Thank You letter to My Child's School

Chloe aged 5, using her cane, walking to school holding hands with her friends.

I can’t believe that 7 years have passed and next week I will pick up my daughter for the last time from your school gates. I was so scared of giving my four-year-old into your care. I had so many questions; would you look after her, how would she manage, would she make friends, would you be able to make the adjustments needed so she could learn? I had already been through so much heartache, loss and acceptance. I knew how much she had to offer but I also knew it wasn’t an easy task. Everything is so much harder and takes longer to process when you can’t see very well and rely on Cochlear implants to hear. A congenitally deafblind child who learnt using braille was highly unusual and there was no precedent to follow. We needed a willing school up for a challenge to welcome her into their community.

We thought long and hard about where she should go, what size school would be best, considered the buildings and outside space she would have to navigate and tried to assess the attitude and ethos of each place we visited. I will never forget the morning we sat in the Headteachers office and she looked us in the eye and said, “we would LOVE to welcome Chloe to our school.” I knew you genuinely wanted her and that made all the difference.

Tonight, I watched Chloe give a brilliant performance in the end of school production. She even started the whole thing off. There she was, centre stage ordering cast members around (in role) and it took my breath away. You have allowed her to find her voice, to blossom and grow into the kind, feisty, funny, stubborn and complex 11-year-old she is now. Often vulnerable and sometimes frustrated she feels accepted and part of the school community, just as we hoped. She has friends, she has despite all the barriers to her learning done better than anyone could have predicted academically, and she still wants to go to school every day which says so much for the security you have given her.

I want to thank you for being willing to work with me and the team of people Chloe comes with that enable her to be in mainstream education. Your SENCo has been worth “a pot of gold” (Chloe’s words) to me and supported changes in the background that made sure Chloe carried on progressing. When things got difficult, she helped solve the next puzzle and carved new pieces if necessary so the fragile picture would hold. It wasn’t always an easy experience, but I trusted that I would be listened to and together we worked out solutions so that the bumps in the road were navigated safely.

I know I will miss walking her to school and being able to hand her into your care knowing she will be acknowledged, celebrated and accommodated so well. You have never made her feel less than any other child because she learns so differently. From the Sense Pompom challenge to Chloe running a Friday lunchtime Braille club you have encouraged her to accept herself and show others what she is capable of. Each year I held my breath while she was introduced to her new teacher and they quickly got up to speed with the team that accompanies her and the challenges Chloe faces. From her wonderful foundation teacher who gave her an exceptional start at the school to the year 6 teacher who gave her the courage to go on residential and helped her gain some independence you have never let her down.

Thank you for providing such a great experience at Primary School, for recognising her achievements and getting her ready for the next big adventure. We will never forget what you have given our family and I suspect you may remember Chloe for a long time to come.

With so much gratitude,

Jane

11th Birthday

Chloe wearing a striped red and white jumper leaning over a chocolate birthday cake

My darling girl today is your birthday and your Dad and I are celebrating without you. Instead of the big cuddles and shrieks of joy there was silence this morning until the cat decided to jump on to our bed and purr. I think she is missing you nearly as much as we are.
Today you are celebrating becoming eleven with sixty other children in the damp and drizzle on your year six residential. I feel  there is a massive part of me missing but I am so proud that you are there joining in with all the activities. I won't speak to you to wish you happy birthday because I know it will make it worse for both of us but I have sung to you many times in my head today.
I am so blown away that you are there with your classmates, that yesterday you went kayaking and Coasteering and were in and out of the water all day. It is a remarkable achievement particularly as you are not fond of the sea or beaches and that you have obvious concerns about keeping your processors safe- you are so dependant on them. I know I am biased but it is truly impressive. Your spirit of adventure always shines through.
I am struggling with the lack of contact but at least I get updates morning and evening from your specialist support workers. I am so glad you loved the presents I packed and hope the card I painstaking Brailled made sense. It's these little things I can do which ensure you get to experience things on your terms. I know your classmates are planning on giving you a Braille card as well. This knowledge (which brought tears to my eyes when I found out) helps me remember that people are looking out for you.
Eleven feels really big and I know you are growing up and moving away from me- just as it should be. This is your last few weeks with the school and classmates that know you so well. Transition preparations have begun and this morning in your honour your dad and I learnt the bus route to your new senior school. Your orientation and mobility officer put us through our paces so we can support you in September. It is scary for us all but I have to trust that the team of professionals around you are doing all they can to make this big change a success.
One thing you will have is a group of friends who will have your back. They helped you celebrate your birthday last week and as I sat on a separate table listening to you chatter and laugh I realised that my birthday wish for you had come true. You are liked and accepted and this lovely group of girls are going with you to high school. This is massively reassuring for you and for me too.
Dearest Chloe I cannot wait to see you tomorrow and carry on celebrating your brilliant life. I am looking forward to cuddles, stories and just having you near again. I will be ready though when I need to let you go again.

