Milestones were predictably delayed – independently walking at 2.3 years was a great celebration. Speech was a major challenge and with the help of specialists and over time Ashley grasped more language and fluency, and he is now extremely verbal and expressive.
Always eager to go places, more freedom came when Ashley mastered riding a two-wheeler bike. For years, all the family have accompanied him around large parks, along bike trails, up rail trails and down bush tracks. He has great stamina. Swimming continues to be a regular activity and with lots of encouragement he can manage 20 laps of a 50 metre pool and enjoys swimming in the deep sea.
Schooling commenced at a very small primary school offering very small class sizes and continued at a specialist school for his secondary education. Both positive environments provided specialist teachers and his love of music, singing and performing were nurtured during this time. He was kept very busy, his confidence was maintained and he enjoyed all activities.
Since leaving school ,Ashley has moved to a less structured day program at a community day centre. Accessing the community has its pros and cons. Constant communication is required to help day services and carers limit his access to food during group activities. Unfortunately , this change combined with the onset of late adolescence has brought with it uncertainty and mood swings culminating in extended periods of anger. Noise levels at home have increased with Ashley becoming more demanding and frequently demonstrating emotional outbursts, especially hard for his sibling in her final two years of school. During this time, Ashley has become more repetitive using inappropriate language and controlling his moods is extremely challenging.
Food wasn’t a major problem area for us until late in secondary school when we introduced locks on the pantry, fridge and freezer. In the less structured adult community environment constant planning is required by parents to help service providers, carers and respite staff understand and manage Ashley’s issues with food and socialisation.
Ashley is outgoing, fun, loving, thoughtful, complimentary and helpful. He loves music, often singing along with his ipod and he thoroughly enjoys long walks and going on outings. Charli, our chocolate brown Labrador, has been a saviour in our family, bringing a sense of calm to the whole household and a wonderful companion to Ashley. He is still motivated to take Charli for daily walks. We need to accompany him out of the house as his road safety skills are less than adequate and his sense of adventure can land him in difficulty. He once walked 15 kilometres across busy Melbourne before being asked by a kind passerby why he and his dog were out alone so late.
At 19 years of age, Ashley is demonstrating behaviours to be more independent and free of parental supervision. The best situation for him will be to live in a dedicated Prader- Willi residence where he would have supervised access to food with consistent routine and structure. He needs a busy weekly program that incorporates regular physical exercise. The desired environment will help him maximise his independence and facilitate his inclusion as a valued and safe member of society.