Death is inevitable but so so tough to comprehend. It’s hard for a grizzly mile worn traveller like myself to cope with, what on earth is it like for someone so young. Especially when it’s now 5 major deaths in 4 years. He’s only 11.

My son living with his Aspergers finds comfort in routine and orderly plans. Bereavement doesn’t fit into this ordered and planned world. Suddenly the world shifts, things are never the same again. This complete paradigm shift seems to manifest itself as shutdowns in his processing skills. His fine tuned memory becomes vague and unreliable. Concepts and principles become just random jumbled images. Simple tasks become complex nightmares. All he can think about is that the world and his happiness will never be the same again. Completely lost in this alien world.

Another aspect of Bereavement is a sensory one. Our son constantly fights to control and deal with all the sensory inputs flooding his body every second, every minute, every day ….. hardly ever receding. He has talked about death ramping all these sensory inputs up several levels. Suddenly the noise in his head is louder, he can feel the heart pounding, his skin is oh so much more sensitive, the unsettled stomach becomes a whirling vortex. He is trying to understand death while coping with this sensory storm.

When Bereavement occurs so many worries resurface for our son:

  • Fear of his own mortality. Suddenly every cold, every encounter with an unclean surface, every bump, every cough is a potential path to death.
  • Fear of his Dads mortality. No backstop, no second parent. Images of sad kids in cold foster homes like Harry Potter or strict Victorian orphanages flood his mind. How many movies have this as it’s premise.
  • Fear about losing special loves he will encounter in the future. Is the safest option to just shut the world out.
  • Bad things keep happening so they must be the norm in life.
  • Is it me. Am I to blame for this.
  • I just can’t find order and rationalise things anymore.
  • You learn to love, you learn to trust, then it is gone.

I think that final fear underpins everything. Trust in life for our son is hard to establish. He works so hard to build those bridges. Death smashes those bridges, breaks his hard fought trust.

We have started the healing process. Recommenced all the stuff which has helped in the past. But each time it happens the path to recovery becomes longer and more difficult.

The irony here is that this post is about our son (my only focus) and yet those last two lines (without thinking) are probably about me.

We now try to move on. The motto we have adopted is ‘each morning we dust ourselves down and go again’. Next post I will talk about some of the stuff which helps our son. More uplifting. More humorous. It has to be that way.

60 thoughts on “Bereavement and Aspergers”

  1. Thankyou for writing this. You and your son are going through so much. You are both so very brave, though I am not sure you would say that about yourselves. And does it matter angway? Your focus has to be and is, getting through. The mountain must seem high and the road long. I imagine you wonder if you will ever get through it. I hear you. I hear your cries. It is not easy to believe that you are not alone in this, because it must truly feel that way. But you have my caring, for one. Not that that can help much really, but it is there. Just know, though, that I am hearing you. I am so sorry that all this has happened and is happening for you, but that sounds very lame. Thankyou for your honesty. Please keep writing it. I don’t know how to end this, except to say I care, from deep within me.

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      1. I know. There are no choices. But it’s bloody hard. All the very very best to you. Your son is amazing. Much love to you both xx

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  2. As a foster carer of teenagers years ago, I can identify with all your points here, especially the last about love and trust. Your lad is very astute about death, and at least talks about it. Some don’t, afraid to ‘test the waters’ and bring more uncertainty, confusion and loss into their life.
    Your positive approach and relationship you have with each other is wonderful. ❤

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  5. Very few of us here in the Western Cultures ‘do’ death all that well. 😦

    Considering every human that ever was, or ever will be, will one day succumb to it that’s rather a sad state of affairs.

    We should probably learn to talk about it more so we all can handle it better and not be so afraid or hurt by it.

    Maybe someone could start a club or group somehow – see if some progress could be made??

    On another tack, our brains operate on three levels: the Insinctive (most primative/fundamental level); the Emotional (middle level); and the Rational (highest/most complex level). We normally try to use our rational brain to resolve problems, however the other two parts of the brain operate faster and on deeper levels than the rational part can counter against. Recognising the role our instincts play in our problems, as well as the role our emotional understanding and stability has, is needed if we are to use our rational brain most effectively in dealing with the things that trouble us. We need a ‘whole of brain’ approach.

