Hour by Hour, Day by Day

Sometimes it feels like life is playing a really cruel joke. When it is hard to breathe because everything is so incredibly painful all I can do is to start living hour by hour. An accumulation of the devastating news about our key worker, a really difficult genetics appointment, some of my worries about Chloe and not knowing where I fit in this new life has left me struggling. To be honest I have had moments this week when I feared I might never stop crying. Last Sunday morning Chloe helped me snap out of it by asking for food, giving me the most enormous cuddle and telling me I was the Mummy she always wanted . She can't see my tears and I try to make my voice sound happy as I would hate her to worry about me. Worrying to her is a seriously overrated emotion. She often says "you mustn't worry Mummy I'll be alright." She will be but not without a lot of hard work and with me fighting for what she is entitled to. I had hoped that now she is at school I wouldn't have to hold on quite so hard but it seems you cannot relax for a moment.


This week I have been reminded what a complex and unusual case Chloe is. She has no syndrome or illness that resulted in her profound deafness and severe visual impairment. It has taken years of painstaking negotiation and effort to develop a package of support that meets her needs and recognises her potential. At times the journey has felt like a nightmare. The early years were full of hospital visits, trips to London and Bristol and hundreds of meetings in our home. One of the hardest things for me was that none of the experts invading our lives could tell us why this had happened or what to expect for our daughters future. I wanted them to have the answers but no one did. It was really clear that the professionals from the world of hearing loss and visual impairment were not used to working together. It took far too long to agree a communication passport for Chloe which was essential for her well being. In this world of unknowns our Rehabilitation Officer for Visually Impaired Children quietly and calmly took control and saved our family.

Now I have cried my tears I am determined not to give up our wonderful key worker without a fight. The senior managers from Virgin Care are oblivious that their money saving decision will have such a negative effect on my family. They have the power to knock me off my feet and render me speechless but not for long. I have been in touch with the legal team at Sense and under the Deafblind Guidance Devon have a responsibility to provide the family with a lead professional from Integrated Children's Services. To be told our case has been transferred to a general team without specialist knowledge with no warning or consultation is not acceptable. I might be shattered and disillusioned with the system but I owe it to Chloe to speak up. I am bringing in reinforcements and building up my strength day by day. Its the least I can do for my beautiful girl who despite all the heartache is the daughter I always wanted. 

When the World Comes Tumbling Down

I have been having such a lovely if exhausting Easter break with my beloved daughter. The week away with my family was brilliant fun and the cousins played together extremely well with Chloe delighting in bossing everyone about. We swam every day, went to the beach, ate food together each night and enjoyed being amongst the bustle of a large family. Our girl beamed and Neil and I did too. Since we have been back in Exeter Chloe and I have had fun on play dates, day trips to the beach, visits to the park and two separate visits to her favourite local attraction complete with bouncy castle, soft play area, big slides, trampolines and a massive pirate ship. Yesterday we went to an open day at the Donkey Assisted Therapy Centre where Chloe overcame her understandable fear and rode a handsome donkey called George for the first time. I have been so happy sharing precious moments with Chloe that even her innocently requesting seeing goggles for her birthday hasn't spoilt my positive mood. Until I got a phone call on Wednesday morning that has shaken me to the core and left me with a massive knot of anxiety in my stomach.
On the day we took our tiny, profoundly deaf baby to the eye hospital and were told that she had very poor vision we were referred to a service which rescued us from the brink of despair. Rehabilitation Officers for Visually Impaired Children (ROVICs) are there to help steer you through the roller coaster journey of raising a visually impaired child in a sighted world. We started having regular visits from a wonderful lady (Super S) who came with a magic bag of tricks to help stimulate Chloe's vision. She was calm and reassuring from the start, helped to give us hope for our little one and best of all became our key worker.
When your child has complex needs and you are involved with a number of health and education professionals you are entitled to have a lead professional who coordinates services and makes sure a clear plan is being followed. In the early years we had around fifteen professionals involved in supporting Chloe and they didn't always agree. Trying to negotiate our way between professionals in the world of hearing impairment and those in the world of visual impairment was sometimes tricky. Then there was genetic investigations, communication issues, physical development, countless appointments and targets to achieve. Super S not only helped us shoulder and come to terms with the weight of responsibility we felt but cleared the way ahead for us so we always felt our child (even with such massive sensory losses) had a future. She helped with the countless forms we needed to fill in to get the support we were entitled to, brought round equipment that responded to Chloe's needs, listened to all our fears and sadness and told us we were doing a good job even when we felt inadequate. She has been our champion from the start and has helped make an extremely difficult situation bearable.
Our wonderful key worker could see how remarkable Chloe is and has stood up time and time again for the deafblind children she is lead professional for. When my husband broke his leg on Chloe's first birthday during the run up to her Cochlear Implant operation she got us the emergency care and support that stopped me from going under completely. She has helped families at breaking point by coming and listening to their troubles and actively seeking to change the situation for the better. You can probably see where this is going........ .On Wednesday at 9.30 S phoned me up to let me know she can no longer be our key worker. Case loads are stretched, targets are not being met (because there are not enough ROVICs to meet demand) and sadly something has to give. We no longer have an allocated key worker and if we have a crisis or things change for Chloe I now get to ring a number and speak to someone who I have never met and who doesn't know Chloe or our family. It makes me feel sick, vulnerable and scared. I would not have got through the last five years without this lady. I feel so lucky that we have had her, every disabled child and family should have a lead professional fighting their corner and speaking up for them. I know Chloe will go on and reach her potential partly because we had Super S working with us, pulling everyone together and steering us through the unchartered territory of our remarkable deafblind girl.
Chloe is still a complex child with lots of professionals involved in her education, health and social care. She is still profoundly deaf and registered blind and is on the deafblind record for Devon. None of that has changed. We are more stable as a family and the future for Chloe is a lot more certain. The rational side of me recognises these facts. I also understand there are younger children who need the skills of this remarkable lady. However I can't help feeling utterly bereft, rudderless and isolated. We have lost our champion and I don't feel very brave or positive tonight.              

