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JAMES' STORY

'I am in here! Don't stop looking for me. Don't stop looking!'James' story:My name is Carol Weller and I am James Weller’s mum. Here is my story of James’ Chickenshed journey.James’ involvement with Chickenshed started when he was five years old, more than twenty-three years ago now. He has taken part in many productions over the years. He especially enjoyed the Christmas shows, the music, the dressing up and all those extraordinary finales.Today James is an active member of the 'Tales from the Shed' team at Chickenshed, helping to deliver theatre to a wide range of young children at different venues locally and as part of the outreach team. He is delighted to be involved, just to be there.What makes this experience so magical for James? Primarily, without a shadow of a doubt, it is because he has fun and is accepted for the young man he really is, part of an inclusive team, and there without prejudice.Learning about himself and others, communicating his needs, his type of humour, his feelings, but also, understanding that the show must go on, whatever happens. He is part of something worthwhile, purposeful, very special, and he feels that energy and its strength.It is a place where like-minded people share their love for performance art, and where it is ok to dress up and express yourself without the need for words.It is also a place where there are no rules to say a fish can't play a violin or a parrot can't drink a cup of tea... if they want to.There are many magical moments in this sort of atmosphere; many tiny pieces of “the Magic” that defines expression.James is with people of his own age, who accept him as one of them, part of a team. His contribution is genuinely valued. It’s a place where his personality, independence and his dramatic art skills are carefully nurtured and given the opportunity to flourish.To feel safe, engaged and understood feeds our lives. Even chips in the cafe with 'Tales from the Shed' creator, Pete Dowse - his mentor and all-time hero - has a similar effect.Limits should never be set by perceptions of disability. When we actively look for qualities within each other and overcome obstacles, anything is possible. We make it so.That's what the Tales team does for James. That's what's so special for him.The Tales Team have created a beautiful video showing James at Chickenshed – it includes a letter that I have written to my beautiful sweet James, which you can also read below.Dear James,Hello, my lovely young man.A pivotal day, the 1st January 1992, it was the day we welcomed you!Chase Farm Hospital, weighing in at an impressive 9lb 3oz, you were checked over and pronounced bouncingly healthy. We went off home in a cloud of euphoria. Life was busy and difficult in many ways at that time, but it was also lovely, in that screwball sort of way that is getting to know a new baby, you! Life goes on. The moulding of a family had begun.However, unwrapping and getting to know you took rather longer than we had first thought it would, you were so different from your older brother.James, you never seemed comfortable, you slept intermittently, cried lots and vomited a great deal. Nothing I did seemed to work. You mystified us."You really are being over anxious Mrs Weller, there is nothing wrong with your baby... he is perfectly fine! Now go home and enjoy looking after him, he is your second child after all, you have done all of this before!" said the doctor flippantly.I still see that young doctors face when I think back. I could have hit him, what did he know of the struggles we were facing every day and night.Dear wonderful James, we remember your beautiful smile during those difficult times. It kept us both loving you, kept us going... but something wasn't there.You were trying to tell us something. Getting us ready for what was coming. The mystery that was you - the unwrapping, the unlocking… the truth.“I am in here! Don't stop looking for me. Don't stop looking!” everything about you seemed to say.So, we kept searching. We kept searching for you.James, as you grew older you had such a sweet nature, you still have. You were a delight to look at, with that white-blond hair, blue eyes and a lovely wicked laugh. You melted hearts…You had no words, hyperactive with the attention span of nil, defeated with your attempts to do anything, crying and frustrated with everything. I should have known what to do to help you, but I didn't.Doctors again… I referred you to our local paediatric team. You would have been about two years old. The mystery that was you continued.Spinning tops and lids, smooth textures and lots of colours, you loved them all. Winnie the Pooh, and Tigger too. Wonderful metal springs! Rolls of paper, books and music, stories and sandpits! Water, lots and lots of water! Trains, more trains, Thomas the Tank Engine and all his friends. Still the elusive spirit of you flickered ahead of us. We almost got you, then we didn't!