“I hate you, and wish you weren’t part of our family.”

Screamed 3yo Freddy, in another one of his rages. It was fuelled by me insisting that he went to the toilet when he got up this morning. I know, what a terrible mama right? Anyone who has lived with a threenager will know how tricky they are. Super sweet, caring and loving one minute. The next all hell has broken loose for suggesting something that should only be worthy of a nod. 

I do hope it’s just a phase, I find myself thinking multiple times every day. I can’t spend too much time contemplating the other option. That there’s a whole load of learnt behaviour going on here.   

“I hate school, why do I have to go when Polly and Freddy don’t?”

Screamed 5yo Clara on Friday night. In fairness she has point. Why does she get forced to do something that’s causing her so much anguish when I’m already home educating the rest of the family?

With each month that passes, Clara becomes more difficult. It’s hard to witness her meltdowns, which are getting more and more violent.

“You’re so stupid!”

Screamed 7yo Polly, before she threw the hairbrush directly at me. It landed on my arm and bloody hurt. The violence on display from this child frightens me. I find my mind drifting off five, ten years, and wondering what she’ll be doing by then. Polly’s challenging behaviour is here to stay, and we simply have to adapt our own accordingly. Which is easier said than done. 

we must never lose hope When you give everything you have to your kids, and they treat you as if you’re the enemy. Well, it hurts doesn’t it?

To say that April was tough going would be a monumental understatement. It can be hard holding on to hope when the chips are down, and the knocks keep coming. I tell myself that we’ve been in dark places before, and have made progress, but my positivity is waning.   

This year, I’ve had days that terrify me. The behaviour displayed by these three has upset me, worried me, shocked me and disgusted me in equal measure. Watching them treat each other like crap is beyond difficult.

The abuse hurled at me is easier to cope with, but some times the only option I have is to lock myself in the bathroom for five minutes. To try and talk sense into myself. To try and quieten down my internal monologue so it doesn’t drive me insane.

Some days I’m so livid that I can’t stop myself from reacting. Even as the words are tumbling out of my mouth I know I’d be much better off keeping it closed. We’ll never be able to take these words back, I think to myself once it’s too late. When the tempers have been lost, and crisis plans have been chucked out the window.

Same old crap, different week, different month, different year. Only the kids are bigger now. They’re going to remember these days.

Most of my own childhood was so miserable I have no memories before I was eight years old. I’ve blocked them out – clearly a defense mechanism I learnt at a very young age. It kills me to think my own children will be doing the same. That their own sadness will come back to haunt them the way mine does.

I do so desperately hope not. 

They say kids are resilient, but mine aren’t.

They feel every teeny tiny knock, and take it personally. They don’t forget a single detail, and will hold you to account on everything you say. Again, this isn’t a bad thing as a parent, but it’s devastating when friends say they’ll do something and don’t. Try explaining to an autistic child that sometimes people say things they don’t mean.

“But why did they invite me for a playdate/sleepover/party when they didn’t want me to come?”

Cue meltdown central, and an hour long fallout. 

In the last two years, I’ve witnessed from near and afar, ten relationship breakdowns. Only two have survived and are coming out the other end. Mostly they’ve led to divorce – bitter, twisted, horrible divorce. Almost every story is the same. Irreconcilable differences between the grown ups, but the kids are just fine.

Those kids fly the flag for the phrase ‘children are resilient’. The fact is they enjoy the company of their parents much more now that they aren’t living under the same roof. They get better quality time, and benefit from a happier mum and dad. When my friends were ready to move on, they found new Beau’s who are nothing like their former partners. They themselves are worlds happier, and their only regret is clinging onto their dying relationships for as long as they did.

I know it’s not been easy for them. Every one has been to hell and back, but oh how I’ve envied their fresh starts.

The separation time they get from their kids helps to make them better mums. The mistakes they made with their exes has led to wonderful relationships this time around. Those who aren’t ready to settle down are having the most amount of fun.  

Living life to the max. The way I used to.

