Autism. Where I Stand.

I’m not one who courts controversy. I have strong opinions, and will often get fired up about things, just ask my husband, or online bestie Lisa. I often write a ranty blog post in my head whilst lying in bed at night, even going so far as to put notes in my phone, so I don’t forget.

Then by morning, I’ve calmed down a bit. Confrontation is not in my nature. Truth be told I’ve had enough drama in my life, I don’t need to be inviting it onto my blog by arguing conflicting views on controversial issues.

But sometimes, enough is enough. Today I got pushed to a point where I was literally in tears. All those fears, and that guilt that parents of children with ‘slightly left of the norm’ needs are constantly battling, were brought to the surface. By a person who I don’t even know. A person with no medical background, a person who doesn’t know me, or my child. Maybe they were just the tip of the iceberg? The tip of an already very very fragile iceberg.

They made a claim that anti-depressants taken during pregnancy cause autism, amongst other things. Those that are regular readers here, will know that I have been treated by medication for severe clinical depression for over ten years now. I continued to take this medication whilst I was pregnant, because my Obstetrician told me it was safe, and it would be detrimental to my health, and possibly my baby, to stop. I also did my own research, and everything I read, (all backed by science) agreed that the particular medication I was on was safe in pregnancy.

It shocked me today, to read these claims, that THIS COULD BE MY FAULT. And you know why it took me all of 15 seconds to break down in tears, and start madly googling for evidence? Because not a day has gone by, since Milla was diagnosed, that I have not blamed myself for something relating to Milla’s autism. Was this my fault? Did I do something wrong during pregnancy? Did I not do something that I should of? Am I feeding her the right food? Am I choosing the right therapies? Is this the right kinder to send her to? The right school? Should I have said that, should I have handled this situation differently? Should have, Could have, Would have… I don’t think that this sense of guilt will ever completely leave me. I think I am destined to always question everything, second guess every decision I make.

So all I have to hold on to, to ground me, are the facts.

FACT- After speaking to my doctor today, I can tell you that that taking anti-depressants whilst pregnant does not cause autism.

FACT- There is no medical or scientific evidence that the chemicals in immunisations cause autism.

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FACT- I have been diagnosed with severe clinical depression. I have a family history of mental illness, and post-natal psychosis. Un-medicated, I would be a danger to myself, and in turn, any child I may be carrying. Even if there was a link between anti-depressants and autism, it would have been dangerous and irresponsible for me to have stopped.

FACT- Even if there was evidence that linked immunisations to autism, I would still choose to immunise my child.

FACT- My daughter is an amazing, beautiful, intelligent, hilarious little lady. She just thinks differently to some people. She learns differently to some people. When you tell me that you don’t immunise your child because you believe there is a risk of autism, you are telling me that you would rather risk your child’s health, risk your child’s life, than risk the possibility that your child could end up like mine.

So that’s where I stand. Believe me when I say that I have enough guilt and anxiety to deal with on a day to day basis, without worrying about conspiracy theories, and the entire medical industry lying to me to protect the pharmaceutical companies.

My daughter has autism. I can’t change that. Even knowing what ’caused’ it, wont change the fact that she has it. She’s a pretty amazing kid. She makes me laugh every day, and teaches me far more than I teach her. So before you argue with me about vaccines or anti-depressants, or whatever other possibly life-saving medication you believe may have caused her autism, maybe you should meet her? Get to know her before you tell me you’d risk her life to make sure she was ‘normal’.

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A is for Anxiety.

A is for Anxiety. For her and for me.

It is a strange world our little family of three have been living in, these past few months. The anxiety that has always been underlying Milla’s behaviour, has taken over, to the point where she is in a constant state of ‘fight or flight’.

Her fear of traffic has become so extreme, that we no longer leave the house during the week, except for her appointments and classes. I take her in the pram, as she becomes so blinded by panic that she will just wildly run, and I’m terrified she will run out on the road. Even in the pram, she recoils in fear when we have to cross a road; screaming and crying in fright.

We can no longer use public toilets, due to her fear of hand-dryers. We can’t get her to come in to the disabled toilets or parents room, even when we assure her that no one will use the hand-dryer. If we try and carry her in to show her, she will scream and cry.

