When your eldest child is autistic things don’t follow the standard format. You can’t rely on them to lead the way for your other kids, and some days, it hurts like hell.
Oh I know what you’re thinking. That I should lower my expectations, and not put too many demands onto any of their shoulders (especially Polly’s). They’re just kids after all. Truthfully speaking, I do feel this way a lot of the time. We live in the real world though don’t we? And on the super challenging days not expecting anything and not being tempted to future gaze just isn’t realistic.
Above anything else I want them to enjoy their childhood, and look back on these years fondly. But I also want my kids to become decent human beings who can cope in this ever changing, often cruel world.
If that’s a crime, then I am guilty as charged!
When your eldest child is autistic, and you can’t leave the room to have a pee without world war three kicking off, it makes your job as a parent hard.
Really bloody hard!
Polly is very high functioning, which comes with many blessings. Yes she’s verbal and continent and able bodied, but my goodness being high functioning can also be a curse.
I refuse to be so terrified of a divided autism community that I’m not willing to admit this.
As I’ve said before, us parents of kids with additional needs are not robots. We cope with monumental levels of stress. I try with all my might to not fall into the trap of ‘woe is me’ but some days it’s impossible to not long for the life you thought you and your family would have.
My daughter is growing up
I’m becoming hyper aware of the fact that most people expect more of Polly than she’s capable of giving. Here’s the thing though, because she’s so articulate and eager to please, she will do her upmost to give her everything. For her friends, for my friends, for her grandparents, our extended family. Hell the distant neighbour who we only see once in a blue moon will, without doubt, see her as the perfect child.
For the people she mostly shares her four walls with though, it’s often a very different story. Which is another thing that stings like hell some days.
My girl is amazing at masking her autism (I wrote about it here). It’s breathtakingly exhausting for her, but she feels she has to do it, otherwise her friends won’t like her anymore. She’s already seen how fickle people can be, how they want to be your best mate one minute and drop you like a hot potato the next. She puts in a lot of effort into being ‘her best Polly’ (her words, a legacy from school) when she’s on display.
I wish more than anything that I could teach her how unimportant most of these people she is so desperate to impress are.
She came to me last week and said that she felt terrible for not being a good big sister. She said she wanted to be better the next day, and try harder. These words came totally unexpectedly, from my not even nine year old autistic child (nothing short of a miracle). I know in my heart that she wants to be friends with Clara and Freddy, but the way she treats them leaves a lot to be desired.
When progress comes though, my word it’s as sweet as a multicoloured, many layered unicorn cake.
Polly is a phenomenal child in so many respects.
You only have to take a look at her cooking on my Insta Stories, or my most highly viewed YouTube videos to see her skills in action. I have no doubt in my mind that five, ten years from now a lot of these memories will have faded. They will be distant and I’ll look back on them feeling proud of how far we’ve come. All any of us really want is for our kids to be happy, to make good decisions and be decent people. My children are all well on their way to ticking these boxes. During moments of clarity I can see this bright future of ours.
BUT, right now, these days can push me to the very edge.
Polly starting to connect the dots between her behaviour and how it effects her siblings is incredible. The thing is though, as with all of her other positive traits, it comes with a high price tag. The dreaded overwhelm. Which leads to hyperactivity, meltdowns and starting mindless fights. When our little roller coaster is on the down, Polly takes everything out on us.
Now, I can handle being a punch bag. It’s not pleasant, but I’m a grown up. I can deal with it. When she takes her moods out on the younger two it’s another story. My primal mama bear instinct kicks in.
“SOMEONE IS HURTING YOUR BABY” – it screams inside my head!
But that someone hurting my baby is another one of my babies.
What a quandary.
It pains me that Polly can be so utterly adorable for everyone else, yet has the capacity to treat us so badly. I can only hope that as time goes on, and more dots are connected, we’ll see less and less of this.
When your eldest child is autistic your other children don’t have a typical big sister/brother role model to look up to.
Sometimes Clara and Freddy’s mere presence is a trigger for Polly. Ultimately she feels short changed by them. She has articulated to me many times that she wants all the attention for herself, and is still getting used to sharing it (even though they are only two and four years younger).
I’ve come to the conclusion that she would have been the most amazing only child to have ever graced the planet.
I’m perpetually caught between a rock and a hard place, questioning whether anyone is getting their needs met.
When your eldest child is autistic, and all your kids are hurting, you have days that need to be written off and forgotten about pronto. Days that start with a five on the clock and the fighting begins shortly afterwards. Days that reduce you to tears, many times throughout. Days where your mind wanders down the road of ‘what if…’ and you have to fight your internal monologue with all your might to shut the F up.
I don’t over-share about my children, largely because my life before my children was so colourful. When I over-share it’s about me not them. I totally get that others need to though, that it helps them through their day. If they find themselves with friends in short supply and the ones they’ve made through social media are the only ones still around. I stand by all my brothers and sisters fighting the good fight in the autism parenting community right now. We are stronger together people, truly we are.
I’m going to leave you with some words to think about. They say that what screws us up most in life is the image in our heads of how we think things should be.
Do you agree?