A Brother With Global Developmental Delay
When I was 10 years old my brother James was born. James is 24 and I am now 34. Growing up with James was never a dull experience. James was the cutest of babies and I loved to feed him and help change his nappy and do all the things a big sister does.
When James was really young it was recognised that he had delayed development. We were not sure what was wrong and to be honest no one really knew. I guess we just accepted that James was “different” to an average child.
When James was three years old we migrated to New Zealand my mother’s country of birth. In New Zealand my brother was under the care of the Auckland Starship Hospital and tests were done which resulted in a diagnosis. James has a rare chromosome deletion. In fact at the time he was diagnosed he was the only known case in the world. His deletion was rare and one of a kind.
Due to being the only known case, James was a special needs child of interest and a study was completed on his condition. As my brother grew up he eventually went to a special needs school and during his life most of his friends have had severe special needs or have been Downs Syndrome.
My brother is such a wonderful person. I love him so much. He cannot read and does not understand the value of money but he knows enough to communicate. He can speak and to the trained ear, such as my own, I totally understand my brother. To a stranger it may take a little getting used to.
James developed a love of sports from a young age. If someone were to ask me what my brother is like I would say he always want something to do. He will always ask, “what are we doing next”. My brother is excited about life and loves to go on adventures, hang out with his peers and play sports.
When James turned 21 he left school. This was a huge change to his life and routine and in a way a little sad as he had grown up surrounded by his special needs friends. My parents did what they could to keep him involved in the special needs community and he started a class and special needs Olympics bowling.
James number one love is football. He loves every team and loves to watch the football or soccer on Television. He loves to go to the game even more and my brother is obsessed with wearing football tops. In fact on a good day you may find my brother wearing two or three different football tops, each supporting a different team.
Last year my parents came to the UK for an extended holiday. They brought my brother James with them and it has been wonderful to spend time with him once more. It had been many years since we lived in the same home together and as tricky as James can be at times I love him to bits. I am so blessed to have such a loving and pure hearted brother. James truly is one in a million and I have loved having him here in the UK, even if for a small moment.
My family return home to New Zealand in September. It is heartbreaking. I will miss them so so much but that is their home and the UK is mine. My brother is a huge fan of Mickey Mouse and living on the other side of the world he had never really been to any theme parks or met any Disney Characters. It was my dream to take Sylvia to Disneyland Paris in 2017 or 2018 and when my mum told me the return date for New Zealand I knew this would be my only chance to do something special for my brother.
We booked a holiday James and my daughter to go to Disneyland Paris. It is really a once in a life time thing for my special needs brother and he was over the moon when I told him about our trip. We leave for Paris soon and I am going to make sure both my daughter and my brother have the time of their lives.
My brother has been face timing me around 3-4 times a day asking me questions about our holiday. He is so excited. He really wants to meet Mickey Mouse and Donald Duck and it is really going to happen. James told me he would love a Donald Duck Hat so I will be on the lookout for one in the Disney Store.
I am going to miss my brother when he returns to New Zealand. He is so so special to me. Everywhere he goes people who get to know him love and care for him and he has made many new friends whilst visiting the UK. I hope when my brother returns to New Zealand he can settle into a program for special needs adults. I hope my parents can get support to keep my brother happy and busy and loving life. My brother may be a grown man but he will always think like a child and need love care and support.
If anything should ever happen to my parents I would care for my brother in a heart beat. It would not be easy as James can be a lot of work and needs to be kept busy but that is something I would do for him as my brother.
My brother has taught me many things. He has taught me patience and unconditional love. He may ring me at all hours in the day and night and face time me at the most busy times but all he wants is to say hi and share his news for the day. I learnt that to give him two minutes and to listen makes him really happy and then he is more than happy to hang up and get on with what he is doing. I’m grateful I have a kind and patient husband who has been lovely to my brother whilst James has been here in the UK and I will truly miss him when he goes home.
Until then, Disneyland here we come.
I will be sharing our adventures in the coming weeks.