Sunday, 11 March 2018

A Mother's Courage

Home made Mother's Day Card with glittery stickers butterflies, hearts and stars

One thing I know about the many Mums I know who are parent carers are how courageous we have to be. We have to be brave, strong and determined every single day while we come to terms with the different life our beloved child or children are going to have. We have to listen to incredibly difficult news and decide to let experts into our lives who advise us how to parent our children. We have to be brave and let our children go to adults who support them and help them in a way we just can't because we are too close. We have to negotiate, listen, and trust the higher powers who decide what support our children should have. We have to speak out again and again when we feel we are being dismissed because though we are expert on our children we do not have the same power and status as the professionals who assess them.

I have found strength I never knew I had over the nearly ten years I have been lucky enough to be Chloe's Mum. But I have also felt very afraid- afraid I'm not strong enough to keep going, that in the end she will be lost in a system without the resources to support her because my voice and advocacy is not enough.

Recently I found again the piece of writing I did when Chloe was about to start school. It is good to remember how far we have come. I have many anxious times ahead while we move towards secondary school and try and ensure her Education Health and Care Plan meets her needs but this letter has helped to remind me to hold on and just keep going. 

To all those Mums out there walking this scary journey remember to breathe and know you have got this- really you have. This letter might make you cry because this life is emotional but hopefully it will help you remember to trust in yourself and the brilliant job you do for your children.

