24th June 2021 • Carly Jones MBE
As society begins to emerge out of the COVID-19 pandemic, MFON columnist, Carly Jones MBE, shares insights into her life and what ‘getting back to normal’ looks like for a family living with autism.
Although we now have a few more weeks to prepare our young people for the lifting of COVID-19 restrictions, we’ve been aware for a while that June and July will be, for the most part, back to normal.
But what does normal mean, feel and look like for parents and carers? For us, life pre-COVID-19 was often nothing like the typical normal life other people lead.
For me and my youngest, who are both autistic, life outside of the house has always consisted of preparing for an event with ‘military-style precision’ and strategic plans B, C and D to avoid anxiety or public disaster.
At times, the lockdowns have removed the pressure to be social and out and about in the big wide world. A strange relief in some ways … but the mental health toll of not being able to get out and about on a good day, particularly for an adventurous teenager excited by life and a single mum who desperately needs adult conversation? It’s made us both appreciate the big wide world more than ever.
Back into the world
The task to taper back into the world, which once felt like another world but now feels like another galaxy, was going to be tough.
While writing this article, I thought I could either ponder stepping into the busy world, or I could actually get my daughter and myself out there doing it. I chose the latter.
In at the deep end
I chose two destinations on two separate days – one on the first day of the week and one on the last day of the week.
On Monday, we travelled to Brighton pier, rather aptly, for us to throw ourselves in at the deep end (not literally, I am terrified of water). The trains had changed somewhat since pre-March 2020, so instead of two trains to our destination, it was now three. Luckily, I had researched this before so I could prepare myself and my young person as to how that may look.
Communication is key
1st train: 60 minutes
2nd train: 30 minutes
3rd train: 25 minutes
It’s important to be able to communicate timings and what the day will comprise with your young person because, if the first train was an hour or more, they may assume each train will be an hour or more and become distressed at the idea of three hours on trains. It can be helpful to say:
’Right, we have three trains; the first is the longest and it will take an hour, the second train will be half that time and the third is the shortest.’
There was concern over how close other people would be sitting next to us. For the main part of the journey, people sat as far away from other people as possible. However, rush hour on the way home was a different matter. So, in hindsight, AVOID RUSH HOUR TRAVEL if you, or your young person, need space even more than pre- COVID, as you are unlikely to get this!
It was a long and busy day. I was surprised how tired we both felt by the time our feet landed on our front doormat. Dinner was courtesy of Uber eats as I could not face cooking, but it was so worth it to hear my daughter’s review whilst on the pier. And while my legs were shaking with an irrational fear of being eaten by non-existent sharks, hearing my daughter say, ‘It feels like I’m on holiday!’ was certainly worth the planning tenfold.
Education by seeing
Friday was a grand day out in London. Ironically, to see a shark. My daughter is home educated and studying GCSE art. Damien Hirst’s exhibition, which includes a real-life (but sadly dead) tiger shark, was on at the Newport Street Gallery in Vauxhall and I knew this was an opportunity not to be missed. We live near Ascot, so luckily we are on the Waterloo line; from front door to Big Ben is 1.5 hours max.
Seamless travel into London meant we were extremely early for our pre-booked time window to enter the gallery. We made up that wait time by stopping at a café overlooking the Thames and the Houses of Parliament. We had a hearty cooked breakfast because the café was quiet and peaceful. The quieter and calmer the setting, the bigger meals I buy for us. This is because I know we will be able to stay in that setting longer and not waste food if we need to make a quick exit. It also means a full tummy in case the next café visited later in the day is busy and we can’t go in. In this instance, we would just grab something tiny to eat and drink. The spacing out between the diners was well managed.
Some chairs have DO NOT SIT HERE signs on them and this can be taken quite literally, so it may be worth letting your young person know that if someone is in the same household, or bubble, they can sit next to their family member on the chair next to them despite a sign. My tip would be to allow your young person to sit on the chair with no sign and then you sit on the chair with a sign next to that chair covering up the sign, so no anxiety rises.
Most venues will require you to pre-book. However, after filling up our bellies, we were still early and the gallery had no problem letting us in early. We used this time to use the very clean toilets, so we didn’t need to use public ones later.
The trip home from London was sadly not so seamless. A signal failure meant we had to sit for an hour on the train before we had a driver to drive it. Hungry tummies, phones and iPads without charge, bladders fit to burst, and passengers crammed in close because another train of passengers had joined us, made for not a fun journey.
Luckily, I was mostly prepared!
Top tips for day trips out
- Always take two charged mobile phone portable battery packs – one for your phone for emergencies and another for your child’s phone or iPad. This comes in handy if there are travel delays, a restaurant becomes too noisy or your young person needs to ‘escape’ while at an attraction, without actually escaping.
- Headphones are essential!
- If you have a radar key for the disabled toilets, attach it to your sunflower lanyard so it is easy to grab when nature calls.
- Bags that are backpacks or across-the-body handbags are much easier for a big day out as it frees up both hands.
- Pack crisps, a drink and a sandwich X2, in case the cafés are too overwhelming to visit.
- Antibacterial wipes, masks and hand gel will make you feel much safer germs-wise. If your young person is worried about touching door handles, train standing rails or the bus’s stop button, then suggest to them that they hold onto you/your hand when standing or opening doors. This worked well for us. If your young person is mask exempt, you can get a card to attach to your child’s sunflower lanyard at the hidden disabilities website.
If you have an assistance dog, then here are a few suggestions on what you could pop in your backpack
- A bottle of water for the dog and a foldable dog bowl.
- Poo bags.
- Treats to keep them happy and reward good sitting/lying.
- Cheese for when they have been REALLY good.
- A bottle of water in a sports-type lid bottle in case the green spaces and gardens are in short supply and you need to quickly clean up their poop (that even after scraping away with a poop bag has stuck to the pavement!). A water bottle with a sports lid acts as a little handheld water hose to spray the mess away.
- If it’s a hot day, take a cool coat for the dog. Always put water on the coat before putting it on a dog. Putting ice-cold water directly onto a hot dog can be dangerous.
- Dog cool mats are used in a similar way to the coats; you can pour cool (but not ice cold!) water on them and the dog can lie on the mat to not overheat. This is helpful for cars, buses and trains.
- Make sure you don’t forget your dog’s ID card and the details of their registration. It saves many questions from venues.
- If you have a larger assistance dog and your child is highly aware of needing their two metres’ social distancing, when a large dog lies down it’s about two metres luckily. 🙂