Our ‘New Normal’?

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.

Even before Coronavirus came along, I suppose we had been looking forward to a ‘new normal’ this year, with Freddie’s impending transition to High school.

We knew that this was likely to be an uncertain, and probably difficult, time – as Freddie struggles with change of any kind – but we could never have anticipated just how difficult and uncertain it would turn out to be.

At his Annual Review in the spring term of Year 5 a keyworker from the LA was present. She suggested, gravely, that it was time I started to think seriously about Freddie’s eventual move up to High School: look at what options were available, maybe arrange to visit likely schools or find out if they had any Open days coming up. She was very surprised when I said I had already done all those things and already knew exactly where I would like him to go (and that he agreed); I was surprised that she was surprised – didn’t all parents start to worry about this once their child was in Year 4?

I was already fretting about it by the end of the summer term in 2018. I decided to do something about my worries, and I hit the ground running as soon as he went back to school in the September. We knew it would have to be a SEN High School, and that locally we had two options. I arranged visits to both during a normal school day so that I could suss out the feel of each place, see pupils and teachers interacting in the classrooms, and have a chat with a member of staff about the general ethos and working methods of the schools. I quickly developed a preference and luckily this school had a couple of weekend Open days for Year 5 families coming up so I could take Freddie and Daddy along to see it too.

My preference was duly noted by the LA ready for inclusion in his EHCP at his Year 6 Transition Review, and by the school so that they could begin preparing him for the move there.

At his Transition Review at the beginning of Year 6, I was told that it was unlikely we would get transport to school even though I cannot drive and the distance is further than a child with Freddie’s level of hypotonia and joint hypermobility can reasonably be expected to walk, even with an adult.

Does the LA really imagine that any parent has the time to spend four hours a day doing the school run? Luckily, Freddie’s current school went into bat for me.

Now that his new school was named on his EHCP the work of preparing him for the transition could begin. There would be visits to the new school, activities to take part in, visuals to support him. The transition would be carefully managed: he wouldn’t be just dropped in at the deep end.

I began to relax a little then, though there was always the lurking fear in the back of my mind that the school I had chosen might not offer him a place for one reason or another, even though it was named on his EHCP (that happened with my eldest child). If that happened the only other option we had was a school where he would have much less opportunity to make meaningful, reciprocal friendships – and one of the most important aspects of High School is the social education that it affords. All I could do was wait, and keep my fingers crossed.

I expected to receive an email about his school placement on 2nd March along with everybody else. I didn’t get one.

I queried this both with his current school, who didn’t know, and with the LA, who passed me from pillar to post as his keyworker was said to be either on leave, or on sick leave, or on maternity leave, depending on who I spoke to. Eventually, in desperation, I called the High School, and they told me that as far as they were concerned there was a place for him if we wanted it, but we’d have to wait for the official notification.

The week that I was finally officially notified that Freddie had not only been awarded a place at the school of our choice but also transport, was the first week of lockdown. Any relief I might have felt was immediately swept away by the realisation that all the planned preparation, the activities, the visits, would not now be able to take place.

Towards the end of June, I got a call from Freddie’s new school. They had managed to arrange some transition sessions if we would like to go – three new pupils at a time could visit the school for one hour a week and do an activity together, each sitting at separate tables.

The thought of taking him there in the middle of a pandemic made my stomach churn, but at the same time I knew he needed to go. I had no choice but to grit my teeth and, once again, trust strangers with the welfare of my child. I agreed.

Freddie was able to walk about a third of the way before he needed to climb into his wheelchair. I took us an hour to reach the school. After the first session, he started to look forward to the others – a chance to be with other kids again. Of all my children, Freddie has enjoyed school the most. I began, tentatively to look forward to September. Going back to school, even a new one, would be good for his mental health, and it would give me a chance to do the things I have not been able to, or have had to ignore, while Freddie has been at home.

At the end of July we received a letter detailing the school’s plans for the full reopening. It detailed:

Twice daily temperature checks.

Hand gelling/washing routines and the sanctions to apply if any pupil refuses to comply with this or other personal hygiene/social distancing/no touching rules.

Arrangements for dropping children off at school, including no engaging verbally with staff or other pupils (except in certain circumstances).

The requirement for personal vehicles to be cleaned daily or, at least, any surface that will be touched by your child, prior to bringing them to school.

A start time of 8.40 am, meaning that if school transport still is not running (or if the local authority continues to use private hire taxis as school transport, which I do not consider safe at the moment) that we will have to set out at 7.40 at the latest – a time of the morning when I would usually still be trying to coax Freddie to have a wash and get dressed.

A request for daily laundering of school uniform.

A request that no personal property be brought into school other than a plastic carrier bag containing the pupil’s packed lunch.

An announcement that the school kitchens would remain closed and so no hot food would be provided, and all pupils must bring a packed lunch to be eaten at their desk. Freddie has always had school dinners. He consistently refuses all sandwiches/packed lunch/picnic-suitable cold foods and has done for years. He detests them. I don’t know what I’m going to give him that he will actually eat. And no, he won’t ‘eat it if he’s hungry enough’.

I knew things would have to change when he started High school, but this is weird and outlandish and stressful and quite beyond anything I ever imagined. This may be our new routine, but will it ever come to feel like ‘normal’?

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