Our New House
January 2012
Your Future

Dear Jane,
Today, Friday 13th June 2008, is a momentous day for you. Today you are going to give birth to your first child.  Do know what, you will astonish everyone. The labour will be quick and painful but you will manage without pain relief, not even Paracetamol. The real gut wrenching agony comes later. She is so beautiful, your baby girl. You have wanted to become a Mum for ages and it feels incredible. You don’t sleep the first night because you can’t stop staring at her. Please make sure you enjoy this precious time, the first few weeks in your happy bubble with Neil and Chloe.  This is the time with your family that you will never get back.
I am writing this letter to help you prepare for what is to come.  Things are going to get a little hairy for a while. I can’t sugar coat it or change history because then you, (I) would be without Chloe.  I am afraid you only have fifteen tired and blissful days together as a normal family before the first official hospital appointment. The one that diagnoses that your baby is profoundly deaf.  She can’t hear anything apart from perhaps the sound of a really noisy lorry or a Samba Band. This is hard news to receive and fully understand but you will and do bear it. The days that follow are hazy, full of shock and sadness.  Your home will begin to fill with professionals trying to help. Your Mum calls them life rafts. There will be good days and bad. You will cry a vast amount of tears and ask the great unknown, WHY? You hold on with your fingertips and slowly let go as you come to terms with what this could mean for your baby’s future. She is not even two months old yet. Everybody else’s baby is fine, your baby is deaf. It will be alright. ..... and then it is not.
Don’t blame yourself for not noticing, or hate your GP for pointing out that there might be an issue with her eyes. Chloe doesn’t fix or follow anything. She responds to you but never looks, not properly. You will become frantic while you wait for the appointment at the eye clinic. You will ask everyone who is in the same room as you and your baby, “is she looking at that, do you think she is seeing it.” She really isn’t and that is your eternal sadness.
When you get to the horror of the eye clinic with your husband at your side please look after yourself. It is the place of nightmares, particularly the first time. You wait for hours while your precious baby (still only three months old) shows just how much she can’t see. You will her to turn her head towards the light or react to pictures placed in front of her.  There is no response. Later you will enter the Registrar’s room who quietly tells you your daughter has very poor vision. Those words place a bomb firmly in your life. Your baby has to be able to see as she can’t hear. It’s too much for your brain to comprehend. Six weeks later you will be back in your most hated place and the Consultant will register Chloe Blind. That day you will sob in your mother’s arms before phoning Sense.
The first year is really tough. You have to come to terms with your own terror of hospitals and doctors for the sake of your child. You do really well Jane, you put Chloe first all the time. Endless tests and investigations need to be carried out and you will meet many professionals who are interested in your beloved little girl. You get to know three different departments in the local hospital for her eye sight and hearing loss and there are four National hospitals you also visit.  The memory of those distressing appointments and all the invasive tests on your baby does fade, like the memory of childbirth, but you can never forget.
No one has any answers, particularly the geneticists. In time on the surface you will stop wanting to know why this has happened to your child but it never really goes away. No one has seen a child like Chloe before; she doesn’t have a syndrome or a known condition. You have an amazing human, sympathetic, Paediatrician whose own daughter was born deaf. She coordinates the investigations and tries to help you make sense of something no one understands. The top Geneticist can only say that there is a high chance (one in two or one in four) that it will happen again. Your unique combination of genes with Neil’s creates your baby’s hearing and vision loss.  It still breaks your heart but you will learn to deal with it. Chloe is so totally amazing that you stop thinking about what she can’t do and hold on to all the positives. She brings light and love into the world and that is a result of your combined genes too. Someone told you recently that everyone needs a Chloe in their life. You made her Jane and she certainly is determined, just like her Mum and Dad.
I have so much good news to tell you. The next few years are full of colour and vibrancy as your baby grows and responds to her world. She is so curious, touching and tasting, feeling and cuddling in her own inimitable way. She is happy from the start, your sunshine girl.  She has an infectious spirit and enthusiasm for all that life has to offer despite her dual sensory loss. You will know this as you watch her lie on her back, gurgle with delight and flap her arms in excitement. This is a distinctive trait she hasn’t grown out of.  Enjoy this precious time with her. I would advise you to capture the many delightful moments and keep them safely in your heart. They will help with the hard times.
 The most wonderful, joyous news that I have to tell you is that Chloe is given hearing. All your fears of her growing up in a silent world disappear once you go ahead with Bilateral Cochlear Implants.  It isn’t an easy decision because there are no guarantees and she seems to respond to sound with her hearing aids on. She also seems so young and fragile when they want to operate, only just past her first birthday. As a family you have already been through so much and you will feel pulled in all directions. Further testing of Chloe’s hearing will show however that she will never hear speech or be able to speak herself without implants. That makes the decision more straight forward, you want to give Chloe the best possible chance of verbal communication, particularly as she can’t see enough to understand and interpret British Sign Language. The night before surgery you are awake next to Chloe in the hospital room listening to the sounds of all the distressed babies. You feel very alone and terrified but I want you to know it will be worth it.  It is the best decision you and Neil ever made. Please trust yourself more Jane, you are a good Mum and you and Neil make the right choices for Chloe.
I can’t wait for you to meet her as she is now, all the fighting, all the times you have to face the unknown head on are worth it. Be prepared to put on a suit of armour because you will need it as you go into battle for your child. The idea that a congenitally Deaf Blind child will learn to read and write, speak and understand English is unheard of but Chloe will, you know it in your bones. Braille will be her way of reading and writing and she is already doing pre Braille skills. Her spoken language is something else thanks to the Cochlear Implants. From the moment she is switched on she responds to sound really quickly and everyone is taken aback at how soon she makes sense of what she hears. Six months after she is given access to sound you will hear her first words and they are just for you, your reward for staying strong. You are changing her one day after Christmas and she is gurgling up at you, smiling at your face when she says, “Mama”. From that day onward her vocabulary grows and grows. She has now caught up with her peer group and comes out with the most extraordinary words and phrases.
I want you to trust in yourself Jane because as tough and bleak as things will seem at times over the next three and a half years you never give up. Keep fighting Chloe’s corner because in the end you will be heard. I am afraid you will need to explain many times the difficulty of having a child born with a hearing and vision loss and how overwhelming it can be. As wonderful as your input from professionals is they don’t always have the answers. The Teachers and Support Workers from the Visually Impaired Service are not used to working closely with the Teachers and Support Workers from the Hearing Impaired Service. People have high expectations of your little girl but have not had to put a package together before for a bright Deaf Blind infant who is expected to go into mainstream education. You will be expected to retain and implement a lot of information, targets and suggestions and find a way through that makes sense for you and your family. Everyone constantly has to reinvent the wheel for Chloe and you are the one banging on the drum, reminding them it has to work differently for her.
This year your child will turn four and she certainly is a credit to you and Neil and all the input she has received since she was tiny. Chloe has had a specialist team of one to one support workers since she was eighteen months old and they have helped to open the world up for her. It is good to remember you are not alone in this journey with your beautiful girl. You will find strong, meaningful friendships with other Mothers and families whose children are born different; they understand the path you are on.
I am so proud of our precious child and marvel every day at how she manages with her extremely limited vision and Cochlear Implants. Her delight at the world is contagious and she has formed some good friends at Nursery and Preschool. This is reassuring; one of your biggest concerns is that she won’t be accepted.  Chloe is a gorgeous little girl, sweet and sociable, cheeky, funny and very loving. She experiences things differently from her friends but that doesn’t stop her joining in. She was even the lead in the Christmas show last month. It was heart warming and emotional watching Chloe as ‘Whoops a Daisy Angel’. She managed to listen, follow direction, move confidently around the stage and even improvise. On her first performance she drew back the curtain and said, “Here I am.” It was the perfect gift to receive just before Christmas.
Jane,  there is so much I could share to try and lighten the load but you are just going to have to experience the roller coaster ride for yourself. My advice is to take every day as it comes. The joy, love and utter happiness Chloe brings you are worth every stab in the gut, every sleepless night, every bit of fear and uncertainty. I still look at our daughter with the same awe as when I first held her in my arms as you will do today. Though she has been born with no hearing and very limited sight I am convinced Chloe can rule the world- we just have to give her the right support and opportunities.
Have courage, you are far stronger than you think.
This comes with my care and protection,

