Why I will no longer attend anything at my autistic son’s school

I don’t want to be one of those parents that never turns up for anything at their child’s school, but next year I can assure you that I will be that very parent. I won’t be at any parent engagement events, or school shows and I will be avoiding assemblies like the plague! I won’t even be at parents night and my child won’t even see me at the annual achievement assembly either.

I am not a bad parent though, far from it.

This is NOT what I want but I have come to the conclusion it really is for the best.

In fact making this decision has broken my heart.

Yet my New Years resolution to not attend anything at my son’s school is one New Years resolution I fully intend to keep.

Why? Well because it is what my son wants.

I never thought my child would want to be the only child in the school nativity without his mum or dad sitting proudly watching. I never thought my son would want to collect his annual achievement award with no-one to cheer him on. The thing is though; I am not autistic, he is.

He sees the world very differently to me and this is a great example of that. I see his school as somewhere I want to be highly involved with and engaged with. I want the emotional feeling of seeing my only son being on stage and taking part in things I never thought he would be capable of. I want photographs and memories to treasure of him dressed in costumes and joining in. I am really wanting it all for me. Isaac though sees things very plainly: mum belongs at home not school. End of.

Seeing me at school, for whatever reason, causing him far too much distress. That distress, confusion and even anger, has now built to a point where it is no longer safe for me, or for staff, to have me at school events. Isaac gets so upset at seeing me and so anxious he can harm himself and others. That distress lasts a long time as he just can not process the fact I have appeared somewhere that, in his mind, I should never be. When he comes home from school his anxiety is set off again as he sees me back home and he must wonder how I was at his school 14 miles from home just a few hours before. He doesn’t have the cognitive or processing ability to understand fully that I could drive there and back (after all he never drives so how could I?) and the whole evening becomes challenging for the whole family. Things get thrown, broken, we get screamed at and he is in obvious distress. We can not ‘talk it through’ since at 9 he has no speech at all. It is awful and heart breaking for everyone.

So I have had to lay aside my own desire to see my child at school. I have had to take the very difficult decision to never see another nativity play he is in, or visit him in his classroom. It is even harder when I know he is actually excited to see other parents do these things…just not his own mum.

I could disguise myself and sit at the back of the hall I guess but what if he did somehow see me? Is it worth the upset it causes him?

I will continue to support his school by sending items in, communicating via his home school diary and giving money as required. I want much more, of course, but I hope they understand that this is the best way now. I pray they take photos that I will never be able to take and maybe even record events on video if possible. It won’t be the same as being there for me but what can I do?

I miss out on seeing my son do so much already. I miss out on hearing his voice, or teaching him to ride a bike, or even playing a simple game with him. I just never thought I would miss out on seeing him at school too.

New year, new term, and a new way of putting my son’s needs before my own.

This is the right thing for my son, for his sister and for the whole family. I have tried for five years but that’s it over now. From now on I will no longer attend anything at my son’s school and for us this is hopefully going to help make the next year more manageable and pleasant for us all.

Sometimes though I just wish autism was a little less hard on my heart.

33 thoughts on “Why I will no longer attend anything at my autistic son’s school

  1. It’s not uncommon for children with additional needs ( esp ASC) to struggle with parents coming to school. The school should be actively supporting you with this- recording / photographing everyday school life as well as events, parent teacher meetings off site ,facetime, events such as coffee mornings at “neutral spaces” etc… talk to the school ( if you haven’t already)

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    • School events are not allowed to be recorded and no-one can take photos but we are allowed back in class. Sadly I will never get back to class so have to hope his teacher will take some for me. School are fully aware and have been in agreement with this.

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  2. I totally understand your logic and reasoning.
    Many years ago I had an elderly uncle who ended up in a dementia unit. Every time I visited, he used to cling to me and sob when I left, and often confused me with his late wife. It used to distress us greatly, and once I had left, he went back to being peaceful and calm again.
    The guilt we feel in these situations is incredible, but we have to sometimes in life make these terrible decisions, face awful judgement from others, but act in a way which causes the least pain to the person that had no understanding of ‘why’.

