Follow Harry* and his mum in their own words through his final year in school, planning and preparing for his next steps.
*Names have been changed
Playing a waiting game
The story so far …
Last month Harry’s family decided to use self-directed support to employ a personal assistant to help him develop new skills, and also discovered to their surprise that he would be able to learn to drive. Their first person centred planning meeting has happened (click here to find out how they set this up), but time is passing and it’s beginning to feel very real …
November 2020
For Harry, November seems to have been his month for having a panic.
Some of this might be because school is so different due to COVID. Harry’s always enjoyed school very much, but not so much at the moment. However at least it’s familiar and as he says: “It’s what I do”.
Usually school is amazing at building a feeling of extended family and community, with assemblies, a brilliant Christmas Fayre and so on. But this year, although they’ve done their best, there’s so much that isn’t normal and right now to Harry it’s just a bit of a grind.
The school has kept in touch by email and the doctor who attended the transition planning meeting in October phoned to say Harry’s readings for autism are quite high and he should definitely be reassessed. That’s not a surprise at all as his thinking is very rigid – there are few shades of grey in Harry’s world! We need to wait now to find out how and when that might take place.
How stress is affecting planning
We finally managed to hold the first meeting of TEAM HARRY (see September diary), which included our planning consultant, a family friend and Harry’s Epilepsy Group coordinator. It had to be on Zoom and because there were so many of us it could only last 40 minutes, so it went quite quickly. Everybody was able to contribute a bit, but Harry spent most of the meeting hiding behind me and giving one word answers!
I think he would have been OK speaking to people one-to-one, or maybe all together in person, but it was really tricky for him on Zoom. He liked the consultant when they met, and he’s known the others really well for years, but having to do it virtually made it difficult.
It’s concerning because he was saying he doesn’t want a job anymore and he has worries about going to college, but I’m hoping that’s just because he’s feeling stressed and it will change.
We agreed Harry would have a one-to-one session with his Epilepsy Group coordinator – and this was really useful – he actually engaged in an hour long Zoom call and was much more forthcoming. He was able to really open up to her about how he was feeling, and she emailed me afterwards with her thoughts. It was a fantastic indicator of what he’s worried about.
His main concerns are:
- “If I go to the college campus near my house, I might not know anyone – it will be scary trying to make new friends.”
- “I feel I know [the other college campus] better as I have visited it before and I know some people who used to go to my school go there, and some friends from school are hoping to go there too.”
- “My little cousin has told me I can make millions being a YouTuber. That way I can play my XBox all day, every day and get paid for it! What a wonderful life!”
- “I’ve changed my mind about learning to drive. I do want to – but not right now – I’m worried I wouldn’t understand what to do.”
My poor boy seems quite conflicted – he’s frightened of change, which is understandable as many neurotypical folk struggle too. It’s such a fine line – I don’t want to crush his dreams but I do want him to be realistic.
He wants to be grown up, but it also makes him feel scared and uncertain.
Although the person centred planning meeting was tough I think the process will make a positive contribution overall. We’ve decided it will work better to meet with everyone in “Team Harry” one-to-one and feed back what they say to the consultant rather than try to get everyone together again.
Although it does feel that doing it this way is likely to be more work for us and take a lot longer than we expected before we have something concrete to go on.
It’s yet another thing COVID has disrupted.
Getting the right support
You might remember we advertised for a Personal Assistant for Harry with the help of a local disability support agency.
It’s felt like this is taking forever, as the funding was approved in July. One frustration is it only goes up until Harry leaves school – and it’s taken until now to find the right support, so we’ve lost half the year when he could have been developing new skills.
We had three applications, two of which were shockingly awful. They were students in health and social care, but made it sound like: “I’m doing you a massive favour applying for your job given all my experience of working with disabled people”.
They might not have used the word crippled, but that’s what it felt like they were saying.
Luckily the third application was totally the opposite so it made it very easy to see who we were going to interview.
We interviewed the man we want to work with Harry between now and the summer over coffee and cake, and Harry had a chance to chat with him. It felt really important Harry was there too because it will be his PA, they need to get on. So I was pleased they struck up a rapport over a love of Pokemon!
This man has worked as a PA for 6 years already with a family we know with two autistic sons, and he’s a teaching assistant. He’s also volunteered in lots of disability playschemes. You don’t do that over such a long period without having patience and lots of experience, which were the qualities we were looking for.
It’s about getting the right balance – we need someone who will get on with Harry but be firm when they have to, so he does things himself rather than relying on others to do them for him. If you find the right person you can make so much progress, but if you don’t you’re really wasting your time and money.
We’ve offered the man the job but it’s so frustrating. We’ve been waiting so long that I’d like him just to begin right away, but there’s all the paperwork to complete. Our forms to set up the payroll had to be done again because the people lost them, we have to sort out insurance and he needs a PVG check even though he’s already working in a school and as a PA with someone else. But I don’t want to rush it and do anything wrong as I’m frightened the council might stop the funding if everything isn’t in place.
So I don’t know if he will be able to start before Christmas.
It’s also frustrating to think this will come to an end when Harry leaves school and then everything will change again – his needs will have to be reassessed and we’ll have to think about adult services and maybe a change in payments. So we could get a good relationship set up with the PA then have to stop, or look for someone else. Which will be more change for all of us to cope with and more stress for Harry.
But for now we’re looking forward to getting this up and running as Harry is keen to get going and has been asking when his PA can start.
It’s beginning to look a lot like…
Last but not least, Christmas is looming … and Harry is worried about that too!
He is worried Santa won’t be able to come (even though he does know who really delivers the presents).
He’s also very confused about the constant changing of rules: “But Mum, you have to be in a bubble, BUT they’ve already said you can’t go into someone else’s house, coronavirus is not going to have a holiday?! AND nobody is allowed to eat roast potatoes!!!”
To be honest I think most of us are finding the rules confusing, never mind if you have additional needs.
The next formal “school” transition meeting is due in January so I hope December can be a more relaxing month …
Harry’s mum
Lots of disability organisations can advise you or help you manage a Self Directed Support budget, including supporting you to choose and employ the right services for you. Your local authority, local carer’s organisation or Citizens Advice Bureau should be able to signpost you to organisations in your area.