Love Jane  

Tuesday, 1 November 2016

Putting On My Big Girl's Pants- A Parent Carer's Guide to Being Heard

I have been trying to write the following for ages but have never quite found the words. The subject of talking to Commissioners and Service Providers is complex and confusing and I cannot pretend it is an easy thing to do. I want to explain the process I have been through since my daughter was born and how finding my voice, (and the right underwear) has made a huge difference.

In the Beginning

The nature of Chloe's disability, the fact that we have no official diagnosis for her severe visual impairment and profound deafness means that we have had to work with lots of different professionals since she was tiny. In the early days sitting round a table with twelve other people listening while they tried to figure out between them the best course of action for my baby was unbearable. I felt my heart was going to break and I wanted to stand up and yell at them to just give me the answers. My husband worried what listening to everyone was doing to me, Chloe and us as a family. We felt invaded, life became very serious and full of fear for the future. 

What I understood deep inside was that however scared I felt I had to listen and also had to have my say. It was important to be part of the conversation and work with everyone in order to give Chloe the best possible chance. When I look back I know that this tricky time was when I became a 'proper' adult with serious responsibilities. The grown up pants I was forced to wear felt tight and difficult to put on. I found expressing my own opinions very hard at times and my doubts didn't disappear but I had to be strong for Chloe. Being an active and fully engaged Parent Carer felt like becoming an amplified grown up but in order for our family to survive I needed to take on this role and ditch the flimsy underwear of my youth. 

Taking Back Control

Don't get me wrong there is a time and place for frivolous underwear, fun and freedom. I hope there will always be space in my life for dancing (my de-stress activity) but being able to have serious conversations with commissioners and heads of service has changed the future for my child and other Deafblind children where we live. No matter how difficult it gets (and it isn't always an easy or comfortable interaction) my overall feeling is that it is better to be there at the table and aware of the tough decisions being made than on the sidelines waiting for things to happen to my child and my family.

I don't always feel like a grown up or know how to think like one when my brain is screaming, " this is so unfair." Its even harder when the unfairness is not about me but my child who I would do anything to protect. It can be tempting to stick my fingers in my ears and hum to drown out the bad noise. But that won't help Chloe or the other children I attempt to represent. There is no doubt that cuts have severely affected the services we receive and it is only going to get harder. Unless we find a platform where we can have our say and are taken seriously there is no chance to influence policy or say what should be protected. 

Speaking Up
My role has changed since having my daughter. I move in a different world where others make decisions about resources and support for her. This can make me feel very small, powerless and a bit like a stroppy toddler. The trouble is people tend to ignore tantrums so finding a way to get my point across has been crucial. I have found citing the law and bringing in the big boys to back me up really helpful. In my case Sense (the national charity for Deafblind people) have been invaluable. Charities are there to help us and our children and we shouldn't be afraid to ask for help when we need it.

There have been times sitting across from some of the decision makers where I have felt like flinging my toys out of the pushchair and slamming the door. But then I wouldn't be in the room anymore and that does not help the situation for Chloe or other families going through the same issues we face everyday. 

When the powers that be ask your opinion it is so easy to feel cynical and think there is no point in saying anything, the decision has already been made. I know from my own experience that there is strength in numbers. I find it much easier to speak if there are a number of voices all saying the same thing and we are much more likely to be heard.

