Like so many other parents I identified completely with the article 'We're in this together'. As proud mum of a now 13 year old son, George, born profoundly deaf, with fine motor control difficulties we have been lucky to have had access to a number of family support groups for deaf children including the National Deaf Childrens Society, The Ear Foundation and the Cochlear Implanted Childrens Support Group. The families we have met through these groups remain longterm friends even though family circumstances have taken us across the country.
George attends a Special School which meets his educational needs but outside of school he also plays football for a team of otherwise hearing boys at a very good youth standard. Ultimately George is 'George', always remembered and very much accepted as a young man who is just a little different but able to reach and gain the affection of everyone who knows or meets him. We are truly blessed to have him as a son and I very much understand the comments you make in your article and the forum is a great idea. As a parent of a teenage deaf child if my experience can be of use please contact me. Janet Stockton
My son, Daniel, was born in 2001 with Down Syndrome - I went through all the usual stuff, but came out on top adoring my son and feeling very proud to have him. Dan turned into a lovely toddler and loved his 2 years at preschool. Daniel will be 5 in August, and has started mainstream school at our local village infants'. He is miles behind his peers in a lot of ways, but loves them, and is very happy.
However, I have had to develop a very thick skin - and constantly try not to notice that Daniel has never had a "play date" (of his own - without me inviting a mum over for coffee) or that he is not invited to most of the parties (only the ones where every child in the class is invited). It's hard, but at the moment Daniel doesn't seem to notice or much care.
Also, Daniel is only recently potty trained and still has a lot of accidents - his school have used this a reason for him to only be allowed to stay for lunch with the other children twice a week. Thus, I have been hit with the reality that my son is, after all, different. It is so easy to convince yourself otherwise when your child is still only 1 or 2 (or 3), when plenty of kids are reaching milestones at different ages. I knew I was heading for roadblocks as a parent of a child with special needs, but wasn't sure where they would be. Much is written about those dark days after the diagnosis, but then everything goes a bit quiet - in an effort to put on the bravest face and let the world know that our children are great, not much is written about where the next bump in the road might be. Lucy Mayer
I have just had forwarded to me your article, which is great. Just what the invisible army of parent carers has been waiting for.
When my son was diagnosed with Prader Willi syndrome (14 years ago tomorrow), I admit I faltered for many years but eventually I faced the bogeyman and I won. He still rears his ugly head now and again but he just gets the two-fingered salute!
I now work to help other parents of special needs children. One job is for my county council as a care co-ordinator offering emotional support and advocacy for parents of special needs children. I also work on a self employed basis for the Family Fund ( if you get the chance to advertise their very valuable work for special needs children in lower incomes families, please do so). I have also just started my own company selling preserves to the likes of the National Trust and Jimmy's Farm. This all came about after attending a course for parent carers which gave me the strength to not just dream but do
Please let your readers know that there is life after the devastating news of a child with special needs, it may not be the life you expected( I was a Principal legal assistant with a local authority with dreams of becoming a barrister), but it is a life not a death sentence! Claire Butcher
I read and enjoyed your article "We're in this together". I thought you would be interested to hear from us, as we are a small village school and have a young child with 22q11 deletion attending our nursery class. He will be starting as a full time reception pupil in September 2006. We use Makaton signing, and the child has a full time Learning Support Assistant who is trained in Makaton and in emergency resuscitation, use of the nebuliser and aspirator to help him. He has a Montgomery Tube following a tracheostomy
We work closely with Great Ormond Street Hospital and the Advisory Teachers and Speech and Language Therapy Service in Hertfordshire who have been extremely supportive in the inclusion of this delightful child in mainstream education.
We will always be pleased to correspond with you and have the permission of the child's mother to do this. Stephanie Holyoake, Special Educational Needs Coordinator, Ponsbourne St. Mary's Church of England Primary School
My name is Sally, I have two girls, Louisa, nearly 10 and Ginny eight this week. Ginny has a rare type of muscular dystrophy and is physically disabled.
I know so well what you are writing about. Ginny was first diagnosed with a problem at 12 weeks – up till then I thought I had a perfect child, perfect pair of girls, life perfect, always has been up to an extent (usual problems faced by the time one is 38). We lived in Putney and I had a successful career as a director of a top marketing consultancy. Since all this happened we moved to Devon (when Ginny was nearly one) and our life totally turned upside down.
However, the roller coaster of diagnosis and acceptance is behind me now, and I would like to be able to help you in your efforts to make special needs children more visible, and to help other people realize how lucky they are not to be dealing with the practical problems alone that a child like Ginny and all the others have.
