“Hitting 25, does it get easier or harder”
Hitting 25 everything gets harder and if you don’t have a label (which I hate) you have to fight for everything and Jess is unable to do this on her own! Recently Jess became partially sighted through eye surgery. Very little sight in her right and not perfect in the left, but we cannot register as her partially sighted because her left eye is too good! So we have gone through yet another assessment as the 12 hours care she receives to live on her own is not enough to cover her needs though better than the 2 she was originally awarded, but took legal action to get the 12 hours. But that assessment took place in May and still no news. We have been told she won’t lose any as can happen when a re-assessment takes place! Then there is the match funding out of Jess’s benefits for her direct payments, the yearly reviews, the change over from DLA to PIPS. I could go on.
Guilt! It is always there and no matter how hard you try to push it to the back of your brain it somehow worms its way back to the front. Was it my fault Jess is disabled, did I do something wrong during pregnancy? I doing the right thing in sending my child to a special school or should they remain in mainstream schooling? People say things that make you think you are a bad parent such as “should you really allow your daughter to do things other children do?” “Should you not live with your daughter?” But the hardest thing is trying to explain why you will go to the end of the earth to protect them and see they are safe, because they are unable to do this for themselves. Both my children are my world and I love them so much but with a child who is so vulnerable you go that extra mile!
But there is another side to all this. Despite all Jess’s difficulties I wouldn’t change her and I know her dad wouldn’t.
Jess has achieved so much in her life and we are so very proud of her. Jess now works 2 days a week in a garden nursery, she volunteers at a day centre helping to teach sign language. She is vice chair of People’s Parliament Worcestershire for disabilities. She as joined a signing choir. She does Special Olympics, 3 years ago winning gold and silver medals at the national games.
More recently our second book was published which we co-wrote. As story about a disabled fairy called Jess. www.jessthegothfairy.com Jess is a fairy who looks different but just like Jess herself all she wants to do is be accepted in her community and help others. Jess tells me how she has felt growing up and we try to put this into words. The first book ‘Jess the Goth Fairy’ is about bullying the second about looking different. The message being ‘it’s ok to be different as we are all the same inside!’ The journey it has taken us has been amazing. We visit schools, colleges and disabled organisations where I read our story and Jess signs it. Then she chats to the young people about what is like to be disabled. To see her stand up in front of 200 pupils on her first visit and answer questions of any kind was so emotional and such pride! Seeing these young people who perhaps have never met someone who looks different, nervous at first, but chatting to Jess is wonderful. Jess also encourages them to go for their dream no matter how small, and more important ‘Never give up!’
We also talk to new police officers and GP’s about the stresses of independently living in the community not only from Jess’s view but mine as well as a parent/carer.
I suppose where I am coming from, is yes, there are moments of sheer desperation and these are never going to go away the 24/7 worry question no one will answer “What happens when I am not here?” But there are the magic moments such as the gold medal or watching Jess at People’s Parliament or just having that voice smiling down the phone saying “I love you mum”
To all parents who have a child that needs that extra bit of help along the way, it’s so hard and there will be days when you just sit down a cry and shout at the phone or just want to give up. Don’t, keep fighting and if we all do this we can make a better, safer life for our vulnerable young people.
