I am a mother of three. My eldest child has no disabilities and is neurotypical. Though we’ve had a few issues in the education system due to bullying (largely about him having disabled family members), and problems where the school system haven’t considered the impact of his being a young carer, it’s generally been plain sailing. He’s gone to two of the best schools in our area, despite them being out of our catchment area and he was automatically accepted into both. His journey through the education system is, for the most part, how it should function.

My middle son, who I call Minkey, is autistic and has ADHD, dyscalculia, dysgraphia, dyslexia and is learning disabled (with a couple of other diagnoses too). He went to a mainstream infant school where he thrived. The staff were attentive, engaged with the local special school, and put in place several provisions without ever being told they had to. His experience in junior school, however, was another story. There he was bullied mercilessly with kids chanting repeatedly at him that he was a “retard”, even repeatedly pulling his trousers down. His teacher labelled him “unteachable” and rather than educate him they left him at the back of the classroom not doing anything all day. I had to remove him from the school and home educate him for 2 years.

My youngest son, who I call Mr S, is currently under assessment with the Child and Adolescent Mental Health Service (CAMHS). They are veering towards diagnosing him as autistic. He has struggled socially since playschool. He has always been very socially isolated and, not knowing how to improve the situation, he has large meltdowns. He is very intelligent and requires no overlearning (needing to learn the same thing repeatedly). Rather than engage with the local special school, or even CAMHS (though they eventually realised they had to) they set him up with a middle aged woman as his playtime friend and he sat inside colouring with her. Needless to say, this did nothing to quell his anxieties and so his meltdowns continued. I was called in several times per week, but they didn’t change anything or seek external support. Eventually my son went missing from the school, and they simply called the police. The school was next to a very busy dual carriageway but they didn’t look for him. Local schools sent people out to find him, but his own school did not. He kept running in front of cars, and eventually was only found when he, simply by chance, ran out in front of my mother’s car. It was only luck that she managed to emergency break in time. That day I decided to remove him from the school and for just over a year he has been educated at home for the second time.

With both of the two younger boys I have had to fight to get them an education. I wrote Minkey’s statement (legal document setting out their needs, which, if accepted, becomes legally mandatory) myself with some support from his CAMHS’ key worker. I went to every mainstream junior school in our area to talk about him attending there. A few places were at capacity, but time and again, from schools significantly below capacity, we were held off at arm’s reach. “I don’t know if you know this”, the well-worn story goes, “but they’ve changed the way that SEN funding works. We now have to fund the first £6000 ourselves so it’s very unlikely we could give your son the education he needs.” This is then expanded with tales of how bad it would be for our son to go there “he’d have to share a teaching assistant, even if the statement says he has to have his own”, “he couldn’t get enough hours support”, “we couldn’t guarantee that we would be able to ensure he made suitable progress academically”. “have you thought of a special school?”. “maybe he would be happier staying at home with you”, “I don’t know why you would think this school would be any better for your son than his old school”, “you should try x school, they’re better equipped for these sorts of children.” Each time we heard the same refrain I decided he wouldn’t go there. It seemed like a recipe for repeating the same terrible treatment he’d already had, which had led to my son telling me he wanted to kill himself.

I reached out to the LEA and they tried to convince me to send him to an Emotional and Behavioural Disorder (EBD) school. He has always been perfectly behaved. He’s the very opposite of every Daily Mail “naughty child syndrome” caricature. He’s polite (he even bows and kisses hands), he’s gentle, and even his meltdowns have only ever led to him hurting himself. An EBD school would have petrified him. He has sensory processing difficulties and he would never have coped in such an environment. I started to veer towards wanting to send him to the local special school. They had told us that even when at full capacity they had never turned a child down, and they were incredibly well-equipped. I had never believed in segregated education, especially as I’d been forced out of my own mainstream school due to being disabled.  But we were finally being met with open arms, and we knew that our son would be safe and cared for there. It took a fight to convince the LEA but eventually they conceded.

