Ella, Special needs parenting

Why I would change my daughter if I could

I’m writing this honestly not knowing if I’ll ever have the guts to post it, I know there’ll be some that disagree with it.

**I’m editing to add this here, because as expected this post has rubbed some people the wrong way. – I have never tried to change Ella, nor would I ever try to change her. I fully accept her and love her for who she is, and I know that can’t be changed. This post was born out of frustration, wishing her life was easier for her.

There’s a saying that special needs parents say all the time –

‘I wouldn’t change them for the world’

and that’s great for them, if it’s true.
But for me, I would change things for her, in a second, if I could!
I know that makes me sound like a horrible person But let me try to explain.

Keep in mind I’m writing this of the back a bad week.
Ella has been sick. It’s just a common cold, but of course nothing is common with Ella and cri du chat! 3 times she woke up and vomited all through her bed. When Ella’s got a chesty cough, she can’t cough very well and it causes her to vomit. Often. And if it’s not vomit, it’s snot. All through her hair, which is a nightmare because she hates getting her hair washed, or brushed.
Seeing your 7 year old so miserable, and crying because she doesn’t understand why she feels miserable. Not knowing what she wants or how to feel better. Not eating. I say it’s not too bad but sometimes it’s horrible. She cried for 45 minutes because she signed to have a bath but when I ran it for her she had a meltdown. I still don’t know why, she got in eventually and was fine. I’m sure there was something I was missing but with communication being so hard for Ella I’ll never know. And not knowing how or being able to help her is horrible.
Plus today we had an appointment that was an hour’s drive away that was cancelled, and they didn’t let me know. So that’s 2 hours in a car, with 2 sick kids, for no reason! So I’m completely fed up.
But I digress.

The point is our life isn’t easy, during pregnancy the most common thing a woman says is as long as it’s healthy, and why not? Who doesn’t want their baby to be healthy, who would choose for things to be harder.

This doesn’t mean I don’t love Ella just as she is, of course I do!
I love Ella more than myself. She is amazing, determined, cheeky, funny, strong and she makes me laugh every single day.
I would do anything, sacrifice anything for her, and I would do everything in my power to help her to be her best self.

But Ella’s life hasn’t been easy either. From a tiny baby being pricked and prodded for blood tests and not being able to drink from me or a bottle. As she’s grown, Nothing has come easily for her, she had to work so hard to achieve everything. There’s been tears, tantrums, pain, fear, medical procedures, surgery all at an age where she doesn’t understand why it’s happening.
And now that she’s older, I can see she’s starting to realise she’s different, I see the look of confusion on her face around her peers sometimes and it’s only going to get worse.
It breaks my heart to think one day she won’t like herself, or who she is, because she’s different. I don’t want that for her.

Not to mention the ways she’s been treated by her peers, by younger kids and even by adults. The ways she’s been dismissed or ignored. Her perfect face dropping when children run away from her – And again, that will continue as she gets older, possibly even get worse.

So yes, I would take all that away for her in a heartbeat if I could.

And really, what parent wouldn’t want their kid to have a happy, easy life? What parent wouldn’t want to take away anything that causes their kid heartache or pain?

At the end of the day, I know I can’t change her, and I accept her for the amazing person she is. Instead, I’m trying to my part to change the world, to shed light on how people can make things easier for her and people like her.

4 thoughts on “Why I would change my daughter if I could”

  1. She suffers more because people don’t understand, or don’t try to. The stuff that comes from being sick, that’s life. That happens. It sucks. I’m autistic and I have my most violent meltdowns when I’m sick or menstruating or haven’t slept well.
    You mean well, but the message your post sends is “I want a nondisabled child who looks like my daughter” and it’s hurtful to people like me. It will probably be hurtful to her, too, if she could read it.
    Disabled kids are hard. I don’t pretend that’s not the case. I don’t pretend that you don’t cry in frustration because plans fell through or people didn’t do their jobs to make your daughter’s life easier, or you’re seeing her peers exclude her. But the thing is a lot of those problems are *other people*, not your daughter.
    Change the world to work for her. Don’t change her. Otherwise the message becomes “be yourself…but not like that.”
    She is who she is, and she needs you to (metaphorically) carve a space for her in the world instead of carving bits of her off to fit in a space she wasn’t meant to be.
    It’s hard, but she is worth the fight.


    1. Thank you for your comment. I’m sorry if this post has hurt you, My intention obviously isn’t to hurt anyone, but to do exactly as you suggested – change the world for her. I’m not sure if you’ve read any other posts, but This blog is my way of trying to get other people to accept her (and others like her) for who they are and that’s is portrayed more often than not through my writing.
      This post was born from frustration, and that’s ok too. I’m sure during your own violent meltdowns there are moments you wish your life was easier, that’s allthis is, I wish I could make Ella’s life easier, to take away any past or future pain from her. I’m not, nor have I ever tried to change her, because I know I can’t, I accept her for who she is, and always will.
      I made a promise to be honest, and this is my truth.


      1. A post like this without context is easy to read as “another autism parent moaning that her life is hard because of her child’s issues” and that has unfortunately hurt many autistic people. I’m glad this was a mere frustration post and not how you think all the time. There are many who think that way nonstop and reap the pity points. Thank God that’s not you.

        Meltdowns suck a lot. The most common thought I have during them is “stop the world!” more than “stop me!” Meltdowns aren’t a choice. They aren’t behavior either. They’re a feeling and the behavior follows, like sneezing because your nose itches. It’s like being the angriest you’ve been in your life on top of a huge adrenaline surge. I see “spiderwebs” because the blood is pulsing in my eyes at full speed. They’re like Godzilla, or a tornado, or an earthquake, or a train coming at you. All you can really do is sit back and wait for it to pass.

        I’m sure your child will learn to understand her body and senses as she gets older. I’m in my 30s and just mastered a bit more impulse control. I like to scream randomly or throw things, but I can stop myself now. I’m not saying she’ll follow my developmental path or anything. She’s just taking a road less traveled. Being autistic is hard, but it’s mostly because the world makes it hard for me and not the other way around. I can do my best and behave my best when I can stim and take breaks when I need to.

        Good luck mama! 🙂


      2. I definitely understand how this post could have come across like that, And I would love if you had the chance to check out some of my other posts. Ella’s also missing part of a chromosome (cri du chat) so she’s got physical and mental delays as well as some other stuff going on. I did want to make it clear, that it’s not my life being hard that bothers me, it’s the fact that her life is hard.
        Thank you for explaining your meltdowns for me, when Ella has hers my heart just aches for her, I really hope it gets easier for her as she gets older. I definitely encourage breaks for her, and her school is really accommodating with this as well.
        Thank you again for understanding 🙂


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