Why I no longer grieve for my autistic son

Four and a half years ago I wrote a blog titled ‘grieving for a child I haven’t lost’. It has been read over 100 thousand times since I wrote it and appeared in a number of books and on some popular websites. It’s been one of the most commented pieces I have written and evoked very strong feelings from people, both good and bad.

Time has passed and feelings change. Some advised me to delete that blog. But why would I be ashamed of how I truly felt at the time? You can’t eradicate history and it’s not healthy to pretend something wasn’t real when it was. I stand by every word I wrote back then and I know by being so brutally honest it has helped thousands of others feel less alone and more understood. Four and a half years ago my son was non verbal, smearing, screaming for hours, unable to read or write and needed 24 hour care. He was still in nappies at 6 and a half, having seizures, his behaviour was ‘challenging’ and every single day felt never ending.

He’s now 11. He’s still not toilet trained, still smears, now officially diagnosed epileptic, still has challenging behaviour and still non verbal. He still screams, he still can’t read or write or dress himself but something fundamental HAS changed: I no longer grieve for him.

I refuse to debate wether ‘grief’ is the right word to use for what I went through. I am the one that went through it and I know the intensity and depth of my feelings and the struggles both my son experienced, and in turn I felt as his mum and full time carer. The day I sat on that park bench and poured my heart onto paper was a day of truly understanding the reality of the pain, heartbreak and despair I felt. No-one has any right to undermine that unless they were living my life. My feelings and thoughts are not up for debate and never will be.

But things have changed now. A few days ago I took my son a trip to his favourite place. He now has a means of communication and I have learnt to listen. While he still can’t communicate verbally, after a lot of frustration and heartbreak, he found his own way of sharing his world through unconventional means. For him this is a unique combination of you tube, google street map, photos and using items of reference. He shows ingenuity and creativity daily as he tries to convey what he wants to wear, eat, and do. I have had, in turn, to be wiling to put my prejudices aside, be patient, and be willing to listen with more than just my ears.

Many misunderstood my grief as not loving my son. The opposite was in fact true. It was my intense love for him that made me grieve what I was missing as a parent and also the reality of what he will miss throughout his life.

But back to our trip and why I no longer grieve for my autistic son.:

He woke up on Saturday and made his way downstairs to ‘his’ chair. He pressed his iPads on (yes he has two!) and scrolled through his history of videos in YouTube until he found the one he wanted. He then used the other to go on google street map which is set to begin at his own home. Within minutes he had taken himself to the local train station on one iPad whilst watching local trains on the other.

I know my son and I know where he likes to go. Together we have a deep understanding now that has helped us both feel happier. He learnt that communication was worthwhile and I learnt the importance of allowing him to decide and control more about his life.

So I took him on a train to his favourite shopping centre to see lifts. On the train I watched as he flapped happily and looked out the window, holding his favourite teddy up so he could see too. He held my hand to get off the train and he took me to all his favourite lifts. We had lunch together in the food court and he dragged me by the hand and pointed to what he wanted. Then when he’d had enough we came home.

I’ve accepted that this is what makes him happy. He’s accepted that I actually have a use and by communicating other ways instead of screaming (which was his communication) he can achieve more.

I struggled but he struggled more.

Love helped us through. We both needed time.

In the four and a half years of us both needing time and changing I noticed something very important: attitudes to autistics are changing. We are much more accepting of difference now and the need to accommodate. Unfortunately though that acceptance still doesn’t seem to apply to parents as they journey through all the emotions involved in caring for, and living with their autistic children.

I am no longer grieving for my autistic son because I have come to accept and acknowledge that his life will always be different, as will mine, and that is OK. But it’s important that that is seen not as a ‘changing sides’ or ‘finally being positive’ but more about a natural journey of learning, patience and love. I haven’t suddenly become ‘accepting’ it was a process of coming to terms with the fact that my entire life will mean caring for my child and his entire life will involve others caring for him.

My son didn’t scream once on Saturday nor did he self harm or even show challenging behaviour. He was happy and so was I.

