livy failed the newborn hearing screening, which pursued an in-depth investigation from 2 weeks old, a moderate hearing loss was detected. We have since seen a deterioration of her hearing over the last couple of years. Which has now lead us to this new journey of discovering her eligibility and suitability for cochlear implants… so it begins.
For anyone who hasn’t been to the hospital before, the sheer size of the campus is huge! If you’re attending the Emmeline Centre, park in car park 2 for the short walk round.
Livy’s first appointment where we met the professionals involved in her care was via conference call due to the COVID19 restrictions. They’ve limited the amount of travelling and admissions to the hospital.
Upon arrival and booking in, all reception staff are appropriately dressed in PPE. Due to the current global pandemic, COVID19. Despite the masks covering their smiles, you instantly felt the warmth from everyone waving at Livy making her feel as welcomed and comfortable as possible.
In just a short wait, we was taken to our audiology booth. We met our new audiologists and rehabilitation specialist, usually the speech and language therapist would be accompanying the appointment too. Livy was immediately drawn to the toys provided to distract her and keep her occupied during the checks of her ears, this was to check the condition and overall Heath of the ears, like wax/ infections etc…
Livy then had a Tympanometry test which is to assess how flexible the eardrum is. In order to be able to have good hearing you need to have a flexible eardrum to allow sound to pass through the eardrum. A small soft rubber tube is placed at the entrance of Livy’s ear. Air is gently blown down the tube with a sound that is played through a small speaker inside it. The tube then measures the sound that’s bounced back from the ear. If there is glue ear, which is fluid behind the eardrum, sound bounces back rather than going through it.
After a long exchange of series of questions, surrounding Livy’s lifestyle, her development and relationship with her hearing aids. We moved on to a Visual reinforcement audiometry/Play audiometry. This is conducted by playing varies of pitches of sounds through a device that’s attached to her hearing aid moulds. She must then link, hearing a sound with the visual reward. For example a screen appears with her favourite cartoon character or a action toy lights up in a booth. Once livy is able to associate the sound and the visual reward the volume and pitch of the sound will be varied to determine the quietest sounds that Livy is able to hear.
We then moved on to talking about the cochlear implants in more depth. We explored the benefits, the technology, the risks of the procedure/ infections, the expectations, the reality and suitability.
Throughout the appointment we was consistently yet gently reminded, that not everyone who goes through the assessment process is suitable, especially for someone with such mixed level of loss like Livy.
At this moment of time Livy’s left ear falls into the criteria for implantation. Her right ear currently sits at 85-80 which is the severe loss area. Livy needs two pitches to sit at 85-90 decibels. So she just misses the criteria. Unfortunately the NHS will only implant, if the person needs both ears. They will not implant just the one ear. Livy has another audiology assessment at the end of July to confirm the levels of loss recorded today.
We must remember that being implanted, is most certainly not a cure for deafness itself, it can however have potential to make a phenomenal difference to ones life.
Fortunately Livy has already had a MRI, which gathers information about the shape of her cochlear, which helps the professionals determine the choice of implant suitable for Livy.
If she gets that far.
Going forward, Livy has another audiology assessment which will be her third, 29th July. She will need a functionality test which is a visit in her home environment. But due to the pandemic restrictions, we’re uncertain how soon this will be. We will also meet the speech and language therapist. The team will then review their findings and decide whether livy has suitability for a cochlear implant, perhaps ending with the eventual offer of surgery and rehabilitation over the next few years.
Thank you so much for following our journey so far.
The purpose of sharing our journey and normalising the trials and tribulations of motherhood, will hopefully help other families to realise they’re not alone and we’re all in this together.
Social media portrays such perfection, so we focus on striving towards something unrealistic. We alienate our feelings, potentially producing self doubt.
Here on this platform, I aim to share the nitty gritty parts of motherhood. And also share Livy’s hearing journey. It’s not been plain sailing, and the ship has gone over board many of times. But we keep pushing on, through the stormy seas.
Almost instantly you’re greeted with the comforting familiar aroma of the sea salted breeze. An essence you feel the need to inhale your lungs worth. As the rainstorm battered against our coats, putting our trusted wellies to the test. There was physically nothing that could, ironically, dampen our spirits.