How Implants Have Changed Chloe's Life

So this week we have been talking to a lovely reporter about the difference Cochlear Implants have made to Chloe's life. It has felt very emotional because I have revisited the shock and trauma of the first few months of discovering she was not only profoundly deaf but blind. We were negotiating when the photographer should come and take photos when unfortunately Chloe got sick and we ended up in hospital for twenty four hours while they reduced the swelling in her throat and brought down her temperature. This made me reflect on how difficult it is to be in hospital with communication issues. Trying to wake her up to take her medicine when she couldn't hear (her processors are removed at night) and couldn't see what was happening was traumatic for both of us.

We got home caught up on some sleep and then the photographer came round. Our story has gone global and it feels very strange but I hope it raises awareness of deafblindness. Implants do not fix Chloe's deafness but they have opened her up to sound and enabled her to participate in our world, though it will always be on her terms. Lots of congenitally deafblind children are not suitable for implants. Their families have to concentrate on communicating with their children through touch, objects of reference, pictures and signing. You concentrate on what your children can do and charities like Sense are vital in offering support and guidance.

We are so proud of Chloe and now more people will get to see what a super star she is.

http://www.dailymail.co.uk/news/article-2595291/WATCH-Moment-deaf-girl-given-gift-SOUND-mother-tells-miracle-implants-transformed-daughters-life.html

A place where we belong........

When Chloe was born almost six years ago it is fair to say our world wobbled and spun in lots of directions. The new born hearing programme meant that we knew she was profoundly deaf at one month old and then when that was sinking in it became apparent she really couldn't see either. It was utterly devastating, so hard for our brains to comprehend the information we were being given. At that moment of diagnosis, when we registered her blind I left my old self behind and embarked on a new life with my deafblind child. 




Trying to negotiate Mummy and Baby sessions when your child is disabled or has a health condition is really tough. You are so full of sadness that every reminder of what your child can't do is like a dagger through your heart. I stopped going to the health visitor's groups as I didn't want to weep or feel envious of all the other babies who were looking round and reacting to sound. I smiled and made my excuses while inside I was screaming, "it's not fair." In the end the nursery nurse from our local children's centre taught me baby massage at home where I felt safe. It was such an essential tool for communicating with my baby. Survival instinct helped me to realise I had to learn separately from the other Mums who were so far away from my reality of being a parent. I felt like an alien who was on a totally different planet from everyone else.




I was slower to realise that 'Music with Mummy' was not going to be a rewarding experience for Chloe and was just tortuous for me . I endured it because I wanted to do something normal with my new friends from NCT. For three or more sessions I  struggled to put Chloe's hearing aids in and tried to keep her calm and engaged. Eventually I accepted that it was not the right environment for us and didn't return. I still saw my NCT buddies at each others homes or at cafe's where we discussed breastfeeding, nappies, sleeping- all the things new parents share. They were not experiencing life in the same way as I was but they had seen Chloe growing in my tummy and it was somehow alright to discuss the latest horrific hospital visit with them. I am pleased to say we still meet up when we can and I know Chloe is valued and accepted by the children. It was gorgeous to watch her go off last year with her friend Olivia who guided her round the soft play area and gave my hips a break. Moments like that are priceless and help me to feel less panicked about Chloe's future.



