Travel Training

Marcus is 15 and turns 16 at the end of June. He gets LA school transport door to door so there hasn’t been much reason to do travel training with him or indeed much opportunity. We are doing it now, taking it slowly but surely, my preferred way to go about tackling any big step.

On Wednesday evening, he went to the National Theatre. We arranged for him to see it with one of our fab actor carers Alex so they could talk together about the set design, the staging etc and make notes as he has to write about it for his drama GCSE next month.

Jonathan (dad) saw him onto the train at our local station at 6 pm. It’s a straight journey to Waterloo and one he knows well but this was his first time travelling on the train alone. He was met at the other end by Alex.

The play finished late. 10.30pm. His big brother, Thomas caught the train up and met Marcus and Alex at the barriers to acompany Marcus home. They spent the journey sending each other daft memes and messages and having a fun time playing on their phones. Jonathan collected them from the station at our end. Thank goodness for mobile phones, which make it all so easy when arranging pick ups/getting confirmation at every stage.

I have never wanted to push the boys to travel alone until they feel ready and we’ve always started with familiar routes. I am also aware of not putting the responsibility on anyone else eg it wouldn’t have been fair on Alex to put Marcus on the train home alone, he would have felt responsible if anything went wrong. When Thomas started running with the local running shop as a teenager, we did the same thing. I would see him onto the bus and four stops later, when he arrived at the shop, the manager Ricky would message me to let me know he had arrived. I would collect him myself after the session. If Ricky had put him on the bus home, he would have felt responsible if anything happened to Thomas on the way home.

I used the same method again when Thomas started going to the running track on Tuesday evenings. After years of me dropping him off and picking him up, a carer went on the bus with him. When he was ready, he travelled there alone by bus. I continued to collect him for a long time until he was ready to travel home alone.

We have also used Ubers to get the boys home. I couldn’t collect one of the boys if Jonathan was out as we couldn’t leave the others alone in the house eg I would book a car to collect Thomas from a running celebration in the pub, then text the details and reg number to his coach/mentor who would see him into the car and I could then track the trip. These days, the older boys can all book their own Ubers and will do so if they are out late at a Uni event. Peace of mind for them and me.

Local authorities do offer travel training to teenagers/young adults but we haven’t ever used it. I’ve always preferred to do it naturally on very familiar routes, as the occasions arise.

Tolerating and filtering noise

Saturday morning and it’s still fairly quiet here. Two boys are out running under blue skies.

I relish quiet moments. My noise tolerance is low. I’ve just closed the door but I can hear the radio faintly from the kitchen and talking. I find it hard to concentrate and write with any background noise at all. Occasionally I wear noise cancelling headphones as a last resort. If I find noise a distraction and hindrance, how much more must it affect my boys?

When the boys were first diagnosed and non verbal, the advice was to restrict background noise so they didn’t have to ‘filter’ what they heard. You know, that ability, not to listen into what the couple on the next table are talking about or to hold a conversation while someone is talking on the radio?

They needed to hear single, clearly spoken words over and over, untainted by other noises.

I never played music again in the house. No radio. Luckily, I’m not a big watcher of TV and have never had any desire to watch daytime TV so that wasn’t hard but not having any music took some getting used to. In our house now, it’s the norm.

The only time I played music was in the car. Always. I don’t think I can drive without it. A paradox that I cannot concentrate to write with music playing yet I cannot concentrate to drive without it. It influenced Benjamin’s love of retro music from decades before he was born. He’s still a huge fan of the Carpenters, Beatles etc. Being in the car was not an opportunity to listen to speech or learn it, it was downtime, sing along time. We didn’t play children’s music in the car, they didn’t know it existed so I figured they wouldn’t miss what they didn’t know!

Thomas finds it hard to process speech when more than one person talks at a time, particularly if he is being given two or more instructions simultaneously eg ‘can you lay the table’ ‘don’t forget the glasses’ ‘oh and we need chutney too’ . It overwhelms him. He is now verbal and will remind us that we’re all talking at once and he can’t process . But how did he cope when he was young and couldn’t tell us?

We did a ‘noise programme’ when the boys were small and needed to be able to tolerate noise in places like the classrooms at mainstream school where they went part time with their one to one tutors. At home, we could keep their environment as quiet as possible, what is often called low arousal, which enabled them to learn. But we also wanted them to be able to integrate into everyday life which means unfiltered noise. The boys didn’t have noise cancelling headphones so we did a programme to help them. One action was to turn a radio on so low as to be almost imperceptible in the background and very very slowly increase the sound.

At school, they managed a very slow process so the boys could tolerate lunch time in a noisy hall. To begin with, just opening the door for two seconds to look in, then standing just inside the hall, then sitting to eat one very small item like a biscuit and leaving swiftly, then slowly increasing the time they spent in the hall but always being aware of their comfort so that the experience was associated with being a positive one.

These days, the boys are probably more noise tolerant than I am. We’ve managed to decrease their sensitivity, helped by their desire to be in certain environments like the cinema and theatre.

I think the ability to ‘filter’ will always be an issue so in learning situations, a quiet environment remains a necessity but in order for the boys to access mainstream life, being able to tolerate noise is a skill that was worth the time it took to acquire.

2024

It’s here. The day I have to say ‘my three boys are all leaving education this year’. Formal education that is. We all know learning never stops and leaving a place of education doesn’t mean the end of learning but for us it does mean a huge change ahead.

The most positive definition of change I found is the Oxford dictionary one:

replace (something) with something else, especially something of the same kind that is newer or better; substitute one thing for (another).

‘Newer or better’ – I need to hold onto that thought.

From diagnosis at age two, it was always about education. The fight began immediately for what used to be called a statement of special educational needs – now known as an EHCP (Education and Health Care Plan) so that we could get the one to one specialist support the boys desperately needed. We wanted the boys to learn how to communicate, to learn how to play, to learn so many life skills. It was never just about academic skills.

