David was born in 1983, and at the age of 3 months was diagnosed with Cornelia de Lange Syndrome. The prognosis at that time was very poor. Doctors said he would be lucky to live until he was 5 or 6. 21 years later the battle began for supported accommodation for him.
CdLS is a syndrome of genetic origin which, in David, has caused severe intellectual impairment, a variety of medical problems, extreme language difficulties and behaviour issues. At the age of 17 years he was assessed at the intellectual level of a toddler. He has obsessive/compulsive and autistic behaviours.
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. 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. Including dentistry, so far he has probably had something like 20 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. Lack of sleep, language and his obsessive/compulsive mannerisms are extremely wearing for me as his carer. Diagnosing medical problems is incredibly difficult because although David is able to let me know if he is in pain, he is unable to describe the type of pain or often exactly where it is. I have learnt to read his body language which helps me to interpret (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. 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. He has brought great joy to our family. He continues to learn and improve his skills with constant one-on-one care, continuing therapies, and taking part in community life.

He 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 I have had to give up paid work. I snatch moments for my interests when David is in respite. The pressure and stress is such that I can no longer continue doing it all.

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. I need to be able to prepare him for such a move to avoid behaviour deterioration. The present method of accommodation allocation – anywhere, with strangers, usually after parents have died is inhumane and designed to create the greatest stress on parents and the residents.

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