At times I still feel like an alien because my world has changed so much. I didn't attempt to go back to work until Chloe started school. Supporting her independence, keeping her safe, teaching her to listen and understand sound, introducing pre braille and cane skills, liaising with professionals and ensuring her Statement of Educational Needs was fit for purpose was a full time job. When I found a part time arts managers job when she started school I thought I could step back into my old life but I was wrong. Chloe wobbled big time and there was not enough of me to give the job what it needed. After five months I admitted defeat and went back to being a Parent Carer. Sometimes I feel totally lost in this life where I am fighting my Child's corner, helping her to stay safe but be independent, learning Braille grade 1 and 2 so I can support her education, organising appointments and ensuring we meet up with others who experience life like we do.



We still steer our way between the 'normal' mainstream world and the world of disability and difference. I have a incredible group of friends who have visually impaired children. Some who I have not met but we communicate via facebook. Responding to each others posts with our own stories, advice, guidance and support. I am on the committee of Moorvision which supports visually impaired children and families in Devon.  Meeting up with the families in the group to hang out and have fun is just like coming home.  Long cane sizes are compared, Braille notes passed around and the children come away knowing they are not the only one. As parents we get to be with other families who are similar to ours and it breaks the isolation you can feel. Chloe and I had a wonderful day last Saturday doing tactile art with some of the group. When I tucked her up that night I could tell how much she had got from the day. She fell asleep singing to herself, she was so proud of what she had achieved and it was all accessible to her.


I know we also need to start finding our way in the deaf community. Another child has started going to Chloe's class once a week who is also profoundly deaf and visually impaired. Chloe came home so excited that she was going to have another deaf child in her class. We have been part of the cochlear implanted children's support group since Chloe was around six months old and this year I have promised we will make it to at least one social event. I am not sure if any of the other children are registered blind but Chloe will benefit from spending time with another group she can identify with.


It is also important to spend time together just being ourselves. Chloe is so relaxed when she is with her extended family. She knows how much she is loved and feels the sense of happiness you get from knowing you belong. My brother and his family live five minutes away from us and watching Chloe play with her younger cousin is delightful. It warms my heart and Tabby quite rightly adores her. At school Chloe is accepted by her class and they look out for her and understand she is not the same. I also have new friends through Chloe's school, their children accept my child and that is a great starting point. I am pretty good at talking about my world as Chloe's Mum. Unless we talk about these things how will people know and understand? The only difficult thing is they never knew me before but I am trying to let old Jane out as well.


I also have two special groups of friends locally who accept me for different reasons. My dear friends who have known me half my life, who have laughed, danced, cried and stamped their feet with me. They remember me and make sure I don't disappear completely into this other world. And then there is my team of 'Super Friends'  who are also immersed in the world of bring up a child or children with disabilities. They are my support network who I can cry buckets of tears with but also understand and celebrate the huge triumphs that happen on a daily basis. This week Chloe started reading braille to me at home for the first time. She has resisted because she gets so tired after a day of school. It gave me so much joy listening to her sounding out the letters as she felt them with her fingers. I was just like every other Mum and it meant the world to me.


Happy Mother's Day to my friends, old and new. You help me remember I do belong.

Here Comes The Incredible Sunhine Girl

I confess I was still feeling the hangover of extreme sadness on Monday. I was tired and sore from letting my guard down. I am delighted to say that once again Chloe has found a way of reminding me not to give up and to take joy in her amazing achievements. My frown has transformed into one enormous grin. All the way through this journey Chloe has astonished us with her resilience and ability to adapt to the world. Being Chloe's Mum is truly a privilege. An early educational psychologist report stated that she is a problem solver. It is so true; she uses smell, touch, memory, hearing and her limited sight to explore, play and learn. 


This week Chloe brought home her year one report and it is an absolute gem of a document. Guaranteed to put the spring in the step of any slightly worn out, worried parent. Her exceptional class teacher really understands and values our unique little girl. With the help of a extended team of people including the school's Special Educational Needs coordinator Miss S is ensuring Chloe is keeping up with her peers.Chloe goes to our local mainstream primary school and it is not easy to assess her against the national curriculum. She reads and writes Braille and hears through her bilateral cochlear implants but needs to learn phonics separately from the rest of the class. Phonemes are reinforced to her in a tactile and auditory way. There is a sound field system in her classroom which ensures she doesn't miss out on class discussions and can hear the teacher at story time and other key moments.


Chloe has specialist teachers who support the education of a child with dual sensory loss. A teacher for the deaf, a braille teacher who spends six hours a week with her and a teacher for the multi sensory impaired who coordinates the package and makes sure everyone understands the impact of being deaf and blind on Chloe's learning and day to day existence. Chloe also has an incredible team of skilled, one to one, multi sensory support workers who accompany her throughout her day. Their knowledge, sensitivity, warmth and encouragement enable her to thrive. They prepare her resources, reinforce her learning with pre and post teaching opportunities, check and change the batteries on her cochlear implants, support her peer interaction, mobility and meal and break times. Chloe also has input from a fantastic orientation and mobility officer who promotes her independence and teaches her cane skills and a speech and language therapist who inputs when necessary. A life changing team but I have to say it is Chloe who is exceptional. She loves to learn and delights in pleasing people.


