You must do the thing you think you cannot do.” -Eleanor Roosevelt
“Why do you bother speaking out/attending meetings/creating surveys (delete as appropriate), nothing ever changes”.
I hear this all the time, not from practitioners but from other parents. Some parents know me well enough to know I am not the type of person who can just accept things and some know that I am in my element when facing a challenge. I accept that all I do may not change the world for everyone, but if even one person walks away with a different attitude and a desire to do things differently, then for me, that means a change.
I was intrigued to find out what parent participation has managed to change over the years, so I asked a friend who has been involved with the system for several years. Nicola Bartzis gives her view here of what has changed for our children and families
Well, when Debs first asked this question, I thought it would be easy to just jot down a few things and move on – but then I started to think (big mistake!).
My son is 18 now and was diagnosed aged 3 with severe autism and severe learning difficulties. All I knew was that his language had disappeared and he was on the go non-stop.
The GP wasn’t aware of autism – this was 1996/7 – and only recently had the autistic savants become newsworthy. Everybody associated it with “Rainman” (the film came out in 1988).
I can still remember two phrases the consultant who diagnosed him used when they told us: I asked about the NAS and was told, well some parents find it useful; we asked what will he be like in 5 years time and was told don’t think of the future.
He would be referred to the local special school, but there was a long wait and in the meantime….nothing. I tried enrolling him in local playgroups, but they couldn’t cope; enlisted the help of the health visitor and tried every nursery/playgroup within a 5 mile radius…no joy. No discrimination laws either.
No information, no source of information – no mobile phones and of course NO INTERNET! Hard to believe now, but it was incredibly isolating and the only sources of information were the dog-eared leaflets I picked up in the local library. That was until he started school and I got to meet OTHER PARENTS. I’m guessing that this bit is still the same – there is no better source of information, support and understanding than someone going through the same traumatic experiences. Only then did I find out about benefits, social workers, respite(although that had a huge stigma attached to it), the voluntary sector (or rather charity, because all of a sudden we were of course to be pitied) and that not only was I not alone anymore, but there were parents who were proactive and THERE WAS LIFE AFTER DIAGNOSIS!
OK, so then school – good early support was the school nurse, who directed us to the free nappies. George had SALT and play therapy via an OT, and as I took him into school every day I had a good relationship with the staff looking after him. No Earlybird, Makaton training, no research studies(well, except the MMR furore) into autism, no awareness generally and of course the comments and dirty looks when we were out and about – although I guess that hasn’t changed too much either.
No Extended Schools, so no clubs, no weekend events, just a ‘Bounce’ that the LA sponsored once during the half-term and maybe a funday in the summer holidays. The local summer holiday club was run by parents and folded when CRB regulations were established in 2002 – George was 8.
Down in Kent we had the Link Scheme run by the LA, with people volunteering their time and being paid a miserly sum towards expenses. We had one Link worker who kept failing to turn up so she had to go, then we just never got another one. I guess that was our only chance.
We had help from Crossroads later on, but they were only just getting started on their service for disabled children and the inexperience of their staff showed L
I became a parent governor at George’s school and was shown around by the Head Teacher, who was very pleased with the good relationship with the school’s neighbours and the local community – “because no-one knows we’re here”. Out of sight, out of mind?? Are there still HTs around who feel that disabled children should not draw attention to themselves? I hope the legacy of the Paralympics goes some way towards tackling this attitude.
Had I known then what I know now about that school, I would have acted differently, but that’s another story!
Back then, it was a long hard slog finding out who was who and what was what in all the services, and the only way was to talk face to face with other parents – coffee mornings were a blessing!
Now, information is everywhere and actually, I find myself with a different problem – sifting through it to find the most relevant solution to a particular issue. I can find the management structure of the LA online, same with health and education; there is the Freedom of Information Act if I can’t find what I want – and government websites have information about benefits, rights and responsibilities.
Of course, we also now have huge financial restraints and major changes in the NHS to deal with – the constant change and reduction of services, whilst being made to think it is all in the name of choice and personal autonomy.
For me, the biggest change of all has been in the attitude of parents – services are seen as a right and some are even taken for granted!
The vast majority of parents are still the same, but the few who used to speak out are now the many, thanks to the communication revolution – never has there been a better time to make our voices heard!
Thank you Nicola. This is why I go to meetings, create surveys, speak out, etc. This is why I bother. My eldest son was born ten years after Nicola’s son but our initial journey was so much easier due to Early Support. Having a keyworker who knew where to go, what was available and how to access it made a lot of difference.
We are, of course, still fighting the system – LA SEN Home to School Transport is a daily battle for many of us, getting a statement is hard for lots of parents, getting the respite/short break we need is always down to the budget, having our children’s views heard is still not as common as it should be and the system is still far from fit for purpose BUT in some areas it has improved.
We may not see immediate results, we may not see any results in certain areas but I cannot stop “bothering”. With the development of the National Network of Parent Carer Forums and the use of social media, parents can now share information and good practice across the UK.
I do believe we can change the world, I just know and accept it won’t happen over night.
If you are already involved with Parent Participation, what changes have you seen? What campaigns are you aware of? Let me know and I will happily share.