The Promise.

“So what’s going on Fi? You’re nowhere to be found on social media lately and I KNOW what that means with you. How are you really doin? What’s the go”?

Crap. I knew she had my number and I wasn’t going to get away with my standard ‘everything’s going great guns’ answer because she would’ve seen straight through it. I took a long sip of my coffee and considered my answer carefully before replying.

“Well, it’s like this. I see that I have two options: I either run away and start a new life somewhere else, or I stay and continue fighting the system until my boy gets the help that he so desperately needs.”

She nodded in understanding but the scepticism was written all over her face. So I continued:

“There simply are no other choices here, and my son deserves much more than a mother who flees because it’s all too difficult. He deserves a mother who will knock down different doors and follow different leads until she finds the one that eventually leads us to success.”

She looked at me and smiled before replying gently:

“That’s all very well Fi, but what about you? How are you going to continue fighting when you’re this exhausted and this beaten down? Who is going to take care of you when you hit rock bottom and can no longer function. You can’t be everything to him when there’s nothing holding you together”.

I laughed resignedly and said:

“This is not about me. This has never been about me. “

She nodded again and waited for me to continue.

“Right now, I don’t have the brain space to think about anything or anyone except my next move when it comes to helping Harley. I’ve had to let friendships slide and social engagements pass. And lately, I’ve not had the ability to plan anything past the next ten minutes. And to be completely honest – I really honestly don’t even care what people think of me right now. None of that stuff matters when your sole focus is on helping your boy to survive in a world that seems determined to ruin him”.

I looked my friend square in the eyes and I challenged her:

You’re a mother too, you get this right? You get that this is consuming me and that I just can’t rest until I start to see some progress with the horrible and relentless demon that is his mental health? Surely you get that I can’t just walk away from this, I can’t give up on him because if I give up on him, he has no one. I just cannot and will not walk away”.

She nodded and sighed.

“This really sucks . Another wine?”

And then we both collapsed into a ridiculous fit of unrestrained laughter. I mean – what else could we do but laugh?

*************

I made this precious baby boy a promise that I fully intend to keep.

I made this precious baby boy a promise that I fully intend to keep.

This afternoon I had a flashback. I was transported back into a hospital bed when I was handed the most wonderful little package 10 years, 11 months and 19 days ago to be exact. I remembered looking down into my arms after spending six hours in the worst pain imaginable. I recalled the moment that I realised that the pain was but a distant memory because in that moment – nothing else mattered.

I knew that I was deeply in love. I remembered looking down into the vivid blue eyes of my newborn son as time seemingly stood still. I remember the hope and the excitement that filled me as the dreams that I held for my son overwhelmed me and filled me with a compassion that I couldn’t explain or contain.

I made a promise that day. I promised my little boy that I wouldn’t allow anything to hurt him and that I would be his number one supporter no matter what.

Ten years on – I’m being held to that promise and I mean it as much today as I did back then.

I will not give up on him.

I will fight this until the bitter end.

******

Today I managed to secure an appointment with a new doctor for next week. I am trying a completely different tactic and have decided to go private and pay whatever it takes for the best help that I can possibly afford. So fingers crossed that this route turns out to be more successful than the nightmarish waste-of-time health professionals that have let us down time and time again in the past.

I would also like to thank those of you who have reached out to me recently via text, messaging and phone calls, I sincerely appreciate the support while I weather yet another storm in this mental health/autism/anxiety roller coaster ride and I apologise to those whom I have let down or not given enough attention too.

Please forgive me and know that I am doing the best that I can.

Love you all muchly. x

5 reasons that autism has made me a better mother.

boys and Fi StairsSince today is Mother’s Day, I thought it would be a perfect opportunity to share this post that I’ve had in my head for a while.

I’ve written many times about how you feel as a parent when you first receive that autism diagnosis and about having either an accompanying sense of relief because you finally have answers, or the overpowering grief at the loss of the dreams that you one held for your child and their future.

I discovered that when you become an autism parent you are left with the choice to either allow it to drown you or make you a better person. I drowned for many years. Far too many years actually – and even now – I still have days where I’m treading water and struggling to stay afloat but I’m not going to write about that stuff now. Tonight my post is going to be focused on all of the ways that I have noticed that autism has made me into a much better mother.

 Autism has made me a better mother because:

 1. It has caused me to slow down, to have patience and to be thankful for the little things that other people often take for granted.

I have always been an impulsive person. I like to live in the moment and I don’t like to plan ahead. My personality likes to make things up as I go along and you could describe me as someone who ‘wings it’ a lot of the time. I get agitated when I have to wait as I am incredibly impatient and my attention span (or lack thereof) often causes me to miss the finer details and skip over the boring stuff and I just want to get to the final destination having as much fun as I can along the way.

