The Aspergers life can be racked with anxieties and obsessive behaviours. Additionally Aspergers can frequently coexist with OCD. Add the death of a mum and both grannies. Then on top of that you add a pandemic. Something has to give with that kind of pressure building up. That’s what our son is dealing with and it is so very tough for him. What does that mean in practice. Well here is a snapshot of life and the impact it has on him.

Every ache, every sneeze, every spot, every pain is seen as a potential sign of a serious disease or the C word. Anxieties bring on indigestion and constipation. These are then seen by him as more potential warnings of serious, life threatening health conditions. The natural response was to frequently wash his hands. It was both to cleanse his hands but also an attempt to pour water on the raging anxiety wildfire. Washing to the point of red raw skin. These issues have existed for years but slowly during 2019 slow progress started to happen. The hand washing was just about brought under control. Then the pandemic hit. The progress was instantly lost. Suddenly the months of reassuring talk a out avoiding serious illnesses, the bodies capacity to fight back and the advances in medical science are basically blown out of the water. The problems started to mount up again and escalate to new heights.

  • Hand washing every few minutes. From 15 second washing now to washing for minutes at a time.
  • A reluctance to dry washed hands as towels might be a source of germs.
  • Harmful germs are seen to exist everywhere. Suddenly it’s difficult for him to touch taps, toilet handles and door knobs. Sheets of paper have to be left next to these so he can avoid touching them directly. Even pulling on a shirt may result in the potentially unclean sleeves coming into contact with his hands. Shoes have to be put on without using his hands.
  • iPads and joysticks have to be washed frequently and definitely before he touches them. It’s the same for things like pens.
  • When he strokes his pets he will immediately run to wash his hands.
  • He needs to see evidence that I wash my hands before I touch any of his items.
  • Clothes have to be frequently washed often multiple times a day.
  • Outside he is constantly looking out for flies and flying bugs. If they come too close then he will need to go inside to wash.
  • He has to have his own seat and no one is allowed to touch it. If they do then the seat has to be cleaned.
  • When he goes out the the front door then he consciously tries to avoid walking over any areas that the postman or others might have walked across. When he comes back in them his shoes will need to be completely cleaned. If he ventures through the front gate and into the outside world then on his return he will completely strip, shower and change to new clothes. Those rules apply to me as well.
  • Mouth-washing and gargling is frequently repeated during the day.
  • Any item which hits the ground (inside or out) will need to be deep cleaned.
  • Any new food items have to go into the garage and complete a quarantine period if at least three days.

This is daily life in our little home. I do my best to reassure, reason and modify behaviours. But it feels nothing more than trying to plug a leaking dam at present. One hole maybe plugged but in the meantime another two new holes have appeared. Counselling was there but government cutbacks have taken their toll on services. The pandemic has temporarily suspended specialist help. The result is massive backlogs and no access to help. These are tough times. For him and yes me as well. As a parent you feel helpless, definitely so underprepared for these challenges. But we keep going. We pick ourselves up and go again. Yes we will get there. We will. But it will take time. Realistically maybe well into 2021. In practice timescales don’t matter, we take each day as it comes, fortified by the love of friends.

71 thoughts on “Life snapshot”

  3. Yeah… I definitely have some OCD issues myself, even as an adult. I can’t imagine how hard it must be for him to be this affected and not being able to help it. Or you for that matter. Keep the hope alive though, it will get better. 🙂

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  5. I feel for you. Is medication, even temporarily, an option? My son, who lives with Anxiety is helped (somewhat) by medicine, and he’s about to start exposure therapy to help him deal with anxiety triggers. My thought are with you both.

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  6. I SOOO get this! Trying to remember all the rules, trying to follow all the rules, know they can’t help it… they’re in a bigger Hell than we can imagine, barely making it with the rules… and sometimes, (though you don’t say it) the urge to scream because it’s gone too far! It’s gotten ridiculous, too many rules… but we don’t do that because we know they can’t help it. We just want them to be okay, even if our heads feel like they’re gonna explode. We just want them to be okay.💌💌

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  10. I can only imagine. In speaking with my 7 year old grandson tonight, he was stressed over the virus and the loss of everything normal. Being the parent who must navigate these waters must be exhausting. Holding you up from afar.

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  12. I’m sure just the bereavements would be enough to cause him to have these symptoms but the Aspergers must intensify them. After losing my mum, I used to wash my hands incessantly until the skin fell apart. Then I was convinced I was going blind every time I got a bit of dust in my eye. My family were constantly engaged in checking my eyes for early ‘signs of blindness’ (whatever that meant). Then later on it was nuclear power stations I was scared of…I could continue the list but the main point I wanted to make is that I got better. There is hope, despite government cuts and the current situation. You will get there!

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  14. The important thing is that you understand your son where he comes from. When even it is such a challenge, but that way you have a possibility to redirect a little step by step. As I said before, your benefit is that your son trusts you. He knows you take him serious.

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  15. Hey, Gary. How long can you go without consciously mentioning certain people who are missing from your life and his? I ask this to see if you can discover how long he can go without mentioning them if you don’t. When he brings them up, talk as best you can about feelings, good and bad. If he doesn’t bring them up, keep your own feelings to yourself with him, and talk to your readers as much as possible when the need arises. Maybe you have tried this already, I have no way of knowing.
    Likewise, how often does he bring up the subjects of autism and aspergers? I did some work on spectrum disorders as a social worker. I am not an expert. But I have eyes and ears, and ideas.

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  19. That must be so hard on the both of you. There are definitely ways things NEED to be done here, but not in reference to germs. That would be a huge challenge. Thinking of you.

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  22. So very difficult for you both and incredibly time consuming and stressful at times. You will get there, I have no doubt. It will take time is all and there is no rush. The world and anyone worthwhile will wait for you and your son. However long that takes. X

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