Walking from the car to the shopping centre is an ordeal, she jumps a foot whenever a car drives past, and the mere sight of a truck will have her dissolving into tears.

Home should be her safe place, but this is where her anxiety manifests fear from the strangest of places.

The ceilings make her anxious. She will keep staring up at them, growing more and more uneasy, until she has to leave the room. If we try and coax her back in, reassure her that everything is fine, and that there is nothing on the ceiling, she will meltdown, crying and shouting over and over again, NO NO NO. At first it was just in the play room, so I came up with ideas for decorating the ceiling, but it soon spread to other rooms in the house; the lounge, the kitchen, the dining room. There is no explanation as to why she is afraid, and she can’t verbalise her reasons to us. Sometimes sticking pictures up on the ceiling helps, until the next time.

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Certain reflective surfaces scare her. The plastic doors on her toy microwave and oven. The stainless steel tap in the bath. Again, she can’t explain why, perhaps because her reflection is distorted? At least these fears are easy to fix, with paper taped over all the surfaces that frighten her.

There are so many other, random things that crop up each day. On Monday, it was milkweed seeds, that float through the air. Other children call them ‘fairys’; Milla runs in fear.

Every day, I walk around with a tight knot of anxiety in my stomach. I dread leaving the house with Milla on my own. I measure every word, every action, in case something I do exposes another fear in my baby girl.People tell me that she will be able to pick up on my anxiety, and that just makes it worse. That is like saying wolves can smell fear, does it make you more or less afraid??

I lay awake at night in bed; worrying, wondering. How can I help her?

That is the saddest thing, the most heartbreaking thing. Milla is three years old. A three year old should not have to carry this anxiety and fear around with her. A three year old should not even know what ‘anxiety’ feels like, let alone live with it, day in and day out.

A beautiful new friend I made recently, said this to me “When our children are having a hard time, it is so much more obvious to us, because unlike the rest of the world, we are FEELING it all. Trying to soak up all their anxiety, stress and upset, so that they can be ‘OK’. “  This rang so true for me.

I so desperately wish I could get inside her head, figure out exactly where her fear is stemming from , and then I could make it go away.

But instead, I take her to see new psychologists, new occupational Anxietytherapists.

Instead I research sensory processing disorders.

Instead I make daily activity charts and routine charts; to try and remove any uncertainness or confusion.

Instead I have blind faith, that this WILL get better. That this HAS to get better.

Because I know this girl. I know she is meant for amazing things. I know that she is stronger than her fears, than her anxiety. We will get over this hurdle, just like we have all the ones before.Because that’s what we do. We just keep going.

Anxiety

Dear Milla…

Dear Milla,

Sometimes it feels that life goes by so fast. We jump one hurdle, only to be faced with the next one. There is no time to celebrate our victories, for worrying about our challenges.

I tend to dwell on the negatives, let them weigh me down. I think throughout my life, I have become so focused on the struggle, that I have stopped noticing the positives. For that, I am so sorry.  I want to take this opportunity to stop, and be grateful for all that you are. Because you are amazing.

You were born fighting. From the moment you entered this world, eight weeks before your due date, there was something about you. Something about you that captured the hearts of everyone around you. So tiny and perfect, so quiet, yet so alert. You were taking it all in, processing everything. Milla

As if preparing yourself already, for how you would carve out your space in the world.

Just before your second birthday, we began to realise that your brain works a little differently to ours, that the perception you have of the world, and your place in it, is unique. And so we began a new journey together.

It’s been such a learning curve for both of us. To be honest, you have adjusted so much quicker than I have. I seem to get stuck on the ‘Why?’ and the ‘What if?’, but you, you just get up every day, and soak up life . Milla

In just over twelve months of speech therapy, you have gone from simply repeating everything that other people say; to having conversations, making jokes, telling us that you love your family. Saying please and thank-you, bless you and pardon me. I am so proud of you. So incredibly proud, and amazed at what an intelligent little girl you are.

You have a thirst for knowledge that cannot be sated. You have transformed the phrase ‘You learn something new every day’ from a cliché to a fact.