Since before lockdown we regularly visited the beach. A place where Livy feels at peace, where her free spirited nature is let free and roams excitedly amongst the golden sand as the sun’s beam, glitters the shells along the shore, she’s not confined by the pressure of society’s expectations.
With a bucket and spade to hand, the sand between her toes, watching our daughter explore the beach is like watching a candy floss overdosed kid at a rollercoaster park, adrenaline pumping through their veins in anticipation of when the rollercoaster will take them for the best ride of their day! Except, Livy is high on sea air, and a belly full of salt and vinegary chips.
I have not kept it a secret, how incredibly demanding life at home has been during lockdown. I mean, all of my previous escapism hide outs have been located by my children like little hound dogs cornering their prey. The kitchen no longer provides a minutes peace whilst I savour the caffeinated burst of energy. I no longer go toilet alone and have to endure a full conversation with my son with my daughter nested contently in my lap. The cupboard I once turned to, where I would secretly gobble an entire chocolate bar in world record breaking time, is no longer there and has been gobbled by little vultures instead. And my partner can no longer hide at his desk miles away from home to concentrate on his work.
Returning to the beach was extremely therapeutic for us all. All in individual ways. The four walls which we have been cramped into for 12 long weeks, we could now take a good breath of fresh air and exhale all of the tensions and frustrations we’d been harbouring and maintaining at a fearsome bubbling boiling point.
The say watching the waves of the sea, provides a meditative state to our mind and body. And I honestly think we needed weeks worth of meditation to recoup our once stable minds. How we’re going to adjust to civilisation is beyond me. I think my mind is quivering, rocking back and forth, boarder line being declared clinically motherhood insane. Haha!
For the children, being at the beach doesn’t just involve splashing overly excitedly like a energetic spaniel in the sea. The sand brings hours of endless play for them, I found this incredibly informative information about the benefits of playing in the sand, yes as parents it means we painfully endure trying to clear it off the children before setting off home, I’m pretty certain the feel of gritty sand lingers in my mouth. And will potentially take a month to remove every grain out the car however…
Sand is an open-ended medium that encourages learning no matter the skill or cognitive level of the child. The open-ended nature of sand play means children can direct their own learning.
Playing with sand promotes creativity, exploration, and problem solving skills. It develops cognitive skills by teaching mathematical concepts and encouraging scientific investigation. It also promotes artistic flair through creative expression.
Sand play stimulates physical development by building fine and gross motor skills and refining hand-eye coordination as children build structures out of the sand.
Through sand play, children practice their social skills as they cooperate, take turns, share ideas, and communicate with other children.
I hear what you’re thinking, how does one family regularly visiting the beach, as much as someone excitedly doing their fortnightly home bargains trip not become remotely bland, surely the novelty wears thin for the two boys? I think when you find something, which becomes your safe haven from reality it never exhausts itself. With a bucket full of enthusiasm and a spade here is what you can do:
– Build a sea creature. Will it be a turtle or dolphin? Maybe a mermaid?
– Search for treasures. Use your imagination, seashells, weed, pebbles or driftwood and crabs!
– Dig a tunnel to the sea. The whole family can participate in this, even engage other families once’s restrictions are lifted. Interaction and social skills at it’s finest!
– Dig a hole or build a dam! Again an activity the whole family can participate in.
– Make a necklace or bracelet, search for pebbles or seashells that have holes in to thread through string, make a bracelet or necklace to keep.
– Picture making. Whether this be drawing in the sand using your fingers, spares or material from the shores. You can also collect items to make a picture at home or a create an earth jar.
– Put those buckets to the test and see if you can create the biggest sandcastle town.
– Build a Sandman, I hear snowmen are so last year and so seasonal!
– Footprints in the sand. Who’s is the biggest? Who’s is the smallest? How many can we make in a line? Get the little ones brains ticking.
– Explore the cliffs, with paramount safety of course. Talk about the wildlife that live in the cliffs? Talk about the colours, how did they get there?
