A Personal Story About Autism
On the 5th February, 2004 we were told by a Speech Therapist that our beautiful son was probably ‘autistic’ and that we should have him ‘assessed’. We were absolutely devastated and cried for three days straight while Ryan just played repetitive pointless games, locked in a world of silence, seemingly unaware of our grief.
We fast tracked him through the assessment and two weeks later we had the diagnosis in writing, prognosis undetermined but poor. We were told that therapy was our best option and that we should investigate it, pay for it, manage it and also deal with a child with huge developmental issues. One week later we gave birth to our amazing daughter, shell shocked and very unsure of our future.
We believed then that the Early Intervention Programs would be our savior and tried desperately to get him into a service provider and cried openly when he was accepted. We were allocated 2.5 hours a week with the majority of that time spent with a university student. Any hope that the system would help us during this window of opportunity for development was quickly diminished. We were very much on our own.
The boy that the assessments and professionals spoke of was so different to the boy we knew Ryan could be. Nobody seem to be concerned with his sensory challenges or emotional difficulties, compliance to complete a task was paramount. This did not sit well with our family philosophy and fortunately we found DIR and floortime.
We have spent three and a half years playing, swinging, bouncing, blowing bubbles, and trying to engage Ryan little by little, step by step every minute of the day humanly possible. We have had an amazing group of students and therapists travel with us on our journey all putting in hundreds of hours playing and engaging and encouraging Ryan to be the best he can be, helping him to grow on every level. We have re-learnt how to listen to him and trust his ability to determine when he needs help, independence or a break.
We have been gluten, casein, corn, soy and yeast free for three years and we have had supplements coming out of our ears. We have read and researched until falling asleep with books on our faces. We have done hundreds of hours of therapeutic listening programs; we have brushed and calmed, meditated and prayed!
Today we have a six year old child who loves life and everyone in it. He adores his sister and will often be heard calling her from a room to come and play. He is beside himself with excitement when kids come over to play even though he still struggles to keep up.
Three years ago he could not speak and I would lie in bed for up to an hour refusing to get up until he said ‘mum’. Today, he runs into my room, gets into bed with me and discusses the day ahead.
He loves to swim, play the piano, is obsessed with trains and goes to his grandparents for sleepovers. He counts down the hours until school and laughs himself stupid at ‘poo’ jokes. He loves music particularly Ben Harper, Powerdefinger and Rage Against The Machine. He plays football with his friends and will not miss a Fremantle Dockers game. I told him yesterday that his cousin got a bee sting and he replied with “I wonder how he is feeling?” Last week he told me that he never wanted me to die because he loved me and would be lost without me in his life.
Ryan still has huge motor planning issues and he requires a large amount of time easing his sensory regulation and anxieties. He attends a pre primary program part time and we are home schooling part time embracing the Steiner philosophy. We still do the diet and see an OT, Chiropractor, Speech Therapist, Osteopath, Online Counsellor and Kinesiologist on a regular basis.
BUT WE HAVE OUR BOY BACK! He is present, communicative, happy and a joy to be around. We have a good life and a bright future ahead.
If we are truly honest we have had more ‘therapy’ than Ryan and have probably changed more than him. It was very arrogant of us to think that Ryan needed to do all work for this relationship to work. We needed to meet in the middle. We have been in a training course for three years learning and appreciating how Ryan experiences the world and we have tailored our lives and environment to meet all our needs as best as we possibly can.
This is a long journey and is by no means over… but what an amazing ride…