Category: Parenting (page 1 of 3)

Hey, Doctor – Here’s some advice for you about my child.


Recently we ended up in the ER with some unexplained pain for Sno and I have to say I was completely gobsmacked with the complete and utter lack of understanding surrounding autism from some of the health professionals. So I figured I’d break it down. I am well aware that there isn’t always ample time to put all these steps into place but more often than not, it pays to be mindful of them.

Here’s my list of tips for health professionals on how to best support patients who are autistic.

  1. Introduce yourself.  My child doesn’t know who you are, so a simple way of making her feel at ease is simply by introducing yourself. Don’t just come into the room and start questioning.
  2. Connect with my child first. Before you need to start any medical procedures or begin talking in medical jargon – make an effort to connect with my child and build trust. Perhaps you could ask how old they are, comment on their cool shoes or even show them your cool pen – it doesn’t matter what, but take a little moment or two, it helps my child feel at ease.
  3. Explain to my child what you need to do before you do it. Fear stems from lack of knowledge or understanding; hospitals can be scary places for children, autistic or not. But when you explain what instruments are for and how they work, the fear dissipates and you’re more than likely going to have a willing patient, rather than a scared and closed off one.
  4. Ask for their permission before touching their body. This again applies to all patients. Please do not touch my child’s body without their consent. Absolutely do not pull down their clothing without their permission.
  5. Don’t talk about my child with them in the room, as if they’re not there and can’t hear you. Asking me questions about my child that they could probably answer themselves just makes my child feel invisible. They deserve more respect than that. And finally;
  6. Get me onside. I don’t care how many years you’ve been in the medical profession or what kind of awesome doctor you are – none of that matters if you can’t treat my child with respect. Autistic children are complex and their issues may not always be clear to the outside looking in. So, if you want to help my child, you’ll need to listen to them and me. I know my child better than anyone else does, so you would do well to take my lead with how you approach her.

Small adjustments make the greatest impact. So maybe consider dimming the lights, turn the music off and taking a moment or two, if you can. Believe me when I say that a calmer child is more likely to cooperate and be helped by people they don’t know, so even though all of this stuff may seem like a lot of “work”, it’s worth it. Let’s all work together, hey? We all want the same outcome after all- a happy, healthy child.

 

Toilet Door Affirmations.

Some people I guess would pen me as a hippie, due to the fact that I haven’t shaved in over 8 years, the fact that I birth my babies at home and still breastfeed my almost-3 year old daughter. Meh. Call me what you will, truthfully I don’t give a shit because I know who I am. One thing I definitely believe myself to be is a person who likes to look outside the box, and question everything.. and I am proud to be a woman with an open mind.

I believe fiercely in the power of thought. This comes into play with how we as people interact with each other, how we regard ourselves and our individual capabilities, how we learn, how we labour and birth, how we achieve, how we overcome obstacles and how we ready ourselves for new challenges.

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Self-talk in particular is powerful. It is the lines or phrases  we tell ourselves in times of challenge. You know; when you say “I’m going to have a crap day” you usually do, and when you tell yourself that something is too hard – you often get defeated? Yeah. That sort of thing. So when I hear my girls saying things like “I can’t do this” or “This is too scary” or “I’ll never be able to do that” I am quick to help re-frame their self-talk. Changing the phrases into “This is tricky, but I will get it” or “I will get the hang of this with practise” may seem like a simple thing to do yet can have lasting impact.

Where I am going with this? I wanted to tell you about something I do for my girls. I print out affirmations for them and stick them on the back of the toilet door. Why? Because I figure it’s a place they’re still and quiet for a reasonable amount of time every day, and I like to think that the lines of strength and courage they read may translate into action, cancelling out other negative ones. I am hoping it will gently alter any negative self-talk they may have.

On the back of our toilet door are words which dispel the power of fear, re-frame challenges and hopefully impart strength and courage to the minds of those who read them.

Meh. Maybe it’s crazy and pointless, but I figure it can’t hurt. And I also figure with all the inane, degrading shit that penetrates subliminally from the media into the minds of our young girls, they’re going to need any positive self-armoury they can muster – and that counts for the messages they send to themselves, too.

