When Your Eldest Child is Autistic

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.

eldest child is autistic 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.

eldest child is autistic 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.

eldest child is autistic

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? 

Random Musings of an Autism Parent

Random Musings of an Autism ParentStress, so much stress. Every day, in the face of it, you try your best. But what if it’s not enough? You fret, you worry, you toss and turn at night.  

The cortisol pumps in your head, making it feel like it’s going to explode. 

You try not to yell, you don’t want to yell, but you can’t help yourself.

Unless you live it, you will never understand what it means to be an autism parent. The highest highs, and depths of despair lows.  

External assistance so thin on the ground, budgets slashed to the bone. You don’t qualify, you’re on your own. 

No time for space, no space to breathe. The cortisol rings through your ears. 

You look enviously at other families enjoying their lives and time together. How can you not? You aren’t a robot! 

So many ideas. Fun things you could be doing instead of constantly putting out fires. 

Your head swims with inspiration when there’s no way to capture it, but your head is completely empty once the kids are finally in bed. 

Evenings gone, sleep stolen. 

So much stress, cortisol pumps.  

You’ve accepted and accepted and accepted, but there are things you refuse to allow in the name of autism.

Random Musings of an Autism ParentThe spitefulness is the worst. Screaming “I hate you!” in their faces. The tears, screaming, more yelling. Vicious cycle. 

You know the things you’re supposed to be doing, and that knowledge haunts you daily. Coulda, woulda, shoulda. Futile thoughts, unhelpful worries.  

You need to implement a crisis plan, and you need to stick to it like glue. One eye on the future, but don’t look too far ahead. Concentrate on a making tomorrow a brighter day.

High functioning autism can feel like a curse, but there absolutely must be positives? Super powers for superheroes.

House trashed, mind messy. Hope gone. 

Then when all feels completely lost, a breakthrough.

“I don’t want to fight anymore mama.” How you’ve longed to hear these words. Olive branch held out. Clarity coming back. 

Random Musings of an Autism ParentHello perspective, you’ve been missed. Far too busy trying to figure out the autism parent minefield.

You’ve been shattered into tiny pieces, but must come back together again. Unite as a family in your quest for happiness.

You must find your way back to happy, what’s the alternative?

You try your best, always trying to do what’s best. 

Cortisol pumps harder than ever before.

You need to be kinder to yourself, but how when you go through life feeling like such an utter failure? 

Is being an autism parent the toughest gig of all?

Random Musings of an Autism Parent

We Need to Stop Fighting Over Who Has it the Hardest 

we need to stop fighting over who has it the hardestEarlier this week I posted an article about how hard it is not being able to take my autistic daughter’s sadness away (you can read it here if you like).

Don’t get me wrong, there are many other things that are hard. As my children grow older though, I’m learning that the very hardest thing is seeing them suffer (in any capacity) and not being able to do a damn thing about it.

I was feeling super low

I posted the blog on one of the home ed Facebook groups I’m part of. Lots of parents in the group have autistic kids, so I asked if anyone had advice for me. Some offered hugs, some thought I was saying how hard home ed is so gave me solutions for a different problem, and a few came back with absolute gems of wisdom. I’m very grateful to everyone who took the time to write a comment, because almost everything everyone said will come in useful at some point. This is community at it’s best. 

Unfortunately a few also decided to kick me while I was down, and remind me how lucky I am to have the life I have and how hard their own lives are in comparison. The nicer people in the group reminded them that I’d gone there for support, and those comments aren’t helpful.

I’m no stranger to having a hard time

Between my difficult childhood, where I suffered abuse and bullying, emerging into adulthood at fifteen, and a decade of self-destruct, I had a rockier start to life than anyone else I know. I had two mental breakdowns by the time I was twenty six, but when rock bottom finally came, it didn’t leave me broken in the gutter forever. It was the start of a journey to happiness, and mental stability. (You can read more about it here if you wish).