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  3. Thank you for making this public so many people don’t understand the world of parents with a child who is autistic. Remember always the love and understanding you give your son is exceptional and the sacrifices you make like this make his world a better place. Well done and I hope you get those precious memories of school in some shape or form.

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  4. I’m sure this must be a heart rentching decision you have made for your son, I work in a local Asn school and there is parent who cannot attend for many other reasons & I am sure the school will support you in other ways to keep you update in your sons time at school as we do in ours. I am sure you make lots of happy time & memories 2gether in other ways that your lovely son will be very happy with.Hx

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  5. As a mom of a now 31 yr old Son I totally understand. I have been there sneaking in and out for the same reasons. Keep your chin up. This may pass. The one thing I have learned over the years is that what is bothersome today can change in an instant. If I show up to his day program I better be prepared to take him home early. He is however a lot better as he gets older.
    Be encouraged
    USA Mom

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  6. I understand you, big time. Of course I know Autism, but I don’t know your son, nor his personality. I can only read your post. Then I look at my daughter’s time at school. I am so glad that you are listening to your son’s wishes. I did not when my daughter went to secondary school. I kept her there for too long, and with the bullying that she had to endure, well she is still suffering from it. Please keep on listening to your son, and act accordingly. I wasted precious time, but things are getting much better. She is 20 years. The more you listen, the more you will understand, and it looks like you are in the right way to me.

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  7. That is so heart breaking to read. My son is 21 and I can’t touch him in any way shape or form, which also breaks my heart, but like you, I am respecting his wishes! I wish I could offer you some words of wisdom, but I don’t have any. I do however totally get your pain! Sending you lots of good wishes from one parent to another, you are doing the right thing x

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  8. I teach dance in a school with pupils who have a diagnosis of Autism.
    150 pupils a week it is the best job on the whole world .
    Parents would love to be part of the experience where their children show amazing talent .
    But their children can’t cope.
    So I collect videos and put them on a usb .
    Parents watch it alone at first but some have watched them with their child.
    We just have to try and find some solutions to a very difficult situation.

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  9. Why not ask someone to video the show and then with his agreement of course watch it with him at home. Even though he has no speech see how he responds if you ask him. Only you know if this is possible x
    You could watch it with a family friend or family alternatively x Don’t beat yourself up x It’s just the way he is x An autistic friend described herself to me as extra unique x

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  10. This breaks my heart to read but I understand completely. As a professional we see this all too often and will manage to placate a child if they are ‘waiting’ to see their parent in a school event- but we never know what happens once the child gets home. This has been so insightful for me. Thank you for your honesty. It will ensure that I review our practice- we are already big on photographic evidence that regularly goes home but we need to look at other ways of engaging with parents that aren’t school based.

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  11. When my son was diagnosed in 1991, on his 3d birthday, I broke down and sobbed in front of the doctors, and one psycologist said to me, “How are you feeling right now?”

    and I told him I felt as though I’d just been told my son was dead…or dying.I’d read enough horror stories about autism by then to be familiar with what was in store for us, and I wanted to die myself.
    The psycologist took my hand and said “you have to understand…your little boy IS dying…the child you thought you had, and knew, is disappearing right now as we watch, but he is being replaced by Another little boy…in a way..his ghost. The two of you will live parallel lives together, without being able to cross over to each others world…but in time youll learn to love this new little boy just as much”
    Wow.
    Although most people would think this is the cruelest thing anyone could ever say to a parent {it Is} its also, regrettably, the truest for those of us whose kids are on a certain place on the spectrum. I never, in his entire childhood, sat my son on my lap, hugged him, held his hand. I waited until he was asleep to sit by his side and ruffle his hair, softly.He stared through us as though we didnt exist, and it was a monumental amount of time, love and money to get him to a point where he could interact with us…but at age 30 Alex still never sits on the couch and watches TV with me.He spends 100% of his time at home in his room, and when we go out he eats separately at his own table. He did die, at age 3, and I HAVE been living with his ghost….who also suffers from epilepsy{thanks, God} OCD, ADD and pyscho motor agitation. So I totally get how you feel.

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