 

Dear Daughter as you near your 10th birthday,

I see you growing up right before my very eyes. Your body is changing and you’re noticing every single occurrence, both welcoming it with excitement and feeling overwhelmed from it, because, really, you’re still so very young.

I watch as you come and wrap your arms around me awkwardly, all legs and arms.. and then no sooner, you’re running off to your room, slamming the door behind you because you want to be left alone.

I know you’re in this place of in-between. I can’t imagine how frustrated and confused you feel. But I want you to know you’re not alone.

We argued this morning, we both said words we didn’t mean and although we have both since apologised and made up, it’s still lingering with me. I don’t want to be someone you can’t talk to, but also, if you don’t want to talk – that’s okay. You don’t have to talk. Silence is good with me, if it’s with you.

I’m in a place of watching you go through changes hormonally that seem totally out of your grasp, and I just want to hold you. I want to tell you it’s okay. I want to tell you that it gets easier.. but I don’t know if it does. Maybe it’s not that being a woman gets easier or if it’s just that we become stronger. Because we learn to embrace our innate feminine power and all that comes with it. Slowly we learn to surrender to the ebb and flow rather than fight against it.

But daughter, I can see why you’re fighting against it. It’s new and relatively unknown, and being a woman isn’t easy. Becoming one is even harder. I can understand why you’re fiercely trying to hold onto your childlike innocence, I can see that you don’t want to grow up.

Here’s the thing, though. No matter how old you are, no matter how many moody outbursts you have or how much you try to push me away – I will always be here. My love for you is not conditional – you may outgrow your clothes but you’ll never ever outgrow me. I will always have time for you, I will always make time for you and I will always be in your corner.

I know this shit is tough. And I’m more than willing to let you live your life, your way, as you learn to navigate it independently. But nothing you can ever do will make me not love you, and there will never be a time I won’t be your constant.

Always,

Mama.

Real-world social skill learning with my daughter.

There’s this thing I have been doing with Sno for a few years now. I take her out, just the two of us – and we go and eat lunch somewhere. She picks the location (usually Grill’d, if you’re wondering) but the condition is: she needs to order her own food, so she can practise her social skills.  It became obvious to me a while ago that despite there being lessons on english, geography and art etc within school – there aren’t often social skills lessons. And this is an area that autistic peeps, just like my amazing daughter – could use a little guidance with.

So we practise, together. I gently extend her comfort zones and empower her to use her voice and be heard and ask for things she needs. Something as simple as asking for a serviette or sauce may be a simple thing for most people, but it can be challenging for Sno. So I encourage her lovingly to find her voice.

 


While we are waiting for our food, and eating, we play some little games. Games like: paying attention to the body language of others – what does she think they may be doing/feeling? We enjoy people watching together and I encourage her to guess the stories and feelings of some people we see. Are they happy? Sad? Bored? Impatient? What makes her think that?

After lunch we may go and do a little shopping and I’ll give her my list and encourage her to problem solve and stay on task in busy shopping centres, which she finds tricky but gets better at each time.  If we encounter a problem like a product being out of stock,  or not knowing where to find something – I empower her to ask for help from a customer service officer. We also have discussions over “what-ifs” – what if she gets lost and can’t find me in the shops, what can she do? What if a stranger tried to entice her to go and walk with them, what can she do? What if she accidentally broke an item in the shop, what should she do? We talk about where to find toilets, where to get some water if she needs it. Simple, seemingly obvious stuff.

So why do I do this? Because I’m trying to empower my daughter and give her skills for independence. She is an amazingly intelligent girl, 4 years ahead of her peers academically – but this social stuff, it doesn’t come easily to her. Together on our outings we celebrate her successes and when things don’t go as planned, we work out how we can remedy them next time. So many times she will tell me that she “can’t” do something (like order sushi, for example) but with a little gentle coaching and patience, she does – and she’s super proud. As soon as we are home she writes her achievements in her “I Did It” book, and the list of stuff is getting pretty long, let me tell you.

As she nears the age of ten I am watching her come out of her shell a little more everyday and independently problem solve with initiative, and it makes me so proud. Because I know this shit is hard for her. But I believe her, I’m in her corner – championing her along as she does hard things, believing in her… unwavering.

