Grieving For A Child I Haven’t Lost 

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This is a tough one for me to write because I’m being completely honest here, and I really don’t want to come across as ungrateful. I know that we are extremely lucky that both of our children are happy and healthy. We are very blessed, I know that. But it’s hard to not think about the things that you and your child are potentially going to miss out on because of autism.

I have known deep down for a long time that Max has autism, but once he was finally diagnosed I began to really think about things. One thing that I hadn’t expected to feel was an overwhelming sense of sadness and grief.

I guess you take for granted that your child will get a normal start in life, and when they don’t get that start it’s hard to know how to deal with it. I mean, it isn’t something we can change, it is what it is but that doesn’t make it any easier.

At the moment Max is just a five year old kid. And for the most part he behaves like any other five year old kid. So it’s hard to know what the future will bring. What he will be like in his teens, his 20’s, 30’s? etc. But autism is something that he is going to have to live with for his entire life. Something that is going to have an effect on him all of his life, and ours.

My husband is one of those people that is very laid back and he doesn’t really think about anything until it’s right in front of him, and that’s what he’s been like with Max’s diagnosis. He 100% agreed with me about Max being on the autistic spectrum but he never really thought about the consequences of that and what it would mean for his future, until now.

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But how can we grieve when we haven’t actually lost anyone?

I think the grief is over losing what you expected to have in your child. My husband said something a couple of weeks ago that really struck a cord with me. He said that Max might never do the things that he did when he was younger. Like go on a lads holiday, go out drinking with this friends, being into sport, all of the ‘normal’ things that we take for grated. And as trivial as these things might seem, they are part of growing up and we make memories from them, memories that we treasure forever.

For me I think about him having girlfriends, getting married and having children of his own. He might still do these things, I do hope he will, but it seems less likely now.

It’s strange all these emotions that you feel after an autism diagnosis, things that you never expected to feel. I was fully expecting the diagnosis so I thought I was prepared, but it seems I wasn’t at all. I guess this sense of grief is just a process we have to go through. And as with anything, it will get easier with time. At the end of the day, we still have our beautiful boy and for that we are grateful.

Thanks for reading.


Check out my other autism posts here.

19 Comments

  1. April 5, 2016 / 8:30 am

    ((hugs)) You don’t sound ungrateful. You sound normal. There are a multitude of reasons why a parent would grieve a “loss” with a living child. You are processing his diagnosis normally and just as you will probably always be somewhat sad about what he won’t be able to do, you will also (like I know you already do) celebrate all the “little” things that he can do that everyone else takes for granted. You are an amazing mom and you would be in denial if you didn’t admit to processing your feelings the way that you do. Keep your head up, and he will continue to amaze you. 🙂

  2. April 5, 2016 / 1:08 pm

    One thing I’ve learned from parenthood is no matter what emotion you have that feels “wrong” or “ungrateful”, all mothers before you have dealt with them too. There are just too many moms that don’t speak up about it and it makes the struggle more lonely. There are things he will miss out on but there will be other things that will be memorable and precious that you might not have otherwise. I think your feelings are very natural and your attitude towards them is healthy and will strengthen you, even when you feel weak.

  3. April 5, 2016 / 9:44 pm

    Obviously I don’t know just how severe your son’s Autism is, which of course determines everything, but I just wanted to share that until recently I was a teacher in a mainstream secondary school and over the years I have worked with a number of children with both Autism and Aspergers. Yes, they find navigating relationships and the world in general more difficult than their “normal” peers but with support and encouragement I have seen several students with Autism develop meaningful, lasting relationships with their peers and teachers. Yours and your husband’s concerns about the life your son may/ may not have are thoughtful and completely natural but I just wanted to say don’t despair – he may well be able to go for that drink with his mates, or be into sport. One small example of this is that a boy I worked with as a Head of Year struggled tremendously in PE with the group/ team games. Once we realised that this was the issue that was resulting in some extremely challenging behaviour, we discussed with him how he felt he could contribute to the lessons. He decided that he would devise some drills and coaching techniques for Cricket – a sport he felt more comfortable with – and he then went on to represent the school. Anyway, this is all a very long way of saying that with the right supportive environment at school and at home – which he so clearly does have – there is nothing to stop your son, and you by extension, enjoying a fulfilled life. I wish you all the best of luck on your journey x

    • April 6, 2016 / 10:21 am

      Thank you for your comment. I would say he is on the mild end of the scale, but he is only 5 so it’s hard to say really. He is getting on fine at school so far which is great and academically he isn’t behind. But it’s ever changing, new challenges seems to come up all the time. I’m noticing him struggling more and more with making friends. But thank you, your comment gives me hope that he will be just fine 🙂 x

