Two years after our son started school our lives changed dramatically. Our six-year-old boy told me he wanted to kill himself. This was the beginning of a very long journey that eventually lead to getting a diagnosis of autism.
I didn’t realise it at the time, but his diagnosis was just the start of our fight and would lead to many more battles. At the beginning the diagnosis was all we had, a label to give our child, a reason for his strange ways and an excuse for his bad behaviour.
We were not given support or guidance and had no idea what to do next. How to help him or how to understand his condition. I had to work all of that out for myself.
The lack of action and support both from the clinic and the school made me think that everything was fine. The diagnosis was all you got, and you just had to live with it. That all that could be done and needed to be done was happening already. That getting a diagnosis was the only goal and now I had that I should be satisfied.
But I was wrong, that isn’t how it should have been.
I talked to school about his diagnosis but was told that they were already doing everything they could for him anyway. At the time he was getting one pastoral session a week where he worked with one or two other children on turn taking and sharing activities.
Whilst this was much needed and appreciated, it just wasn’t enough.
I asked time and time again whether he should be getting more support. Each time I was told he was doing fine and that’s all he needed. They said there was nothing else they could do anyway. I was told he wasn’t bad enough to need more help. It seems he wasn’t quite autistic enough.
Initially I accepted this. It felt wrong but I honestly didn’t even know what I was asking for. I didn’t know how to help my son and the professionals were not helping me. I felt useless and ignored. They could easily fob me off because I didn’t know any better and regularly just dismissed my concerns.
I was getting increasingly frustrated and felt powerless as my life was spinning out of control.
I was seeing a definite deterioration in behaviour. I was handling more frequent meltdowns and life at home was increasingly difficult. His teachers constantly complained about him refusing to do his work, he would regularly run out of the classroom and hide. He would throw chairs or equipment across the classroom. Playtimes would usually result in my son either hitting another child or running off crying.
He was getting into trouble, he was causing trouble, he was difficult, and he was utterly miserable.
Calls from school were getting more frequent. I would dread seeing the school number appear on my phone. These calls were never about my daughter. Neither were they ever good news.
They would always start with “there’s been an incident” and my heart would sink.
He’s punched someone in the face. He’s thrown a whiteboard at a child. He’s distraught and won’t do anything, can you pick him up early. He’s taken his coat and bag and says he’s going home. He’s sworn at another child. He’s called the head teacher a “stupid b**ch”.
The list goes on. These are real life examples not hypothetical examples, all of these actually happened.
The evidence was clear to see. He was NOT coping with school. He was NOT getting enough support. He was NOT fine.
School were failing him, the system was failing him, but worst of all I was failing him.
I knew he needed help, but I didn’t know what help was needed. I’d been polite and trusting and it had got me nowhere. I’d asked for advice and guidance and been given nothing. I’d accepted what the experts told me about my son, but my instincts told me they weren’t right.
After years of listening to bad advice and going along with the constant denial that there was anything that could be done. I finally decided it was time to do something about it myself.
I realised that I was the person that could change things.
Nobody else would ever care as much as me, so I had to take control. I had to stop letting other people make all the decisions about my son’s future and our family life. I needed to work it all out for myself and take positive action. I had to find out what help my son needed and make sure he got it.
So, I got to work, and I did my research. I read books, I found support groups, I talked to other autism parents. I looked for information online, I attended autism conferences. The more research I did the more I discovered I wasn’t alone on this journey and it was a very well-trodden path. Worryingly similar patterns emerged.
Lots of other parents had the same experience, the same frustrations, the same battles. I realised I’d been lied to for years and it made me angry.
Now I was even more determined to change things.
Once I had a good basic understanding of autism my most effective research subject became my son. I started to look at things from his perspective, I watched him, I listened to him and I talked to him a lot about his feelings, his thoughts and his worries. My son is incredibly articulate and has a lovely way of explaining things. He describes his feelings visually and I often end up sketching rather than writing notes.
At this point he didn’t know about his diagnosis. He didn’t understand why he was different, but he recognised that he was different to other children.
The more I observed, the more adjustments I made, the more he started to trust me. He realised that talking to me and sharing his feelings got positive results. I started to see how my understanding of his struggles and my calmer and more considered approach was benefitting him. Slowly but surely, I was seeing my son change. I was noticing myself change too.