Today I got a 'golden phone call' from the head teacher of Chloe's school. Parents are rung when their child has achieved something great. Today Chloe wrote a warning sign about monsters in the night garden totally independently with a brilliant use of phonics. How clever, how mind blowing that she is achieving these goals.


Her brilliant report states: 'Chloe is a wonderfully determined, motivated member of 1PS. She thrives on challenge, enjoying finding new ways to approach and solve problems. During her time in year 1 she has grown in confidence in all areas and has become fully integrated within the class. Despite the daily challenges that she faces she is consistently happy, enthusiastic and an inspiration to us all.'


Nothing is going to stop our beautiful, determined sunshine girl. My heart is full to bursting with pride and love. The sun is out, all is well with the world.

Super Mummy with a wonky cape

Tonight I feel exhausted. We have had a lovely day in the sunshine but overall it's not been the best weekend. This is because yesterday the sadness got through my armour and left me reeling.

Being Chloe's Mummy is a pleasure and a privilege. She tells me many times a day that she loves me and I get the best cuddles in the world. I pride myself on being someone who gets on with it. I celebrate all her incredible achievements and help her to feel that she can do anything. That's my job, helping her find a way in this world despite her dual sensory loss. We are so proud of her and grateful that she lives in our world alongside us. I love the fact she thinks life is fantastic and her Dad and I want to help keep it that way.

Sometimes however the sadness hits you right between the eyes. You cannot duck because it comes out of nowhere and you are temporarily trapped with the all consuming grief. Yesterday we were at her best friend's birthday party with twelve other beautiful twirling girls and I really felt her difference. The party was perfectly pitched and Chloe enjoyed herself but there was no doubt she needed me there with her. The fantastic, darkened disco room complete with flashing lights and loud music was a little girls dream-  just not my little girl. She was on my lap having a cuddle and trying to adjust to her surroundings while I held on to her and held back the tears.

The fact is it was a lovely party and Chloe's friends did look after her. The hostess was kind and thoughtful to her and as we left told Chloe a party wouldn't be a party without her there. What an absolutely gorgeous thing to say and it made her day. Unfortunately there was no getting away from the fact I had a very big wobble.

We got back home after seeking sanctury at another friend's house. I then preceeded to shout at my poor husband in a vain attempt to help me feel better. When this didn't work I got into bed and
howled. I let go of all the every day things that hurt but I try and brush aside. The way people stare at Chloe as she walks with her long cane and the occasional quiet and not so quiet conversation about  the blind child. How she wants to give everyone a hug and can't tell when her peers don't like it.  The scooters that rush past us on the way to school and give her a fright. The way she tries to run after her friends and loses them. The fact she finds eating so difficult in a noisy environment. How she works hard to interpret sound through her implants and can't tell us yet when her batteries have run out. The knowledge that she is embarrassed when she doesn't know who her friends are and sometimes is ashamed she can't see very well.

So I sobbed for a couple of hours, posted on Facebook and received some very supportive comments.
I made a promise to myself that I would adjust my Super Mummy cape as it had definitely slipped and put my armour back on. Chloe had no idea that I was sad. My biggest wish is for my daughter to carry on being the amazing, extraordinary, brilliant, happy little girl that she is. Life has more barriers for her, it is unfair but I want to give her the strength and confidence to feel anything is possible. So tonight this Super Mummy is very tired but I am ready to fight another day.

A rare child with an inspiring story

I have been meaning to start this blog for ages, but for some reason kept putting it off. On Friday it was rare disease day and this has spurred me on. My little girl is as rare as they come. Born deaf and blind as our geneticist pointed out both her sensory losses couldn't really have been more severe. Thankfully she doesn't have any other cognitive or health issues and she has found a way of being in this world which takes my breath away. We couldn't imagine in that hellish first year that our daughter would have a particularly fulling future. How would she be able to communicate without her hearing or vision?
We have had an army of people helping us from the NHS, social services and education. Five years later thanks to cochlear implants which have given her access to sound we cannot stop her talking. It's just incredible. She has some limited functional vision and she is a pretty competent long cane user. She reads and writes using Braille and has specialist support workers in school. It's not easy for her, she has to work so so hard to be alongside her peers but she is holding her own in main stream school with an army of friends who love and admire her as much as I do.
I plan to let you in on our world. Tell you about her triumphs and tragedies and how I negotiate my way as her Mum. Having Chloe has changed my life in so many ways. I wish sometimes with all my heart that she could see and hear like other children. But I wouldn't be without her despite the excruciating pain that comes with having a disabled child. She is the most warm, loving, generous, stroppy, determined and quite simply hilarious child one could wish for. She makes people smile from their bellies and I hope by sharing snippets of our life you will too.