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 eight 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.
Listen: Mia Freedman talks to Vanessa Cranfield, about raising a daughter with Downs Syndrome. Post continues after audio.
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.
This post originally appeared on Faith Mummy and has been republished here with full permission.
Top Comments
What if you didn't write about his private bathroom issues and changed how you think about him? Stop putting him through hours of aba and crap like that. Don't think of him as a toddler or someone who cares only for his own needs but as a person with feelings whose brain doesn't work the same as yours. These issues have reasons, autistic people sometimes take a while to feel their own bodies in terms of going to the bathroom.
Stop calling yourself an autism parent and being a martyr. This doesn't help. Your child can pick up on those feelings. Autistic people are extremely sensitive.
But no one wants to listen and this is why nothing changes.
I think the author is more than entitled to talk about these things. She is openly, honestly and unreservedly sharing her deepest and darkest thoughts on one of her "bad" days. She is being honest about the everyday struggle she faces. She is sharing her self-pity which she is entitled to. Who are we to judge her?
She is allowed to have bad days. She is allowed to feel depressed and down.
The author sounds like an incredible mother, repeatedly stating that she loves her child.
Also, your advice is slightly demeaning. I am sure that the author is well aware of her child's condition and limitations. She is just venting.
Sending the author so much love and wishing you strength, love and support. You are doing an incredible job xxx
Her child is a separate human being. I hate these stories. Because it is a reminder that autistic chikdren are not considered people with rights and feelings. This is why when parents like this kill their children you sympathize with them and not the child. Who like any person deserves privacy and not hsving their business all over the internet!
I agree Unimpressed. All too often you see the "beautiful parenting" stories, and the "perfect family" stories and the "perfect children" stories. Maybe it's all the social media we use that brainwashes us to only post the perfect and beautiful things in life. What about those shit days when things get too much? What, we aren't allowed to talk about those days? We aren't allowed to vent and show the world we are human too and that we get overwhelmed and sad?I feel for this poor mum, but she is so much stronger than she realises and yes, just like she says, tomorrow is a new day and she will dust herself off and do it all over again because she has to. She doesn't have a choice. It doesn't mean she loves him any less, it's just taking a moment to vent and let her feelings out.
Wow this is the most horrible insensitive comment you could ever write. I look at my perfectly healthy baby boy and think how lucky I am and how strong the writer of this article is.
When that test comes back positive this is certainly not the life you imagine and to know that things are never going to change... This mother is incredible to keep caring for her son, she’s allowed to want things to be different and deserves all our compassion and understanding.
Your judgy comments are unwanted and unwarranted and maybe you should walk a mile or two in her shoes before you start making blanket statements about her character
This was heartbreaking to read. It’s a crap situation for everyone involved.