This story is about 11-year old Maddie who has autism. Her mother Lyn gave F2L some insights into a parents’ journey with autism as well as her experiences with the NDIS.
“Maddie loves watching beautiful Disney movies. (Usually something funny or a movie with lovely music and songs to sing along and dance to), playing with her Mummy and big brother Josh, as well as swimming, horse riding and going to the park. Maddie also likes visiting the cinema, local playgrounds, swimming pools and the beach.
When it comes to community activities Maddie enjoys horse riding with her friends and also attends Seahorse Nippers for Children with Special Needs every summer. She recently started shopping and pushing the trolley to help with grocery shopping. She also attended community Christmas parties and loved watching the New Year fireworks.
Her pet hates are going to the doctor, dentist or hairdresser or strangers going near or touching her as she becomes frightened and upset.
From an early age, if possible, keep your child or children away from sugary junk food and drinks. A healthy diet is going to be beneficial in more ways than I can possibly mention. Also, try hard not to give into them too much as they need things like regular bedtime for a good night sleep as meltdowns can occur more often and be more severe when they are extremely tired. Be kind but firm with boundaries as they need to know and understand what is and is not acceptable behaviour.
Learn and understand as much as you can from professional people that work in this field. Attend workshops, expos and information seminars and join a support group of people that are also in your situation. Connect with the right people and don’t be afraid to ask for help.
And look after yourself! Your health and wellbeing will play a major role in assisting you to cope with the challenges ahead of you with your child. Try to always remain calm but firm and it really helps to have a fairly structured routine for them as it helps them cope. Learn to know and understand their triggers and learn to read their facial expressions as it helps a lot with avoiding massive meltdowns.”
And tips on navigating the NDIS…..“Be prepared, have a clear plan on goals etc. Have a support person with you at your initial interview appointment and ongoing reviews. Make sure you take reports from therapists and you communicate with everyone involved and be sure you are all on the same page. Request anything and everything that is reasonable and necessary to achieve your goals.
I am doing ‘Self-Managed’ which I am finding to be great as it is more flexible and you can get things done much faster and more easily but you must be proficient with computer skills and good with paperwork. I found the process good to work with but you do need to be organised in order for it to run smoothly and if there is anything at all you do not understand you must ask. The biggest challenge is finding all the right therapists and support workers to assist your child with their particular special needs.”
We value your voice and invite readers to ‘Tell us what you think’ about places, events or programs that are helpful to our online community. We welcome responses from people of all ages. Please submit your stories to: [email protected]
Join over 7,500 subscribers for the latest news, products, services and technologies for the disability and rehabilitation sectors. Subscribe here.