My children don’t always have to like me.

Ah man, four kids and two adults. My husband and I are totally outnumbered now and funnily enough it’s taken me this long to realise that it’s unrealistic for me to expect that all four girls of ours will be happy all the time. It’s an insane juggling act at times, semblance akin to stuffing an octopus inside a netted bag – a lot of the times: completely pointless.

 

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Don’t get me wrong, we’ll do our best to provide them with positive experiences, opportunities to learn and grow. They have clothes they need, enough toys to amuse them (but not a lot, either) and they’re safe, in a house that keeps them sheltered and warm. They attend fantastic kindergarten and schools and they have some great friends.

But sometimes life is gonna be hard. Some days are gonna be shit, and they’re not gonna be happy – but that’s OK. Sometimes they’re really not going to like what I have to say. But you know.. That’s life. It isn’t my job to make my girls happy all the time. They need to learn how to form resilience and how to bounce. They need to be okay with feeling sad, frustrated and even mad sometimes – because that’s how they learn.

They need to know that even though they don’t like what I have to say, that I’ll keep loving them through it all.

If I’m pre-empting every single encounter in their lives, buffering every single fall and handing out solutions for every single problem they come across in their lives – they aren’t learning. They aren’t growing, they aren’t developing and maturing. It’s draining and exhausting for me and it’s unhealthy for them.

Because my children are smart. They’re capable, they’re able. They can work some stuff out on their own, through trial and error and they can learn that failing sometimes is just the way it goes. The awesome, important stuff is about picking yourself up, dusting off and giving it another go. It’s about using this experience as a framework of how to do things differently next time.

I’ll be there to guide them and nurture them through it – but I can’t prevent every upset, and I shouldn’t either. Because that’s childhood: growing, learning. And I’m not their friend, I’m their parent.

 

 

 

My Child Is Not Giving Me a Hard Time; My Child Is Having a Hard Time.

One thing I find really hard as a woman living with an autistic husband, and having two autistic girls is the conscious effort it takes on my behalf not to get emotionally involved and take stuff personally.

You know what I’m talking about.

When you have to listen to your child scream for hours upon hours upon hours.

When you have to listen to the verbal tirade that comes from them when they’re not coping with whatever is going on in their life.

When you spend hours out of every day trying to resolve situations, come up with strategies to enable them to cope better, attend meetings with their support team, constantly read and research – when you do all those things and somehow something else comes up as a problem, it’s really hard.

When you attend numerous appointments with professionals and yet the tools aren’t being utilised.

When you’re literally scouring for any little suggestion that may help, every single day.

It’s really hard to not feel like you’re failing as a parent. This shit shouldn’t be this hard to cope with, should it? Does it really have to feel like a constant and I mean C O N S T A N T effort to just keep your head above the water?

It feels that way for me often.

But one thing I am slowly slowly learning is that there is only so much I can do. My girls are on their own journeys as people, and so is my husband. Sometimes loving someone doesn’t necessarily mean fixing their struggles or helping them – it means simply being there for them. Listening to them. Encouraging them. Loving them through it. Allowing them to ride their own waves and being there for them when they crash underneath but inevitably resurface.

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When you love someone, you don’t want to see them in pain. It’s hard to see the people you love struggle, fail, flounder and hurt. It’s so very hard to see them overwhelmed and scared.

So it’s really helping me to remember that I’m human. I’m not super-human and I shouldn’t endeavour to be. There are limits on what I can offer in terms of support. Love never runs out and is unconditional but at some point, the buck stops. My girls (and my husband) need to work through their own struggles and it’s okay if I can’t find solutions sometimes.

Because I can’t give on an empty cup. And they are their own people, and sometimes they need to work stuff out in their own way in their own timing.

When the people I love are struggling and perhaps taking it out on me; it’s not about me. It’s their stuff. And sure, it’s not really okay. But they’re learning and I can distance myself emotionally, untangle myself and breathe.

They’re not “giving me” a hard time, they’re having a hard time.

Removing the intent helps me to feel less flat and personally involved or attacked. My girls trust me, they love me, they know that they can completely fall apart around me and they’ll be OK. They know that I’ll be there to help pick up the pieces. And I will. Every single time. So I’m trying really hard to remember this on the hard days when I feel like I exist merely to be their emotional punching bag.

