Monday, 21 March 2016

It's time to tell him

clock and autism word

There are some things you never expect your children to say.

Anthony is crushing his forehead with his hands.  He's making a haunting noise that's a cross between a scream and a growl. And then he said, "Please, kill me, then make me again with a brain that works properly."

Sometimes I wonder if our son is aware of his difficulties.  Anthony has autism, ADHD and a bit of hypermobility and anxiety thrown in for good measure. He knows some things, like he finds it difficult to sit still and has someone help him at the school.  But this was the first time I've been stopped in my tracks by his awareness.

It was over something as simple as copying a sum from a screen onto a piece of paper.

Anthony was converting a picture sum into a column addition. He was doing the sums very well but after a short time started to struggle. His poor motor skills meant he wasn't always lining the numbers up correctly and he started to forget what he needed to do to work the sum out. "Ohhh mum, my brain and fingers are being very naughty," he said.  A few sums later and he was becoming annoyed and upset by his own inabilities.

"Kill me," he screamed.  "Please, kill me, then make me again with a brain that works properly."

Can you imagine?

I felt my heart thump in my chest, like a booming base drum.  Where was the next beat...?.  The world suddenly seemed in slow motion. I felt my eyes widen and glisten as my stomach shivered. Then I couldn't tell where my failing heart ended and my stomach started.  Oh son.  On the outside I held it together, inside I was a mess.

You see, Anthony's brain works differently as part of his autism.  He processes everything differently.  Sometimes this makes things more challenging and sometimes he sees things in a wonderful way that no one else does. Anthony has also been diagnosed with ADHD.  This is an added complication. Not only does his mind work differently, but then he also loses focus, making some tasks even more challenging.

Anthony knows he can copy sums.  He knows he can work out the answers.  He's learned to overcome difficulties with sensory input and seeing things differently.... and then his mind fails him again with concentration.  Please, give my kid a break, I thought.

Of course I hugged him, helped him focus and worked him through the sum.  I said he had done his sums very well and he could finish. No more homework for him tonight.  I was relieved, to say the least, when he told me he didn't want to die.  That he was just frustrated and being a literal thinker he was pretty sure the only way to get a new brain was to die first, and he didn't want that.  Perhaps I'll talk to him about neurosurgery later...much later.

We've always been in agreement that Anthony should know about his autism, ADHD etc when it seems right.  And we are now on the edge of labelling Anthony's conditions for him. He knows he has hypermobility. When the physiotherapist gave him exercises to do it made sense to tell him.  He says his knees are being silly. Perhaps it's no surprise that he thinks his brain is malfunctioning and being 'naughty'.  He has commented before that his brain is not doing as he asks.

I know we'll highlight all the good things about him.  It's not going to be a brand new thing, we've been drip feeding him the idea for a while. But I'm still extremely nervous.  I feel that thump... thump in my chest again just thinking about it.   Anthony's unexpected outburst means it's time for us to do what we've been expecting.  However he reacts, we'll be there to support him.  But it is time to tell him. It's time he had the opportunity to understand himself.


If you have stories about telling someone you love about a condition they have..please feel free to share your link.  Email me if you don't wish to use the comments box and I'll add your link for you.

51 comments:

  1. Oh yes, at a very similar stage here... still! Here's one I wrote about it: http://www.stephstwogirls.co.uk/2015/11/how-to-tell-child-they-have-autism.html x

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  2. Oh my goodness, that's just made me well up just reading about it. What a tough moment for you all - glad to hear that Anthony doesn't want to die though, it was just his way of expressing his frustration that his brain doesn't always do what he wants it to do. Good luck with telling Anthony about his autism and helping to explain it to him x

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    1. I know, it was a bit of a shock. Thanks for the support xxx

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  3. my heart goes out to you and your wonderful son. My son's father (ex husband) chose to tell our son about his ASD when I wasn't there and without discussing it with me so it was totally taken out of my hands. I hope you find a way to explain it all. here if you need us x #spectrumsunday x

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    1. Oh gosh, that must have been a bit scary! Hope it went down ok.