Before autism, chronic stress, sibling in-fighting and sleep deprivation so severe that my body doesn’t know what to do with itself if it gets more than five straight hours.  

No Matter How Dark Our Days Get We Must Never Lose Hope There’s a romantic idea of autism that litters the internet. Of how it creates special bonds between brothers and sisters. I’m sure in some family’s this is true. Once the neuro typical siblings get their heads around the autism, and start to understand that their brother or sister is different. They can become another advocate, and help other kids understand autism too. How wonderful this dynamic would be.

Perhaps it’s simply a case of my kids being too young to understand. Or perhaps, the option I’m leaning towards, all three are on the spectrum. Another can of worms waiting to pop open.

So much time has been, and continues to be, invested in our diagnosed eldest daughter. Meanwhile the other two aren’t always getting what they need. To help them become resilient and fully functioning.

And happy.

We can only do our best, and when all is said and done, we can only hope that it was enough.

I can’t tell you how much it breaks my heart to hear Freddy say that he’s sad but doesn’t know why. Or to watch Clara’s hands flare back up with stress eczema the week after the Easter holidays.

I honestly don’t know what the future holds for my little family, but I do know that I’m some times part of the problem. Happiness begins by taking control over the situation in front of me, and some days I don’t seem capable of doing that. Some days I lose hope that there are brighter days around the corner. 

When the chips are continuously down, it’s hard to imagine a happier time. Maybe I expect too much, and should just feel grateful to get through the days? Trouble is, I’m fed up with merely surviving. I want to thrive, and flourish. More importantly I want my children to.

It’s not all doom and gloom, one look at my one line a day diary confirms that. There are some wonderful memory-making moments thrown in. There just aren’t enough of them to get me through the exceptionally challenging days without feeling like an epic failure.

“I wish I never saw the sunshine, then maybe I wouldn’t mind the rain.” the fabulous Beth Orton sings in one of her many beautiful songs.

So this is for anyone else living in perpetual limbo. Not knowing how they’re going to cope with the next set back that comes their way.

What will be will be, right?

I’m sure you’re doing a marvellous job, even if you can’t see it.

Take care of you, and make sure you put your own oxygen mask on first.

Above all else, don’t lose hope. Brighter days absolutely must be around the corner.

 

#tbt to four years ago, and one of my very favorite photos of Miss. Polly. 💖 Back to a much simpler time, which I remember thinking was super hard work, but in hindsight wasn’t a patch on now. 💖 Back then I had a hunch that there was more than met the eye when it came to my strong willed challenging child. 💖 Two years, many sleepless nights and a lot of heartache later, Polly was diagnosed with high functioning #autism. 💖 Fast forward another two years, and I find myself wondering when the magic turning point will be. It felt like it was in sight a couple of months ago, but a series of unfortunate events have triggered off possibly our worst ever cycle. 💖 Violence, verbal abuse, refusal to learn, not listening to a word I say. I know she’s hurting, but my word it’s hard to rise above it some days. 💖 I’m the adult, and should have full control over my emotions. But on days like today I look in the mirror and see the person I’ve tried so desperately not to become. 💖 And it breaks my heart. Teeny tiny piece, by teeny tiny piece. Let’s just hope tomorrow is a better day.

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chronic stressYesterday was International Day of Happiness. You would never have known in my house, it was more like yet another day of chronic stress.

This is doubly ironic given how my last blog was all about how well we are doing. How it feels like we’ve turned an elusive corner with our 7yo autistic daughter Polly, and can finally see some light at the end of the long dark tunnel.

Not that we’ve had a break from challenging children, oh no. 5yo Clara has seen to it that there has been no respite in that department. Not that it’s her fault, I can’t blame the poor kid for hating school and demanding to know why she gets ‘sent away’ (her words) when her sister doesn’t.

Two steps forward, three steps back

As we were doing so well, Polly had a few days at her grandparents last week. She came home out of sorts, which hubby and I were fully expecting. The change in routine, eating food she isn’t able to tolerate and having undivided attention was always going to mean a thud back to earth upon returning. We were finally getting somewhere when she had an unfortunate incident with a neighbour’s dog. It’s only a puppy, not even a year old, but Polly doesn’t enjoy jumpy over-zealous animals.