Respect and Big Girl Pants
As parents of disabled children we are more powerful than we realise. Front line workers that have day to day contact with you are in a really tough position. They cannot change the difficult things that are happening, it is being done to them just as much as it is to us and our families. The law says as service users and “customers” people should take notice of what we have to say.

If we are being treated like grown-ups whose opinion matters then we expect actions to follow words. We need to be valued and treated with respect or our default toddler emerges. I have sat at meetings fighting back the tears or shaking with fear and pent up emotion having been shut down by a manager for making an ‘unreasonable’ request. We are not spoilt children demanding sweets, we are asking for things that are crucial for our family’s existence.

It is bound to feel personal because we are being asked to share our stories about the beings we care most about in the whole wide world. I have learnt that change takes time and have had to endure many long periods of silence when I thought we had been forgotten or ignored again.

The important thing to note is that our opinions and experiences are being sought, or should be under the 2014 Children and Families Act. Unfortunately there are no magic wands or beans to grow pots of money. But I know parents just like me can change the world for our children with courage, a collective voice, sheer determination and the right pair of grown up pants.

Jane Ring

Chloe's Mum
Parent Carer
Writer/ Activist/ Consultant
Sense Change Maker of the Year 2014


Thursday, 30 July 2015

Summer Holiday Blues

I usually love the summer holidays.  All that time spent with my brilliant girl is my idea of heaven. I am sure there are lots of parents rolling their eyes at this point and don't get me wrong it can be incredibly exhausting but I have only one child to amuse and actually she is pretty easily pleased. During the holidays we make the most of every single day we have together. We have adventures with friends, play lots of games, spend time with family and laugh a huge amount. Of course we also get fed up with each other and we have plenty of difficult moments- trying to give her her independence while keeping her safe is always a fine balance. Summer holidays mean local attractions become  busy noisy environments with huge challenges and result in a child who does not leave my side. This summer however Chloe is not next to me, she is with her skilled multi sensory workers or her Dad, or Grandparents as I am recovering from a total hip replacement. I can not tell you how much I am missing her and the following letter is my response to the situation.

Chloe on an adventure.

Dear Chloe,

I want to tell you again how proud I am of you my big seven year old girl. You worked so hard at school this year and once again astonished everyone with your ability to learn and keep up with your peers. You told me today you are not very good at reading but Braille is hard to learn and your teacher is very happy with your progress, don't forget she told Daddy what a delight you are to teach.

I wish more than anything that I could be running with you right now, or taking you to the park with your scooter or going swimming; doing all the fun things we do together. Chloe and Mummy time has always been very precious.. I have loved showing you the world, helping to open it up for you so it makes sense. I miss you when you are at school and you always come home so tired afterwards. During the holidays we get to have fun together.

I am sorry I am not much fun at the moment. You have been so brave and brilliant during the time I was in hospital and since I have been home. One of the hardest things has not been able to tuck you up at night and have our enormous goodnight cuddle. Touch is so important to you and our cuddles have always been very special and very big. Now my hip is slightly less sore at least you can have a cuddle that makes you happy and I am so glad.

I wish I could have put off the operation but my osteoarthritis was getting very bad and I had stopped being able to do lots of things with you because of my hip. You always say to me that I am the best Mummy for you and I hope that my experiences have helped me with this very privileged position. When I was little and had to have surgery on my hips it left me feeling out of place in the world. I had a massive limp and felt really different from everyone else I knew. I spent years trying to catch up which left a huge hollow feeling inside me and eventually as a teenager I couldn't cope any more and got really ill. I never want you to be ashamed of any part of yourself which is why in our house we acknowledge that your eyes and ears don't work like other people's, but also how amazing you are and that you can do anything you want to. Being Deafblind is just a part of who you are but it should not be hidden away or denied.

Accepting that I needed this surgery was very hard but in the long term it is the right decision. Unfortunately right now it has taken me away from you and this makes me really really sad. It is taking every once of my energy to keep up with my rehabilitation and I  am trying to do more each day. At the moment my energy and ability to do things with you is very low but my love for you is just as strong as ever. We are a family that walks a different path. Our cat has three legs, you and daddy have eyes and ears that don't work properly and I have my wonky hips. We are perfect for each other and I can't wait until I am back on my feet and having adventures with you again.