It’s still difficult at times, for both of us. But instead of sitting on that bench crying we now walk hand in hand past it as he flaps and laughs and drags me back to the car. He’d rather have fun at a lift or be eating lunch than walk around a park with his mum. That’s not something I grieve about now. It’s something I smile about instead.

8 thoughts on “Why I no longer grieve for my autistic son

  1. I totally relate to this. I moved on from my denial and then horror/shock/grieving phase I did achieve the acceptance like yourself. I used to feel guilty for my former self but now, like you, I refused to be judged by anyone. That was how I felt at the time and that is how most newbie autism parents feel if they are honest. Some get stuck there and we should help guide them on with their journey if we can but this needs to be through love and understanding. So many are so quick to judge and preach these days. Anyone that judges them is not helping. It’s good to have this kind of raw honesty. Don’t ever delete that old blog post it illustrates an important part of yours, mine and pretty much every autism parents journey.

    Liked by 4 people

  2. I love this Miriam it is so important for us to accept who we are and our own feelings are ok whatever they are. I have been guilty of using the phrase ‘people don’t change’ I know for a fact they do because I have changed. Change of opinions / the way we think only happens through better information. For real change we need experience and that takes time. I think nearly all SEND parents will relate to both your posts on this. I think we are all better off when we have the wisdom of change it has certainly made me far more accepting / caring and willing to listen and understand. The hard thing is many others don’t have that experience so don’t fully understand why as parents we need better support, hopefully over time this will improve too.

    Liked by 3 people

  3. Miriam you are an amazing mum who has helped countless others by being able to put your feelings into such eloquent words, words which mirror the thoughts of others. You should never have been attacked for your original post. I’m happy that you’ve had great times recently but you’ve also had before that, and no doubt will again in the future, extremely challenging times. I’m always in awe of how you handle everything xxx

    Liked by 2 people

  4. This is a very powerful post. He has changed his communication and you have learned how to listen. I love that. When I wrote my book, I included the word “Acceptance” in my subtitle because many of the parents who shared their stories talked about their own journey to acceptance. You express your thoughts so beautifully!

    Liked by 1 person

  5. Thank you for the post(s)! You are documenting what I have been unable to. I no longer grieve my son as well. He is 28. We communicate now with a smorgasbord of methods. Your eloquently written messages have saved my day so many times. Bless you🥰💝

    Liked by 1 person

  6. I agree that there is more acceptance of autistic folks and its awesome. The autistic adults have made things better for themselves and for our kiddos.
    Like you, I’ve seen less acceptance and understanding for parents/carers, especially parents/carers of kids with high support needs.
    I was so grateful to find other parents/carers who understood how I felt years ago. (Ben is 11 also) It’s why I still post about the really hard days, in case someone else needs to know they aren’t alone.
    Thank you for being brave enough to stand up to the internet bullies. Thank you for your honesty. Thank you for sharing pictures of his happy-flappy ride in the elevator. Those moments are priceless 😁

    Liked by 1 person

  7. Love the child hate the autism. Love the child hate the NF1. Neurodiveristy does not understand what real autism is neither do anti vax fanatics and doom and gloom people at Age of Autism.

    Like

  8. Your grief was real. L have been through that with my autistic children and am still grieving a little bit because l see their frustration and it hurts. They were not nonverbal and only one has toileting issues neither scream or are violent any more, they simply need support with basic things they would ordinarily being handling by themselves. One is 20 and the other is 19. The youngest only leaves the house to watch a dvd at his dad’s house or the cinema with his dad except when he is in holidays with me. The other seems her independence and would travel alone on a train to practically anywhere , but not on a bus as she can’t read the bus timetable and not to the dentist as she has a dentist phobia. A word of advice though now that your son is eleven, become appointee for his financial affairs as soon as you are able. It may have to be officially on paper when he is sixteen no matter how obvious it is that he cannot handle his own. Thank you for sharing your thoughts and for encouraging me through them to look deeper at my pair as l continue to be their advocate and teacher.

    Liked by 1 person

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