Living with a child on or suspected of being on the Autism Spectrum is challenging often in itself! But hey what do we as parents know? Sometimes (actually quite often) parents complain that they are simply not being listened to. Worse still they feel 'blamed'. One of our jelimums here in Cornwall says she has enough 'parenting certificates' to redecorate her living room! And has it made any difference? No was the answer I got.
So why are the parents often 'blamed' or accused of 'flagging up unecessary issues'?
Sadly as we have discussed many times before there are simply not enough specialists in ASC out there. No one really knows what Autism is all about and when something doesn't fit into one of their comfortable boxes, it gets labelled as 'a parenting issue'! I groan every time I hear that term.
When we take our children to 'professionals' we expect them to know what they are talking about. They will give us an explanation for our childs behaviour won't they? So when they can't, it's all fingers pointing straight back to us the parents.
Parenting classes can be very helpful in many cases, however these have to be specially tailored for Autism Spectrum Conditions. Parents often complain that they are just passed around from one professional to another constantly. Meetings are arranged in abundance and I remember my diary groaning every time I pencilled yet another appointment in. It was a mission just to get the right child to the right place on the right day! It is exhausting.
So this article is predominately one for the professionals.
Please when you see us turning up in your consulting room/clinic/office - please remember we are exhausted. We are having to tell our story YET AGAIN. More than likely in front of our child. It is overwhelming and often frustrating. We can't cope with it all so if we are abrupt or appear anxious, forgive us.
I used to get upset when folk used to 'blame' me for flagging issues up. Do you think WE ENJOY THIS! Please don't offend us by thinking we actually get a kick out of appointment hopping! There is surely more to life than that?
Having a child on or suspected of being on the spectrum is exhausting, truly. It takes every ounce of energy and faith to carry on sometimes. So to be 'not believed' or perhaps accused of 'bad parenting' is truly heartbreaking. Often parents complain to us that they feel bullied and talked about behind closed doors. Yet we know don't we how difficult life is.
Many families tragically can't cope with the emotional challenges and end up separating. This adds further strain to an already weak unit. These families need help, understanding and above all BELIEVING. You can't make it up, it's very REAL for us.
So the message from Jelibean is WELL DONE ALL YOU PARENTS. You are all wonderful advocates for your children and without your support they wouldn't be able to cope. Children look to their parents for help. When we try to help we get accused of getting it wrong. But please all of you who are struggling out there (and there are literally thousands of you:( ) keep the faith, stick to your beliefs and your gut feelings. It is not a case of BAD parenting, it is just a case of understanding our neurological and cognitive difference. That's all.
So please listen to us, the parents who have to live with this 24/7. We really do know our children best and we really don't want to be sitting in your office.....honestly. We are just here because we are finding life a bit of a struggle at the moment and need your advice. Well that is what you are there for isn't it.
ROUND OF APPLAUSE for every parent out there. DON'T BLAME US, PRAISE US INSTEAD! A smile and a kindly gesture goes a very long way :)