In the meantime I do love listening to all the great things you have been up to and hearing the happiness in your voice. To be honest I need our extra special cuddles as much as you do. I am trying to be patient with myself and my limitations but I feel like half a Mummy. But like everything we are getting through this together with the help of our family and friends and your daddy is being a complete and utter star. I am lucky that there is a solution to my arthritis and that I have you my amazingly resilient child to cheer me up.

All my love forever,

Your Mummy

Climbing a tree without me

Wednesday, 25 March 2015

Why I am A Campaigning Mum

On March 15th I got a wonderful handmade card for Mother's Day. The card is shiny and gold and there is one word spelt out surrounded by stars, the word MUM. Becoming a Mum changed my life forever as it has done for women across the world, throughout history. As soon as that little blue line appears confirming you are carrying another life you alter. I changed my diet, I stopped drinking alcohol, I started ante natal classes and slowly I took on this new role. It wasn't just about me any more and I loved every minute of the feeling.

Chloe was born at twenty to seven in the evening and I remember so vividly the joy I felt that she was finally here. My tiny, perfect little girl who her Dad and I could share our home, life and love with. That night I couldn't sleep I was so excited and overwhelmed by what I had just done. How many other women had lain on the same bed before me unable to do anything apart from stare at their brand new babies?

Sometimes I catch myself staring at my now six year old daughter with that same sense of wonder. Every morning she climbs into bed, gives me an enormous wraparound cuddle, holds my head in her hands and tells me she loves me or giggles at something she remembers. I cannot measure the incredible joy she has brought us. Chloe, our unique deafblind child, teaches me about the world and I am incredibly proud every single moment of every day to be her Mum. I had no idea of the sadness that I would also carry, the fights I would have to have, the energy I would need to keep going or how I would take on a whole new role in order to survive.

I  proud to say I am a campaigning Mum. I am an activist on behalf of my child and other deafblind children who otherwise would be ignored and fall through the many cracks in our system. Our children deserve to be seen and heard, acknowledged and related to based on their communication needs. They should be able to live happy fulfilled lives as valued members of our community. My child is thriving thanks to the right early intervention and because I have been prepared to go into battle for her to get the specialist support she needs. Every day parents take up their own battles desperately hoping they will be heard in their bid to change the outcomes for their children. It can feel like we are ignored, overlooked or dismissed but we really do have rights as parents. Sometimes we just need the strength to speak up but that is not always easy to find.

I haven't always been a talker. My own experiences of being disabled have not been positive and led me to shut myself away. As an adolescent. I lived with an overwhelming sense of shame and a feeling that I did not fit. What turned me into the fighter I am today was learning how to speak up and accept myself, wonky hips and all.  At 19 I emerged from a prolonged period of mental illness having found my voice. I had no idea that twenty years later I would be using it to such good effect to argue on behalf of my child and the other deafblind children in Devon for services to be reinstated.

On April 1st we get our key worker back, there will be more staff dedicated to supporting deafblind children and their families in Devon and section 7 assessments will once again be carried out. Thankfully newly identified deafblind children and their families will get the specialist support they so desperately need. The Rehabilitation Officers for Visually Impaired Children have also got the contract back to work in schools, ensuring all visually impaired children get independence and mobility training in the environment where they spend most of their day. Parents speaking up, coming together and campaigning using the Deafblind Guidance has enabled this change. Well done us.

Being Chloe's Mum has taken me in a totally new direction. I have been to the Houses of Parliament recently in my role as a Sense activist to celebrate the reissuing of the Deafblind Guidance. Chloe and I were awarded Sense Change Makers of the Year in December for the fundraising, awareness raising and campaigning we do on behalf of deafblind children and their families. The idea I had in my head of what being a Mummy would be like was totally wrong in so many ways. My child is a profoundly deaf, severely visually impaired little girl whose path ahead is not simple or straight forward. I will always be ready to knock down those barriers in front of her and give her the confidence to do the same. One thing that has always been certain is the love that we share and how lucky I am to be her Mum.

This post is dedicated to all those amazing Mums and Dads who help steer a path for their children. Never give up hope that change is possible.
Jane Ring
Changer Maker of the Year 2014

Wednesday, 11 February 2015

The Need for Inspiration

Recently I have been suffering from writers block. I have been fed up with my own body's deterioration and I have felt really stuck. I have been searching for something to write about that isn't my very boring pain caused by osteoarthritis. This week thanks to two very positive events (one that has happened and one still to come) I have found my voice again. 

