James has Lennox-Gastaut Syndrome, a life-threatening condition which causes him to have severe epilepsy and can have up to 30 seizures every day. Due to the syndrome he has severe learning and physical disabilities which have left him a full-time wheelchair user, unable to use his hands and unable to speak.His mum writes about why he is a miracle and the first time he said 'Merry Christmas'.

Celebrating holidays against the odds

Christmases and birthdays, for the first few years of his life, were always tainted with sadness wondering if it would be his last, we were told as a family he would not reach 10. James reached his 10th birthday and surpassed it ; he is a 20-year-old young man now and things have changed quite a lot from the age of 16. He began to use eye gaze equipment, a computer that James could control with his eyes at school and his eye gaze journey began. At first he would play cause and affect games and by looking at the screen he could knock bottles off a wall or hit targets with arrows - it was truly amazing. The aim of the eye gaze is that eventually he would use it to start to communicate which as a Mum I had almost given up hope of. After 16 years of no communication to suddenly hear your child say “Hello Mum” on his eye gaze ( with a computer generated voice) it’s a feeling you cannot describe; its excitement and shock all rolled into one its magical!

Being able to finally have conversations

Our community came together to raise the money needed for his own eye gaze so he could have access to it more than 2 sessions twice a week. Fundraising took place and by his 17th birthday he owned his own device and he had it mounted on his wheelchair. Things changed dramatically at Christmas that year; he had a Christmas greetings page and we would be out at the supermarket and he would say “Ho Ho Ho” or “Merry Christmas” and people suddenly turned towards him and would speak to him. As a non-verbal person in a wheelchair, people often choose not to speak to them and instead speak to the person pushing the wheelchair so this was fantastic and the pure joy on James face that he had received the attention from complete strangers. It takes a long time to learn to communicate with the eye gaze he has had his now  for 3 years and is still classed as an emerging user but to put in context how many words does a baby learn in the first 3 years of their life?

How KIDS has enriched James’ life

James’ personality is really coming through now - he makes us laugh with his comedic timing. It just takes sometimes one word from him and our home is filled with laughter!  James left school last year but we managed to secure a personal education budget for him to continue on in his education. He only started to learn when he got his communication device and is now learning to read and write (very early stages) something he could not really get from a day centre .He is doing fantastic but socially we needed to make sure he had this interaction with peers so we decided to get James involved with the Loud Mouths group/ YPEG (Youth Participation and engagement group) run by KIDS in July this year, and I would say it has enriched  his life. He has made good friends, who all also have various learning disabilities and have accepted  James in to their group; without question he is the only one at present to use a communication device  but these young people wait for him to answer their questions and never leave him behind in the conversation.

Thanks to the KIDS Loud Mouths group, James along with the other  young people,  have had opportunities to attend Youth Parliament a couple of times and to be there to  represent  young people with SEND is an absolute honour.  James even got to ask his question on one occasion and I was bursting with pride. The KIDS Loud Mouths meet regularly and discuss things important to them and to our town and the services provided to young disabled people and give feedback. James took part in Arts Week at half term and got to do a poetry workshop and  take part in a flag making and was a well organised day that kept the young people engaged and involved. Having something for  young disabled people is marvellous and KIDS is providing a vital service and in doing so are giving much needed feedback to services to shape a better future and outcomes for these young people. I still love the fact that my son who is non-verbal is part of a group calling themselves the Loud Mouths -  I love it!

 I really cannot believe how far James has come in 3 years. His journey is nothing short of a miracle and at Christmas we still count our blessings but we now celebrate all of James achievements of the year gone by. James has plenty to say now-  life in our house is now more noiser but a noise I love.  The voice of my remarkable non verbal boy!"