When thinking about writing this, as Jack’s Mother, I was in a dilemma. Should I, would I, or mostly…could I? One page – one line or a million pages – how do I explain a ‘Life so Extra Ordinary’ for both myself and Jack? Then, of course it was a question of whose world – mine or Jack’s? Then I thought, especially as a single parent with no other children, our worlds are so entwined. Mine so different than his, but my world can verbalize and his can’t. After spending 17 years with Jack, I know I understand so little but more than anyone else. It may be a privilege to interpret someone else’s life but it also may be an impossible task…

I struggle to understand your world – why people stare at me and don’t talk to me. I would talk to anyone if I could and I see lots of you ‘normal’ people not talking for silly reasons. My Mammy lost friends because I was not ‘normal’. I want to listen to my radio at full blast all the time and I want to turn taps on whenever I see a possibility  of hearing and feeling water. I have even lain in puddles and drunk the water. I don’t mean not to fit into your world but my chromosome deletion decided that for me. I can’t use the toilet or feed myself but I can laugh and give the best hugs in the world. I need help in every area of my life but sometimes I make that very difficult especially if you want me to keep shoes on, or shave me or cut my hair.

I love running free whenever I can, but I don’t see all the dangers that you do. I have been ‘arrested’ at 6am in my pajamas for the great escape and once I ran into the local Chinese restaurant with no clothes on! I was proud of my achievements but obviously my Mammy was somewhat distressed. When I see a door I try to see if it is opened and I am not scared of darkness. Even if I see a window I will climb out; not because I always want to escape, but I just love freedom- the freedom I see you having every day of your lives. I am a happy lad and I love water, people, noisy toys and food; sometimes not the right food. Mammy had to bring me to the hospital because I ate fire lighters and have been known to eat dog food. I love swimming because I feel so free and happy in my floating world. I don’t watch television and I can’t play with toys in the way you might think might be right. But, I love things that I can’t have – ornaments, clocks, handbags. I have scared so many grannies by trying to grab their handbags or shopping in the supermarket! But my own granny loves me so much she did not tell me off when I ran upstairs to her bed with half a turkey on Christmas day.

I do not sleep like you. I can wake at any hour and be ready for action – so I explore, play and seemingly annoy my Mammy very badly. I can’t talk in your language or understand it but I have my own vocabulary – which you don’t understand. If Mammy needs to go shopping or do anything outside, I have to use a wheelchair. I hate it as I can walk but I would only wreck the shop or run away. My wheelchairs are always uncomfortable and sometimes bits fall off. I bounce around so it is very hard to push. People stare at us even more but I need to see what is happening out in your world too.

I have medical conditions that the doctors find hard to understand because they have never heard of my chromosome syndrome and that really frustrates my Mammy. I have also started having seizures. They make me feel very bad and as I don’t understand what is happening to me, I get very scared and so do people around me. I only have them at night and I usually pick myself up the next day.

I don’t have many friends that I can call my own but I have met lovely people in my life of different schools and services. They care for me, like me and even enjoy my company. I also have a nice school and I have my own classroom. I think it is because I would be too disruptive to be with other kids. Many professional people have tried very hard with me. I think that me being so unusual and the first person in Ireland to be diagnosed with this doubled named syndrome, they don’t really know what to do. Sometimes I think they could do with going back to school themselves! People like me also need those that can research and explain our differences; especially to help new babies who join the Phelan-McDermid Syndrome family. So when you look at me – do not think I am stupid or do not have feelings or needs. I am a person, maybe different, but who said different is bad? I need understanding, respect and help. In the words of the inspirational Irish singer Luke Kelly “Do not scorn his simplicity but love him all the more.” Those words mean so much to me and my Mammy.

This never ending journey with Jack has presented many difficulties, challenges, heartache and joy. Darkness entwined with brightness. I look for hope and progress from medical science but meanwhile the love in my heart for Jack sustains me. “It is only in the most mysterious equations of the love that any logic or reason can be found.” (John Nash – A Beautiful Mind)