As we bring our Autism Awareness Month series to a close, Sandra shares the story of her son Sam.

Sam is autistic, and like many people with hidden disabilities, his needs are not always obvious to others. Sandra speaks honestly about public judgement, the constant fight for the right support, and the difference that nurturing education, family help and the right environment can make.

But above all, this is a story of pride. Doctors once said Sam would never walk or talk. Now he skis black runs, has built friendships, gained confidence and found greater independence. His story is a powerful reminder of what the right support can make possible.

Like a lot of our young people, Sam looks to outsiders like he doesn’t have any disabilities.

It is only when he starts to talk, or when he starts spinning around when he thinks nobody is watching him, that people begin to realise. And when you are out in public, people do stare.

The good thing for Sam is that he is totally oblivious to it. He is also totally oblivious to how loud he can be, which means we are often asking him to use “his inside voice”. As he has got older, though, he has developed a fabulous sense of humour. He loves teasing people, and that side of him is wonderful to see.

But behind all of that, as parents, you learn very quickly that you have to fight for almost everything your young person needs.

It never seems to end. As soon as one problem is solved, another one appears. Sometimes you honestly think: “I can’t do this again.” But you do. You find the strength from somewhere, and then the next battle begins.

You learn not to give up.

Thankfully, Sam does not know most of what goes on in the background. We only tell him what is happening when we have a solution. At the same time, we have to be very careful when we discuss him, because he has the ears of a bat and always knows when we are talking about him. Then he wants to know what is going on.

Learning how much Sam understands, and how best to communicate with him at his level, was one of the biggest challenges for us.

We were lucky in many ways with Sam’s education, although even then, we still had to fight for what we knew was right.

Sam started at Longmoor SLD Primary in Sutton Coldfield when he was two and a half. He went to nursery there, and they supported him to go to nursery with his brother at Hillwest Primary in the mornings. In the afternoons, he went back to Longmoor with his teaching assistant.

The head at Longmoor then helped him get a full-time teaching assistant so he could go to the same school as his brother. In Year 5, Sam started going to Langley Primary for one day a week with his teaching assistant and a couple of classmates. It was a slow transition into the SEND school system, and it worked because nothing was rushed.

It also gave his classmates experience of different disabilities. Sam’s classmates were always very protective of him, which meant so much to us.

By Year 6, he was at Langley full-time. The experience was nurturing and supportive, and it was exactly what it should be for all SEND children. We also had the full backing of the headmistress at Hillwest with the decisions we made for Sam. That made such a difference.

Secondary school was also a very positive experience for Sam, once we got the school we wanted.

He went to Queenscroft in Lichfield, but we had to fight for that because it was out of county. It turned out to be another very good school, with a real family feeling and a nurturing ethos. Sam loved it so much that I do not think he missed a day of secondary school.

That kind of environment matters. Unfortunately, it can depend so much on the leadership team. When good leaders retire or move on, that feeling can be lost.

Sam Skiing in Italy

Then Sam went to Derwen Residential College, and that was the making of him.

He went there having never really made a proper friend before. He came away with a best friend. His confidence soared, and his ability to communicate improved so much.

Derwen is hard to describe unless you have seen it. It is such a welcoming and inclusive environment. It feels like a village. It is safe, but it also gives young people real independence.

Once they knew their way around, students could go to and from their different jobs and back to their house on their own. The work opportunities were brilliant too. Sam had the chance to work in places like the restaurant, café, garden centre and shop. There was also a café at the railway station and a local pub for more work experience.

The college had its own gym, swimming pool and student union, and there were trips out every week to theatre shows and other activities.

Sam thoroughly enjoyed his time there, and it brought him on so much.

That is why I feel so strongly that the right support has to be there early. In Sam’s time, his education was all about him. That is how it should be for all children with autism.

Parents should not have to fight for the provision they know will suit their child best. The money needs to be spent when children are young and able to make progress. We need to put money into the school system to support autism and train teachers properly. Without the right teachers, whether in a traditional school or an alternative setting, young people with autism will not be able to achieve their potential.

I worry that things are only going to get harder for parents, especially with the new EHCP proposals. [EHCPs, or Education, Health and Care Plans, set out the support a child or young person with SEND is legally entitled to. The government has said proposed changes are intended to make support easier to access earlier, but many parents are concerned that the reforms could make it harder to secure legally protected provision for children who need it.]

Family support has also been hugely important to us. Babysitting was the most valuable thing our family could offer. Just having a breather made such a difference. The fact that Sam and his brother Luke were absolutely doted on made it easier too.

Sam makes me proud every day.

Doctors once told us he would never walk or talk. So to see him ski down his first mountain with a massive smile on his face was priceless.

He now does black runs [some of the most difficult ski slopes] with no problems.

That is why support matters. That is why the fight matters. Because with the right people, the right environment and the right chances, young people like Sam can do more than some people ever imagined.

 

 

Pictures above show Sam with his brother and as a groomsman at his brother’s wedding