 

Spelling Sticks; Early Literacy Idea.

Wilding is totally into reading and learning letters. Since about the age of 3 she has been able to easily write out her full name and now at 4.5 she can spell and sound out many many four letter words. She loves experimenting with letters and loves to play the letter game while in the car where she comes up with words she sees from the letter of the alphabet I choose.

 

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Building on her interest and wanting to set up a simple activity for her, I wrote some words on paddle pop sticks for her and gave her a handful of sticky foam letters. She set about copying the words, sounding out the letters and then she also came up with her own! It kept her amused for a while and also worked on her fine motor strengthening, too.

As far as encouraging literacy learning goes, we purchased an alphabet chart from Officeworks too which has been displayed prominently in our house and as much as I hate plastic crap.. this LeapFrog magnet game has helped with her early development of phonics, too.

I think we’ll get out our story stones tomorrow..

It’s Okay For You To Fall Apart.

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Because I’m here and I’ll hold you in my arms.

It’s okay for you to feel confused,

Because I can  help you to make sense of it all.

It’s okay for you to feel overwhelmed;

Because I’ll safely cocoon you while you recalibrate.

It’s okay to not know how to begin again,

Because there’s more than one way and it just requires one step.

It’s okay to feel scared,

Because I know you have courage beyond measure.

It’s okay to not know who to be;

Because I can see you for who you are.

It’s okay to feel mad;

Because I understand that you’re just seeking connection.

It’s okay for you you to just want to shut everyone out;

Because I know we all need a break sometimes.

It’s okay for you to walk your own path your own way;

Because normal is boring anyway.

It’s okay for you to make mistakes;

Because learning can be tricky and there’s no one way to do it.

It’s okay for you to to feel a bit of a mess,

Because the broken fragments allow the light to get through.

And it’s perfectly okay for you to unload to me and tell me all your problems;

Because the love I have for you is unconditional and nothing will ever make me give up on you.

 

Parenting Is So Glamourous {& So Bullshit}.

I’ve had the kind of week that has been so filled with shit, vomit and laundry that I kind of don’t even know where to begin with saying anything other than it’s been well.. shit.

 

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My husband (sorry who is this man again? I vaguely recollect him despite not actually having slept beside him all week as he kipped on the couch due to being on gastro-watch) and I have been parrallel-parenting: he’ll be managing a few of the girls while I am dealing with the others or attempting to get on top of more washing; in between catching vomit and wiping up splattered toilet bowls. Having to reach around and hold a bucket of vomit whilst being the passenger in a car driving on a highway was a highlight, as was stopping four times on the way home to empty only for her to purge again. and again. and again. and again. Oh and after a few days of reprieve, trying to teach a 2 year old how to spew into a bowl was a pointless endeavour by the way; I ended up giving up – stripping her off, turning up the heater and letting her hurl into a fresh towel each time the poor poppet. Ugh.. sometimes parenting is absolutely revolting. Okay, actually a lot more than we all seem to let on I think. At least our two bigs know how to aim and project into a bowl or a toilet. BLEURGH.

It’s been pretty hard not to get caught up with melancholy over the seemingly endless rounds of illness that have been circulating our family this past month. The sooner we get over one thing, another child brings something else home and then we are managing that. I could pretty much sum up my life in four words from this last week: laundry, dishes, sick and cooking. Actually.. isn’t that just every week?!

It’s pretty hard not to become a cynical sarcastic snark when this sort of cycle just keeps perpetuating. {Oops actually I think that happened a long while ago already…} And it’s almost the end of term and my girls are tired and so am I. They’re ready for a break in the school/home/school/home deal and I wish I could say that I look forward to holidays as they’re relaxing but no.. mostly they just end up being filled with many meltdowns thanks to the change in routine despite my best efforts to create one, and, well.. constant bloody mess.
Thankfully Cj has some time off work during them so we will attempt to do cliched family things like go for walks together as a family and stuff but truthfully I’ll just be taking the moments wherever I can to sneak off and run ‘errands’ that involve hot chips and a book at my favourite cafe, after op-shopping alone – that is. Totally essential and important of course.

