Autism Lockdown stories – Keeley and Preston

A couple of weeks ago I wrote about our lockdown experiences with Edward.

It got me thinking how our experience of lockdown is only one small of slice of the autism pie. I think it’s important that others share their experiences of lockdown with an autistic child too. That way people can understand how vast the autism spectrum is and how very different everyone’s journeys are.

So we start with my lovely friend Keeley and her gorgeous little boy Preston. He is the same age as my little Edward but Keeley and Preston’s experience of lockdown is quite different to ours. Enjoy!

Keeley and Preston’s autism lockdown.

Spending 8 weeks in lockdown with a child who isn’t a fan of leaving the house.. easy right?? Wrong, so very wrong!

It’s very weird to think on day 1 I was ready to pull my hair out and sit in a corner rocking for the foreseeable future! Preston is all about routine. Our daily life is pretty repetitive, so going into this unknown time of school closures, not being able to see family and friends and not being able to use tools that we would usually to help regulate Preston (trampoline parks) was really scary for him and for us. How could we make this work? 

The first few weeks were very up and down, trying to find the right routine that worked for Preston was challenging! But we accepted the challenge and we found a way of home schooling Preston that worked well for him. 9am until 10am is time to learn. We are lucky if we get Prestons full attention for that full hour but we know Preston loves to be rewarded for being a good boy so mini eggs in tow, we used to them to keep him focused and remind him work first then mini eggs. Mini eggs slowly became Smarties and thats when we thought of Smarties maths! lets use Smarties to count with, to do simple sums with and make shapes and letters. I now use Smarties maths as his incentive to get some work done!

To help with Preston’s sensory needs we make ice cubes and he melts them with his tongue!! He loves this activity and again sometimes its a incentive to encourage him to engage in time to learn. All this and being a teacher to Preston’s big brother Layton too has been a challenge, luckily Layton has been enthusiastic about joining in with some of Preston’s learning activities which has really helped.

Unfortunately, around week 5/6 we hit a blip! An increase in Preston’s stimming and a lack of sleep kind of blip!  Preston has never been the best sleeper, he can be very restless at the best of times, but constant wake ups and reassurance throughout the night was making him tired and grouchy, not to add in the fact that whilst he was in bed asleep he was still stimming so his body wasnt getting proper rest. He was grouchy, the grouchiness turned to anger and Preston’s inner devil surfaced! He was worried that everybody had died as he hadn’t seen anyone in so long, he couldnt understand why he couldnt talk to the postman, why we couldnt go to Grandma and Grandad’s house and why nobody wanted to come see him. It broke me knowing he was hurting and I couldn’t help.

After seeing him so emotional and out of character, we reached out to Preston’s school teachers and peadiatric nurse. Thankfully they responded instantly and gave us so many ideas on what they thought would work best for Preston and his needs. An idea his teacher gave us was making Preston a calm den… a sensory den maybe.. Online I went and ordered a sensory tent and some sensory lights! The second we had the delivery it was put up! The difference it has made has been immense. Preston has his very own calm down space now, somewhere to regulate, somewhere that is his space for his things (teddies).

It took us 6 weeks of ups and down but we finally have a new routine in place and its working pretty well. The sensory tent has a huge part to play in it aswell as just letting Preston think hes in charge! He loves to think he is in control so now we just roll with it, King Preston we call him now! This lockdown has been hard, very hard at times but I have absolutley loved being locked in and learning so much more about my children. That being said, I am very much looking forward to normality resuming. Preston misses everybody so much but I need a cup of tea in peace!!!!!

A big thank you to Keeley and Preston for sharing their autism lockdown story.