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