Daniel's Story - My lovely Son
Daniel was born at 38 weeks weighing 4lbs. He was taken straight to Intensive Care and put on a ventilator. A shock as we had no idea anything was wrong. However we took just one look at him and, like a bolt through the brain, felt instant and complete love for him.
Dan is profoundly disabled. He can’t eat and is fed by a tube into his tummy. He is very floppy and didn’t sit until he was 11 months. He has had major heart surgery. He may not walk or talk but he is a big character who has brought us such joy.
Our saving grace has been the Hawthorn Family Support Centre, run by Leeds Mencap. I knew that I could look after my son, I love him so much and I can look after his medical needs but I didn’t know how to play with him, how to encourage or teach him. Hawthorn gave me a group of friends, other mums in my position, they gave me information on my son’s disability and information on benefits but… most importantly, they gave me back my little boy because they taught me how to make him laugh, how to entertain and enjoy him.
Daniel is gorgeous – I’m so proud of him. Hawthorn Family Support Centre gave me the skills to play and teach him and how to watch for his progress!
Before Dan was born I would not have known how to talk to a mum of a disabled child. After he was born I sadly lost a number of friends – I felt ostracised – which was not good. So please don’t not talk ...it’s the worst thing to be ignored.
If you meet a parent with a child with a disability say "Hi, how are you?" Talk about your child. Ask them how old their child is and judge by their response how they are feeling. If they tell you their child's age but comment on the fact that they have a heath issue, ask them about it, follow their lead. If you feel it’s appropriate ask them if they have a diagnosis for their child's condition. Try not to be overly sympathetic – they probably don’t want sympathy. It’s ok to tell them you have never met a child with a disability before, they will understand how you feel and will probably help you!
As a parent of a child with a disability I can say that I am not an angel but I am also not to blame for my child's disability – I am simply a mum doing what mums do. Dan is, after all, just a little boy!
Sam Grundy
Vice Chair of Leeds Mencap