We all need to be inspired in life, to be told you can succeed and are able to whatever you want to. The reality for a child who is deaf and blind is that it can be extremely hard to participate but this has never stopped my beautiful daughter from having a go. I am sure she is aware of her differences but probably not as much as her Dad and I are at times. As Chloe's Mum I want to keep her safe and protect her but also want to nurture the feeling that she can conquer the world if she sets her mind to it.

On Saturday Neil and I took Chloe to a blind and partially sighted football festival run by Moorvision 
Action for Blind People and 
Devon FA
I was a bit nervous beforehand because I know how overwhelming noise can be for Chloe. It is hard for her to join in like other children because she can't see what is being demonstrated and can struggle to hear instructions as well. But she loves running, her dad plays football every week and she has always enjoyed playing with balls of all shapes and sizes. The fact we were going to be with other children and young people with sight loss reassured me and I knew everyone would try and make it as accessible as possible for her.
Chloe in her football kit clutching a yellow football

The most brilliant part of the event was that the skills training session was led by coaches and players from the England Blind Football Team. I stood on the sidelines watching our children being trained and supported by individuals who are excelling in their field. Each and every child loved it, there was a real buzz and as I looked round at the other parents with huge smiles on their faces I felt so grateful.  I am grateful that our children will have a place where they can shine if they want to. That there are organisations out there who are dedicated to encouraging and motivating our children who without good vision are at such a disadvantage in life. Sometimes we need reminding that they will be able to find their place in the world where they can be themselves and achieve incredible things on their terms. 

Chloe practising her dribbling skills
And as for Chloe she captivated everyone with her joy, determination and pride in herself. She participated with her Dad close by and loved getting individual attention from Gary the deputy head coach who she could listen to thanks to the combination of her Cochlear Implants and radio aid. I think she inspired a few people herself that day, the England Head Coach said that she is his new hero. That statement will stay with her for a long time and I will never forget her proudly announcing that she is a footballer now, just like daddy.
Chloe with Jon Pugh,GB and England blind football team head coach

Sometimes I forget what a lot Chloe has to contend with every day, how hard she has to work and all the things we need to put in place so she can learn and develop like her peers. I am really excited that she is going to get the chance to meet another strong, determined and articulate deafblind person this week. Molly Watt is coming to Exeter to meet Chloe and spend time at her school as well as promote her book. Molly is a person who I have met a few times at Sense events. She is a Sense ambassador, runs her own charity raising awareness of Ushers Syndrome- the Molly Watt Trust, is currently doing an education degree and has written and illustrated a children's book about inclusion following her own experience of being bullied, Frog-froggy and froggithttp;// 
Molly will be at a meet the author event at Cafe 55 in Northernhay Street, Exeter on Thursday afternoon (1-3pm) where I am sure she will inspire many people. Personally I can't wait for Chloe to meet her, they both face similar barriers and every day prove to the world that you can live full and active lives with sight and hearing loss. Molly is at a place in her life where I hope Chloe can get to one day. With the right attitude, support and guts I know she will succeed. Chloe realises she is deafblind but after this week I hope she understands that it doesn't have to stop her. My job is to make sure she gets to experience as many opportunities as she can that develop her confidence and show her anything is possible, 

Tuesday, 18 November 2014

The Power of Words

Ten days ago I spent a day with other writers, most of them were Mums and all had their own story to  tell. I don't know when I write about my life with Chloe who will read my words or what reaction I will get. I have a hope that other parents of disabled children will see aspects of their own lives reflected in my words and it will stop them feeling so alone. Mostly though I write for me because it helps me cope with this alien situation I find myself in. Sometimes I just need to shout, laugh, cry or celebrate and I don't want to do it alone.

When I look back I realise I have always written and words have always been important to me. When I was at primary school I wrote a poem about having an operation that was chosen to be in an anthology. As a misunderstood and rather angry twelve year old I wrote an account of why I was afraid of hospitals which my class teacher read out. It could have been a mortifying experience but my words healed a rift that was there between me and my peers and enabled me to let down my guard and make friends. Unfortunately and rather predictably as an angst ridden teenager I wrote hundreds of dreadful, self indulgent poems that were not fit for anything but a bonfire but made me feel better. Most of my family members and some of my very special friends have copies of carefully crafted poems I have written for important moments in their lives. I think they treasure my words but you can never be sure.