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  4. Oh my goodness. It never even occurred to me that I'm going to have to explain his Autism to Oscar :( Your guy seems a bright spark that knows something is different. I hope the conversations you have (as I assume there will be many) go well and help support his developing self awareness. High five to you mama - I know you can do this.

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    1. David is still away off but there is no doubt now that Anyhony needs to know.

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  5. I really don't remember telling my son, but he wasn't diagnosed until he was 12 so I guess the psychologist told him for me. My daughter is 10 and knows because she was told at school that she has to have 'special' lessons because of her autism. It's hard to know when the time is right though, but I'm thinking the earlier the better.

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    1. Yes, Anthony was diagnosed when he was four so it didn't mean anything and he's always had help as school so that not new. It's more his own frustration with himself that means it's time I think. Thanks for commenting

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  6. Hugs! No advice and we're no where near that stage but just wanted to say that you are doing a fantastic job. Hope that you find a way to explain things that make sense to him xx

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    1. David is five and we are no where near telling him. It's going to be a bit weird because the least affected child will know first.... guess that sort of makes sense though. Thanks for commenting.

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  7. I don't know how old your son is, but we were told to tell our son when he was 9 and in fact the psychologist said that we were late. He had already begun to notice how different he was, even though he never said anything. We sat him down one day and explained to him about his autism. When we were done, he asked us was this why he had an aide. We told him yes. He was so relieved because he thought he was being punished for doing something wrong and couldn't figure out what that was. Children are more atuned to their world then we give them credit. If we don't give them answers they will make things up in their heads, and most times they blame themselves.

    FWIW, that was 18 years ago and today he is working on his second masters degree. Telling him about his autism gave him an understanding of himself. It was never allowed to be an excuse, but it at least explained the reason why some things come harder for him than others and why he had to work so hard to accomplish the same things.

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    1. Anthony is eight years old. Thanks so much for your experiences, it's really helpful to see what happened with others.

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    2. If you are interested I write a blog myself called Raising Asperger's Kids, http://practicalautism.com

      I have not only chronicled my several decades of raising two boys on the autism spectrum, but I have tried to organize alot of information so it might help other parents.

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    3. Wow, there is a lot there to read through. I'll have a greater look later. If there is a particular post or time that would help others in a similar situation to mine, please feel free to add it here too!

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  8. Chris from @AutisticNW also shared this great post with us: http://autisticnotweird.com/when-should-i-tell-my-child/

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  9. Hugs to you and your son. Difficult times that I couldn't begin to imagine. And to hear those words from your child would break any mothers heart into a million pieces. My heart ached just reading about it. I am visiting from. #abitofeverything

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    1. Every child must have difficulties understanding themselves and their emotions. I think this just caught me off guard. Thanks for stopping by.

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  10. Oh bless him. I hope the conversations go well and it helps him understand himself better. Frustration is awful for them. Great post xxx

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    1. Thanks, I hope it makes him feel better...eeek

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  11. I love this post hun. It reminds me so much of my big lad. He has hyper mobility and anxiety too. You are welcome to DM me and we can arrange to chat. We read lots of books with our son that were especially for children like the world of Luke and he said, hey that is like me and the penny dropped. But we also had help from psychologists and he joined a program called who am I?

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    1. We are currently thinking a little talk about a new social story about himself. Following this up with books sounds like a very good idea! Any titles you would recommend are welcomed.

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    2. Autistic how silly is that by Lynda Farrington Wilson & The Survival Guide for Kids with Autism Spectrum Disorders (And Their Parents) by Elizabeth Verdick are both really good books. Thank you for linking up to #EatSleepBlogRT 🌸

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  12. My eldest got told at twelve when we all found out at diagnosis, my five year old knows and has always heard talk of autism because of his brother and knows he has it, maybe does not understand what it means yet but here will be no shocking revelation as we just say it if it comes up in conversation.

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    1. We say the words autism and ADHD etc several times a day but I don't think we've ever out it together for him. His brother even goes to an autism school. It's not new... but it's not been said. People, I'm definitely nervous!

