As I write this our son Daniel now 13 is having his support package reviewed, it terrifies me what the outcome may be, what may be cut, having finally reached a point where we are managing not too badly.
I’ve sat down with Daniel’s care manager, she is new to us and to the local disabled children’s team and I don’t envy her job. I can’t help but hope that she will take the time to get to know us before she makes recommendations about Daniel’s package and that the savings the local council need to make will be secondary. I have to say however through talking with her it’s helped remind me why I carry on, why we carry on.
The truth is simple, it’s our love for Daniel and all he has taught us. I have to confess I was ignorant before he came along, ignorant of the families out there fighting day by day to stay together. Of battles with the medical profession, with education, rounds of appointments, of heart ache and loss. Daniel’s outlook on life is simple and innocent, he finds fun in everything, and I love his sense of humour; the way he laughs so hard sometimes he doesn’t know what to do with himself.
He surprises me constantly and I am so proud of how far he has come over the years. It’s so easy to forget where he started and where he is now. I cannot imagine life without his hugs and kisses. I love the affection he feel so strongly for his family and friends. What once seemed like problems or major disasters in our life have taken on new meaning.
Our life with Daniel has never been straight forward, at times it’s been heart breaking, I’ve been through spells of sleepless nights, nights filled with nightmares about the future, and I’ve woken in tears. I’ve suffered depression, exhaustion, stress related illness. I’ve had to watch Daniels brother miss out on normal childhood activities, to grow up too early. I’ve had to watch his Dad struggle to come to terms with what he cannot fix, having to adapt our house for Daniels safety, having to extend the mortgage to build an extension to help us manage his sleep and behaviour.
Through Daniel I have met some amazing people, people who genuinely care. That want to change things for the better. Daniel has some fantastic support workers and I have such admiration for what they do; they make such a difference to our lives. I dread the thought now and wonder what effect it will have and what distress it will cause Daniel if we have to lose any of them and the additional strain it will put on us. But whatever happens we will adapt and fight on to ensure you reach your potential and have a full and happy life.
Yvonne, mother to Daniel who has Smith-Magenis Syndrome and ASD
This article appeared in an edited form in the Summer newsletter 2014.