Friday, 12 September 2014

New Term New Glasses

Chloe looking proud with her cane on the first day back

I can't believe that my little girl has started year two at school. I don't know where the time has gone. The summer has passed in a blur of activity and fun with the usual measure of stress thrown in to keep things interesting. This summer we had a number of hospital appointments and the dreaded care plan review to contend with without the support and guidance of a key worker. 

One of the outcomes of our visit to the eye clinic is that we are trying glasses again because though they cannot correct her overall eye condition they could help her focus using the tiny bit of peripheral vision she has. In the past glasses have proved a big issue as the sides have rubbed on sensitive scar tissue, her processors have been pushed off her ears and they seemed to make her less stable on her feet. Last year after being prescribed new glasses she was bumping into objects in her class room and at home and she kept taking them off and posting them into small spaces until they mysteriously disappeared. As we sat in the clinic after seeing a new optician who recommended trying them again I admit I had my doubts and rebellion was rising in my heart. The last time we tried was so stressful for all of us. My instinct is to be good and do as the professionals recommend, after all they are the experts, but their text book theory does not always prove to be right for every child and Chloe is just so unique. 

This time being good might just have paid off. The dispensing optician took lots of time with Chloe, They made sure the frames were large enough so her eyes won't wonder above or below them, they fitted the sides so they won't slip or rub and best of all Chloe found frames she really likes. We collected the new glasses on Saturday and so far so good.They make her eyes wobbly when she tries to watch the ipad or television but she is managing to wear them with no accidents at school . They fit really well and Chloe can put them on herself. 

Chloe reading Braille with her new glasses on

One of the things I love about Chloe is how willing she is to give things a go. I held the memories of the frustrations and difficulties we had previously and tried not to articulate them to Chloe. She wants to please people and responds well when professionals take the time to explain things to her in language she understands and with energy and enthusiasm. She is determined and with everyone around her saying how gorgeous her new glasses are perhaps this pair will not do a vanishing act. If they do perhaps it will be time to take note of what Chloe is trying to tell us.  

As we walked through the play ground last night a fellow pupil asked whether Chloe could see now she has glasses. How I wish with all my heart they had that power. The cochlear implants give Chloe really good access to sound but she is still profoundly deaf. No magic eye doctor can make her rods and cones work properly, There is no surgery or treatment available but the glasses seem to help a little and that is a huge consolation prize. 

Chloe proudly reading her Hands On Braille book to me

Sunday, 10 August 2014

Going the extra mile

Chloe meeting Peppa Pig and friends

Yesterday we went to the theatre. This was a very big challenge as Chloe cannot follow the action on stage and even though her Cochlear Implants give her access to sound noise can be overwhelming and individual voices very hard to follow when she can't see which direction they are coming from. We had an incredibly unsuccessful trip to the pantomime in January which resulted in her clinging to me having removed her processors. She lasted a whole ten minutes from curtain up and I felt like I had subjected her to torture.

I love the theatre and hadn't yet admitted defeat so determined to have another try I booked us tickets for Peppa Pig's Big Splash at The Northcott Theatre. Initially she was really excited as she adores the Peppa Pig cartoon, it appeals to her sense of humour, the character voices are really distinctive and the narrator makes the story easy to follow. Last weekend I started talking to Chloe about it to prepare her and my heart sank as she said she didn't want to go to the theatre even if it was to see Peppa Pig. The tickets were not cheap and I wanted to help replace her bad memories with good ones so I decided to take positive action. I emailed the Northcott outlining my concerns and what would make the experience more inclusive for Chloe. I heard back straight away from the press officer for the touring show who did everything in his power to help us. We got seats further forward, he arranged for the Company Stage manager to liaise with me and sent us the script. On Friday night over dinner I read through the script with Chloe, explaining exactly what was going to happen, which characters to expect, what the audience would shout out as well as the all important stage directions.This helped to paint a picture in her mind and enabled her to keep up with the story on stage.
A delighted Chloe meeting Mummy and Daddy Pig

What made it really come alive for Chloe was the backstage tour before the show where we met the characters, Chloe touched their noses and shook their hands. She loved  Peppa Pig, particularly as the puppeteer made her giggle. Chloe even repeated some of the lines back to Mummy Pig as they were fresh in her mind., I could see how magical it was for her and during the show she remained transfixed.. She wasn't scared by the noise as she was expecting it- in fact I think she was one of the loudest audience members. She loved being splashed with water and joined in with the songs loudly and out of tune. I am so grateful for the cast and crew of the show for enabling Chloe to take part. She was fully included and responded with joyful enthusiasm which I hope they could see. This is a memory that will stay with us both for a long time. I am proud that I asked on her behalf and so delighted and grateful that the Northcott Theatre and Peppa Pig live team made it happen.