Regardless of whether the dog was ‘just being friendly’ or not (the owners words), it knocked her flying and she was terrified. She also grazed her elbow and knee quite badly, which caused her real pain. Every time we change the plasters it reminds her of the scare she’s just had. Every time she went out to play over the weekend she was worried the dog was going to be there and would chase her. Then she was disappointed with her friends, because rather than support her they made fun of the fact that she was scared of a friendly, adorable little dog.

This is where Polly’s autism comes shining through her mask

We had a tough weekend, not just because Polly was anxious about the dog. Chuck into the mix a sad Clara and a cough-ridden 3yo Freddy who is hardly sleeping, and you’ve got a recipe for disaster on your hands.

This continued into yesterday. The girls fought all morning, and Clara went to school in floods of tears because her sister was calling her stupid, something she hasn’t done for months. She was pinching her brother, and taking his toys. She refused to do any learning, and the meltdown that then ensued because I said she couldn’t just vanish into the ether with her tablet was off the chart.

chronic stressKicking and hitting and screaming in my face wasn’t enough. At one point she threw a sharp knife in my general direction. She crossed the line, and my inner calm vanished.

Count to ten, they say. Leave the room if you have to, they say. Deep breaths, meditate, they say. Don’t take it personally, they say. You’re tough mama and you’ve got this, they say. Have a drink, they say (not going to do that on a Monday morning). 

When you live in a state of chronic stress      

Last night I collapsed in a heap in my bed directly after the kids fell asleep. I was spent, good for precisely nothing. Today is a new day I told myself. Today is a new day my husband told me. I was full of resolve and my positive head was on my shoulders.

Then Polly got told no, for something very minor, and her first response was to scream in my face and kick me in the shin.

And I flipped.  

I went right back to yesterday. I started sweating profusely, and my head felt like it had cotton wool in it.

“I am not doing this again!” I yelled. Bad mama.

Thankfully hubby is working from home, so I left him downstairs with the kids while I came up here to write this. Because sometimes, this blog is better therapy than trying to meditate.

Sometimes, getting the words out of my head make them less toxic. Sometimes, it’s just what a I need to calm me down and get me back to happy.

Thanks for reading, and here’s a hug for anyone who needs it!

 

Today’s been super hard. I started my day on a sleep deficit, after being up for hours in the middle of the night with F. The girls have been cranky to put it mildly. All three have spent the day on a knife edge, kicking off at the slightest thing. Tears on the way to the park, more tears on the way home. It’s been exhausting, and my head is pounding. 💖 I used to pride myself on my together-ness, but days like today push me to my limits limits. My mind starts drifting off into a bleak future, and I think f***, if I can’t cope now what will it be like in a few years time? I start worrying that the foundations of my marriage aren’t strong enough to take the strain of this pressure cooker environment we call life. 💖 Then I remember to breathe. And I remember that the days are long but the years are short. I count my blessings, and think of the empty armed mama’s I know, who’d sacrifice a limb for what I have. And I remember that I’m made of tough stuff, but I’m not a robot. 💖 Is parenting the toughest gig of all? I’m starting to think that yes indeed it is. We can only do our best, and hopefully our best will be good enough.

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Our Kindness Challenge Advent Calendar to Countdown to ChristmasWe’ve never done chocolate advent calendars here, and our elf on the shelf experience was an absolute nightmare. Seriously, it was so bad that she got sold on eBay last week. This year we’re giving something completely different a go, and the children will have kindness challenges to complete each day.   

I’ve already decided that my word for 2017 is going to be kindness. For a multitude of reasons, but ultimately because we need more of it in the world, and especially so in my little family.

It will be great for the kids to consciously think about doing nice things for other people. I’m hoping that all the extra kindness will lead to gratitude, happiness and a jollier family in general going into the new year. We’ve wasted far too much time of late being stressed out, and life’s too short to be living like this.

