Jamie’s StoryJamie is the son of Catherine Bailey, the chair of Parents In Need
My son was diagnosed with autism aged three. He was non-verbal, and we were told he might never speak; indeed he might never do anything. We didn’t know who to turn to for help or what to do. The only ‘help’ we received was a Doctor telling us to find a school for the disabled or an ‘institution’ to put our son in!
Five years on and two court cases later, our son is now in an amazing school suitable for his needs, talking non-stop and blossoming.
The journey to getting our son into this school was terrifying. We had to draw on all our resources – finances, emotions, time. We were met with nothing but negativity from our local council. We got through it because we were both self-employed and able to give up time to fill in endless forms, arrange assessments and help our son learn at home until we found the right school. We spent all our savings and faced some very dark days – but we survived. Having been through this journey we wanted to help those parents on their own or with no resources to draw on.
We soon learned about other parents’ situations; we became all too aware of many tragic cases and decided it was time for action. Not only did we discover parents were splitting up because the strain and pressure had become too much, but we learned of several cases where mothers had committed suicide because they had been so let down by the system.
My partner and I decided that enough was enough and that we needed a charity where parents would be listened to; where parents would be supported, where parents would get answers and where parents had access to resources to help their child get the best possible chance in life.
A diagnosis can be a very dark and isolating time. All the parents we talked to spoke of their isolation and bewilderment. The people you expect to help – don’t seem to…..The Local Authority drag their feet, “a specialist” diagnoses your child and schools are suggested which seem wholly inappropriate.
At first you don’t want to believe that you are going to have to fight for your child’s future – but this is exactly what you have to do. You can’t believe that you may have to go to Tribunal in order to have your child educated – to have their needs met – to allow them to reach their potential. You will probably need independent reports and maybe legal advice and before you know it you are in a battle you didn’t begin nor imagined yourself in.
Alarming figures show just how many parents have to use the Tribunal system to get their child’s needs recognised and met. As well as being a daunting, expensive and emotionally draining process, it can also lead to protracted, and potentially damaging, delays in getting the right support in place.
It also reflects local authorities’ historic lack of understanding of Special Needs, as well as their tendency to use the Tribunal process as rear-guard action to protect shrinking budgets.
It is important to me that while PIN will support parents through the system it will also seek to change it so that parents are treated fairly and reasonably and are no longer fighting a lone fight.