As a mum of extra-ordinary, special needs children, it is increasingly difficult for me to read countless stories on a daily basis about the amount of misunderstanding and prejudice that is out there in the world of 'professionals'
Everyday I am corresponding with mothers (and some fathers) who are at the end of their tether (and sanity in some cases) when it comes to trying to communicate the needs of their children with those who are meant to be helping them.
There is a stunning lack of empathy and understanding amongst professionals when it comes to supporting a child's sensory, emotional and physical needs. This is particularly evident in the educational establishment, not to mention the paediatric setting and don't even get me started on Social Services.
Let me preface my criticism with this thought - of course there are some amazing professionals out there in the country (and world) but unfortunately they are few and far between. Couple this lack of professional understanding with a parents lack of medical vocabulary, and it can get very adversarial very quickly with the parent often being blamed for their child's needs.
The parents I am corresponding with are telling me that those charged with the safety, education and well-being of their children are simply not listening to them.
They are almost unanimous in their cries of, "They think I'm a bad parent." "They say I lack the skills to the manage my child effectively." "They think he/she is just naughty/attention seeking/dramatic/uncooperative." And the list goes on and is exacerbated by a further lack of adequate diagnosis from the paediatric teams. This is particularly true in the case of Pathological Demand Avoidance which is not in the manual and is therefore 'not even a real condition' but simply a parents excuse for poor behaviour. As a side note, not all parts of the country refuse to diagnose PDA making it even harder for parents to figure out where to turn.
Parents often face the above charges without the professional having spent much more than a few hours with their child and even when parents present video evidence, behaviour diaries and testimony from others who care for their child they are still ignored. How can this be?
The professional literature would have us believe that WE are the experts on our children (and of course, we are) and yet in reality, we are ridiculed, belittled and patronised and, more often than not, sent on parenting courses which, in my opinion, is the worst insult of all, especially if you are the parent of more than one child and the others are 'conforming' and 'behaving well' with no obvious difficulties. Surely this alone indicates that it is not the fault of the parent?
My son has Sensory Processing Disorder (a condition commonly diagnosed alongside an ASD) and he often needs deep pressure, movement breaks, quiet time, something to chew or fiddle with and more sensory feedback from his environment (a sensory diet). He can react violently to loud noises, bright lights, too many people and strong smells. As his mum, I know what might cause extreme reactions and I am able to monitor and control his environment when necessary to avoid the sensory overload. I know when he needs his ear-defenders or his chewing gum or even a great big squeeze!
I don't think these adaptations are unreasonable if it allows him to regulate himself and participate in 'normal' activities! They are a necessary part of his 'therapy' and have a huge impact on his behaviour. I think they should be respected, just as you would allow a diabetic to take their insulin, or a wheelchair user to be able to use a lift. Just because they are not visible, it does not mean they are not real.
Now, why can't the professionals accept and meet these needs too? If my son were at school, I would send him armed with a list of strategies and techniques to give to the professionals in order to help them understand and support him. I would give them a very long tip sheet about PDA and how best to get him on board with any given task so that he stands the best chance of being able to comply and enjoy what he is doing. What parent wouldn't?
However, the chances are, my carefully though-out tip sheet and long list of successful strategies would be ignored/forgotten in amongst the mass of other tasks that teachers/TA's have to do in a day.
Fair enough, I guess. They do have a lot to do (and lots of other needs to take into account) but, if they do not utilise our suggestions, surely the resulting punishment of our children is discrimination? They are inevitably punishing our children for their disability! How can this ever be acceptable?
I read about illegal exclusions and draconian punishments DAILY which are a direct result of teachers and TA's being unable to meet the needs of our very special children. I admit, these needs are high, but the professionals have a duty of care, and they accept that duty of care and when they fail to meet the standard of care our children deserve, what are the consequences?
The consequences are disastrous. Not only for the teachers, TA's and other children affected during the school day, but also for the child in question and just as importantly, for the child's family when the school day ends.
When that child goes home they will need to release all that tension, frustration, upset and sensory overload somehow. They will more often than not, explode through the door at home and unleash a storm of fury and pent up anger all over their loved ones.
And here enters another 'professional' who, when told about this set of behaviours, instantly thinks that there must therefore be a problem at home! How ludicrous! How uninformed! How insulting!
No, Mr or Mrs Professional, this does not mean there must be a problem at home. On the contrary in fact, it means that home is where this child feels safe enough to let it all 'hang out'. This is where they can release and be themselves without fear of punishment, ridicule or reprisal for their behaviour.
Home is where all of the unmet needs of the day manifest into behaviours which communicate just how badly that child has been failed by their care-givers during their day.
Parents have to deal with the fall out of a failing system only to be told that their parenting is at fault! That their child's behaviour is a result of their lack of boundaries and training on their part.
It is such a soul destroying situation for these parents. Not only is their child being failed, but now they are being blamed for that failure.
How can we begin to address this issue?
Well, I think, knowledge, knowledge and more knowledge is the only realistic and long-term answer.
Gathering this knowledge from caring, empathetic professionals (Jude Seaward and Felicity Evans to name two I know of), other parents, adults with special needs (who have long since left behind their school days) and of course, listening to our children, is the best way forward.
Places like The Avenue, and volunteers like Joanne, Elaine and Sarah, who are dedicated to expanding the knowledge of parents and carers, is the future.
It is groups like The Avenue that will make the difference to our children by empowering parents and informing professionals.
It is only when parents are given the confidence and appropriate vocabulary that they will be able to effectively advocate for the rights of their special children.
So, please, please, please, spread the word.
Share your experiences.
Share your knowledge.
Share your thoughts and feelings.
Share with anyone who will listen.
Do not be embarrassed (or shy) about disagreeing with a 'professional'.
Do not be intimidated by their qualifications.
Do not let them claim that they know better than you if what they are saying goes against your instincts and ignores your knowledge of your child.
Trust yourself. Get informed. Ask questions.
Be the best advocate you can be.