When visiting the beach, it follows the same routine every time, a routine we follow religiously for our daughter to ensure she knows what’s coming next and minimise any potential EPICALLY forced break downs and frustrations. Children with or without SEN need routine in their life and our day trips are not without an exception.
When time approaches to head back to the car, something as parents our sigh is spontaneously mixed, like your favourite passionfruit martini, with content but also a heavily mix of relief, one of Livy’s SEN being risk taking combined with the barrier of clear effective communication due to the inability to access sounds. A simple day out can leave us utterly exhausted as she keeps us on our toes. Usually Livy’s care is allocated to me whilst dad gets away slightly with the boys… I’m pretty sure all you see is a purple haired lunatic dashing to and from the seafront and shore, keeping this white curly haired dot safe from harms way.
Livy needs clear and consistent signs to ensure she understands what’s expected of her, we sign ‘car’ and ‘goodbye’ wave to the sea and point to which direction we need to go. This doesn’t always go down well, as you know she’s beyond resilient to the point of stubbornness, yet we stay consistent until she follows suit. With or against her will.
As we make our way back to the car, Livy without fail signs cold, as if she’s just been exposed to artic temperatures whilst in 29 degrees heat, even when she’s not physically cold, this is her way of saying she wants to get dressed into something comfy like her onesie. As we attempt the impossible task of disposing all sand off them, in relatively quick time and into fresh comfy clothing we pack up and set off… a screech follows, putting all vulture like seagulls to shame as they scavenge for those salty scraps, follows a father enthusiastic sign for food. How could we ever dare to forget to finish our trip with those mouth watering, salt and vinegary chips. A smell so delicious you can almost taste the fluffy chips, from the local chippy. I highly recommend ‘Henry’s’ in Hunstanton. The best, most polite smiley welcoming staff and all locally sourced products.
It’s that time of the year, when you find yourself aimlessly searching sites at ridiculous o’clock in bed for that perfect gift.
Whether this is for dad, grandad, step dad here at Mothering Silence we’ve got your needs covered. All under one roof (website)!
The First Time Dad
How adorably cute is this ‘Jellycat’ teddy bear with a personalised jumper? This little bear is part of the friends of JOULES, a lovely company called That’s mine. Perfect for that dad to be and first Father’s Day gift to keep for many years to come.
The Workaholic Dad.
Crisp laundered oxford shirt, perfect for that workaholic dad. The versatile shirt will be styled and worn for many occasions, pair with navy chinos for a smart casual look in the office, slim/skinny fit jeans and blazer for date night or Cheltenham races.
The Flame Master Dad.
As part of friends of JOULES market, this amazing BBQ rubs and spice tin by SPICE KITCHEN will be sure to satisfy those experimental taste buds!
The Sporty Dad.
Look good on and off the pitch with this gorgeously soft rugby style shirt. The navy and white stripes make this easily styled with jeans or chinos and shorts in the summer.
The Never On Time Dad.
He will never miss a single date with this buttery soft leather watch, timeless style face with gold tunes.
For the Dad who don’t like a fuss this white classic fit or slim fit shirt comes in a range of colours, to suit the important man in your life. Simple yet effective.
The Bold And Brave Dad.
The bold brave daring dad that like their shirt to match their personalities. Joules’ in house designers produce the most amazing ‘out there’ prints!
Cheap And CheerfulDad.
For a little gift on a budget these cheap yet extremely cheerful Boxers will pop a smile on his face.
The Bearded Dad.
There’s a huge variety of beard products available on the friends of JOULES market place. This product by NORSE will definitely give many a beards the pamper they deserve!
The Green Finger’s Dad.
For all those that love to dig deep in the garden, these perfect boxes come in herbs, chillies, vegetables, super greens and gardens with plenty more to choose from! Super adorable too!
The Stylish Dad.
Lastly this is a personal favourite, waterproof yet stylish field Coat. The coat speaks for itself, the design and colour is extremely versatile Chuck over a chunky knit in the winter, effortlessly stylish with a white laundered oxford or Woody t shirt and a pair of jeans. Style up or down depending on the occasion.
All products are available from WWW.JOULES.COM
This is not a paid AD or sponsored in anyway. However I do work for JOULES.
