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.
This post originally appeared on Faith Mummy and has been republished here with full permission.