Theo Lucas Kingsley Monk:
	Our beautiful boy

			The relationship with a child, who is so dependant long after other children have gained a high degree of independence, is very intense. The child with complex learning disabilities becomes an extension of the parent. We knew that Theo would always be dependant on us and so we remained fiercely protective of him. I could not contemplate anyone looking after him for a night. His death was devastating for us. Losing Theo was like losing a part of me. I fell apart and was not comforted by all the things said (in kindness) by other people. I was just terrified that Theo would be lost to everyone and forgotten over time. I wrote the following which was printed in the programme for his birthday concert:
			WHAT DO YOU SAY? What do you say to a grieving parent? What is there to say? Don't say “The first year is the worst” His years ahead are gone Don't say “It's early days” The days are long and of no consequence Don't say “You'll get over it” Grief is not a temporary hurdle put in the way of everyone else's life. It is immeasurable and intangible. It is not an illness. Do not look for a recovery. Do not judge. Do not talk of “moving on”. This implies letting go of him and only heightens the despair. Grief is an intense emotion that can ease with time. Bereavement is a sense of loss that remains. Nothing can change that loss. So what do you say? DO SAY “I miss him” DO SAY “I love him” DO SAY “I will always care” DO SAY “I remember when…” The loss of a child is not in the natural order. It is a parent's nightmare. The pain is impossible to bear. The joy of parenthood is suspended. The future is keeping the memories alive. The future is keeping him here. He is not left behind. Anna Kingsley March 2009
			For me, telling Theo's story is a form of therapy. I have written a story for children from the point of view of having a brother with special needs. It is called “My Brother Theo by Alexander Monk”, and describes the things Theo did. It shows that he enjoyed many of the things that other children will recognise. I have set up this website for parents and professionals to give a personal account of having a child with complex learning disabilities. I learnt so much about total love from Theo and what matters in life. I also spent 6 years trying to include Theo in as many things as possible so that he experienced life in the same way as other children his age, wherever possible. I also felt – and still do – that children and adults with complex learning disabilities should be catered for in leisure facilities. There are too many places that do not meet their needs, even with the DDA in force. I have many friends who are undertaking sponsored events for Theo's BHF fund. However, longer term I am looking to establishing an all inclusive playground so that children like Theo can enjoy spinning toys and swings and whatever else they need IN THE SAME PLACE AS OTHER CHILDREN. There are specialist playgrounds but most families with a child with complex learning disabilites have other children who do not have such special needs. Being able to cater for all children's needs is a tall order but I see it as Theo's legacy that I try to provide something he, and his friends, could use. This will be a long term project to create, maintain and develop an all-inclusive playground. I would appreciate any advice! If you have any advice please contact me on: anna@theo-monk.co.uk Newbold on Stour, Stratford upon Avon, Warwickshire.