Family life gets tough sometimes, you know the days where we grit through over grinned teeth to our partners, those days where your stomach physically turns over at the sight of the over multiplying washing pile, your ears are ringing from the concert worthy noise projected from your little darlings lungs. And the million of questions on repeat from your overly bored, wishing he was still at school, son. It’s potentially your 5th thought of the week, to order a take out, rather than cooking from the week worth of contents in your fridge just to spare yourself from washing a few dishes up.
Then chuck in the trials and tribulations of running a family home with a child of SEN needs. I know what you’re possibly thinking, my daughter looks ‘normal’ right? My daughter looks ‘abled’. When presented with the word Special Educational Needs, you automatically assume it relates to serious or chronic illnesses…
Livy has the following identified Special educational Needs;
– Profound Bi-lateral Sensory Neural Loss (profound deafness)
– Visual difficulties
– Significant delays in speech and communication. (Less than half her chronological age)
– Delayed cognitive skills
– mild/Moderate delay in social skills
– significant delays in fine motor skills
– mild/moderate delays in gross motor skills
– significant delays in self help and independence
– some sensory seeking behaviours have been identified including Livy’s tendency for thrill seeking, which can lead to dangers for her.
When your child has some what ‘invisible’ needs, meaning that Livy presents in a well health, abled child, you don’t always notice her hearing aids, when our challenges are invisible to the human eye, our secret pain and joy is almost alienated to those who don’t truly know and understand what it’s like, only being in a similar circumstance could you comprehend our day to day challenges. This is incredibly isolating.
There is no denying our home life is incredibly demanding, life in lock down means we’re under the constant pressure without unwinding time. Half the time I feel like bursting into tears and I’m unsure if this is because I’m stressed, frustrated or emotionally exhausted. Some days I don’t feel myself almost like I’m disconnected from my feet. I simply float, getting myself through each hour. We’re so busy trying to meet our children’s needs, we forget our own emotional needs and my partner who is working from home, is already burdened. I don’t think he would want to wipe away my salty tears, when I don’t even know why they’re falling myself. I’d prefer to sink into a pizza, in hope of swallowing my feelings and masking them with the pleasure of the smokey taste of pepperoni.
There are many times in the day that I will escape into the kitchen, which almost opens its arms wide and quickly as a kettle boiling gathers all my broken pieces, from the first sip of coffee I’m pretty certain those collected broken pieces are temporarily glued together again. As an often overwhelmed mum, I will hold my hands up that there is a consequence for having so many parenting demands, is that mine and the children’s dad’s relationship has had more strikes than a baseball bat. And often left feeling bruised and dented from the ever going shots of a ball.
I’ve looked at my daughter during a full on show stopping melt down, trying to rack my brain, as if a little admin Beksie is pulling out files upon files, as to what could possibly be wrong, her aggression and frustration can be volcanic explosive, and as hot lava runs down, almost like her hot salty tears. I can never understand her frustrated pain, although deaf myself I do not suffer any inability to effectively communicate, I cannot begin to comprehend how she must feel and the anger against the world she holds.
During this pandemic I have been able to press pause on my much loved job, with the absence of pressure from work and places to be, with such minimal time, I mean who decided that 60 seconds in a minute, 60 minutes to a hour, 24 hours to day was enough to divide between three children, run a house, keep a relationship afloat, maintain a career and juggle medical and educational appointments, which to have come to halt. The lack of pressure has become welcomed and replaced with quality 1-1 time. There’s noticeable changes within Livy’s behaviour when she’s outside exploring. There’s a sudden calm in her tornado, whirlwind nature. She’s at peace as I am too.
Being a outdoorsy family, surrounded in the open where we can see all shades of green until the skyline meet and amongst natures finest comforts. We almost take a break from our confined lives. And mainly from ourselves. For me personally, sat by a lake watching the ripples of the stream and focusing on listening to trickles, provide a sense of relief, for once I’m not talking about my daughters diagnosis’ or medications, I’m not listening to more tasks and advice surrounding my daughters care and needs. It’s just peaceful to us both to inhale fresh goodness and exhale the frustrations which home life can bring.