Milla

You posses more courage than I could ever dream of.  You carry around an anxiety that no three year old should ever be burdened with, there is so much that frightens you, that you don’t understand. Yet still, you laugh and giggle and play. You let me hold you, and comfort you, and kiss away your tears. You trust me when I tell you that it will all be OK.Milla

You have such a vivid imagination, and a vibrant personality; people who have never met you, fall in love with you. You make me laugh every day, even when life is overwhelming me.

You have changed my world. One day, when you are older, I will tell you more about my life before I met your Daddy. I was very very sad, and very very lost. Your Daddy found me, and then you came along, and you loved me. You make me believe, for the first time in my life, that I am worthy of being loved. You make me want to be a better person, and every day I spend with you, I heal a little more.

Milla

Together we will keep moving forward, we will keep jumping those hurdles. And on days when it’s all too much, and we just can’t keep jumping, we will stop. I will hold your hand, and you will hold mine. We will look back, and remember how far we have already come. And tomorrow will be a new day, and we will start again.Milla

Love always and forever, Mummy xx

I Jumped! ~ Wordless Wednesday

As you may remember, I have been raising money for the organisation Support for Mums, asking people to sponsor me to jump out of a plane, 14,000 feet in the air and hurtle back down to earth.

Well, Saturday the 30th was the big day! Strangely I had been quite calm in the lead up to the jump, I actually think my husband was more nervous than I was.

That is, until I started getting strapped into my harness… HOLY CRAP, WHAT THE HELL AM I DOING???

I think the tears started welling at about the 7,000 feet mark… then, at 14,000 feet, that little door opened, and people started disappearing out of it… I confess, I have NEVER been that terrified in my life. There was no backing out now though, and out I went!

I can’t even explain how I felt… it was the most terrifying, crazy, surreal thing I have ever experienced. I think the video and photos sum up my emotions pretty accurately (and yes, I screamed the entire free fall, at 200kmph)

My Sky Dive video ~ Via YouTube

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Did I enjoy it? Uum, not really! Truthfully, I was just so, so scared! Unfortunately my tandem partner wasn’t the greatest, and didn’t do much  anything to put me at ease, which was a real shame. When my husband hugged me after I landed, he could still feel my body shaking from fear!

Do I regret it? HELL NO. Aside from it being a once in a life time, bucket-list kind of experience, I am so proud to say, that to date, I have raised $1140 for Support for Mums!!

Would I do it again? Err..no thank you.

So I really want to make this count! My fundraisng page is open for another few weeks, so if you would like to donate a few dollars, and boost up my final donation to Support For Mums, that would be fabulous. You can donate HERE.

Linking up for Wordless Wednesday with

Exhausted.

I’m exhausted.

That type of exhaustion that you feel in your bones. You wake up in the morning, and before you even get out of bed, you’re exhausted.

I feel like all I’ve done for the last twelve months, since we got our diagnosis, is worry and wait. Wait and worry. Waiting for services, for therapists, for appointments. Waiting to be able to access Early Childhood Intervention Services. Worrying about the choices I’m making. Is this the right occupational therapist for her? The right speech pathologist? Am I spending her funding money wisely?

As the money slowly diminishes, I have more decisions to make. What does she need more? OT or Psych? Or something I’m missing entirely? Did I do the right thing, throwing everything I could at her in the first twelve months? What if the money runs out, what if we can’t pay for the services she needs in the future, because I am spending too much of her funding now?

Who the hell am I to even be making these decisions? I’m not an expert, I don’t know what I’m doing. I feel like I was hit with a diagnosis, given some money, and told to go away and figure it out.

More decisions. Which kindergarten is best for her? Wait, never mind kindergarten, which school will be best for her? I lay in bed and cried the other night, because I didn’t have the foresight to put her name on a waiting list at birth, for a school I didn’t even know existed at the time. What if that was THE school? The school she would have thrived at?

What if every decision I am making is wrong? Who am I to be making decisions that affect another persons entire life? I spent the better part of thirty years making wrong decisions about my own life, and made a complete and utter wreck of it.

I feel like I am carrying the weight of Milla’s future on my shoulders. And every day, as I face the challenges of parenting a child with autism; the meltdowns, the anxiety, the irrationality, the obsessive compulsiveness, I’m doing it dragging this heaviness around with me.

