Many professionals that we deal with , have no comprehension of the stresses that parents of special needs children are under. I am certain if they did have, they would not move at the pace they do and they would not make some of the suggestions that they make : when a parent reaches out to a consultant because they are at their wits end about their son’s aggressive outbursts, they need an immediate response, not to be left waiting and wondering what is happening.They need solutions and proactive assistance before they reach breaking point.
When you have a child who has sleep difficulties, you do not need the added problem of nappies that are so thin that they leak and then he wakes up twice at night to be changed. It was outrageous that that simple problem took a full year to resolve, for us to get the continence products that we asked for in the first place. When you have a child who struggles to sleep through the night, you really do not wish to be told that you should try to put his arm splint on him in the middle of the night, risking waking him up. When you tell the surgeon that his brain surgery has impacted negatively on Joshua’s mobility and sleep patterns, you do not simply want it to be shrugged off as ‘one of those things’. When you go to your neurologist in desperation due to a personality change in your son since using an anti-epileptic drug,he had turned into a ferocious panther, and he tells you that this aggressive boy might be his real personality underneath the epilepsy! The anxiety of wondering if that latest seizure could actually kill your son. I could go on…
So how about we instigate a job swap, in the interests of improved understanding? Let the consultants, social workers, physiotherapists, occupational therapists all take our children home for a weekend: let them experience first hand the impact of aggression, sleep deprivation and the feeling that you cannot turn your back or truly relax for 24 hours a day. I suspect that they would become better professionals after that insight and it would probably stay with them for a long time too. I think it would bring out the empathy that seems to be missing in many professionals, as there would be no better training course than to swap into our lives and trying to function, without being dragged down into the undergrowth. I have often thought at school that you can tell which teachers and teaching assistants who have personal experience of living with disability in their families, mainly they seem to have siblings with special needs that drew them to their career. They tend to have an innate skill with the children and empathy with the parents, and that is probably because they grew up with it.
It would also be revealing no doubt for us parents to see first hand the different kind of pressures that they are under : the heavy workloads, the pressure on appointments and the impact when a family do not turn up, the burden of paperwork and the huge responsibility of potentially getting something wrong. All of that, and more, would be invaluable for us to see so that we could be more tolerant of long delays in waiting rooms for instance or when patient files go missing.
I am not sure how many professionals would accept my suggestion of a job swap but I believe that it would be a real eye opener for all concerned.