When Worlds Collide

family selfie

I have very few photos of all the boys together in the early years. Partly because by the time I’d lined up the two youngest, Archie would have scarpered out of the photo but also because we didn’t really do a lot as a family. Archie at the time found neurotypical events difficult to handle & on the whole needed to spend his whole time moving. So even family trips to the beach or camping tended to break into two groups, one parent with Joe and Louis in one spot, paddling, playing football or whatever and the other walking into the distance with Archie. At that time I often felt as if we were had two entirely different families under the same roof. It was a time of contrasts, switching between planet autism and neurotypical land, with very little overlap.

Gradually over the last few years the distance between the two worlds has decreased and most of the time now we just have our family time. Okay it’s not always a typical family, but we can go out and eat together, we can shop together, we can go horse riding, surf together & ride bikes together.  This is reflected in the family photo albums where all three boys can be seen enjoying  life together, creating joint memories.

It’s entirely normal for us now to do most things together and it’s rare to get that sense of planet autism vs neurotypical world. There are times when there are reminders – attending in quick succession a secondary school carol service in a candlelit church or watching a mainstream primary nativity, versus the warm chaos of Archie’s school christmas celebrations for example was a reminder amongst others that there are still differences. There are still things that Archie can’t do. Not many, but cinemas and theatres are still a no go area for him.

Which brings me onto this week. Joseph was performing in the UK Priscilla Queen of the Desert tour for the third and final time. This is what we tend to refer to between ourselves as extreme neurotypical parenting, as it’s really a large step away from anything we experience with Archie. He absolutely loves the Priscilla CD but still wouldn’t be able to watch a performance in a 1000+ seat theatre. The weeks that Joseph takes part in professional theatre shows are always warm, sunny weeks, full of family and friends going to see the show and this week was no exception. Because it was Joseph’s final Priscilla week,  I agreed he could see the show. The final matinee of the tour was a lovely way to end a really fun week – the sort of week when you realise just how much fun parenting & well life really can be.

We arrived home after the show, both of us on a show inspired feel-good high; Joseph decked in pink feather boas and wearing a Priscilla cap and found Archie a bit angsty. This eventually led to a very major meltdown at about 8pm. Suddenly the chasm between the two worlds felt very large indeed and the high of the previous week crashed. It felt as if we were being launched from one extreme to another. One of the problems with meltdowns is that it can be very hard to understand why they have occurred. We focussed on getting the house calm and encouraging Archie to sleep.

This morning Archie again woke very anxious and a further meltdown followed. I tried to talk to him about what was upsetting him but he finds talking about negative emotions incredibly difficult. This is recognised, and is and is being targeted by school as well, but like everything it’s a long process of short steps. I tried to put myself in his shoes and realised that I’ve been out a lot more than usual in the last week watching Priscilla and family and friends have been coming and going and he might find the changes and my absence difficult. I explained to him that granny and grandad Ireland were back in Ireland and that Joseph’s theatre show was over. He latched onto this – repeatedly saying ‘different day’ and seemed happy when I replied that yes, Joseph would be at the theatre on a different day, not for ages and that I was going to be home most of the time again. If my absence was the issue it is of course something we need to keep an eye on – I can’t be unable to go out, but this morning it was a just a relief to see some of the anxiety go.

I took Archie to the beach with me to walk the dog. Richard was a bit concerned – with good reason. The beach was busy, and public meltdowns or meltdowns while driving are hard to handle. However, it was the right decision. The tide was out and as we walked I could see Bigbury working its special magic, the anxiety dropping away and my smiley boy returning.

We returned home and Archie has been wandering around this afternoon carrying a pink feather boa wearing Joseph’s Priscilla cap. The gap between the two worlds is decreasing again. We’re easing back into our funny family life.

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10 thoughts on “When Worlds Collide

  1. Great post – we have a very similar experience here with the split family life. Henry is fairly easy to take out to places but the whole day has to revolve around his needs. Recently we’ve been getting more respite and having the experience, for example, of sitting for an hour in a market over a leisurely lunch while listening to a busker, makes us realise how autism-centric our lives usually are.

    The anxiety is an interesting issue, as Henry has reacted very similarly when I’ve been away from home, even though he shows no outward signs of missing me and usually greets my return by demanding food! Like Archie, he reacts very strongly to any mention of negative emotions and isn’t yet at the stage where he can explain how he feels. It’ a difficult one.

    • I’ve found if I give Archie choices ‘are you upset about this, or this’ then he’ll sometimes indicate what the problem is. I’m never entirely sure it’s correct though. He refuses to use the talker to talk about anything that’s upsetting him.

      Glad you’re getting more respite! Archie is definitely finding sitting easier as he gets older. We might not yet manage a leisurely lunch but he can now do lunch – which is a big change from a few years ago (well you saw us then).

  2. I have a sneaking feeling Archie would have liked to have seen his brother perform on stage :( I’ve talked with you about this before, Christianne – how upsetting it is that our kids are kept out of having a live theater experience. Even more so when a family member is up on stage! Many (most, all?) of the people I know who use AAC have difficulty typing when emotions come into play. Sydney requires more than usual support and gentle-encouragement to help her control her movements in order to spell what’s upsetting her. Too bad someone couldn’t have videotaped one of the performances just for Archie :) !

    • Maybe, but I have tried live performances (on a smaller scale) before and we last 5 minutes & he asks to leave. Likewise the cinema – 10 minutes. He wouldn’t be able to be quiet either & that really would have been problematic in the theatres Joe has performed in, especially given the cost of the tickets – it means people aren’t necessarily going to be at all tolerant of noise. I do think it would be very overwhelming for Archie as well. Unfortunately videoing is an absolute no-no for a professional show!! Louis couldn’t go either – as he is too young for the content imo, so neither brother saw Joe, it wasn’t just Archie.

      I have a friend who runs a theatre in London and she has a system in place where people with learning disabilities are invited to the full dress rehearsals (for free). It’s a system that works well in her theatre. The theatre Joe performed in this week has started doing some relaxed performances – but they haven’t done anything that I thought he might like to watch yet. So far they’ve offered the Lion King and the panto & I didn’t think he’d want to go to either. I’m on the mailing list – & hopefully the opportunities will increase.

      • Oh, I know! I just meant he might have been feeling “If only!” – if only he could see it, if only he could handle it, if only . . .

  3. I know what you mean about the two different worlds. Phew, it’s a tough one for us this year. Thomas preparing for final exams and he will leave home next year. Nick turning 15 and such a quirky chap.
    I am glad that you all got over the hurdle and the gap started decreasing again.

    • Oh gosh I am dreading public exams. We have the first set of secondary exams coming up with Joseph and juggling space to revise for those is hard enough. It can feel like flitting between two completely different places numerous times a day sometimes. Hope exams go well for Thomas :)

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