I feel like I’m fractured into tiny pieces, and I’m trying to hold them all together. As one piece falls, I go to catch it, and more pieces fall from where I moved my hand from.

I’m exhausted.

The Rules.

There are a lot of rules in our house. Everything must be done in a certain way. Things must be in certain places, at certain times. Certain words must be used, or not used.

We don’t make the rules. Autism does. If we don’t follow the rules, it takes hold of our beautiful, intelligent, funny daughter, and reduces her to a screaming, crying, mess.

My husband and I walk around on egg shells, constantly on edge. We snap and argue at each other, because we can’t fight with Autism. I get frustrated and angry at Milla, then hate myself, because I know it’s not her fault.

I don’t know if I’m strong enough. I know I don’t have the patience. I make so many mistakes. Sometimes I hate this life, and I’m terrified that it will always be like this.

It feels like we are alone, the three of us. Trapped in this crazy world, with it’s crazy rules. With a ticking time bomb, just waiting for an excuse to explode and take us all down.

Strong Enough.

Autism Is Not My Agenda.

April is Autism Awareness month, and to be frank, it has been making me feel uncomfortable.

My daughter has autism. So this should be my ‘thing’, right? Hooray, a whole month to raise ‘awareness’ about autism. World Autism Awareness Day was on April the 2nd. Everyone was encouraged to wear blue, landmarks around the world were lit up in blue lights, to raise ‘awareness’. The Sydney Opera House was lit up in blue, at cost of around $40,000.

At the same time, I started coming across articles and blog posts that disparaged the organisation that was running the “Light It Up Blue” campaign. Arguments that the money raised wasn’t used appropriately, that there is actually very little input from the ‘autistic community’. Suggestions that the ‘puzzle piece’ used in the organisations logo is offensive.

What does this all mean? I don’t know. And the more I thought about it, the more I realised that it really doesn’t matter. Not to me, my family, my daughter.

To be blunt, I don’t give a shit about anyones agenda. I am not an advocate for autism, I am an advocate for Milla.  I don’t have time to argue about politics; who runs what organisations and why. I am too busy fighting for Milla. I don’t care about the supposed conspiracies of the government and the pharmaceutical companies, the arguments for and against immunisations. I care about Milla, her life, her future. Milla is my agenda, not autism.

The only thing I will say about Autism Awareness month, is that wearing blue, posting quotes on facebook etc are great at raising ‘awareness’ of autism, but awareness is not the same as ‘understanding’. I think most people are aware of autism, but there is still a long way to go to reach understanding. This post from Stuart Duncan explains autism in plain English, and Kate wrote this post about Three Things You Should Know About Autism. Alternatively, if you want to understand Milla better, ask me questions. If you know someone who’s child is on the spectrum, ask them questions about their child.

Being aware of something will never change the world, but understanding it just might.

MILLA
MILLA

Wordless Wednesday ~The Girl We Call Moo.

Lately I have felt like my blog has been a bit depressing and negative. So today I thought I’d show you another side of my daughter Milla, who we affectionately call Moo or Mooie.

So far you know Milla was born two months premature, and that she has been recently diagnosed with autism. She is so much more than that. My daughter is honestly the quirkiest and funniest little person I have ever met, and even on our worst days, she manages to make me laugh at least once. I hope her antics can bring a smile to your face too.

 

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Busted.

 

I don't want to alarm anyone, but I think Milla may be planning to rob a bank...
I don’t want to alarm anyone, but I think Milla may be planning to rob a bank…

 

Fairy wings? Check. Box as a boot? Check. We're good to go.
Fairy wings? Check. Box as a boot? Check. We’re good to go.

Just hanging out in her room, listening to music, sitting in a dolls pram and trying on dress ups. As you do.
Just hanging out in her room, listening to music, sitting in a dolls pram and trying on dress ups. As you do.

What?!
What?!

 

Fairy dress with a Milla twist.
Fairy dress with a Milla twist.

 

Just chillin' with my pig.
Just chillin’ with my pig.

I can totally still fit it my block basket.
I can totally still fit it my block basket.

Linking up with Twinkle in the Eye and My Little Drummer Boys for Wordless Wednesday.