“Mummy do more, DO MORE to find me. Find me..!”you told us with your eyes.Tigger was especially important to you. His personality, his vulnerability, his off-the-wall-ness, (is that even a word?). You related to him - at last something; a connection. It was a relief, I was okay with that. We worked through Tigger.I began to see you and hear you James, aka Tigger. Running, running, you were always running. You were moving all the time; climbing, mad cap, dangerously spinning out of control. You became overwhelmed easily; a whirlwind of movement and tantrums.You had no words, but trying, desperately trying now, to communicate, yet seemingly shut into yourself. We never stopped searching for you, you know. You were never lost, never.Specialist teaching teams and Occupational Therapists got involved - speech and language therapists, doctors and hospitals - there were so many people! More people would come over the years - many more. It was a whirlwind for us and for you. You just needed time we thought, we were just missing something.Then, one day, the diagnosis came - our beautiful James, our golden boy. It’s Fragile X Syndrome; a life-long disability, a genetic condition, inherited unknowingly from me. You were 3 years and 10 months old!Whatever our dreams and aspirations might have been for you lovely James, whatever life might have held, if the spin of chance had been different… Can I tell you, it is hard to know that you, our child, would never marry, have your own family or be able to live independently! You were so young James, it was so unkind, yet we knew it then.We didn't even know that these things mattered to us, that we held them in our hearts. Somehow, they were our dreams for you, until it becomes apparent it was never going to happen – ever! Grief is a strange thing. We were looking right at you and grieving at the same time.We were grieving for the little boy we thought we had. You just needed fixing and a little more time to grow up. But there was no making you better or fixed, this was you. No amount of therapies would fix that. They were very dark days indeed. You see, dear James, we never stopped searching, but we had been searching for the little boy we wanted you to be. We had to let that little boy go to be able to find and love the little boy you actually were. The boy you were born to be.Eventually, still hurting, the light began to come back. Nothing would ever be the same again, but James you were still our boy, and we loved you. Nothing had changed for you. You still had us, your brother, grandparents, your home, Tigger. For me no sleep, you started your day at 3.45 am or earlier. It was tough.But out of me had come your problems and out of me would come your solutions as well. We would love you, the real you, loving and accepting all over again. This time, however, we were seeking some different horizons.Capes, gloves with longer fingernails, and dressing up began early on for you. You still love to see capes flowing out behind you. I can picture you running on a beach with your cape flying behind you; trains and wheels moving fast, bouncing like Tigger – magical moments of clarity, of voice and thinking.Beautiful you, the unwrapping had begun in earnest. There were so many people and new and amazing places involved in your life journey now James. Schools, groups, very special people. We remember them with gratitude and love. One particular place needs a special thank you.Then Chickenshed Theatre Company! What would we have done without them? It was Inclusion at its very best. A place to be yourself and that was okay with everyone. We volunteered for front of house at the shows. Your grandmother made costumes for you James, beautiful costumes. Do you remember the Peter Pan costume? We still have it stored away at home.Supportive, imaginative, care given seamlessly, that's what we saw. James you were in the production each Christmas time from the age of 7-19. We met some of the most amazing people you could have imagined. The rest of the world needs to pop into Chickenshed from time to time and stay awhile, just to see what is possible when you try to make it happen.More unwrapping, almost there; “come out come out wherever you are”Then… gradually... slowly… was this actually happening... was this the real you? It was! After all these years we knew you. The right place makes all the difference.I'm glad to report that we found you lovely James. It took us time and heartache. We don't see Fragile X Syndrome, we see you James. You are a funny, energetic, an engaging young man full of curiosity. Determined yes, difficult at times yes, but also full of imagination and wanting to be part of the world despite your everything. These are just notes, James. Your life is so much bigger than anything I can ever write down. Thank you for being you.We would do it all again for you.With love x