Personal Stories – Xander’s Story

Xander’s Story

Being a parent of a child with SEN is a club no-one wants to be a member of. In fact, when my son was first diagnosed with learning disabilities (plus a few physical disabilities thrown in), I actively avoided parents of disabled children. I withdrew in horror at any knowing and understanding nods or even, heaven forbid, parents who had it worse than me. I didn’t want anything to do with them, I didn’t want to be understood and join the club of devastation. I wanted to be wrong. I wanted to hide away until the disabilities got better and no one need know that the words “your son will never be normal” were ever said to us.

Although time hasn’t healed Xander, it has tried to heal the deep wound those words left, albeit with a truckload of scar tissue that wrenches every time some well-meaning parent of a “normal” child says “Yes, but all children are difficult” or when he does something “disabled looking” that betrays the limitations in his beautiful little head.

But, on that terrible day when he was diagnosed, I didn’t realise that it was not only a sentence for Xander, but also for me. Months passed and the occupational therapy (OT) department still hadn’t been in touch, despite the assurance from our paediatrician that it was one of many therapies that may help him. I began to realise that the overstretched NHS systems, as well as the croupiers of fate, weren’t on our side. I began to feel anxious that every week that passed when he wasn’t having therapy was a week he would never get back. Another week with a chance to progress had been lost. So I made some calls. I chased the occupational therapy team and when we didn’t hear back, I called again and again.

Making it happen

I called the speech and language department, as I had been expecting an appointment for therapy for months. They told me that he was on a waiting list for a speech and language therapy assessment; not the therapy, just the assessment. The waiting list was eight months long. In horror, I said: “But we can’t wait that long; he screeches all day long because he can’t talk”, and she replied,
“Oh, in that case we’ll see him immediately. Can you do next Thursday?”

It dawned on me that this was how it was going to be. I was going to have to fight to get Xander the right support every step of the way. Every time there was something Xander needed that was dangled just out of reach, I would have to make sure we got it.

This became my second job. I was Xander’s PA. And it worked. Once I realised that I could actually affect Xander’s future with research and dogged determination, it became everything to me. I have always found great satisfaction in victory, and what could be more victorious than saving your child?

And my ultimate goal? The perfect school for Xander. Importantly, not the perfect school – somehow I don’t think we’re aiming for Eton – but the perfect school for him. He sits like Christopher Robin somewhere on the staircase of ability that has Amal Clooney at the top and an aubergine at the bottom. And the school, is somewhere on the educational staircase of provision (a big SEN buzzword) that incorporates academia, philosophy and of course the other pupils. The trick is finding and getting into the school that’s on the same step as Xander.

A time of hope

So I researched. I talked to SENCOs. I trawled the internet and networking sites at 3am. I went to look at SEN schools and I visited mainstream ones. And then I found it. The perfect school for Xander. It had a teacher a lot like the Good Witch of the South, who promised a utopia of support and mainstream interaction. Even weekly swimming lessons for my water loving baby were on offer. I danced out of the school knowing that, despite the odds of just eight places in each year group for over 50 applications, I would make it happen.

I created my list of what this school, let’s call it Southford School, could offer: a sensory room, in house OT, daily speech and language therapy, and interaction with mainstream children. Then I matched it with reports from numerous professionals, which all collated to convey that Southford was simply the only school that would be suitable. Do you hear me members of the school placement panel? The only school.

That was the problem. I genuinely had no plan B. He simply could not go to mainstream. He wasn’t potty trained, he couldn’t talk and he dribbles constantly. I wasn’t at all keen on the sister school nearby with a similar but lesser offering, and I categorically did not want him to go to what we’ll call Northday, the SEN-only school. It hadn’t been built yet so there was nothing to see, which I felt gave me nothing to trust. And anyway, I wanted him to be mixed in with mainstream pupils. At his nursery, his SEN class mixed regularly with the mainstream pre-schoolers and he made numerous friends. In fact, he’s regularly invited to their birthday parties when other children I know aren’t. It’s all over his paperwork: he is very social and very popular, despite not being able to speak.

