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Our son was diagnosed Autistic by the time he was two. My wife had noticed a regression in his development and was certain something wasn’t right – much to my protest. When you get confirmation of a diagnosis your world is turned upside down and even then, you still can’t comprehend how life changing something like Autism is. Little things most parents take for granted can be huge dilemmas for families living with Autism.

We have never looked at Henry’s autism as a negative. We love who he is. We are grateful for him and the positive impact he has had on us and on those around him. I, personally, am 1000 times the person I was before Henry. That said, life is very different for us and very challenging at times. You learn over time that your journey in parenthood isn’t what you expected or envisioned it to be. You learn to be whatever your son needs you to be. Parenthood is about raising and celebrating the child you have, not the child you thought you would have, but I will admit that realisation can be a painful one. Henry is exactly who he is meant to be and he has been the teacher to make me who I needed to be.

Sadly, while the world is doing it’s best to improve in many aspects it is still some way from understanding this. One key area that needs addressing is the education system. The one size fits all schooling system, simply put, just doesn’t fit all children. The lack of appropriate settings for children with additional needs is another huge problem.

When Henry was coming of age for School we decided a mainstream setting would be our preference. We hoped, perhaps naively, that being in the presence of neuro typical children might aid Henry’s development – he is currently non-verbal. I wouldn’t say we regret that decision, lots of wonderful things have come from being in a mainstream setting, but it had become clear that on a day to day basis Henry was ‘coping’ and no parent wants their child to simply cope.

There are severe learning difficulty settings and moderate learning difficulty settings but not enough of them. Given Henry’s challenges it’s obvious he requires a severe learning difficulty setting so we began to look around. We decided on the school we thought would be most appropriate to meet Henry’s needs that would be the most geographically appropriate too – we also have a daughter to think about, who will remain in her current mainstream setting.

After applying for Henry to join the named school we were dismissed very quickly. For context, said school received over 100 applications per year and can accept a maximum of 10 new students. This isn’t the school’s fault, this is the fault of the system and the lack of resource. As a parent you are totally lost at this point. What can you do? All we could do was fight back which, as you can imagine, isn’t made easy for you.

We appealed and appealed and after months of back and forth we felt like we were getting nowhere. We eventually got our ‘day in court’ and this is when we came across IPSEA, and in particular Austin. I should say, my wife deserves every ounce of credit. She was the one that navigated the system, she was the one that found and reached out to IPSEA and she was the one that, with Austin’s help, took the fight to the local authority. The system just doesn’t support you in any way.

IPSEA offers free and independent legally based information, advice and support services to help get the right education for children and young people with all kinds of special educational needs and disabilities (SEND). Even if you can afford independent legal advice, which many can’t, you need the expertise of those who have fought the system before.

The struggle facing thousands of families of children and young people with SEND can take years to resolve and often has a devastating effect on children and their families, so the advice and support IPSEA provides is vital. I can only speak for our experience but I saw what it was doing to my wife and the toll it took on her.

When the school shared their robust evidence detailing why they couldn’t take Henry we were floored. I think at that point, without IPSEA, we were beaten. I don’t know how long it took but Austin prepared our case, politely asking a very passionate mother to step aside, and for this we will never be able to repay him. When we received his responses some hope was restored.

Our story has a happy ending. We settled ‘out of court’ and Henry was offered a place at our preferred school, on the proviso we waited until September. This process from start to finish took something like 18 months – 2 years to resolve. It was a cloud hanging over us every day. We were not going to pass this up. Henry will still have the same challenges, but he will be in an environment every day geared up to support him with those challenges. As a parent you just want your child to be happy and we just hope that Henry can now thrive, not cope.

It doesn’t have a happy ending for all families and that is why IPSEA will be so important moving forward. We can’t ever repay the work Austin did with us but raising them some money is one small token of my personal appreciation. More so than the money I wanted to raise some awareness because, unless you are in our boat, you just wouldn’t realise how badly children with additional needs are being let down by the system.