David's Story

David has Cornelia de Lange Syndrome. This is a genetic aberration which, in David, has caused severe intellectual impairment, a variety of medical problems, extreme language difficulties and behaviour issues. At the age of 26 years he has been assessed at the intellectual level of a toddler. He has obsessive/compulsive and autistic behaviours with occasional aggression.

Physically he is the size of a 10 year old child, but with the strength of a body builder if you try to make him do something he doesn’t want to do. For example it takes a blanket wrap and five adults to hold him down to draw a blood sample.

His medical issues are chronic gasto-oesophageal reflux disease, migraine headaches, incontinence, he has had a cleft palate repaired, has issues with swallowing which often causes him to choke on food and liquids. In the past he has also suffered from seizures. He needs a general anaesthetic to carry out dental repairs. So far he has probably had something like 10 or 12 procedures and operations. How easy it is to lose count. Each time is extremely traumatic for him and his parents, his siblings and his grandparents who have always rallied to help on these occasions.

Communication is an on-going problem for David. He uses mostly single words and phrases with a rare sentence. His intellectual disability prevents him from holding anything like a conversation, though. He spends every waking moment making noise of some sort – singing, blowing raspberries or saying his repetitive phrases, expecting them to be repeated back to him before he changes the phrase. Language and his obsessive/compulsive mannerisms are extremely mentally wearing for me as his carer.

I have long ago given up trying to hear the news! Diagnosing medical problems is incredibly difficult because David is able to let me know if he is in pain, but unable to describe the type of pain or often exactly where it is. I have learnt to read his body language, and armed with information from mine and other parents’ experiences then have to interpret as best I can for the GP, and often strongly advocate for him in the emergency room at the local hospital.

I do everything for him: personal hygiene, cutting hair and nails, shaving, toileting, dressing, feeding. I’m his cook, cleaner, chauffeur, nurse, companion. I have no idea what it would be like to just be his mum.

With all of these problems he is also a very loveable and loved person. I take great pride and pleasure in his accomplishments, however small, and his engaging personality delights all who know him.

When David's diagnosis was made at the age of three months, I was told he'd be lucky to live until he was 5 or 6. Ever the optimists, we moved to the Ryde area when he was 2 so he could attend Karonga special school at Epping, and be close to Crowle "just in case" he needed residential services later.

David thrived at Karonga school and now loves going to Crowle during the week as a participant in their community day program. When he turned 16 it occurred to me that given continuing good health, he was very likely to live well into adulthood, possibly even outliving his mum and dad. I have been sadly disappointed in Crowle as a residential option since the devolvement process has scattered the residents across many suburbs. The RASAID model is the perfect solution for David.

David is the eldest of my three children. His younger sister and brother have completed their university degrees and are setting themselves up in careers, relationships, and exploring the world with their friends. This is as it should be. David, on the other hand, is still living at home with his mum. Where his siblings’ worlds are expanding, David’s is contracting. He is unable to initiate contact with his friends who mean as much to him as his brother’s and sister’s mean to them. He enjoys peer contact at the day program he attends and loves being with his peers in the residential respite house.

My world is contracting right alongside David’s. After working casually for 25 years, and recently becoming a single parent,  I have had to give up paid work. The pressure and stress is such that I can no longer continue doing it all. David is becoming more emotionally and socially reliant on me and his medical problems seem to go through waves of crisis making working set days impossible.

While it is so necessary for David to lead a life independent of me, it is equally as important for him to live in an environment that meets his needs. He deserves to be able to live with the people he knows and likes, where he feels safe. The present method of accommodation allocation – crisis driven, anywhere, with strangers, usually after parents have died is inhumane. Not knowing what will happen to your child when you are gone is, simply, torture. I need to be able to prepare him for such a move to avoid behaviour deterioration, and I want his dad and I, and his siblings, to continue to have a say in his future.

I see other mothers in their 70’s, 80’s and even 90’s still caring for their “children” with special needs, and I know that unless there are radical changes in service provision in Australia, I am looking in a mirror at my own future.

Jenny Rollo