A waiting game

The monstrous pile of paperwork went off to the panel members and the panel sat. I drank a lot of caffeine and at night I drank a lot of wine. As the day when we expected to hear about his school place drew closer, I stared at the doormat and snapped at anyone who called and interrupted my anxious stewing. And then, one Tuesday, there it was – a big fat envelope stamped PRIVATE AND CONFIDENTIAL hung from the letterbox. I tore into it and the word “Northday” shouted out at me. I screamed and raged and threw the papers at the wall.

I called everyone I knew, hiccupping my fury to them. I couldn’t reach the case worker – I never could – but this time she was right to avoid my call. I was furious. How could they put this tiny, vulnerable, beautiful little boy in a school full of children far worse than him? He loves other children, he cuddles them and holds their hands and cries when they cry. How could he possibly manage in a school where the Head told me that she once had a pupil who projectile vomited every single time she was upset or excited. I cried until my head hurt.

I angrily asserted to anyone who would listen that we would appeal. And I was told that we had just ten days (with Easter in the middle) to submit our reply. An appeal would never happen within ten days – ten weeks if we were lucky – and if we didn’t accept the place within the ten days, we would lose it. If we also lost the appeal, which I was assured was likely, we would be forced to send him to mainstream.

The next day, I called the SENCO at my beloved Southford to ask, before I appealed to send him there (though I didn’t know how as those precious eight places had now been given to other children), if she knew why he hadn’t been allocated a place. She asked me to describe his needs. “He’s not potty trained”, I said.
“No, that’s no problem”, she said. “We potty train children all the time”.
“And he doesn’t speak”.
“At all?”
“No, not at all”, I confirmed.
“We don’t take any non-verbal children”, she said.

Realisation dawns

I felt as if the hurricane I had been sat in had suddenly stopped. “You don’t take any children who don’t speak?”
“No, they simply couldn’t cope; our unit children spend 50 per cent of their time in the mainstream part of the school”.
This was also big news to me. “But when I visited in October there was a little boy there with Xander’s condition who didn’t speak”. She explained that she knew the boy I was talking about and he had since left the school because he couldn’t progress there.

So everything I had been fighting for had been wrong. He was never going to be offered a place at Southford and he couldn’t have coped there if he had been. Perhaps I should have been devastated, but I wasn’t. I was full of relief. This meant that Southford had never been on the same step as Xander on the provision versus need staircase, but Northday was. If those children who also couldn’t quite manage at Southford would be in his class at Northday, they would have equivalent needs and he would have friends. This meant it was Northday that was the right place after all. And that was it. No appeals or tribunals or expensive private assessments. Instead, I could spend the summer shopping for his school uniform and playing in the park. We could see our friends again and have some fun. The fight was over.

Yes, of course, I’ll be watching him like a hawk at his new school, but I would be doing that with any school he went to.

Opening up the system

I do feel a little sad that this agony could have been avoided. If Southford wasn’t so scared of appearing exclusive, they could have told me my son wouldn’t fit in, or better yet, put their criteria on their website. Their SENCO, when she visited Xander at his nursery, could have quietly told our key worker that he wasn’t suitable. Or perhaps our case worker could have been given the power to tell me which school she thought was likely, as she later told me she had had a very good idea which school she thought he would be offered and why.

We live in an age of secrecy. Organisations are so scared of being sued their staff can’t give an opinion or state criteria. Patients aren’t allowed to see their own medical records and teachers are asked to write objective reports without opinion, just to tick boxes. Councils, schools and hospitals are simply too scared to make their information public and it has created a great gulf between governmental organisations and the individual.

Parents used to side with the teacher over bad behaviour in pupils but, with emasculated teachers needing to stick to a script to protect the school and themselves, they become inhuman to the protective parent and suddenly the parent and teachers are at war.

I strongly believe that when parents are truly allowed to be a part of their child’s education, as schools and Ofsted so desperately want them to be, they won’t feel so defensive. Instead they will be working alongside the school and the system as part of a team.