Over time I became the expert. I became a strong and confident advocate for him, and I knew my purpose. I had a clear objective, and nobody was going to stop me now.
It was finally time to call a meeting at school, and this time I meant business.
I contacted the head teacher directly and insisted on a meeting. I wanted all the key people to attend. The head teacher, his class teacher, the SENCO and his pastoral support teacher. I wanted everyone around the table at the same time so nobody could delay any decisions or deny what was happening.
I wanted action and I wanted commitment from all parties that it would happen. I’d had far too many meetings just with the teacher who could then stall a decision pending a check with someone else. Or meetings with the SENCO where I’d be told they would discuss ideas with his teacher. This usually resulted in poor communication, delays or even nothing at all changing. I was determined this wouldn’t happen again.
Once the meeting was agreed and the date was set, I made notes about everything I wanted to achieve. I’d researched what I was entitled to and what support should already have been provided. I wasn’t asking for anything above and beyond what I knew I should be getting.
I knew there was nothing they could legitimately refuse, but they had been doing just that for two years already.
I contacted a service called SENDIASS (Special Educational Needs and Disability Information and Advice Support Service) and they helped me to understand my legal rights. Sadly, they also advised me on some of the common ways that schools delay or avoid giving the support.
As part of their service they can send a representative to attend meetings with you. They don’t speak for you or ask for anything on your behalf, but they are there to ensure that you are told the truth. If you are denied something you are legally entitled to, or misinformed about how to access it, they will interject with the facts.
A week before the meeting I informed the head teacher that my husband would also be attending and a SENDIASS representative would be joining us. I wanted the message to be clear that this was a serious meeting and I intended to get results this time.
The day of the meeting arrived, and I was absolutely clear on my objective. I was organised, prepared and had my wing men. I felt determined and confident about what I wanted to say and although I felt calm and in control, I was still nervous. It felt like this was my biggest opportunity to get things right and the stakes were high.
Everyone was there that I had requested to attend however we had a stand in SENCO because ours was off sick. Initially I thought this would be a repeat of the usual excuses. This lady had never met my son and didn’t even work at our school. How could she possibly help?
Introductions over, her opening line was “so, tell me about him”. This was like a red rag to a bull. I’d spent years telling various people about him, to no avail, I wasn’t going to do it again. This meeting was for action not fluff. If she didn’t already know anything about him, she was no use to me.
I was cross but determined to keep control. I simply announced that I had a list of requests and requirements and would prefer to crack on with discussing those and if any further detail or explanation was needed, we could discuss as we went.
She seemed a little surprised at my directness, and I could sense my husband shrinking a little in his seat next to me, but crack on we did. The meeting went better than I ever imagined.
Every single request was discussed and agreed to. Every requirement met and every concern acknowledged. Support I’d spent years asking for was suddenly available. Accommodations were agreed and formal assessments were promised. I came away with written commitments, a clear plan in place and a slightly giddy feeling.
The SENDIASS representative hadn’t said a word for the entire meeting, just her presence was enough. The stand in SENCO turned out to be amazing and totally exposed the woeful shortcomings of our own school SENCO. I finally felt as if I was being taken seriously and was certain everything would change for the better.
At the end of the meeting the three of us left together after saying our thanks and goodbyes. We signed out of the building and headed to the gate in silence. It was only once we were completely off school grounds that we made eye contact and dared to speak. We laughed, we hugged, we couldn’t believe what had just happened.
“We did it, we got everything!”
None of us expected the result we had just achieved, and this was an absolute defining moment. Since this meeting everything has improved massively. It hasn’t been an overnight success by any means, but this was certainly the turning point. The calls from school gradually became fewer, home life got calmer and my son found his smile again.
Love and Hugs,
Nadine
xxx
Coming soon How to Request & Plan a School Meeting Workbook: What to ask for and how to make sure you get it.
All content created for and written by myextraordinaryfamily.com is based on my own personal experience as an autism mother, partner and advocate. I am an expert by experience and do not have official qualifications in autism. I live my daily life constantly learning, supporting and advocating for my neurodiverse family and speak from this point of view. Any advice given is purely based on what has worked for me and my extraordinary family and I offer no guarantees that you will have the same results with your unique family.
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