[Guest Blog] Living in an autism bubble in an ever-changing world.

Published Sep 30 2021 10:21 AM 3,386 Views

This post was written by Office Apps & Services MVP Peter Rising as a part of our Humans of IT Guest blogger series. This is a follow up from Peter's first post in November 2020 about the challenges of working from home during Covid-19 times whilst raising a son with severe autism.  Almost one year on, life remains extremely challenging, but in different ways. 

 

In early 2020, the world changed as the global pandemic disrupted all our lives. In the months that followed, many of us adjusted to working from home, and supporting our children with home learning. This was a massive shock to the system, but what I did not realise at the time was that this would be the easy part for me and my family.

As a quick recap, I live in the UK with my wife Louise, and our two sons George (14), and Oliver (11). Oliver was diagnosed with severe autism at the age of two and a half, and as he has grown older we have seen sensory processing disorder, extreme anxiety and pathological demand avoidance added to the list of challenges he faces on a daily basis.

 

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Oliver and me

Before the pandemic devastated the world, Oliver attended a Specialist Educational Needs (SEN) school, and was picked up and returned home each day by the school bus. I don't believe he ever really enjoyed attending school though, as even back then we had some difficulties in that he refused all food during the school day and would also not visit the school toilets. Looking back at those times, I think that Oliver merely 'tolerated' school, but it is clear that having to attend caused him distress.

This became ever more apparent when schools started to re-open again in late 2020 and children started to return. To begin with, we were quite hopeful, as Oliver boarded the school bus on the first day back with no real problems. Things began to change very rapidly though and Oliver started refusing to get on the bus and the more we tried to encourage him, the more distressed he would become.

So we tried driving Oliver to school instead. This looked like it may work until we took him into the school building and he refused to go with the teacher, so we ended up taking him back home with us. Slowly but surely, the mere mention of school made Oliver more anxious. What didn't help matters was that on the few occasions we succeeded in getting him to attend, the pattern was disrupted when a teacher or classmate inevitably tested positive for Covid-19, resulting in the entire class needing to stay at home and self-isolate for 14 days. Routine and pattern is essential in Oliver's life, and this unpredictability did not help our cause one bit.

By the time 2020 came to a close, I think Oliver may have attended school for approximately 10 days in total since it reopened before we got to the point that he stopped attending completely. At this time, both the education and social authorities agreed with us that there was little point in persisting with trying to get Oliver to attend school whilst the requirement to self isolate was still in place as it meant that consistency was almost impossible.

As we started the new year of 2021, we became accustomed to Oliver staying at home. This was arguably hardest on our oldest son George who was now the only person leaving the house on a regular basis to attend school. I was still working exclusively from home myself. George, to his credit has shown incredible maturity beyond his 14 years throughout these difficult times - particularly as Oliver staying away from school has led to many other stresses and anxieties in our house.

 

For many months earlier in the year, we established a pattern of Oliver visiting Louise's parents who live very close to us. He only went for a short time each day between 3.00pm and 6.00pm but this was extremely helpful to us as it provided us (Louise especially) with some respite. Oliver has become particularly attached to his Mother over the past year - almost to the point of obsession, and he always likes to know where she is.

This extreme attachment to Louise has only been exacerbated by two escalating anxiety triggers which Oliver has developed during this time. The first trigger is barking dogs. There are a lot of dogs living on our street and when they bark (which is frequent), Oliver becomes hugely distressed and will scream. If the barking does not subside quickly, Oliver will run through the house to find Louise and will start hitting her repeatedly. This is utterly horrifying as you can imagine. It contradicts entirely his special bond with Louise, but illustrates that he does not understand how to appropriately process and express his emotions. This behaviour is still a problem as I write this.

The second trigger is bad weather. Oliver seems to sense bad weather before it happens. He will appear in the living room and demand that the curtains are closed and the lights turned on (regardless of the time of day). we then have to play calming music at high volume. This can go on for quite some time, even if the weather has improved. It will only end on Oliver's terms. Ironically, the bad whether stops the barking dogs issue, but when the sunshine returns, the dogs come out again. It feels like we just can't catch a break.

To add to the problems, back in July Oliver stopped going to his grandparents. We have no idea why but now we are effectively housebound. Oliver becomes distressed if Louise tries to leave the house for any reason. I am not so restricted but the only time I really go anywhere is to take George to school as I don't want Louise to be left alone with Oliver for any length of time.

When you write all of this down and read it back, it sounds ridiculous and unbelievable, and you do start to question if you have been good enough parents. Fortunately we did receive some validation recently as child mental health services and a clinical nurse started visiting Oliver every day recently. They were confident that they could challenge Oliver's rigidity, but they too have found that Oliver is not going to be an easy code to crack.  They attempted to get him to attend his new school last week, and on the first day they managed to get him there for a few hours.  He clearly did not realise where he was going though, as the following day when they attempted this again he refused their attempts to get him ready and into the car.

Despite all this, we still manage to get things done. I manage to do my work, have teams meetings, record a podcast, and write blogs like this one. Louise manages to enjoy her crafting which includes knitting and crochet, and she has recently rediscovered a passion for water colour painting. These activities are often interrupted of course and things take a lot longer than they normally would as a result. In the extreme, I have had to abandon an important work call to respond to a violent episode from Oliver when a dog barks.

I have to be honest and say that I never imagined that life could be this hard, and I don't know how on earth we are going to work our way out of this situation. The services that are working with us to support us and trying to de-sensitise Oliver to his anxieties are now regrouping and thinking of new strategies, but it feels like while the rest of the world has started to do normal everyday things again, we have never actually come out of lockdown.

We remain upbeat though throughout it all, and our families always kindly remark how incredible it is that we still have a smile on our faces considering the stressful life we live. That gives me so much strength, especially on the days where I'm running on empty and feel like I have nothing more to give.

I have to keep the faith that there is an answer to this situation, and the support and friendship I receive from this community helps me stay strong more than you can know.

Thanks for reading, I hope I can update you in the not too distant future with some good progress. Keep your fingers crossed for us!!

Take care and stay safe!
Peter

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