As you can tell by the title we finally got to an assessment when our daughter was in year five. This was triggered by the fact our daughter had a ‘meltdown’ that the SENco (Special Educational Needs Co-ordinator) saw. It was outside school, for no real reason except exhaustion. For us it was a normal part of our routine that after school this happened but normally it happened behind the closed doors of our home.

From that time on we got a referral, even though I had to dictate the referral to the SENco. After each assessment we heard the same thing, why hasn’t she had this done much sooner?

It was all finished during year six. She was fed up of visits to the hospital and tests! The assessments had revealed a learning age of around reception or year one which was painful enough to hear.

Finally we had the consultant appointment where we received the results of the MAA (Multi Agency Assessment). Even though we were expecting it, the stark realities of need were painful to hear. Sean took it hard, I think there’s a special relationships between dads and daughters. His heart was broken for her and what her future would look like.

Her diagnosis was in four parts, ASD (Autism Spectrum Disorder), Dyspraxia and complex learning needs (including dyslexia and dyscalculia). We were surprised that ASD was number one on list but it makes sense when you think how global ASD is for a person’s life.

After taking a breath though, we realised that this was the best thing that could have happened. We had a clear idea of what help could be put in place. The LEA (Local Educational Authority) realised mainstream school wasn’t helping her and this was confirmed as I looked for secondary schools and was basically told by some schools that they wouldn’t take her or they would ask for so much money the LEA would refuse to send her there! Shocking really but understandable. The government have made schools outcome focussed. Great for my NT son who is bright and needs to be pushed but not for those with additional needs.

This is the point at which we were thrown another lifeline in the form of a very small private school who used individualised curriculums. They met with us and like all other teachers saw what a delight our daughter is and that her main need is to be supported and encouraged where she’s at. We got a place for her and instead of starting at mainstream secondary she started there and is still happy!

We have difficult days still but we don’t have to fight to get her into school every day anymore. That’s a huge victory.

You might read this and think diagnosis is the end of the story. It’s not. In a lot of ways it’s the beginning. But now we know the battle we’re fighting. Next week I’m going to ply you with resources that we’ve found helpful. The biggest lesson we learnt is not to be afraid of the diagnosis, not to allow that to become our daughters identity. She is a beautiful, kind girl who has so much to offer the world around her in her own way.

Our role is to support her and give her the tools she needs to survive in a world that isn’t always as kind as she is.