Summer holidays; on the spectrum

Kate McQueen, IPS Employment Specialist

I remember when I was young, the summer holidays seemed to take forever to arrive, and when they did, they were over in no time. Now as an adult, it feels the exact opposite, with kids seeming to be on a break from school all the time.

As a mum of three boys, the eldest of whom is 21, I've done my fair share of entertaining the kids during the school holidays. Just when I thought I had nailed this parenting thing, the universe decided to mix things up a bit. Enter player 3, the youngest, the walking contradiction and electricity pylon expert, Max. School holidays with Max are like one long challenge on the Krypton Factor.

I knew Max was different from about 12 months old, when he was diagnosed with ASD (Autistic spectrum disorder) and SPD (Sensory processing disorder) I was not surprised. Being late diagnosed with ASD, ADHD, and SPD myself I figured; how hard can it be?

How hard can it be?

A key piece of advice I was given in dealing with Max was “routine is key." All my research before, during, and since his assessment has indicated the same thing.

Max attends a special school outside our area, as options for primary school-aged children with special needs are limited. He is transported to and from school by a bus, and he absolutely loves the journey because of his fascination with electricity pylons, he spends the entire journey excited to spot another one. His school has small class sizes, with eight children, one teacher, and three teaching assistants providing personalised support.

The school is impressively equipped with two soft playrooms, a specially adapted swimming pool, a purpose-built greenhouse, and a full activity playground. Additionally, each class has its own private playground, providing a safe and stimulating environment for the students, it’s not surprising that he loves going. My non-verbal child went from practically saying nothing to being a chatterbox. Then, half-term arrived. I was not prepared for the havoc Max unleashed on our household; I did not know someone so small could be so violent.

At first, I dismissed it and made excuses. He’s just exhausted from being busy all day every day (October break). He is just overly excited because it's Christmas and he understands more (December holidays). In hindsight, I was in denial, but by the time the summer holidays were over, the collateral damage was mind-blowing. He had broken his Kindle Fire tablet (the kids’ version, with a special protective bouncy surround – news flash, it doesn’t bounce), almost tipped the fridge freezer twice, smashed his brothers' TV, broken one of my fingers, and caused £650 (to date) worth of damage to my teeth. He was five years old. He is not particularly tall, short, or weighty. The only difference between him and a typical five-year-old is that Max is on the spectrum. On reflection, I don’t know how any of us got through that first summer. When it was time to go back to school in September, I was really worried about how Max would cope with the change. Six weeks felt like an eternity for me; I can’t imagine what it was like for him. He settled back into school straightaway; it was like he’d never been away from the place. My bright, cheerful, electricity pylon-obsessed little boy was back.

A solution that worked for us

Never once did it occur to me that Max would struggle to be away from school for an extended period, even when he was in the familiar setting of his own home. He missed school terribly. Looking back, it’s ridiculous that I didn’t see it coming, the routine we had worked so hard to perfect had ended up being our downfall.

Fundamentally we had to change our approach if we were to avoid the same issues every half term holiday. I have never been particularly good at asking for help, and I wasn’t sure where to start anyway, the school was fantastic but the best they could do was suggest joining the local SEN parent forum.

I spent many hours on the Internet researching (fortunately an ADHD hyperfocus has really helped with that), it’s been a steep learning curve, not everything we’ve tried has worked; however, I am grateful that we haven’t had a repeat of that first summer.

My initial idea was to look for SEN holiday clubs to see if I could replicate the classroom environment throughout the holidays, this was when I quickly realised how few provisions are available in our area for children with disabilities, even less if you work and can’t pick them up after the 2-hour session has ended. I attended some local council run seminars for parents of children on the spectrum, the seminar itself wasn’t all that informative however meeting other parents of children on the spectrum helped massively.

I’ve never been particularly good at making friends or approaching new people anyway, and with Max’s class size so small coupled with the fact he gets transport to and from school, it meant that I never really had an opportunity to interact with other parents, I saw it more of a perk than a disadvantage. This new resource helped massively, I came away with so many hints and tips on different things to try, it was fabulous.

I came to the realization that routine isn't the key for us; it's preparation. I needed to work with Max on coping strategies and preparing him for change in advance. I started with simple steps, such as saying things like "if everything goes to plan, this weekend we will..." and "if it doesn't rain this weekend, we will...". He responded well to this, so the next thing I decided to do was implement a timer. If we were planning to go out, I would set a timer and tell him, “When the timer goes off, it's time to get your nappy changed and leave the house." After Max's evening bath, he liked to come and lie on my bed for a cuddle before getting in his own bed, and sometimes he could be difficult about going to his room after our "chill time." I introduced the timer for this, to signal when it's time to get in his own bed. It took about a month of doing it every day before he got used to it. Now, when he comes up to my bedroom, the first thing he says is, "mum start the timer.”

Max really responded to audio and visual signals when things are about to change, with this in mind I created a countdown calendar for him. Instead of counting down how many days is it until the school holidays started, we counted down the days until he was back in school. Each morning when he got up, he would check the calendar and cross off another day, that visual representation of how long it was going to take before going back to school really helped him, it helped his understanding of time because he could see it.

We use the same “zone of regulation” chart that Max has a school so when things to start to get overwhelming he can use that, when he doesn’t have the words, keeping an area of the house quite dark also helps when he gets overstimulated, he just takes himself off until he feels better again.

I was always embarrassed about my neurodiversity and tried to hide it as much as I could, but parenting Max has given me the confidence to embrace it and the motivation to look for unconventional ways to engage and connect with him. I know that the upcoming summer holidays will be, at times, difficult but I’m also confident that by the end of it, we will have added another interesting way of handling a situation.