We are now in the same situation with our youngest son. Since September he has been attending a special unit twice a week, whose aim it is to keep children with special needs in mainstream education, and, failing that, to support them to transition into an appropriate special educational provision. We approached several schools in the area about our son attending there and again met with, “I don’t know if you know this, but they’ve changed the way that SEN funding works. We now have to fund the first £6000 ourselves so it’s very unlikely we could give your son the education he needs”, “he’d have to share a teaching assistant, even if the statement says he has to have his own”. “he couldn’t get enough hours support”, “we couldn’t guarantee that we would be able to ensure he made suitable progress academically”. “have you thought of a special school?”. “maybe he would be happier staying at home with you”, “I don’t know why you would think this school would be any better for your son than his old school”, “you should try x school, they’re better equipped for these sorts of children.”

Eventually one school was forced, by the unit to accept our son, largely due to the unit offering to cover some costs, and we were slowly preparing for this, but then we had to move house, and my husband is having to consider changing jobs, which would mean losing his flexible schedule. The school was therefore too far away and my husband would no longer be able to drive him to school and pick him up. There is a school a couple of roads down from our new house though and so I inquired about sending our son there. “Yes, we have places available,” we were told. We explained that our son was under CAMHS and in the unit, and they said that before we went any further they would get their SENCO (Special Educational Needs Coordinator) to call us to discuss things in more detail. We didn’t hear back. We called again, were told to expect a phone call, and again didn’t hear back. I told the unit that I’d like to send him there and they tried to make contact with the school. Suddenly they went from having several places available, to having no places available. The head of the unit and the Area Inclusion Coordinator (INCO) had a meeting with my husband (I’ve been too ill to attend in person) and they had checked the system and there were definitely still places at the school. What the school was doing was illegal and text book discrimination. The INCO and head of the unit tried to talk us into sending him to the original school, but it couldn’t happen. I’m a wheelchair user who can’t drive. I said to them that it would only be possible if they could assist us with transport. The LEA refused. If he went to a special school transport would be automatic, if our catchment school was over 3 miles away, transport would be automatic. Neither applied to us. Though it wasn’t our catchment school it was the only option we had, but it didn’t make a jot of difference.

For the next few weeks I had repeated emails from the head of the unit. “Have you tried x school?”

“They’ve made it clear they don’t want a child with special needs.”

“Have you tried x school?”

“It’s miles away. I still can’t get him there.”

“Have you tried x school?”

“They have no places.”

Eventually, in February this year, this became, “S is now ready to transition to a school. There’s no need to keep him here other than finding him a school place.”

“The only school I could get him to as a wheelchair user is the one around the corner. If he can’t go there then the LEA needs to provide a taxi. If they won’t do that, and he can’t go to that school then I will just have to continue home educating him.”

“Well, there is a special rule called, Fair Access. If it’s the only appropriate school for a child we can put in an application and invoke this rule”

Meanwhile, I’m thinking, why on earth have I only just heard about this rule despite fighting the LEA since 2011?

A few weeks went by and finally we were invited to take Mr S to look around the local school. This took place this morning. I was too ill to attend, but my husband reliably informed me that the first thing they said to him, in front of my son, was, “I don’t know if you know this, but they’ve changed the way that SEN funding works. We now have to fund the first £6000 ourselves so it’s very unlikely we could give your son the education he needs.” The rest of the meeting continued in this vein and they said it all in front of my son.

He has no learning difficulties; he is not learning disabled. I know that the special school would be an inappropriate option for him. But what am I supposed to do? He’s desperate to get back into school. Alas, my options now are a) put him in a school that doesn’t want him, and will likely make a point about how inappropriate it is, b) send him to a special school, which will not teach him to his academic potential or c) home educate him, though I’m not well, and he doesn’t get to see other children very often.

Things are supposed to have moved on over the past 50 years. Inclusion is supposed to be the buzzword. The law prescribes inclusion, but that is a world away from the execution of the law. Before I had to fight to get two of my kids into a school I believed that things had changed since the mid-nineties when I was forced out of school. It’s been a bitter disappointment to discover that inclusion is meaningless.