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,