Our kindness challenge list

1st: I’ve signed us up for the Met Police Christmas Tree Project, which means buying a gift for a local child who might not receive one otherwise. We have been assigned two girls aged 12 and 16, and a boy aged 14. Our first challenge will be sourcing their presents, which need to be wrapped and taken to our local police station by the 9th.

2nd: Make cards for faraway friends, and take to the post office.

Our Kindness Challenge Advent Calendar to Countdown to Christmas3rd: Be super quiet first thing, to make sure Daddy gets some extra sleep.

4th: Be super quiet first thing, to make sure Mummy gets some extra sleep.

5th: Make salt dough tree decorations, and extras for friends we are seeing before Xmas for their trees.

6th: Make a nice card and some drawings to send to Nana in her care home.

7th: Have a clear out and donate all the stuff that doesn’t get worn or played with anymore.

8th: Sit for ten minutes in a circle, and tell each other the things we are grateful for.

9th: Make cards and wrapping paper for gifts for friends that we’re seeing for lunch on Saturday.

10th: Be super quiet first thing, to make sure Daddy gets some extra sleep.  

11th: Be super quiet first thing, to make sure Mummy gets some extra sleep. 

12th: Help mummy put the photos she’s had printed into albums.

13th: Think of three reasons why we love each member of the family.  

14th: Freddy gets to choose a Xmas movie to watch, without any fuss from his sisters. 

Our Kindness Challenge Advent Calendar to Countdown to Christmas15th: Clara gets to choose a Xmas movie to watch.

16th: Polly gets to choose a Xmas movie to watch.

17th: Be super quiet first thing, to make sure Mummy gets some extra sleep.  

18th: Be super quiet first thing, to make sure Daddy gets some extra sleep. 

19th: Write a story or draw a picture of a happy memory from the year, and give it to another member of the family.

20th: Make cards and gifts for Clara’s teachers at school. 

21st: Make a video to send to Grandad George. 

22nd: Make gingerbread cookies for our neighbours.  

23rd: Wrap gifts for the family to give to them on Boxing Day.

24th: Go through the 2016 memory jar, and relive our happiest experiences from the year.

kindness challenge advent calendar

The Trouble With AutismWe’ve had a crap week, they happen to everyone, and once you have kids you come to expect them every now and then. The trouble with autism is that your definition of a good week is what most other families would consider to be a crap one.

When you’re an autism family, there is no capacity for extra crap on top of the usual crap. Head lice and worms, and other people’s minor inconveniences might just push you over the edge. 

super crap week is just too much, because everyone is ragged and running on empty already. Exhausted from the night wake ups and the 5am starts.

You’re at the end of your tether come 9am. By which point you’ve already drunk your ideal coffee quota and are pouring yourself a third cup.

As an autism parent, every ounce of strength goes into meltdown aversion, making sure potential triggers are kept to an absolute minimum. When a meltdown comes, every ounce of strength goes into damage limitation and ensuring that everybody is safe.

You’ve researched and consumed knowledge that might help your child to the point of making your head feel like it will explode. It goes without saying that you’re their biggest advocate, always have been and always will be.  

My house rocking the just burgled look... again!

My house rocking the just burgled look… again!

Although you know exactly what you should and shouldn’t be doing, you still find yourself overly emotional far too often. Either in a rage or floods of tired tears, because putting out the fires day in day out drains the life from you.

People tell you they understand, but continuously say things that leave you feeling that they just don’t get it. They mean well, you know they do, but their throw away comments make you sad.

The trouble with autism is that no one could ever prepare you for it. It has hit you with force, like a big mack truck. It is relentless, and knows no boundaries.

The trouble with autism is that it has the ability to make you feel like a superhero one minute, and a complete failure the next. Ultimately autism doesn’t care one iota for your fragile state of mind.

The trouble with autism is that one wrong move and the whole house of cards comes tumbling down!

Open Letter to Autism Mama

BTBY stack of bookson-autism-and-hard-work-finally-paying-off