Autism and Death – Say it like it is Aiden!

Recently we’ve experienced the death of a much loved family member. The children’s Great Nanny, who in our house was always referred to as, Ninja Nan! Why? Because somehow she had the knack of winning every card game. It was only as the kids got older, that they wised up to her secret cheating. She was Ninja through and through!

Ninja Nan was 89 and she’d had a good life, so although it was an incredibly sad time, it was one to be expected.

However, I was not expecting the whole experience of death to be quite so pragmatic.

Let me explain.

“Aiden, I have some sad news for you… Ninja Nan has died”.

Aiden – “Am I meant to cry? Because I don’t know how to!”

“You don’t have to cry Aiden. I just wanted you to know and to explain why Dad might be upset.”

Aiden replies, “Well, we all die when we’re old. You’ll die soon! Nan was a Ninja so she just managed to put it off for a bit longer”.

Great! Thanks Aiden!

Ninja Nan lived four hours away from our house, so the funeral was going to be a road trip away.

We decided all the children were old enough to attend the funeral. This would be their first ever funeral. And for the three younger ones, they wanted to go.

Aiden, on the other hand, was having none of it.

Aiden loved his Nan, he always gave her a hug when we left, which for Aiden, is a rarity, and therefore, actually said a lot about how he felt.

A funeral however, was an unknown entity for Aiden. He knew there would be expectations of him but he was unsure what they were. He knew it would be an occasion full of sadness with people crying, but he didn’t know how to do that. He knew there would be people he didn’t know, who would want to talk to him, and that filled him with dread.

Due to Aiden’s lack of communication skills he was not able to voice these anxieties and instead, as always, he expressed them in the only way he knows how. He was negative and angry. Consequently this behaviour resulted in him appearing as selfish, uncaring and rude.

“I’m not going to the stupid funeral! It’s on a Thursday, I do my work experience on a Thursday and I have football and basketball so I can’t go… And, that’s my MacDonalds day! I’m not going!”

This went on for the two weeks before the funeral, with the anger and intensity building every day.

The night before the funeral, while frantically searching for clothes which would both be appropriate and actually fit him, he was still adamant that he was not going.

Aiden’s refusals start off by him joking around, this moves on to him repeating himself over and over, and it’s this self talk which quickly builds into him being highly angry and inconsolable.

This was going to be fun at 5am the next morning, our planned, prompt departure schedule!

So why make him go?

This behaviour was actually the result of fear. His fear of the unknown. I knew what this unknown entity entailed, and I knew that he would be able to cope with it, once we were there.

We just had to get him there!

5am came, and sure enough, as predicted, he refused to get dressed or get in the car.

The MacDonalds bribery came into full force! “You can have it for breakfast and lunch Aiden!” Sweets, chocolate and pizza were also offered! Food is the bane of our life with Aiden, but sometimes it has its bonuses!

It half worked, he got into the car! Still wearing his pj’s, but that was ok. We were just grateful he had some on! Phew!

All the other kids were on strict instructions not to so much as even look at Aiden, for at least the next half an hour.

As it turned out we needn’t have worried. Aiden simply refused to speak, or even look, at any of us for the entire journey! Four hours of peace and quiet, it was great! He slept for a bit and then continued to pretend to be asleep for the rest of the way. He’s a great actor. It was quite comical really.

We arrive, and after a little persuasion from his auntie, that was us using the change of face tactic, he snapped out of his mood. Hooray!

Next up, the funeral.

We took Jasmine’s new puppy, Buddy, with us, as a gentle distraction for Aiden. If he needed to leave the church or a situation he felt uncomfortable with, he could use Buddy as an excuse. Great idea, or so we thought!

At one point, Aiden was looking really awkward after being approached by some distant relatives, he was struggling for conversation and looking at me for support. I go over and give him the puppy as rehearsed.

“Aiden, I think Buddy could do with a little walk, would you take him for me please?”

“No, I don’t like the puppy, give him to Jasmine, he’s her dog!”

Great, well done Aiden! That worked well.

As we walk from the church to the burial, we explain that after the burial we will go to the pub for the wake.

