Saturday, 29 March 2014

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.