I hope your darling children who I bet are no doubt tired as well, manage the next few weeks of term as best as they can. I know it’s hardcore at the moment. And I’m hoping that you’re taking time out for yourself; even if that means exaggerating the truth sometimes – because that’s okay. If anything I’ll be thankful for the time spent out of the car and more spent in open spaces; space to clear our heads and move our bodies more organically.

Somehow, beach therapy always helps me a great deal and if it offers a wider distance between my children howling at each other and offers less crap for them to spread throughout the house and fight over.. then we’re already winning.

How Do I Feel? Like I’m Being Split In Two.

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I took this photo of myself as I sat in the passenger side seat of our car this morning; while our daughter screamed. My husband was attempting to help her navigate the current problem she was experiencing and help her, and I sat there with my head pushing into my hand – staring out the window, numb.

Things have been hard lately. I am pretty sure I’ve been saying that for about 3 years if I’m totally honest. Having an autistic husband and two autistic girls puts me in the position of being able to educate, inform and raise acceptance. And I will tell you that autism expands my world and it broadens my thinking, because it does. But what I won’t tell you always is that it feels like I’m being pulled in diagonally opposite directions. That it feels like I am trying to be broken from two directions at the same time. I won’t tell you this though mostly because then I have to go into more detail and explain and most of the time – I just simply have no energy.

The pulling in two directions isn’t my child versus me, no. It’s not some battle I am having with my child. It’s all me actually. One half of me is giving up, throwing my hands into the air with utter despair and shouting “I DON’T KNOW WHAT TO DO! I GIVE UP!”. This half of me feels beaten, sad, emotionally void with nothing left to give. The other half of me however is the perky little birdie on my shoulder,  annoying as all hell. It’s telling me I can keep trying, that it’s okay and that things will get better.

It’s a constant push/pull.   C O N S T A NT . 

It’s very hard for me lately to feel anything but desolate isolation and utter defeat. I’m pretty sure my child has screamed about 10 hours this week, in total. That’s over five days. She screams and flops onto the floor rolling around with her hands in her ears, I walk over & scoop her up in my arms and place her in her room (where she has her tools to self-regulate) to stop my other children being scared and frightened by her behaviour, she inevitably comes out again and we repeat the cycle until she finally calms herself and we can then problem solve together. All the while I am having to remain calm and keep myself together because I know she isn’t doing this by choice and I don’t need to burden her with my hurt or exasperation which she isn’t causing on purpose or with intent.

I feel beaten. I feel broken. I feel like I should be able to help her but yet she’s still screaming. We have small moments of calm but mostly it’s us trying to fumble our way through our lives with a tiny sense of normality and purpose and direction amidst all the chaos. And when there is calm, we are often pre-empting the next challenge – too scared to enjoy it. This isn’t even taking into account my other children’s needs that demand to be met or that of my own; or even that of my marriage.

I can so hear she’s struggling and I am constantly trying alongside my husband and our support team to find ways to make her life easier, and enable her to help herself and cope better. I don’t want to see her so upset, confused and overwhelmed. But I would be lying if I said that sometimes it gets to the point of irrationally not caring anymore and I fantasise about driving off. That’s when the stupid annoying birdie on my shoulder tells me to dig deeper, have a break and keep trying. And I do.

I’ve got to hope that things will get better. I know she’s young and she’ll learn how to self-regulate and won’t constantly dump all her problems in my lap. And I know some days will be absolutely crap and for me, sometimes it’s easier just to feel the feels and honour them… and then get back on track.

I feel like some days I am the most boring person ever. Complaining about how hard our lives are, how tired we are, how little time my husband and I actually get together and then when we do it’s mostly sitting in silence and not talking because we are so tired and run down from constantly talking, constantly trying to problem solve and come up with ideas that may help.  I feel frail and fragile, like a spider’s web caught out in a storm with only remnants remaining afterwards but desperately still clinging on to what grounds me.

And then other days I have a fire in my belly, a rhythm to my step and I pound my way through my day leaving marked tracks so others can follow. In those days I am a warrior woman, fighting for my child, pushing as her advocate and making myself known. I won’t give up and I won’t be quiet.

But god, would I love some nothing.

 

 

 

 

 

 

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