Our Liam was born on November 06th 2009 , our youngest child a beautiful pudgy little boy who like all babies carries the hopes and aspirations of his parents. He was perfect and would no doubt go on to greatness and allow his Dad to retire before he’s 50 through professional football or the creation of the next social media craze. Liam’s progress through infancy was wonderful, he was a typical rough and tumble boy, he walked at 11months and there were no signs or signals that life would change. There were lots of smiles, fun, games and a few words although slow to come. Then the new words stopped coming and he seemed to regress a bit, then the few words were said less frequently until they stopped. The fun and games began to lessen and he began to display some repetitive actions such as watching the same programme over and over, he was retreating into his own world. We went through the normal channels such as hearing tests etc but as a mother I sensed that something was not right with Liam’s development.
“After much denial by myself, his Dad, we agreed to have Liam assessed just after Christmas 2011” . The assessor raised the red flag. There are concerns over Liam’s development, maybe Autism. My heart sank, to be warned of something like Autism which in your heart you fear but hope beyond hope is just in your imagination is crushing. Your initial reaction is grief, the loss of your ambitions for your child, who will take care of him when we are gone, your mind spins for days until your new reality kicks in and you start to look for what help is available.
We came to realise that we had to adapt to raise this child in a different way, and in doing so we learned so much from him.
The Health Authority told us that it would be at least 6 months before Liam was formally assessed for Autism. We decided to go to a private clinic and have Liam assessed ourselves. Liam was on the Autism spectrum, he was two and a half.
When a child is diagnosed with Autism there are lots of appointments with Health Service officials and you hear a lot of positive messages about the benefits of early intervention. How with the correct speech, language and occupational therapy systems in place your child will have a great chance of developing to reach their own potential.
Unfortunately the health service is not resourced to provide enough early intervention, Liam was offered a very limited number of speech therapy sessions which simply was not enough for his needs. We decided to take our own path and found supports in the private sector which prove that early intervention does work. We were lucky enough to have some resources to do this not everyone can. We met wonderful people along the way. Liam’s first preschool which introduced Liam to Applied Behavioural Systems this showed that Liam was a strong visual learner, that he learned through pictures (PECS) as opposed to words. We met two wonderful tutors Lisa and Siobhan who are now directors with Friends of Liam, they brought Liam on in great leaps teaching him through visual cards and games. He started school in a local Autism special needs pre-school where he loved getting up and getting out every morning. Liam attended Speech and Occupational Therapy from the age of 2 even before he was formally diagnosed. He attended a Social Skills group and more importantly he was having fun!
Through all of Liam’s friends helping and supporting him he progressed from the little boy sitting watch the same TV programme to a lively adventurous little man who through the use of pictures would communicate what he wanted to do each day. He loved water,swimming, water parks, horse riding, playgrounds, train journeys, boat rides and visits to the cinema. He loved music and his IPAD, his favourite programmes were Thomas the Tank and Special Agent Oso he had a fondness for ducks.
Liam’s wonderful journey proves that early intervention works but sadly just does not exist to any great extent in this country. The name of the Charity ‘Friends of Liam’ was not chosen just for Liam’s existing friends but to inspire us to help Liam’s future Friends. It is our goal to raise the funds to establish the early intervention programmes that improve the quality of life of children and their families. Early Intervention does work it just needs to happen. We also wish to provide fun activities for children with Special Needs, holidays can be a tough time finding activites that suit you child and more importantly are inclusive to the needs of your child.
In May 2015 Liam was diagnosed with DIPG, an incurable brain cancer after what appeared to be an ear infection which would not clear up and just seven short weeks later passed away. He was 5 and a half. He passed away at home surrounding by the people and things he loved which was so important to us, we were supported by Laura Lynn nurses and the Daffodil nurse, we can never thank them enough. One of our long term goals is to contribute to research into finding ways to effectively treat DIPG, as the only treatment as the moment is radiation which only shrinks the tumour.
Our Liam was a truly inspiring little character, his enthusiasm to learn, have fun and to watch him stand at the front door every morning waiting for the school bus could only make you start your day with a smile. Liam was a great character and we taught us so much about life and really changed our way of thinking about the world. We take nothing for granted and celebrate all achievements even the smallest ones. Every child should be given the opportunity to progress at their own pace and given the tools to do so they will.
Liam loss is beyond words, he is missed by all his family and those who knew him best but with your help his legacy to his Friends will last forever through Friends of Liam Foundation.