The one thing you get practised at as a parent of a disabled child is writing about your child's particular needs. To access funding and support you have to fill in long, complicated forms. Every word you write in the early days is like a stab in the heart. Telling faceless decision makers exactly what is wrong with your precious child and why you need help is heartbreaking. You can't downplay anything because then you won't get the financial and practical support but to put everything your child can't do on paper is excruciating. Every parent needs a place where they can celebrate their child and all these forms do is increase the fear you have for your baby's future.

I have used my words for six years to influence the outcomes for my daughter. I have written parent views for Chloe's statement of special educational needs, the legal document which ensures she gets the right level of support in school. There have been letters and emails to my MP asking him to make enquiries on our behalf when I have felt powerless to do anything myself. Recently there was the the robust document to Devon County Council which has resulted in them taking action to address their failure to fulfil statutory duty for deafblind people. The right words can initiate change and bring communities together.

We all have a need to express ourselves and be heard. For the first fifteen months of Chloe's life she couldn't hear anything, but through touch she knew she was loved and safe. I was so afraid for her future and could not imagine how she was going to communicate with such a profound hearing and vision loss. Six years later she is becoming proficient at reading and writing Braille and her spoken language is extraordinary. Cochlear Implants have given her access to sound and from the moment of switch on she was eager to express herself. The ability to communicate and be understood is so precious. My daughter's first words were just for me. I was changing her one day, giving her a gentle massage and singing when she looked up and said, "Mama". That moment will stay with me forever.

Chloe's first day at nursery school

Friday, 31 October 2014

Parent Power

Last week an amazing email arrived in my inbox. It was from two senior managers from Devon County Council and contained their promises to me and a wider group of concerned parents who have been campaigning about cuts in provision for Deafblind children. As I skim read the email trying to take it all in I found I could not see the words. My eyes filled with tears and suddenly I was sobbing my heart out. For six months I had held it together and let my anger and sense of justice carry me along. This had not been an easy task and at times my family had despaired at the effect it had on me. The process had used up all my energy and resolve but I was determined to be heard.

It is all too easy to feel overwhelmed when difficult changes happen (or are imposed on you). In the current climate letters that arrive on the doormat often contain bad news. It is so common for families to be left with a feeling of frustration and powerlessness. It can stir up the underlying grief that sits in your heart. For me its never grief about Chloe because she is the best thing in my life, its the sadness at what your child has to overcome in order to thrive. There are often so many things you are shouting about or 'highlighting' that one more issue just feels too much to bear. Our local Sense family support group met up in May and I looked round at the families that are so important to me and thought I am not going to take this lying down. To hear from other parents that their lead professional experienced and knowledgeable in multi sensory impairment had been removed and that there were some children who hadn't even had a deafblind assessment broke my heart but also put fire in my belly. It was time to take a stand for my child and all the vulnerable deafblind children in Devon who had been forgotten in the recent commissioning process.

So with some guidance from the legal and campaigns team at Sense I wrote a letter outlining in what ways Devon were breaking the law. Thanks to years of campaigning by deafblind people and charities there is a law that protects deafblind children and adults. The deafblind guidance is there to ensure deafblind people receive the support and services they require from their local authority. Somehow when Virgin Care was given the contract to run Integrated Children's Services in Devon provision for deafblind children had been removed or forgotten. There were no senior managers with responsibility for deafblind services and so our children had slipped off the radar.

The letter was instigated by me but was a robust document written with input and support from a number of families. It has taken six months and some further clarification but we are being taken seriously. We had a meeting earlier this month with the two senior managers who have now been given responsibility for deafblind services in Devon. We sat round a table together and they apologised for what had happened and said they want to work with us to address the issues we have raised. I think they are truly listening, are trying to address the situation and will resolve it as soon as possible. They also thanked me for gathering information and providing a platform where people could share their stories both good and bad.

I did not do this work for Devon County Council I did it for our deafblind children who don't have a voice. Without the right support and guidance their potential is missed. I am so proud of how Chloe lives her life. She is determined and strong and has a spirit and zest for living which is infectious. I hope when she is older she will be proud of me for fighting for the services that make such a difference in her life.