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  13. Two of my children have ASD. My 7 yr old said to me last year, "Mummy, can I swap brains with you? You have a good one, I want that one, and you can have mine'. It was a very similar experience to yours - a moment of realisation that they know. They now know that they're different, that their brain doesn't work as they want it to, nor as it should. And that there's nothing that can be done about it.
    Of course I explained to him that we couldn't swap brains, that it wasn't possible, but I did also say that if I could have, I would have. Now he's in a special school, he's a thousand times happier, and I would rather have that than the perpetual demands that he couldn't meet, of being in a mainstream school. I think broaching the subject of their condition is one that will take many years of gradual learning and gradual acceptance. I hope that all our sons and daughters achieve this self-acceptance in their lives.

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    1. We must have been drip feeding it for years, we've never hidden it. He's also talked about some kids being 'like' or 'not like' him too. Which I found very insightful.

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  14. It's so tough trying to figure out how much to tell them and when. I already mention ASD to Tyger now and then - even thought he's too young to understand - in the hope I'll never have to 'tell' him as such. It helps my sister has a diagnosis, too, so it's his 'normal' in a way.

    I hope the conversation goes well when it comes. I know my sister was relieved when my mum told her she might have autism (she was older, though, and didn't have a diagnosis at that point.

    It must have been a heartbreaking thing to hear. I find it hard enough when Tyger shouts, 'I can't stop!' mid-meltdown.

    #SpectrumSunday

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    1. Awwh poor Tyger. Anthony sometimes says that kind of thing like 'I'm trying I just can't sit still' and I tell him that I believe him, because I do and it's important he knows I'm there for him when he finds things difficult. It's like I've told him to always tell me the truth no matter what so that he never has to hide who he is.

      We must say the words autism and ADHD everyday but we've never associated them with himself for him.

      We need to now.

      Gosh I do love them.

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  15. Your posts r so helpful, ur description of ur sons frustration with his homework has helped me see the same in my granddaughter, she knows what she wants to write but her brain won't join it together n becomes angry with frustration. It is so hard to see her dislike herself in that moment. I think she is too young to tell, she is 6; been diagnosed for a year. Thank you for sharing really helps not to feel alone.

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  16. Your posts r so helpful, ur description of ur sons frustration with his homework has helped me see the same in my granddaughter, she knows what she wants to write but her brain won't join it together n becomes angry with frustration. It is so hard to see her dislike herself in that moment. I think she is too young to tell, she is 6; been diagnosed for a year. Thank you for sharing really helps not to feel alone.

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    1. It really does. Big hugs (but only if you like them) to everyone. There are some links above for others about when and how to tell kids you might like too.

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  17. Good luck, I hope it helps him understand. I know there are a few good kids books out there which explain being autistic. My two are 4 and almost 6 six so we're a way off those kind of talks but as my eldest goes to an autism specific school it's not really something that I think will be very concealed moving forward. Really feel for all of you xxx

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    1. Same here, Anthony's younger brother goes to an autism school that we all drop him at every morning. We say the words all the time but not specifically put them together for Anthony. We've just made a social story for him. He really likes these. Maybe some books to follow too. If you have any you like, feel free to share the titles here!

      Thanks for commenting.

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  18. My heart goes out to you. I became very emotional when I read this very powerful and touching post. I felt such a tug when I read those words your son uttered. It must have such an emotional time for you as well. Sending you hugs. #abitofeverything

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  19. Wow, such a powerful post. I'm sending you love and support for the difficult times ahead!

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  20. My nephew is 12 and has Dysprxia and ADHD, he's know those words for some time but I think it took time for him to make a connection between the words and the actual problems he had. I think you'll be surprised at how well he copes, it may give him some peace of mind knowing there are words and reasons that explain his naughty brain. Good luck with it either way.

    www.queerlittlefamily.co.uk

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  21. I haven't even thought about this stage yet, I imagine it is a very difficult stage to go through! Good luck, and I hope he takes it ok and helps him to understand himself a little better! Thank you for linking up to #spectrumsunday lovely, hope to see you again this week xx