Looking very excited with her new flashing George windmill

Tuesday, 29 July 2014

Reflections of a Parent Carer

Chloe and I on my birthday at Peppa Pig World

I have not posted for a while because of a significant event in my life, I turned Forty. I know it is meant to be the new thirty but it felt like a really big deal. It is not that I suddenly feel old (though some days I am so tired I feel twice my age) it's that it made me reflect on my life.

Success is our world is measured by home, family, work and health (including emotional well being).We like to be able to put people in boxes partly based on what they are contributing to society. When we meet people for the first time we naturally ask "what do you do?" Meaning what job do you have. "I am a parent carer" is not the easiest reply to give. Its not what I trained to be- I have a Drama Degree from Manchester University and a Post Graduate Diploma in Community Theatre Enterprise from Liverpool Hope. Before I had Chloe I was an arts manager part time and drama specialist part time. I ran a theatre company with learning disabled actors for three years which I loved. Sometimes that part of my life feels a distant memory yet I have kept in touch with the company of workshop artists I belong to and I have worked with them at least once a year since having Chloe. It's just not my main role any more.

In the lead up to my birthday I was struck by how much in limbo I feel. Chloe is becoming more independent yet in some ways she needs me more than ever. In the last two weeks before school broke up she was so hot she dropped my hand and walked independently with her long cane. This is a significant step forward for her (and me) and one I will be encouraging. It is so hard to let go, particularly as listening with her processors next to traffic is difficult for Chloe. Trying to develop her confidence while keeping her safe and aware of her limitations is vital, another key role for me.

I have to admit that my baby is growing up. We both need to separate a little but at the same time I know I give her the emotional security to go and try new things and go off with other people. It worries me that she would feel abandoned if I went back to work full time and I am not sure what I would do. In so many ways I am Chloe's champion. It felt really good teaching her school Braille skills for the summer fair and I think it helped her self esteem knowing that the rest of the school wanted to understand how she learns. At home we often sit and Braille together, sounding out each letter as we go. She needs to know she is not the only one who learns this way and that I understand the language she uses to read and write. Neil has also been taught Braille but it is my job to keep it up so I can carry on supporting Chloe in the best way possible.

But what about me?  Where do I fit in this world and what do I want next? I tried going back to Arts Management and it was just too stressful. I had to admit how much my life had changed and that I can not give what I used to. Maybe I don't care as much either. I don't have much energy or passion left after supporting my family. I am driven by wanting to get the right provision for my child so she can reach her potential. I want to speak up for the other families I know who are struggling to get commissioners and professionals to understand the impact of multi sensory impairment. I am happy to champion the cause of Deafblind children as it is the world we have inhabited for the last six years.

I adore being a Mum but all my love has to be focused on one child as Neil and I cannot have any more thanks to early ovarian failure. This is something I am still coming to terms with. Despite my grief I can acknowledge Chloe gets the benefit of our undivided attention and it makes us an incredibly strong, imperfectly formed family unit. I do have a wonderful husband, Neil who is a lovely man and amazing Dad but a very private person so I don't like to mention him in this blog too often. The three of us went away to Dorset for a long weekend to celebrate my birthday and had a fabulous time. I spent the actual day of my fortieth birthday at Peppa Pig World. A fitting tribute to Chloe, the biggest achievement of my life. The following weekend I had a big birthday bash with friends and family because after all, I might not know what is next for me but I certainly have a lot to celebrate.

Sunday, 29 June 2014

Raising Awareness

So Deafblind Awareness Week is over for another year. For me it started with delivering a formal letter to our County Council on behalf of a number of families raising concern that our deafblind children have started to fall through the gap of social care and health provision. With all the cuts happening perhaps it is not surprising that we are feeling the effects of less money. So many services are becoming more and more target driven and we can no longer expect a consistent level of support. Professionals come and do a short piece of work to meet an identified need, write a report which is sent round to the rest of the team, hopefully people respond to the recommendations and the whole cycle starts again. The trouble is that the issues and barriers that come with being Deafblind don't go away. Families need ongoing support and professionals working with their children who understand M.S.I. Other families I know from our Sense family support group have experienced professionals with no understanding of multi sensory impairment who conduct assessments, express they can't meet the need of the child ( as they are so complex ) but do not offer a solution. This has a terrible effect on the whole family. When Chloe was a baby it took nearly 15 months to agree on a communication passport (the tactile, on body signs and objects of reference that enabled her to take a more active role in her life). We have been lucky however that all the nearly 20 people involved in Chloe's care plan have been prepared to meet and puzzle out together how to teach her, support her and meet her health needs. I fear had she been born in 2014 we would be having a very different early years experience. The beginning of last week was about speaking up on behalf of our unique children. Parent power goes a long way and rather than being stuck with our offspring not being seen, heard or understood we decided to take action. I hope the matters we raised are being taken seriously and investigated.

