A fight that you will never stop fighting – this is the best way I can explain having a child with special educational needs.
Rocco met all of his milestones – in fact he smashed them at his one year review – then later that year you notice other children are talking and your child isn’t and so you wait a little to see and then decide to get the Health Visitor round – but obviously you are just being super paranoid – aren’t you?
At 2 years and 1 week Rocco was diagnosed with Autism. We were told he may never speak. We were shocked and right there and then my heart broke into a million pieces. I thought OK what do I need to do to make this easier for Rocco. Thinking I would have a team of support after diagnosis I found we were completely on our own – in essence dropped and left to fend for ourselves. I had no idea what I was meant to do.
The years of research and finding the best possible people began and to be honest I don’t think it will ever end.
The costs of getting all of the correct information needed is astronomical. The emotional rollercoaster of finding the right school! You take the advice and this comes back as mainstream with support – but you know that your child would never survive in a mainstream environment. You know that would be a terrible idea but you have absolutely no idea how you get into a specialist school.
We were lucky to live in the same little village as an amazing Speech and Language school and we paid for Rocco to have a full two day assessment to see if they would accept him – they said Yes!! I thought that was the hardest part!!! How wrong I was!!! Regardless of the fact they could meet all of my child’s needs and felt he would thrive at their school, the council was having none of it!!
After solicitors and panel changes and a lot of personal expense we finally got him into the school he needed to go to – and today he is fully verbal and an absolute joy – and I can say hand on heart without the school we fought for I feel we would have a very different child today. We were the lucky ones.
When my friend told me about a charity called PIN which helped parents fund the essential reports needed I knew I had to give my time and love to this charity. At a real time of desperation they are a beacon of help to parents drowning in the SEN system.