How many people does it take to raise a child with autism? And even more importantly, how much extra emotional and physical toll is there on parents bringing up a child with autism?
We have needed an army to help support our boys, we haven’t always had one though.
The ideal army would consist of a loving family and extended family , supportive neighbours, committed teachers and well equipped and knowledgeable schools, kind babysitters and carers plus a team of professionals – doctors and paediatricians with knowledge of autism and the medical problems that often co exist, speech and language therapists, occupational therapists and physiotherapists.
That is just for starters, many of our children also require nutritionists, holistic practioners (in the absence of much support from the medical profession), psychotherapists, play therapists, music therapists. My boys all had specialist early intervention in the form of VB (a form of ABA – Applied Behavioural Analysis) for 35 hours a week which required trained 1:1 tutors, a supervisor and a consultant.
Only the minimum is provided by the education system and the NHS and even then many parents have to fight to get what their children need. We had three special educational needs tribunals to get what we felt our boys needed at great cost to us both emotionally and financially.
There are many agencies involved in our children’s care like the education system in which there are SENCOs , Educational psychologists and Learning support assistants.
Social services provide social workers, portage and home workers and hopefully some direct payments to fund respite care and carers.
The list goes on and on and if funds were unlimited , think how many more people could be involved. Thankfully, some charities exist who provide support and specialist days out in holidays .
But at the heart of all this , is the family co ordinating this team and providing the nurturing, loving environment which our children need. A child needs to feel secure and loved for any healing to be possible and to establish trust so that others can be allowed to help them.
The greatest strain falls on the parents who love their children unconditionally. We all do anything we can to help our children which may mean abandoning our own lives to enable them to reach their full potential whatever that is. In doing so, we regularly struggle as the ‘village’ we need to support us in this, is often missing for many reasons and so we have to become that ‘village’. Looking after our children can mean social isolation, physical exhaustion, extreme stress and sometimes, we cope and sometimes, we don’t and when we don’t , we need that elusive ‘village’ even more.