I Don’t Want To Be An Autism Parent Anymore

*Preface: have you ever felt overwhelmed with life? I have. Of course I love my son with all my heart, I should never need to even justify that, but living with a child with severe autism is hard. I do not need threats made to my life or my child’s because I find some days hard. Comments like that will not be approved.

And for the record I don’t always feel like this but I am human and some days this is exactly how it is. *
The day started far too early. There was no sweet cuddles in bed or a little voice asking for a drink; no I was woken as usual by screaming. I have had day after day, month after month, year after year of being woken by screaming and I don’t want that anymore.

I don’t want to wake up to a smell that would make you want to vomit and bedding that is fit for the bin more than the washing machine, because yet again it is covered in something that ought not to be seen by anyone else. I am so tired of that now.

I don’t want to sit on my couch in the middle of the night looking at my child and wondering what I did to have a child who sees no point in sleeping, who at 8 still can’t say ‘mama’ and who still thinks the world revolves around his needs only.

I love him more than words could ever convey but I don’t want to be an autism mum anymore. 

I want to be a mum who has fun with her child rather than doing therapy with them.

I want to walk my son to school and talk to his friends instead of sending him in a taxi to a place where I am a stranger to them.

I want to be able to talk to my child about the fact it is his birthday soon and discuss what he would like to do to mark that day.

I want to be someone who takes my child to bowling, teaches them to ride a bike or even goes to the movies with them. Instead the only place I ever take him to is hospitals or respite.

I am tired of missing out on everything. I am tired of never having party invites, knowing nothing about his day at school, having to still dress him, having to take adult nappies and wipes with me wherever I go.

I don’t want to be an autism parent anymore.

I am tired of holding my child as he screams in public again.

I am tired of the never ending judgement, the stares and the horrid comments.

I am am tired of carrying around my broken heart as a result of the interventions and therapies having achieved nothing.

I simply can not bear the thought of my child as an adult knowing what society is like.

I am tired of meetings.

I am tired of phone calls from his school.

I am tired of fighting for everything but then being accused as having an attitude or people thinking I act like I am entitled. 

I don’t want my child to have autism anymore. This is not a ‘different way of seeing the world’ that he has, or ‘a wonderful gift’. This is a child about to be 9 years old who can not say ‘mum’ or use a bathroom himself. This is a child almost my height who still can’t put his own clothes on, brush his own teeth or dry himself after a bath. This is a child who can never ever be left alone, who has to have everything the same all the time, who self harms and wanders. This is a child still with the mind of a toddler who will require others to look after him his entire life.

Who would want that for their child?

Who would want that as a parent?

Today I don’t want to be an autism parent any more.

The problem is I have no choice.

So I strip that bed, bath that child, cook him that breakfast as I always do and let him sit on my knee while he rewinds the same ten seconds of video on you tube he did yesterday and the day before that and the day before that.

Nothing changes much in my house, except my feelings. 

Today I am tired. I don’t want to be an autism parent today the same way any other parent may feel about not wanting to be the mum of a toddler who tantrums daily or a baby who has reflux or the partner to someone with Alzheimer’s. We all have days when we are just down about the life we have.

Yet we carry on. We dust ourselves down, search for some positives or listen to some music.

Tomorrow is a new day. It will probably start off with screaming again too., but maybe tomorrow I will be stronger, more hopeful, more upbeat.

Maybe tomorrow I will want to be the autism parent I need to be. 

Maybe tomorrow. 

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313 thoughts on “I Don’t Want To Be An Autism Parent Anymore

  1. I found this post by accident. I am a parent in the UK. I don’t have an autism child; I have a normal 2 year old and 3 year old, but I find it really hard at the moment. Your post made me realise that life could be significantly harder, and I feel terrible for being so low when my children are healthy. I am selfish, I think. You are obviously an amazing person who just wants to be honest that life can sometimes feel totally shit. I get it, and I wish you all the best.

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  2. Reading what you wrote echoes every one of my thoughts as my life is so pretty much exactly the same. Today I have reached my maximum and I know it won’t be long before I go spiralling down. I have a 9 year old and everyday is like ground hog day, and yes I wake up every day with a child who is jumping, screaming something only he understands and on constant watch. Even going to the toilet is an ordeal as he will be outside the toilet door, crying and banging it down as he doesn’t like me out of sight even for a 1 second. I don’t want to be a mother of a severely autistic child but I was dealt with this card and I will never know when I will hear him say Mummmy or let alone be the boy I thought he would be. I’m shutting down fast and hope is not something I am going to hold on to anymore. I can only say, no matter how strong we are we are only humans and unfortunately many don’t realise how much physical support we so badly need, but there isn’t for parents like is. I’m tired of asking as it’s more like begging now. I have given up with it all. The system for disabled children and help for parents is only in name and no one out there is listening or cares about what we are going through. Everything is so textbook based and individual circumstances are chucked out. It will be too late for parents like me as years of fighting for help has left me shutting down soon and fast.

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  3. i feel exactly the same, my kid is 4 and everyday is the same, i have been putting all my effort but im broken now, I am afraid of the world we live in, I wish we both die soon.

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    • Oh Eugenia, I have been thru those dark times too, but don’t give in to them. The number one thing you need to do to look after your child is to look after yourself. You are number one. Without you they have nothing. You look after yourself by getting support workers to help you, by visiting a counsellor regularly, by joining carer support groups so you can meet others like you, getting respite, giving yourself your own time to do the hobbies/work that is important to you. That is very important, you must give yourself your own time – time off – just like in a job. It is a job and treat it like one, so you are allowed your time off. I have a 21 one year old, and it is still stressful, but he is growing and learning. They do not remain a 4 year old forever. OK, they may not become a “normal” adult, but they do still grow and learn and become adults in their own way. You also need to find help for your child as they grow; good schools, good support workers, respite homes for them to experience life away from home, and ultimately supported homes for them to live in as an adult. My plan is to do as much as I can to ensure he will be independent, but at the same time put in plans for support for him if he never gains that independence – aim for both. That way, when you are gone they will be able to cope. I wish you all the best, and remember, your child needs you to survive, so you need to look after yourself first.

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  4. I so understand..my son is 12 and lately it’s been a nightmare. I try to stay positive but it’s exhausting. I just want to be able to take him out in public without him screaming or running off. I want five minutes a,one..he’s always there screaming or hitting the walls. I’m tired of the texts messages from his teacher. I find no joy in life anymore. I love my son..I just lost hope in thinking things will get better..and that breaks my heart..because hope was all I had left.

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