All my love always,

Mum

Celebrating a Milestone

Photo of Chloe holding onto a luggage trolley with an empty owl cage and suitcase appearing to go through platform 9 3/4 at Warner Bros Studio Tour, The Making of Harry Potter  

We are coming to the end of #DeafblindAwarenessWeek, the NHS is turning 70 and we have just finished celebrating Chloe's 10th birthday. She has been with us for 10 extraordinary years. I had no idea that the precious baby I was carrying would teach me so much. I have found strength I didn't know I possessed and felt pain and joy I hadn't even touched before I became Chloe's Mum.

Chloe loves a party and managed to find 4 different ways of marking her birthday. 1) a small family gathering with her cousin and friend from school. 2) a birthday treat with the same cousin and her 'best' friend having fun with pottery. 3) a fun filled, inflatable swimming party with 9 very special friends 4) a trip to the Warner Brothers Studio Tour of the Making of Harry Potter. Chloe is absolutely obsessed with Harry Potter and impressed the brilliant lady who gave us a personalised tactile and audio described tour with her knowledge and enthusiasm.

My head has been full of memories of Chloe from the tiny baby who was so restricted by her vision and hearing loss to the strong and determined rebel girl she is becoming. Our relationship has changed as she has grown and she is beginning to want to move away from me which causes her confusion. It's hard to encourage independence without a loss of security and confidence but we are figuring it out together.

I have decided to write my amazing girl a letter to mark the significance of double digits and the adventure so far.

Dearest Chloe
I can't believe you are 10, the time has gone so quickly and you are growing up so fast. I know every parent has similar feelings. Sometimes I would like to stop time so I can capture you as you are now, so funny, loving, determined and trusting.

I realise that I have lost a bit of my shine, that sometimes you want to run away from me rather than have a cuddle. I can be the the person that makes you the most cross or embarrassed but I am so glad that I am still the one you come to for reassurance and support. I will always hold your hand when you need it, welcome you back when you are wobbling then encourage you on your way again.

Its hard to remember just how lost and scared I felt in the first few years when I was coming to terms with how your hearing and vision loss would effect your life. I couldn't see ahead, or figure out how we were going to help you be in the world with us. I wanted so desperately for you to be part of the community, to be able to play with friends and do all the things other children do. With the help of your team, the right specialist support , your inclusive school and community groups you belong to you are succeeding- holding your own and making your mark on the world.

The first years I had to hold you so close so you knew I was there and keeping you safe. With the help of your cochlear implants and your remarkable, curious brain you have been able to leave my arms and explore. I have given you up again and again to the specialist services who enable you to take part in mainstream world. I am too attached to allow you to take risks sometimes, my instincts are to keep you safe. We are lucky that there are people in your life who can support you towards your independence and don't say "careful Chloe" too many times like I do.

I have accepted when you have come home from school covered in grazes where you have tripped over the edge of the playground or bumped into another fast moving child because all children fall over and get hurt. I was always coming home with scabby knees when I was your age. The fact that you are not phased and just dust yourself off and carry on playing makes me so, so proud. You are not scared of getting hurt and carry on running even though any vision you have is effected by movement.

I can't pretend it is easy- you have to work so hard to follow lessons, keep up with the teacher and take an active part in group work. This year we have managed to carve out "Chloe time" twice a week at school where you can consolidate your learning as it is getting harder for you . We have focused on increasing your braille reading ability at home, putting in place structured time for me to listen to you. Though you resisted at first I love this time together when I know I am really helping you and your future. It was lovely to hear that your hard work has really paid off and your braille reading levels have moved from emerging to fluent. What an achievement. You got a very special braille card this year from your little cousins in London and I loved watching my sister's face as you read the message aloud so speedily. 

Chloe in your 10 years you have already achieved so much.. You have reached the top of climbing walls, you have learnt to swim, you have completed a brownie camp over without me, and performed in two theatre shows. This Easter you took part in a Guide dog experience day and impressed the instructors with how quickly you picked up the commands. Like all of us you are motivated by things that excite and interest you and I know you are determined to become a Guide Dog owner as soon as possible.

I understand that change scares you and you are finding growing up very confusing. I cannot keep you safe all the time. You are bound to get hurt by people and by your own restrictions at times. I see how frustrated you get when you can't do the things your friends can. What is truly brilliant is that you never give up trying. We went to crazy golf last month and a happy family outing could have turned really sour as you tried again and again to get the golf ball up a really tricky obstacle. My instinct was to help and then to let others go ahead so we didn't hold their game up. You were absolutely right to be cross with me.  Your words will stay with me forever. "But Mum" you said through tears of frustration, "how can I feel proud of myself if I don't achieve it by myself?" You did get the ball up the tunnel and into the hole about 10 tries later. How brilliant you are and what a lot I still have to learn from you.

I don't know what the next 10 years will bring. I can't promise it will be smooth sailing but I can promise that I will be here when you need a cuddle and to feel safe. I will also be here encouraging you out of the door with your cane or your guide dog., off exploring the world and all it has to offer.

All my love forever,

Mum

Photo of Chloe with a Guide Dog in training sat on a curb. Chloe is holding onto the harness and about to give a forward command. There is a guide dog instructor on the other side of the yellow Labrador holding onto the lead.

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 13^th 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  

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

  

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

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

Mum

Campaigner

Changer Maker of the Year 2014

Writer