We placed the boys at four different nurseries locally, yes, they each went to a different nursery to meet their individual learning needs. We battled at tribunal to get the support for them to be able to learn.

They went to a mainstream primary with their one to one tutors, followed by specialist secondary schools. It was still more about learning life skills, communication and social skills. Academic qualifications were almost a pipe dream for many years. But finally, post 18, the twins went to a specialist autism provision at a mainstream college and gained some all important qualifications. The dream became a reality.

Four years later, they started at a local university studying creative degrees. They were joined by our middle son who, although three years younger, had achieved good grades in creative subjects at his school.

Our lives have always revolved around choosing appropriate educational settings and fighting for them each and every time. We are currently trying to get sixth form funding for our youngest to stay at the school he has been at happily and successfully for the past seven years.

All we have ever known is ending in six months time. Their three year degrees will be finished.

I don’t know if I feel more anxiety about the rest of the boys’ lives or if they do. They are fortunately focused on the here and now, a sensible strategy which means working on their final assignments. Their thoughts about what they might do post degree are hazy. Perhaps, as usual, they are relying on me to hatch a plan.

I don’t have one.

A Big Transition is on its way and I’m not ready

One of the biggest transitions is happening in six months time.

The end of education for three of the boys.

The twins left their special needs school at 18 and went to a local mainstream sixth form college to do Btec levels 2 and 3 under the excellent care of Ambitious about Autism who provided them with one to one support to access classes and succeed in Art (Thomas) and Music (Benjamin). They gained enough UCAS points to go to University four years later to continue studying their specialist subjects.

It was a fabulous achievement and one we never ever dreamed possible…that our twins would go to Uni. Unlike their peer group, they would not have been able to choose a random subject to study. It was because they had obvious creative talents, Thomas’ art portfolio and Benjamin’s musical ability in Drums and multiple other instruments plus their Btecs got them entry despite only one GCSE each.

Hector had achieved good grades in creative subjects at sixth form at his specific learning needs school and then did an art foundation course for a year during lockdown before starting Uni at the same time as his older brothers despite being three years younger than them.

They all go to the same local University as it offered creative courses. They needed to live at home as they still require a high level of support.

So here we are now. All three are due to finish Uni and finish all education in early summer next year!

Well meaning people keep asking me what they will do next year when they finish. Each time they ask, it adds to that growing anxiety within me. I have to bite my tongue. I have three autistic boys leaving at the same time. Three young men on the threshold of the adult world and the world of work. If I had one son needing a high level of input, it would be a challenge now to start looking into what he would do but I have three!

My brain and my energy levels are not up to the challenge.

It is already a tough year supporting them through their final year with dissertations and final projects causing them stress and anxiety. The system provides very little in the way of practical support. We have managed to secure five hours for Thomas but the other boys only get two hours a week so we are being creative in finding our own support at home.

Did I mention that our youngest, Marcus is doing GCSEs this year? He also needs our time and energy. He’s at a specific learning needs school which is excellent but he still needs emotional and practical support at only 15.

So please don’t ask me what they will do next year. I really don’t know. If you have a supportive internship to offer one of them or some work experience or a great suggestion, then I’d love to talk about the future but just asking me in general stresses me out.

My default answer has now become that they will have a gap year. How many other young people have those? Enough that I can justify that answer.

In reality, I know things will work out and there’s no point adding to the boys’ or my stress by trying to jump to the next huge life stage. We will take it as it comes. We will continue to provide for them and look after them and most importantly love them as we always have.

(Photo on their first day just over two years ago)

Finding Sarah

I lost my identity when the boys were diagnosed. I was no longer Sarah. I was ‘Mum’. It’s a lovely thing to be, a Mum. I had wanted to be one for so long. But my boys didn’t call me Mummy. They couldn’t, they were non verbal.

To those in the local authority, the system that holds us in the palm of their hand, with the power to blow us away like a dandelion clock, I became ‘Mum’. Occasionally Mrs Ziegel. Rarely Sarah.

At nursery school and then at mainstream primary, I became the ‘Special Needs Mum’. The one people don’t know how to approach, the one whose children are not invited for a playdate or a sleepover, the Mum who finds it so hard to make friends with the other Mums in the playground.

It was just how it was. Whether intentional or not, I was hardly ever Sarah except to a few close friends. I had no identity beyond being a Mum for many years.

I had no time to earn money of my own, to work in any capacity. I admire those mothers who are able to keep working after their child’s autism diagnosis. It must be hard to juggle work and the special needs world. But, I was also envious, I couldn’t put on another hat and be Sarah, the work colleague for a few hours. I was ‘Mum’ 24/7.

Four autistic children later, I almost had an unpaid job, that of counsellor to all the people who desperately needed advice and wanted to talk to me and email me about autism. My free time was sporadic and very limited. It was a better use of my time to write and hopefully reach more people. As a child, I had wanted to be a writer and although it was not a conscious intention at the time when I started writing my first book, I ended up being one.

Now, I can call myself an author, I remind myself, an award winning author on the days when imposter syndrome gets me down.

It’s not enough though. Writing is mostly a solitary activity, hidden behind a keyboard. I need to get out and immerse myself in life outside my four walls, lovely as my home and my family are.

I accept that Jonathan and I will not go off on spontaneous or planned weekends away and trips to countries we have always wanted to visit but I still struggle with us having had a single night away in a year together. On a positive, we are able to go to new places with the boys now and holiday with them in a way we never imagined we would do. The world is slowly opening up for us all.

What should I post on my mood board (my metaphorical one) to open up some new avenues? Ones that are firmly labelled Sarah and not Mum?