What to write?

When I started this blog, it was all about the “journey”. Where I had been and what I had to do to get to where I am now. To get my ‘Happily Ever After’. Married to my soul mate, mother to my beautiful daughter. All the crap that I lived through, all the pain and hurt, and mistakes that I had made, to get me to this point. To my family. It wasn’t smooth sailing. Things were lost along the way. But here I am, right, living my dream.

Except my daughter is autistic. Except my beautiful, strong, perfect daughter is autistic. And our lives are changed forever. Not necessarily for the worst. Not necessarily for the best. Just changed.

I try to wear the ‘brave face’. When the doctor asks how I feel about this diagnosis, I say it’s not ideal, but at least now we’ll get the help we need, the help Milla needs. Same story to my friends really. Early intervention, still the same girl (of course, it’s my Mooie ) getting the help we need…. blah blah blah…

But really, I’m fucking pissed off. I am pissed off, that after everything, my baby is faced with this. I don’t want to be brave, or strong, or inspirational. I am none of those things. I am lost and scare and flailing (failing?). I want to call bullshit. Bullshit, that after working this hard to get here, fighting so many demons, kicking myself up the arse and finally getting my shit together,  finding my happily ever after; my baby is autistic. BULLSHIT.

I don’t want this blog to be about autism. I don’t want to constantly write these miserable, depressing posts.

I don’t know what to write, because right now my mind is black, and angry, and so fucking tired. Today has been a hard day. My baby girl has been particularly ‘autistic’, as my husband and I call it, with an ironic smile. Ironic, because if we don’t smile, and try and make a joke about the craziness that is played out here, by our beloved ‘dictator’, we would just cry and cry. Or I would. Or I am.

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Diagnosis

As we sat in the small office of the psychologist and she told us our daughter had Autism Spectrum Disorder – mild to moderate, it wasn’t a surprise. It was what I had been expecting. But still. The reality of it, to see it in writing in the report, the knowledge that this was something our beautiful darling daughter would have to deal with for the rest of her life, broke my heart.

I’m so sad, and so angry that this is her fate. She is so amazing, so strong, born fighting. She has her whole life in front of her. I want her to have every opportunity available, I would give her the world, on a platter, if I could. She deserves the very best life has to offer.

I understand that we caught it really early. I know she will have the the best chance with early intervention. I know there are so many services, so many resources out there to help her. I get that. However, right now, right this second, I am so pissed off. It’s not fair. I don’t want her to have hurdles she needs to overcome, I don’t want her to have to struggle to ‘fit in’. I don’t want her to be in this bubble that she is in, that we have to learn to penetrate.

I worry about her future. I worry about whether she will be able to make friends, will she be picked on? Will she need an aide at school? Will it be obvious that she is different, that she thinks differently? Will she be able to live independently as an adult? Will she fall in love? Will she even understand love? So many ‘what if’s’ that no one has the answer to right now.

So I go through the motions. I contact all the different agencies that she will need to access for assistance. I fill out all the different forms; for funding, for early intervention , for wait lists. I follow all the steps that I am told, take control of the only things I have control over. I nod and agree with people when they say how great it is we got it early, how fabulous early intervention is. And I do agree. That doesn’t make it better though, it doesn’t make it easier. It doesn’t take away the worry, or the fear, or the guilt.

Just like knowing that she has ASD doesn’t make her behaviour any easier to deal with. Until we start therapies I am flying blind, metaphorically hitting my head against a brick wall as I struggle to communicate with her, to get through the copious daily meltdowns. The guilt I feel when I lose my temper is intensified, as I know she can’t help her behaviour. I struggle to get through every day, twelve hours without a break, without any help (apart from my husband, but he is at work through the week) The stress and the worry, the fear, wears me down. I love my daughter, but she is relentless, both of us frustrated that we can’t be understood. It’s overwhelming and exhausting, and most days end in tears.

I know this is not our ‘forever’. We will get through this, we will get help, we will learn. We will break down these barriers between us and our child. It has only been a week since diagnosis. We are still struggling with this new chapter in our lives. I know we will move forward, with hope and strength.

In this moment though, I am exhausted. I am sad, I am angry and I am scared.

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