  4. April 10, 2016 / 7:33 pm

    You definitely don’t sound ungrateful. As a mum of a child with congenital heart disease and lifelong health worries as well as an open heart surgery and a keyhole heart surgery under his belt already I know exactly how you feel, you are grieving for the life you thought you and he were going to have and so you should. Google the poem ‘welcome to holland’ it is beautiful. Stay strong and have faith that you’re doing great xx

  5. Becky, Cuddle Fairy
    April 11, 2016 / 10:56 am

    I agree with you – I think grief is a process we have to go through for any loss. Having fears & concerns are justified -it’s our job as moms to worry for our children’s future. I know I’d have the same feelings as you in your position but hopefully, your son will have a healthy, happy & fulfilling life ahead of him. #bigpinklink

  6. April 11, 2016 / 6:12 pm

    Oh this was a really difficult post to read because my emotions were dipping and flipping over throughout as I really felt your pain at trying to come to terms with your own feelings … your boy will always be your boy and you wouldn’t change him for the world – he would be someone else without his autism and that isn’t who your son is … you sound like an amazing mummy doing the best job and it really was a beautiful heartfelt post to read #bigpinklink

  7. April 12, 2016 / 7:09 am

    I don’t think you come across as ungrateful at all – I think however prepared we are for a diagnosis, it’s still natural to take time to process it – there’s something about someone confirming something officially I think. Wishing you the best of luck with everything – it’s clear that you’re doing a great job in supporting your son and being an amazing mum. #bigpinklink

  8. April 12, 2016 / 8:02 am

    I don’t think you are ungrateful, just very, very normal. I read once that autistic children are on the same journey as other children, they just take the scenic route. It may take longer and with more support but he can do all those things.
    My nephew is autistic, he needs adult supervision 24 hours. He goes out to parties, clubs etc with his sister or brother. He has a job in a supportive environment. Just enjoy his childhood and never say never xxx

  9. April 12, 2016 / 2:06 pm

    You definitely don’t sound ungrateful, you sound like a fabulous mummy, who is worried for her son’s future, and grieving for the things she would very much like him to do, but isn’t sure if he will be able. I have no idea how you must be feeling, but it sounds like a natural process that any nurturing parent would go through… I really felt for you reading this, and I’m sending all the love in the world to your family. Thanks so much for sharing with #bigpinklink.

  10. May 4, 2016 / 10:27 am

    Beautifully written post Emma, I can’t imagine what you are going through but you don’t sound ungrateful at all. Xx

  11. August 25, 2016 / 4:13 pm

    Hello Emma. I don’t don’t know how your son is affected by autism. My son was 8 when he was diagnosed with autism (aspergers). He’s 14 now and things are going better than I imagined that they would. He’s not a typical teenager by a long way but he has some friends, plenty of interests and heaps of self confidence. I used to ponder how he would manage. I coud see that he was socially isolated when he was younger and I wondered at times if he ever would make friends with his peers. It can be really hard wondering how things will work out and I just wanted to reassure you that it can be fine. Good to connect with you #spectrumsunday

    • August 26, 2016 / 6:59 pm

      Hi Lynne, thanks for your comment. Max is aspergers profile too. It’s difficult at such a young age to imagine what he will be like as a teen but I can see already that he is pretty socially awkward x

  12. August 29, 2016 / 1:14 pm

    I remember once when Anthony was three and before his diagnosis that we had him dressed in a suit for a wedding. He strutted around and pointed his finger at people and I said ‘future PM’ when looking at the photos. Later I looked at them and thought.. Maybe not. That’s probably as close as I get to the grieving of what ‘could have been’. I know some parents took it very hard, the life that will most unlikely be, the narrowing of potential? It’s not wrong, in some way if anything it’s society that’s informed out ideas of what should be. Eight or wrong, there is nothing wrong with how you feel about it as long as you love your lad with all your heart – which you obviously do! Thanks so much for linking to #spectrumsunday, I hope to see you there this weekend.

  13. September 3, 2016 / 3:35 pm

    I wasn’t expecting our diagnosis at all. I had no idea and it came very quickly at 2 years and 10 months – but I still felt that sense of grief. I have written about it a lot. However, more than a year on, I feel completely differently. Yes, there are still pangs of sadness when I see other children doing things he will likely never do – but it is fleeting. He is who he is meant to be and I love every inch of him and everything he will be. Took a while to feel that way though! Thanksfor being so honest and sharing with #spectrumsunday

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