“ 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 EHCP is: 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 April 2020
“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.
I done it!
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.”