The rest of the week has been about sharing with others some of the new skills I have learnt through Chloe. It was the school summer fair on Saturday and I decided I would like to do a Braille stall. The school were very supportive and I had a clear week so I went into the school three times and taught some year four children grade one Braille. It gave me the opportunity to discuss with the children how Chloe learns, how much extra input she needs and also show them my braille skills. They were fantastic, very responsive and interested. Some of them decided they wanted their own Perkins Brailler but when they felt how heavy they were and that they cost around £600 they changed their minds.

I loved being part of the fair, having a stall which offered bespoke Braille bookmarks with my five volunteers showing off what they learnt. I am sure mistakes were made but it was only Chloe and I who would have known. I had some excellent feedback and in a world where I am still figuring out my place it gave me a real boost to be able to demonstrate a new skill I have learnt thanks to my beautiful girl. She came to the fair but it was far too busy and noisy for her to cope with. She was going to help me on the stall but opted for the peace and quiet of home instead. Life isn't easy for her, she will never be able to participate in the same way as her hearing and sighted peers but she is a valued member of her local school. On Saturday I was raising awareness and advocating for my incredible child who is finding her way in life. I am so very proud of her and I am pretty sure she was proud of what I was doing on her behalf. I am already planning what I can do for the Christmas fair. 

Tuesday, 3 June 2014

Growing Pains

Our little girl is growing up- today she told us she had her first wobbly tooth, so sweet and so poignant. In ten days time she becomes six. My goodness where have the years gone? I hope with all my heart that she carries on being the secure, funny, loving and determined girl we love so much.. Growing up and becoming more aware causes its own heart ache.
The following letter is my tribute to her.

Letter to my deafblind daughter who is beginning to understand she is different

I cannot begin to tell you just how proud we are of you. You are such a warm, loving, funny, engaging and determined little girl. Nothing seems to faze you even though you have incredibly poor vision and hear through cochlear implants. You have always had this incredible knack of exploring the world and making the most of what life has given you. I am so grateful that you are courageous and happy.

People can’t help but warm to you. You throw yourself into life with such gusto sometimes it takes my breath away. It can also scare me a little and I know I irritate you when I tell you to be careful.  I really don’t want to place any limits on you. You are only five and blissfully unaware of the barriers that lie ahead. Perhaps that is the best way to be but I know I can’t protect you forever. You are extremely bright and a really deep thinker, you will work it out.

I have begun to notice little changes that indicate you are losing some of your bravado. You no longer want to walk across the playground with your friend in the morning.  It always amazed me that you didn’t mind walking alongside the other children with their unpredictable bustle and noise. Now you have changed your mind and need me to guide you.  You stop talking and I can feel you tighten your grip as people whizz past. This upsets me and I have to lean down to encourage you to keep going. I will always do this no matter how big you get or how scared you feel.   

You are starting to talk about how your eyes don’t work very well and I know you feel embarrassed when you can’t recognise your friends.  I never, ever want you to be ashamed of your dual sensory loss. Your eyes and ears don’t work the same as your peers but this makes you the tenacious, inspiring little girl who we love so much. Thankfully we have an extended network of friends who have children with visual impairment. You really love meeting up with other children who use long canes and are learning through Braille. It reassures us all that there is a community where we belong. People who understand and can share our day to day existence, triumphs and tragedies.

You asked me today about whether you can meet other children with very poor vision and cochlear implants. Oh my darling one, you are unique. Not one of the many professionals that fill our lives has ever met a child with your eye condition who is also profoundly deaf. It is unfair and so incredibly sad for all of us. Daddy and I dread the moment when you ask us “why”?

In that first hellish year the geneticist told us that you couldn’t have been born with any worse hearing or vision. Well you carry on astonishing everyone with your progress. I want to keep filling you with confidence and pride in who you are and what you have achieved. I hope you know just how lucky we feel to have our little sunshine girl. I can’t wait to watch you grow into your life and promise I will carry on clearing the way ahead for you.  My job is to keep you safe, encourage you to be independent and make sure you know just how extraordinary you are.

This comes with a great big cuddle.

Your Mummy x

Tuesday, 6 May 2014

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. 

Friday, 18 April 2014

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.