We have three children who all have autism of one form or another. Two of them have pathological demand avoidance, a particularly tricky form of autism which means any demands made or inferred cause them anxiety and distress. This often results in avoidance behaviour and is exhausting on the best days. During the lockdown we have removed all possible demands because the space we would require for calming from a meltdown simply isn't there.
One of our children has asthma which the NHS haven't classed as severe because she hasn't been hospitalised for several years, but any hayfever or cold means she has weeks of coughing and using her nebuliser before any signs of recovery are seen. She misses out on a lot due to this. So we are keeping her self isolating for her own safety. She understands and is OK with it, although she is missing her best friend terribly.
Our eldest and youngest children, who both have PDA, are struggling with the changes in routine. Day/night are blurring into one....to the point I strongly challenged them both to sleep out in a tent last night with the aim of the circadian rythym resetting a little. Our eldest refused, saying he could just open his windows and didn't need to sleep in a tent- totally missed the point of the exercise but the demand was too much so we left him to it and focussed on our youngest. She loves a challenge and usually responds well to them if worded correctly.
It turned out she fell straight to sleep and slept well all night in there, but my husband barely got any sleep and slept all morning instead, after abandoning the tent at 6am and returning to his bed.
Day to day we have been trying to have meals together and free time, with suggested time fillers and avtivities in between. With the weather being so warm and dry, they are all enjoying hours and hours of trampolining outside each day. They are also taking time out when they need it, watching youtube videos and listening to music on ipads and alexa devices.
Every day has been essentially the same, with different activities suggested, or with me starting different activities that the children then join in with.
Getting shopping in has been difficult and stressful as, not only do we have the autism related diet preferences and packaging needs, but also a lot of allergies and intolerances to different ingredients in food. Because of this we cannot use any of the general boxes from the supermarkets, but need to try and get delivery slots, failing that a clock and collect slot. They seem to go quicker than they appear online. I have stayed up past midnight to get a slot before and then not been able to get back in to edit my order until right before delivery, by which time most of what I ordered was out of stock.
The plus side is that we have been taking out dog out for a local walk most days. Our eldest babysits the youngest (we are fully contactable, local and know they are safe) ehilst we spend around an hour following the local accessible footpaths and walkways, finding new nature filled areas.
We have made varying types of slime, cooked meals together, had the usual conversations that go off tangent following the children's questions and discovered boredom busting websites. Netflix, amazon prime and sky have been used to excess for evening entertainment and tiktok has been updated far too many times by my two eldest too.
We are in week 5 now apparently- i have lost count- and I cannot see how we will leave the lockdown without a second wave of the virus spreading, but we need to trust and listen to the powers that be and hope for the best.
Stay safe x
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