Daniel: Finding Early Support Locally
My son Daniel began displaying self-injurious behaviour (head-banging) at the age of one. We didn’t know what to do or where to go for help and we were given just three options: a helmet, medication or hope he grows out of it. We ruled out the first two options and were therefore left with no practical help or support.
Daniel did not grow out of his behaviours. He developed a whole repertoire of behaviours described as challenging – including disruptive and destructive behaviours, aggressive and other self-injurious and stereotyped behaviours.
At the age of nine Daniel had to go 275 miles away from his family home to a specialist residential school. At that school they adopted an approach whereby they carefully identified the reasons behind Daniel’s behaviours (the functions) and provided him with other ways to get those needs met. This included teaching him a range of useful, practical skills (sitting still for 5 seconds was one starting point) with an emphasis on increasing his communication skills (he has no verbal communication but can sign and use symbols). When this was explained, it all seemed so perfectly sensible – and I thought “why didn’t we know that and do that from the start?”
There was nothing special about the part of the country where Daniel’s school was located – it was not that the air was different- it was simply that there was expertise located in one building hundreds of miles away. Daniel was separated from his family and all that was familiar because he had to move to where the expertise was.
All members of my family and all the staff supporting Daniel would have benefitted from information and training in positive behavioural support. That would have resulted in better outcomes for Daniel and a better quality of life for us all. There was no reason why the expertise at Daniel’s school could not be replicated so that he could get the right support locally – and support to meet his needs could be built around him. I hope that today, families across the country, in similar situations to the one we faced when Daniel was younger, will get the right support in the right place at the right time. We must ensure that all families are provided with timely and practical information and support. Early intervention is key.