Ten years on and I’m able to constructively look at my life, and the lessons it’s taught me. I try as much as I can to have a positive outlook, and not to let my mind wander down the ‘why me, it’s so unfair’ road. But I still have my wobbles. As I’ve said time and time again, we aren’t robots, and we should allow ourselves our feelings. 

we need to stop fighting over who has it the hardestThis week was a wobbly week, for many reasons. When I was at my absolute lowest and weakest I reached out for support. I find it unbelievable that some people (albeit the minority) would feel that that would be the best time to essentially tell me to stop whingeing. That they have it harder, and I should just focus on the positives.

It’s got me thinking about how much one upmanship goes on, and how much it needs to stop!

My husband and I waste a ridiculous amount of our energy arguing over who has it harder. Him for going to work on four hours sleep, or me for being with the kids 24/7. Even in the midst of a squabble the rational side of my brain is saying “it’s equally hard”, but the irrational part is saying “no Reneé, you have it harder!”

How many times have you heard your friends complaining about their kids, while you sit there thinking “but, you have it so easy!” I know I’ve it done before. Especially when people complain about the few months of tiredness after having a newborn. We all know that will pass, and quickly, but at the time it’s difficult to get the perspective we need.

Politics, money (or lack of it), religion, how many kids we’ve got and how much or little they sleep, or behave themselves. There are so many things during the course of the day that we can allow ourselves to be consumed by, and get annoyed with each other over. But you know what? It doesn’t help. Not one little bit.

The thing is, it’s all relative

we need to stop fighting over who has it the hardestSome people’s problems might not seem like much to you, but they are to them. There could also be things they are keeping to themselves that are contributing to their woes. For whatever reasons, they might not be able to deal with the hand they were dealt as well as you can, but that isn’t always due to lack of trying.

Next time you come across someone having a crap day, don’t kick them in the guts. Offer them support. Show them love, and kindness and compassion. A shoulder to cry on if they’re close by, a virtual hug if they aren’t. Don’t tell them that you have it harder and they should just pretend everything’s hunky dory. That’s how breakdowns start.

Even my hardest days clearly seem like a walk in the park to others, and I’m sure that their lives would seem easy to some. On the flip side, there are plenty of people I know who tell me that reading my blog makes them feel better about their own problems, and that I always put things into perspective for them.

There will always be someone out there, somewhere, having a harder day than you, but life’s challenges are not a competition. Can we please stop treating them like they are? 

Remember, kindness is cool ❤️

The Hardest Thing About Being an Autism Mama

the hardest thing about being an autism mamaThe Hardest Thing About Being an Autism Mama

Another day started too early, with grumping and hurrumping and fighting before even getting to the breakfast table.

Tears of frustration being cried at not even 8am. A sad Clara went off to school, asking me once again “why does Polly hate me so much?”

Of course Polly doesn’t hate her sister, but it can certainly come across that way. I futilely tried to find answers when we got home. 

Polly shut down, her face became angry, then the jumping started. Tears turned into a full blown meltdown, communication was lost. I waited for the red mist to pass.

Comforted her when comforting was allowed, and we moved on with our morning as best we could. 

All day my head has felt like it has cymbals going off inside it, goodness only knows what it feels like inside Polly’s head.

Days like today make it impossible to learn. She’s switched off, disengaged from me and the world, can’t concentrate even when she tries to. 

Days like today are all about damage limitation, and raising happiness levels. Making sure she isn’t violent towards Freddy, but he’s two. He can be annoying as all toddler’s can, and it’s hard to always intervene in time.

I try and make sense of it. I can’t. No matter how much progress we seem to make, the glimmers of success are too short lived. 

A few weeks of sleeping fairly well have been replaced with messing around on the way to bed, waking up at 3am and starting the day far too early. 

It’s hard to function when we aren’t sleeping, and it’s been seven long years in this house. Patience wears thin, you know all the things you should be doing, but it can feel impossible to actually do those things.  

It’s so very hard to understand your child, whose behaviour is as spiteful as it can be to your other children. In moments of clarity though, she looks at me with those big blue eyes, and says “I can’t help it mama, I can’t stop myself!”  

Then the tears come again, and she says she’s sorry and that she’s going to try and stop being mean.  

“I’m so sad” she tells me. I hug her and give her all the love I’m capable of giving. 

There are many things that are hard about being an autism mama. 

But the hardest thing is not being able to make her sadness go away. 

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