    Death and uncertainty are very emotional and instinctive issues – it can be very hard trying to make solely rational sense out of them for pretty much all of us.

    Hang in there. 🙂

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  8. Oh my my heart goes out to you both. I feel so much for your son and you too but with the body symptoms well since my husband left mine are terrible all the time its not something I could ever write about or explain. I understand all your sons fears are so natural and together you don’t have the support of someone to contain for you both so you have to do it but you have your own grief too. It is so hard.

    I can only offer empathy. If I can ever be a listening ear for you I am here. I don’t know what else to say but I hear you and feel for you both. I really do. ❤ ❤ ❤

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  10. Oh, this hurts my heart to read. So thankful that you are in his life and willing to talk about the hard things with him. Also thankful that you have this outlet to work through those struggles. I will be praying for both of you. ❤

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  11. Pingback: Bereavement and Aspergers – A Dad trying to cope with the loss of his Partner and becoming a single parent. – International Badass Activists

  13. Beautifully expressed. A very long time ago I lost my first son suddenly to cot death at just a few months old. I thought nothing would ever be the same again and I was right. However after about 5 years or so I started to have days where it did not weigh me down like I was draped in a lead cape, I started being able to think of the beautiful memories without immediately flicking back to the day he died. Over time I noticed little things bothered me less than they had before, that I was more resilient than many and that far from breaking me, my scar had healed to make me stronger than before. It hadn’t gone, it would always be there but it became almost a tool to make sense of the other hard times. I always feel that I got through that and so I will be able to get through anything, it gives me strength. The gift our loved ones can bestow on us go way beyond death I believe. It was 14 years before I had my second son and thanks to my first I have more patience, more understanding and more appreciation of him for who he is than I ever though possible and my first son resides in those tender feelings. I don’t know if there’s a point to this reply really other than trying to say I understand ❤️

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    1. I get this so much. I feel the same. I will never be over it but it’s changed me for the better (I hope). I now get days were I can feel like I’m living again, other days maybe not. But I am stronger. Thank you for telling me these things. It helps realise that other people understand. xx

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  15. I can relate so much. When I was 12 my dad died and I dealt with it horribly. I went really off the rails in some ways and in other ways didn’t deal with it at all until I was an adult. I didn’t realize back then that I had asperger’s, but looking back now, I can see definite places where the aspergers and the grief worked together against me. I had a terrible fear of my mother also dying after my dad died. I wouldn’t even spend a night away from home for fear of something happening. If I did go to a friend’s house for the night, I would often wind up calling in the middle of the night for my mom to come get me. To this day I have trouble walking into a hospital without having severe anxiety (since that is where we found out my dad died). I always felt like when my dad died it blindsided me. I had already lost my grandmother who I was close to years before, but the thought that my parents could die never entered my head. After he died, I have never felt a true sense of security in this world because it feels like anything can happen at anytime and I can’t control it.

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    1. I don’t know if your son is the kind to want to talk to others about what he feels and is going through, but if he ever wanted to talk to someone who might understand, I would be open to messaging with him through email or something. However, I realize he may not be ready to open up. Like I said, it took me till adulthood to really face the loss.

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  16. I agree with the last paragraph especially. It is easier to bundle up and try to disappear than get yourselves out from under the pain. With a son to care for, it is a necessity, but also for yourself. I wish the best for you.

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  17. No one is at fault. I understand. Death is constantly around us. It is very hard to stay positive. Some times I just feel like chuncking (American word for give up) it all in. I love your motto. Will use it. :))

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  18. I keep reading your posts in the wrong order. I don’t suppose that it really matters. They are great, inspiring posts.
    Struggling and suffering ourselves is hard, really hard, but then to watch the ones we love suffer? Heartwrenching. And all we can do is simply be there.

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  20. Pingback: Bereavement and Aspergers | Acts 2:17 In the last days, God says, I will pour out my Spirit on all people. Your sons and daughters will prophesy, your young men will see visions, your old men will dream dreams.

  21. Your son has been through a lot. I can empathize more now I am going through similar things — not a death in the family, but a death of routine, certainty now we are selling the house and going separate ways. Everything is out the window. It is an unsettling time but somehow my creative writing imp sparks me up at odd hours of the day and night and I am happy, settled again 🙂

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