My Lockdown 2020 #Autismcovid19

Its world autism day, so I thought I would have another bash at sharing a bit of “our” autism story. Whilst only one family member has a diagnosis as a family of 7 we are all impacted by this.

2020 was a year in which as a nation we were all levelled by lockdown. Covid19 ravaged the care sector and tested our NHS.

For me the 23rd of March 2020 was a surreal moment in time. My 18-year-old twins were sent home from school just months shy of there A levels, one missing out on his 1st Scotland cap for rugby, as the game was cancelled due to Covid just days before.

My youngest Hector is vulnerable he has a duplication of chromosome 7 and attends a specialist school for children with autism this setting was also indefinitely closed. Unlike many of my peers I never considered schools would be reopening anytime soon. And just two days in was saying out loud to anyone who would listen it would be September before any normality would resume.

Something just clicked you see as for many of you especially with children with SEN school is the glue that sticks us all together the essential ingredient to us all having our needs met. I kind of realised day 1 if I cracked early lockdown was going to be a bloody nightmare. So cracking was not an option!

We pre lockdown had been extremely fortunate as a family to have been provided by the authority 2 evenings/month respite care where Hec would “sleep-over” at Gleneagles. Now to some of you that will be meaning something completely different.

Our Gleneagles is a purpose built 8 bed unit in the middle of Middlesbrough. Which is quite simply amazing so if school was the glue Gleneagles is the glitter glue. When I first visited to do reconnaissance, I came out in tears not of desperation but of joy and overwhelming relief. Who new that such an incredible service was available just a stones throw from Hectors school? Employees 300% engaged with long service and a lifetimes dedication to caring for our most complex kids. Making the decision to seek additional care was not one that was easily reached my husband and the boys bar the eldest our Tom all had plenty to say on the matter, but the bottom line was after 9 years of virtually zero sleep I was frayed around the edges. Sleeping with one eye/ear open is not sustainable forever and as the years passed by Hector’s inability to drop off no matter how much hill walking, lavender bubble bath I deployed, Peppa Pig left on the telly or stories read and reread my son was still crashing about at 2am. And if one more expert told me to keep yet another sleep diary I think I would have actually screamed.

When it was announced that Gleneagles too was closing, I thought oh flip well something like that it begins with an f anyway…

Hec was home for a full 7.5 months with just his mother how on earth was I with my handful of GCSE's going to be able to home-school my son and mirror and match the excellence of his educators? I wasn’t, its just that simple I wasn’t so I didn’t. I simply wasn’t prepared to go into battle on a daily basis indefinitely.

For the sake yes of my mental health, his happiness, and the overall ambience in our home we were going to do stuff only if we enjoyed it and only when we wanted. That is simply how we survived 2020. It worked for us it perhaps wouldn’t for others. But I chose to care less, care less about the state of the house, care less about my appearance, care less about “missing out” care less if Hector wouldn’t wear wellies to play outside and preferred to be bare foot. Care less when he drew on the walls, care less when he ate my jumpers, care less when he cut up his own clothes and care less when he sat on the wet lawn wearing only his pants looking up at the sky when it was pouring down with rain.

Funny year 2020, Hec and I bonded in a way we never had before. Me and him in it together learning to celebrate the differences rather than wish for more similarity. I don’t know if I have ever mentioned it before, but my son won’t let me talk? Its complex… If I have a visitor at home and try to have a gossip, natter, catch up he screams and screams and screams and screams then begins to tear at this face. Its simply not possible to enjoy the company of others in our home.

I won’t talk today about visiting but let’s just say there are only now 2 friends we can visit with Hector. There used to be more but quite frankly autism had limited our ability to socialise way before the pandemic. There aren’t many people who can actually cope with us there is toddler proofing and there’s Hector proofing which are two very different things.

So lockdown removed any temptation on my part to try to socialise with Hector another challenge removed from our lives. The hardest part for Hec was the fact he could not go to the store he is a true consumer and his favourite thing to do is to go to the supermarket. He doesn’t have to wear a mask but does not understand social distancing and queuing well yes queuing could be a chapter in its own right. So this was moved instantly and indefinitely of his timetable, it would be possibly 12 weeks before he stopped asking to go to the store on a minute by minute basis.

So, we stayed put. We stayed at home, we stayed safe, we pottered in the garden in fact the garden became our sanctuary away from sky sport on the telly (teenagers) gangsta rap blasting from the gym (teenagers) we ate outside that cured the chaos and screaming in the kitchen when trying to have a family meal. In fact, we spent so long outside we began to really enjoy each other’s company. Hector is strong physically extraordinarily strong its surprising really what my son can do I often think about what he cannot but last year there were so many can’s. He can carry bags of compost to the greenhouse, he can plant seeds he can also over water them he over waters really well. And loves to dead head usually just as something blooms!

He also feels a great sense pride in his achievements we did doorstep deliveries to everyone I knew. No getting out of the car for Hec no attempt at polite conversation just simply writing little cards with LOVE HECTOR on he prefers upper case and leaving all sorts of amazing treats, fennel, butter nut squash, marrows, sprouting broccoli. His artichokes were glorious some standing almost as tall as him. We worked mainly in silence as this was his preference. But then he would take me completely by surprise and read seed packets out loud actually say stuff, random stuff in context stuff all manner of stuff.

Listing the wonders of the world. All the things you can see and do in India, he became fixated with going to China the rest of the world felt differently but no, my Hec was banging on about the great wall, then Paris, then Mexico. My son wanted to travel.

Travel had evaded us well we were just too scared to, it all felt extremely difficult and changing/showering facilities for children the size of adults just don't really exist in public buildings, how would Hec cope, how would we cope, how would other passengers react how do you exit a plane mid-flight? Same s*it different location sprung to mind.

Then it struck me, like a thunderbolt of lightning we were going to go on an adventure just the two of us, I was going to put my brave pants on! Aug the 15th restrictions eased; husband dropped us off at Leeds with a look of total bafflement on his face. Why now, why would anybody, don't you see I explained matter of factly. Perfect timing for Hec, minimal travellers on the plane to disturb/annoy/deafen rows between us all, social distancing throughout the airport, only 40% of bars and restaurants open, less tourists more space I'm not sure who I was trying to convince more. Hector was now getting extremely distressed in the car husband said it was anxiety it wasn't I knew it wasn't it was just my talking!

My patience of a saint spouse suggested he would "just hang around in the car park for a couple of hours, you know just in case".

 I had no idea if Hector would even get on the plane, he did, and we were destined for Ibiza with a return ticket for 4 weeks later…