You could say that the first year or so of Dean’s life was as close to perfect as any parent could wish for. I was 23 and Ian was 32. How happy were we!

At 18 months of age, Dean had a seizure; this was followed by thousands of seizures. Sometimes he had 20 or 30 a day. The more seizures he had, the more drugs or combos of drugs he needed. Put these together and the result is Epilepsy with Intellectual Disability. Behaviour problems, Autism and now we also need to add Mental Health issues to the list.

Of course there are some obsessive compulsive components too, just to keep us on our toes.

Did I mention we also gave birth to a beautiful daughter, Claire at exactly the same time as Dean developed his epilepsy? Well, Claire had a tough time, she was massively shy and how could you blame her. Her parents were being thrown from pillar to post and sadly she was forced to experience the same treatment. She was breast fed between seizures and cuddled whilst her brother was being canulated. Her paternal grandmother did what she could in the early years as did the other carers we paid to assist us.

Our marriage has also suffered much over the years, but we have always done everything we could for our children and this will never change.

Dean is now 31. We tend to refer to him as an adolescent toddler, because to this day he still has such a mixture of these traits. He is a good person with a good heart. But that does not help him to achieve the things he wants from life. You see, Dean does not see himself as a disabled person. He wants a different life. He is in denial of his disabilities.

This leads me to the next step in Dean’s life, the next step in our lives.

Dean wanted this life so badly that he started endangering his own life as well as ours. We were forced to realise that he would not survive unless he moved away from this house and into a safe, structured environment. It was killing him. We had no control and we feared for him as well as ourselves if we challenged him.

Dean was finding it increasingly difficult to have a conversation. It got worse when he left his workplace, he started to regress more. He could not think of words to use, so he made up silly phrases to try to make you laugh, He desperately wanted friends but was losing all his skills. He needed an environment with structure.

He was spiraling out of control with his sleeping habits. Staying up till 3AM and sleeping most of the day (or having seizures, how could we tell?) He was playing loud music or DVDs through the night. He looked haggard. Then we found him having seizures in the middle of the day and managed to rescue him even though he had already started to turn blue. He refused to shower or brush his teeth with any regularity. His health was deteriorating. His skin was peeling off. We simply could not negotiate nor force him to bathe. He was unrelenting in his belief that he could in fact do whatever he wanted.

We were suffering from depression, and chronic pain brought about by the constant stress. Taking antidepressants by day and sleeping tablets by night, crying and shaking with fear and sadness. We were both a mess.

It was not fair to Dean to watch him destroying himself. It was not fair to us as his parents to watch this and have no control and no possibility whatsoever of helping him.

If he stayed at home it would kill him and it was killing us too.

We received support and assistance from many Dadhc staff, these are the staff who met with Dean and his family. They all knew what Dean needed, but there was nothing they could do except offer us stop gap measures of care.

When the assistance Dadhc offered us turned into an hour here and an hour there (which was provided by 5 different providers who moved the goal posts regularly) it became too much. Dean was so confused as were we and he still had nowhere to go. There was even less structure in his life and we found we were unable to coerce him to go out at all. He was spiraling further out of control.

Eventually we found we had no other choice than to leave Dean in the care of the Department. We did this simply to save his life. So Dean spent the next 6 months in a respite unit. This was devastating for all of us. Fears, guilt, fears and more fears assailed us as we waited and prayed for a future for our son.

The first group home placement they offered us was totally unsuitable due to numerous allegations of abuse in the house. We declined this offer and waited again.

So here we are today: Dean is now in a group home. He seems happy, but he is a long way from home. We see him twice a week and continue to try to work out how we can give him the life he needs, He is with people he has never met before. The staff do not know him. He has no local knowledge and no work or day placement. We still want the RASAID model.

As you know the members of RASAID have devoted the past six years of our lives to this model and this is only because it is such a perfect model for this and many other groups of people with disabilities.

The RASAID Cluster Model actually works within the system. It is a model made in heaven. Not just for the families of RASAID, but it also works for DADHC.

This is why we simply cannot give up.

Lyn & Ian