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. 

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

  1. This brought me to tears, because I too don’t feel like beign an Autism mom today. It it hard and some days are fruitful and so rewarding but most days are hard, long and never ending, but when my 3 year old autistic child is asleep I feel that the next day will be better…at least I hope it is.

    Like

  2. 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.

    Liked by 3 people

  3. 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.

    Like

  4. 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.

    Like

    • 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.

      Like

  5. 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.

    Like

  6. Hugs from South Florida. I thought I was the only one who had feelings like that some days. People are so judgmental and stupid it’s not even worth taking him into densely populated public places. It’s amazing you are brave enough to take him into public. Just take a deep breath, try not to beat yourself up for feeling how you do and know that the sun will rise tomorrow.

    Liked by 1 person

  7. I know how this feels, I have lost my ability to stay calm today, lost my ability to give the love and care about my son needs. Lost the patience to stay up all night and wake up early as though everything is okay. I feel horrid about myself for shouting and wanting to be by myself. The only saving grace is I know I can fill my sons heart with love when I am not so tired (emotionally and physically). I feel your anguish in what you said, and you are not alone. Its challenging as hell……but the rewards as small as they are, are so fulfilling. Hope that gives you support in someway, as did your comments.

    Like

  8. I also feel the exact same my son is so like yours I also get attacked every day he doesn’t mean it but I’m so tired no help been asking for help for months nothing sick of this life only hope time helps him grow develop no one understands what we go through and don’t care good to know I’m not alone x

    Like

  9. This is me today. Everything you described about your son is the same for me every day.. sometimes a little better than others.. Just want you to know you are not alone.. praying for all mums and dads like us .. take care xxx

    Liked by 1 person

  10. I’m feeling exactly this way today. My son is 3 and severely autistic. My husband left for a week and I have no family near. I feel like it’s a non stop battle and I’m exhausted. Sometimes after I finally win and get him to sleep I just sit and cry knowing that I better go to sleep before he wakes up again. I try not to lose my patience when he signs for his drink just to scream and throw it right back into my face. There are days that feel like I’ve done something wrong and having a child with autism is my punishment. I know that is horrible to think and I love my son so much. He has so many great qualities about him. And the few moments that he cuddles me or laugh or even looks at me like he loves me most in the world makes it worth it but tonight I feel defeated.

    Liked by 1 person

  11. Thank you for your honesty. Domestic violence and foster home neglect caused my child’s autism. He’s in his fathers custody now. His father must live with the human result of his violent attack on me. I am glad for that And sad for the child. I should have aborted him after the placenta bleeding was found due to violence but I had hope. Hope he would be normal just like my other kids. Hope that the father would change. I wonder many other women won’t admit that stress or domestic violence, alcohol, common chemicals, or drug use caused their child’s autism???

    Like

  12. I very much appreciate the honesty. It has brought me to tears in both sympathy and I’m being reminded of others going through similar struggles. Definitely difficult and even sometimes debilitating to admit the feelings of despair that come with facing such realities. Helps to try to be grateful it’s not worse- but also just as helpful to let yourself be upset about it from time to time. As long as we do dust ourselves off as said in the article. Parents that deal with special needs children tend to be stronger – out of necessity. It’s an odd thing because it’s not so much a blessing but it’s also something to recognize and that like building and maintaining physical strength- it’s very tiresome the emotional/mental (AND Physical) toll it takes to raise special needs children.

    Liked by 1 person

  13. I know this post is 2 years old but…
    Thank you for writing this! I really needed to hear someone talk about the “ugly” side of autism. The side no one really knows about. I have been to support groups only to leaving feeling more frustrated about what I go through everyday. No offense to the parents of child with mid/high functioning autism but I have had conversation with parents and it would start off a little relatable then their like “yeah then Timmy says to me” at that point I’m tuned out of the conversation. I don’t have that “my child talks” moments. And it hurts everyday

    Liked by 1 person

  14. I feel your pain. I also have a child with severe autism and today I don’t want to be an autism mom. Maybe tomorrow I will be stronger. Thank you for making me feel like I’m not alone.

    Liked by 1 person

  15. Although my 4.5 yr old child is not exactly the same, I deal with very similar struggles. Sometimes I just get so tired of not being able to just sit down with my son and read him a book or have him sit still to watch a movie or entertain himself. And he just wants to eat non-stop! And poop diapers are a nightmare. He puts his hands in the pull up and then eats the poop and I have to hurry up and get him into the tub before he gets it everywhere! I am lucky that we can go to playgrounds together and go swimming and that he doesn’t require a strict routine. But people have no clue the stress and work I’m dealing with! I look forward to sleeping so much.

    Liked by 1 person

  16. I have a grandson with 1P36 syndrome, missing a chromosome. My daughter has done more and gone through more than most mothers will ever go through in raising him mostly on her own. He’s almost 15 now, we still change diapers, he still can’t say ” Mom I love you ” or much of anything except various sounds. I have put plexiglass over all of the windows in his particular living area so he won’t break any more. When we change diapers we have to wrap packing tape around the bottom of two different shirts to keep him from pulling his diapers off and or playing with his feces and spreading that around the room. He has mild seizures occasionally but gran mal seizures every month or so which are terrifying. He plays with toys most of the day at home that have flashing colored lights and sounds emitting from them.
    My daughter recently joined the Army National Guard after her short career as a computer software engineer. She worked from home in the software job which made it much easier to watch her son. Now she relies on me most of the time to care for him while shes at work as a recruiter. He goes to school in the special education section with other special needs children. I get him bathed in the mornings and on the bus and then go back to my daughters to get him off of the bus 6 hours later. Recently however he’s been causing problems, breaking things and out of control so they will only let him attend school for 3 hours a day. My daughter recently found two women that she’ll pay to watch him and give me a break so I may pursue a job and continue to work on my own home renovation. Since the school cut his hours there to only three hours a day my daughter is now paying so much for sitters every week that her once great financial condition is falling by the wayside. It’s so very frustrating trying to do your very best in raising a special needs child. Sadly this world was not particularly designed nor all that supportive of us special needs parents and grandparents. However sites like this give us or me in this case an out to express to others our own particular hardship story but in doing so read the stories of others and realize we are surely not alone and find hope and strength to carry on. Thank you ….all of you who share in these somewhat similar struggles and occasional victories over these situations that most people would find almost impossible to deal with. Thank you and bless you all who struggle with our ” special children.”

    Liked by 1 person

  17. Don’t give up don’t ever give up…there are more of us than you know. Your words ring truer than you know. Please forgive forget and march on after a martini or three (when you can!)….

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s