“Well that’s a stupid name, Nanny’s not going to wake up is she? Why don’t they call it, a sleep?”

With that, the hearse travels passed us, followed by a black limo, carrying the immediate family. The children’s Nan, Nanny Coxhead, was one of them. She gives the kids a reassuring wave but I knew they didn’t all see.

“Ah look, there’s Nanny, did you see her? She was waving at you?” I say.

With that Aiden and Jazz both look at me in horror!

And Aiden says, completely straight faced, “What? So she does wake up?”

Oh no! What have I said? Quick Vicky, back track, and think fast!

“No, not Ninja Nan, it was your other Nan, Nanny Coxhead, in the car behind.

We cleared that one up at moved on.

We arrived at the grave side, all is quiet and Aiden announces that he has a suggestion to make. This was, as it turns out, a very sensible suggestion, it’s just unfortunate that he happens to have an incredibly loud voice.

“Can I make a suggestion? he begins.”

I cringe! Oh no! What’s he going to say?

He continues… “Jasmine, I would suggest that you don’t put Buddy down while we are here, because he might end up in that hole with Nan, and I’m not going in there to get him out!”

Desperately trying to keep my somber face, I reply, “Great suggestion Aiden, thank you. Jazz make sure you keep hold of Buddy”.

At this point, I did question myself about why I made him come?

It was an eventful day. And aside from a few hiccups along the way, it was a very successful one. I was extremely proud of Aiden, and his siblings, they were amazing and all coped remarkably well.

The wake was lovely. It was in an old pub which looked beautiful. However, it did have some rather low beams. Aiden, being 6ft 4 and who has no spacial awareness, was unable to navigate these beams without hitting his head. No matter how many times he attempted it, he still smashed right into them. It was great entertainment for his siblings, who giggled hysterically every time, and thankfully, Aiden found it quite amusing too.

Aiden’s only wish, once he’d settled into the day, was that we returned home in time for Love Island. He’d fixated on this thought early on, and it had given him a topic of conversation for the day, so we felt it only fair to support this request.

Aiden masks his anxieties really well in public, and by coping so well, it’s easy to forget the fear he had felt prior to the event. But his actions when leaving the wake reminded me just how confusing he finds the world.

As we left, he followed the lead of his brothers. They were saying their goodbyes, shaking hands with the men and hugging the females. Only Aiden didn’t grasp the finer detail, and instead he’d associated shaking hands with introducing himself, which is something we’ve taught him. So rather than saying goodbye to the people we’d spent the day getting to know, along with the rest of the family, which obviously we know really well, Aiden approached them all, shook their hand and said “Hi, I’m Aiden” and off he went, on to the next.

To be honest people didn’t really notice, even I only realised at the end. Everyone knew we were saying goodbye and just went with it, but the boys, Aiden’s brothers, found it highly embarrassing. Although, equally they we’re also proud of him for having the courage to approach them all in the first place.

The car journey home was far noisier that the outward trip, but full of happy vibes.

Aiden’s lasting words on our funeral day which will always stay with me and make me smile were:

“It’s a good job people only die once and don’t wake up because that would just be a waste of tissues” .

4 thoughts on “Autism and Death – Say it like it is Aiden!

Add yours

  1. He navigated the day as best be could & as comfortably as he felt for himself…couldn’t ask more than that.

    Definitely anxiety and fear at social gatherings (most especially family-type for me) & after this experience I’m sure he will be more comfortable after in the future. Good for Aiden (and the family…)

    I am the opposite…the fear & anxiety are everpresent but the emotions are volatile and uncontrollable for me…Aiden is lucky in that respect…✨🙏🏻✨

    Liked by 1 person

    1. Thanks for reading. Yes he did amazing. Yes, I knew the company we would be in, he would like, which made it much easier for him. He likes our family. If it had been people he didn’t really know I wouldn’t have insisted he came. As that would have been too much. Emotions can be uncontrollable and that’s so hard to deal with, I feel for you.

      Like

  2. Well what can I say this bought a tear to my eye. Well done Aden. Yourself and Vicky do a marvelous job with Aidan and all of your children you should be very proud of yourself as parents. Love always xxx

    Liked by 1 person

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