Home, School, and Family

Kerry Fender by Kerry Fender Additional Needs

Kerry Fender

Kerry Fender

Down’s Syndrome, my family and me – one mum’s account of family life with an extra chromosome.

The Stripey Socks Crisis Homeschool has an Ofsted rating of Absolutely Abysmal. We have one pupil, one unqualified member of staff and hardly any appropriate equipment or resources.

We have gone from sitting down for a period of formal learning on the key subjects of English, Maths and Science, through telling ourselves that it might be ‘more beneficial’ (i.e. easier and less stressful) to focus on practising functional skills for living instead, down to simply keeping Freddie busy doing any old thing so that he will sleep at night. Basically, we’ve descended to the level of my own education at a 1980s Comprehensive School, which made little pretence of teaching but simply kept us kids off the streets and out of mischief for the day.

There seems to be a very clear demarcation in Freddie’s mind between home and school. School is where we sit down and do learning and school stuff and home is where the pressure is off, we relax and bumble about doing nothing very much. We’ve tried to explain to him why he cannot go to school at the moment, using ‘fun’ ways to get the information across, like Dr. Ranj’s ‘Get Well Soon’ programme.

Some of it has clicked with him, especially the bit about washing hands. Unfortunately, he has turned this into yet another power struggle, resisting hand washing, and touching everything in sight if we go out and then licking his hands. Lately he has become an angry, challenging and thoroughly provocative child. As the weeks have gone by each day has become more of a battle to get him to get him to engage in any kind of meaningful activity at all.

I have tried taking the learning to him, sitting on his bed with books and my laptop balanced on a chair, but then it becomes a physical battle to stop him from kicking the chair away and tipping my computer onto the floor.

Just How DO you get a child like Freddie, with learning difficulties and a very short attention span, motivated to work and focussed on the task in hand? How do you differentiate, break things down, so that he can ‘get it’? I simply don’t have the knowledge to be able to manage this effectively at home.

As a result of this period of enforced ‘home learning’ I have developed a very deep respect for the incredible skills and dedication that today’s teachers bring to the job, especially those in Special Education Schools.

Now before you start trash-talking Special Schools or trying to guilt-trip or undermine me for choosing to send Freddie to one, don’t waste your breath. For some children, a Special School is the only way they can get a truly accessible and meaningful education – one where they are able to focus on learning rather than just on trying to cope in the environment.

One thing the lockdown has made me realise is just how lost Freddie would have been in a mainstream school, where the teachers do not have the specialised training, experience and expertise that the teachers at his current school have. It has also made me more aware of the level of challenges that Freddie faces, not only compared to his typically-developing peers, but also compared to many of his chums in Special School. It has confirmed to me, if I needed any confirmation, that I did the right thing in sending him there.

Towards the end of the summer term, several of Freddie’s friends drew pictures and wrote messages to say that they would miss him, which were sent home with his school report, or arrived via social media from their parents. With the best will in the world, Freddie would not be able to reciprocate in kind – hypotonia makes writing and drawing legibly difficult and tiring, meaning he is reluctant to pick up a pencil at the best of times.

Also, his expressive language skills do not match his receptive language skills – he can understand far more than he is able to express. He has thoughts, ideas and feelings just like everyone else, but finds it difficult to frame them as words. There is so much that he cannot tell me, and this was brought home to me forcibly on the last day of term.

Freddie’s school arranged a Drive-thru Art Gallery to give those children who had not been in school a chance to mark the end of the school year. The teachers created displays of the pupils’ artwork accompanied by photos of them and lined them up along the driveway that sweeps past the front of the school. Families were invited to drive slowly through in a one-way direction to view the art from the shelter of their cars, and wave and call out goodbye to the teachers lined up alongside.

We spotted a photo of Freddie’s best friend, a girl he’s known since nursery. He looked at it and said, so plaintively, ‘I miss you.’ It was the first time he had been able to express his feelings about lockdown and the effect it had had on his life. No wonder he has been acting up. We were both crying as we drove away.

The end of the summer term was always going to be emotional.

Freddie is now in Year 6, and this was his last year at his current school, where he has been a pupil since he was three-and-a-half. Since he started, this school has been our only source of support, and being without them for so long has brought home to me just what an unfailing ally they have been for us as a family.

The teachers were strangers when I first took Freddie to the school, and entrusting my precious, vulnerable, misunderstood and discriminated against little boy to strangers was very scary at first, but by the time we parted, eight years later, we did so as fellow members of a very special school family, and driving through those gates for the last time felt like leaving home, and safety, behind.

The prospect of starting all over again at a new school was always a scary thing, too; but I knew his current school would hold our hands all the way through the process. Then Coronavirus came along and barged in between us and made everything uncertain and even more scary.

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