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  22. I know I have this in the future. My boy has been sobbing this week if I say a word out of place in one of the set phrases I have to say to him (it's hard to explain. He speaks well but is very repetitive and has certain rituals he likes when it comes to speech - set questions and answers that he repeats) He has been absolutely sobbing and sobbing if I say a word wrong or forget exactly what to do/say. He seems so anxious and I don't know what to do for him - when I imagine him older, more aware and having those feelings; I know I will have to face something like this one day. I have no advice, because I am only 6 months into this and my boy is only 3. We have no support yet either. I hope that telling him helps your boy and that understanding his difference helps him deal with it. xxx #SpectrumSunday

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  23. I know I have this in the future. My boy has been sobbing this week if I say a word out of place in one of the set phrases I have to say to him (it's hard to explain. He speaks well but is very repetitive and has certain rituals he likes when it comes to speech - set questions and answers that he repeats) He has been absolutely sobbing and sobbing if I say a word wrong or forget exactly what to do/say. He seems so anxious and I don't know what to do for him - when I imagine him older, more aware and having those feelings; I know I will have to face something like this one day. I have no advice, because I am only 6 months into this and my boy is only 3. We have no support yet either. I hope that telling him helps your boy and that understanding his difference helps him deal with it. xxx #SpectrumSunday

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  24. For my son, we always talked about his autism, even from his diagnosis at age 4 so he's always known although he's only just recently realised what this means. But we felt our daughter didn't need to know straightaway when she was first diagnosed aspergers at the age of 5. When she was 8 we started to realise she knew something was different about her and when she started to lose confidence in herself because she couldn't understand what was going on, that's when we told her. She took a while to completely understand but now she calls herself an Aspie with pride. She likes being different and telling her about her diagnosis has actually empowered her. I was so scared to have that initial conversation but it was the best thing we ever did - I hope it goes as well for you too x

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  25. How heartbreaking to hear those words. I'm not sure whether my son will ever be capable of such communication but if he does become aware of his diagnosis I need to ensure I am well prepared #SpectrumSunday

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  26. Anne we had help from our psychologist team when we did begin to use the word autism. Initially it helped but then he started to say things like stupid autism and we had to work on his self confidence. We also used some books to help us. It is heartbreaking when they say things like this. #SpectrumSunday

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  27. Wow, that was a tough read. It's not really something I've ever thought about as we are so far away from that challenge right now. I hope goes well, and your family have all the support in place to help your son through this and help him understand. Good luck
    #SpectrumSunday

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  28. Such a moving post. My heart ached for your sweet boy, and how he saw himself in that moment. I am so glad that you were able to calm him and that he realized he was just very frustrated. What a clever and intuitive boy you have there. He will continue to grow and learn about himself and that everyone is unique, just as they are supposed to be. #Spectrumsunday

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  29. Heartbreaking. There are times Tyger says things that make me feel so awful for him. I've been dropping the fact he's autistic into conversation since he got the diagnosis. I don't know if that's the right thing to do, though. I think we're all fumbling round in the dark a bit.

    At least he acknowledges he doesn't actually want to die.

    #SpectrumSunday

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  30. I come to you with no advice. Just hugs and warth and healing light as you raise this special boy of yours through caring and understanding and self love. May he come to love himself as much as you love him! Or more! :) and <3's. #EatSleepBlogRT

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  31. I can't imagine what I would do in that situation. It's must be very difficult for you to know what to say to try and make things better. Your clearly a wonderful, caring parent and I hope things get easier for your little boy as he grows #postsfromtheheart

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  32. Our decision to tell Number One, was taken out of our hands. She lost her vision due to anxiety a couple of years ago, and was prodded and poked many times, she heard the words the first time from a doctor and asked his what it meant. At the time I was cross and felt unprepared but in hindsight it probably saved me a lot of worry about looking for a 'perfect' moment to tell her. Share has never worried about her diagnosis, on the contrary she is proud of it. There is novel called 'M is for Autism' that she has read recently and loved. I know it made her feel more understood. I hope all goes well, when you tell Anthony, I know you will do an amazing job of it #PosrsFromTheHeart

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  33. It's amazing how self aware children can be isn't it - good luck! #postsfromtheheart

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