But then autism entered my world and turned it on it’s head.

I clearly remember a day many years ago when Harley was very small, probably about 4 or 5 and we were going for a walk to the park together. I just wanted to get there already and turned around every few minutes to tell him to hurry up. He was dawdling and was frustrating me because he kept crouching down and looking at the concrete path. He would stop every few steps and stare at the ground completely oblivious to my voice and my directions.

He was in his own world and his little face was etched with wonder and delight so eventually I crouched down beside him to see what was fascinating him so much.

He grabbed my hand and squeezed it and pointed (he still had very little discernible speech at this age) and then touched my cheek to turn my head to look at him. Then he smiled broadly and said: “Anz Mummy. Anz are cweeping an dey cawwy food to da hole”.

And my gaze was directed to the line of hundreds of ants who were all carrying crumbs from a sandwich – that was discarded on the side of the road – into their ant’s nest about half a metre away from where we knelt.

In that moment I realised that maybe going to the park was MY plan and that my little boy was having just as much fun watching these ants as I had imagined he would have at the playground. So we sat down and watched these stupid ants for probably another hour or so until he became tired. We never got to that playground that day but my boy was happy.

I learnt that day that my kid was never going to be like all the other kids. I learnt that he didn’t care much for playing with other children at the park but that he was able to find his happy place on a cracked footpath in the middle of suburbia with his Mama sitting right there beside him waving at the passing cars.

We have MANY moments like this in our house. The boys often being hyper focused on one small detail and become absorbed by whatever has taken their attention. Their autism and attention to detail has helped me to slow down and appreciate the beauty in everyday life that I would otherwise miss because I am always in too much of a hurry.

2. Autism has given me given me a deeper compassion for those who struggle in life.

It is often said that autism, like many other disorders such as ADHD, ODD, OCD etc are “invisible disabilities”. Meaning that unlike a child in a wheelchair, it’s not always obvious that the child has an impairment.

So these children are often expected to be like ‘every other kid’ and are told that they’re making excuses or being lazy when they are unable to conform to society expectations or when their sensory system is playing havoc because of their surrounding environment.

And that is rough.

I have experienced it first hand by hearing nasty comments aimed at both me as a parent and at my melting down child. I have also heard it from friends of mine who are now adults on the spectrum and this makes me sad.

They are frequently misunderstood and judged unfairly because they “look” just like everyone else and they are overlooked and labeled as ‘freaks’ ‘weirdoes’ or ‘attention seekers’ because of the massive lack of awareness and understanding for their struggles and the impact that it can have on their daily lives.

And I wouldn’t have the insight that I do into these difficulties and challenges that these guys face every day if I wasn’t privileged enough to experience autism first hand and see that there is always a lot more going on than what the naked eye can see.

Since becoming a mother to children with autism, I have learned to ALWAYS give the benefit of the doubt and to extend compassion in situations that I may have been judgmental towards previously.

3. Autism has helped me to stop and see the bigger picture instead of getting stuck on the ‘hard’ that’s directly in front of me.

 

I’m trying to write a positive post here but it kinda goes without saying that often autism is ROUGH. Not just on us as a family but also on my children when they are thrust into unfamiliar or frightening situations.

It can be very tempting to wallow (and I still do) when one of my kids is having a hard time but I’m learning (albeit slowly) that progress is what I should always shift my focus to when times like this hit.

I have learnt to cast my mind back to when Harley (particularly) was a lot younger and the mere thought of entering a supermarket would send chills up my spine. Back in those days he wouldn’t be able to manage more than a few minutes inside before the head banging, the screaming and the crying would begin and I would beat a hasty retreat defeated and depleted.

But those days are no more.

Sure, we still encounter public meltdowns, but these days I am more equipped, he has learnt better coping mechanisms and I have learnt to read his vital signs and know when it’s time to leave and on most occasions – either redirect him or get out before the explosion occurs.

By mentally giving myself a talking to and choosing to look at the progress, I am able to see just how far we’ve all come instead of allowing the current “hard” to overwhelm me.

4. Autism has shown me than I am stronger that I would have ever believed and a lot tougher than I ever gave myself credit for.

I have experienced very high highs and extremely low lows. I have watched my child struggle to talk, to breathe, to eat, to sleep, to socialise, to learn, to ‘fit in’, to dress himself and to just survive and that does something to you.

That destroys a part of your heart. It is SO HARD to watch a piece of you battle constantly and be unable to take their pain away.

I have fought the government, schools, teachers, doctors, specialists, other parents and friends and I haven’t always won but through these challenges I have learned that I AM ENOUGH.

Because enough doesn’t mean that my house is always spotless. Enough doesn’t mean that I will always keep my cool and never yell at my kids.
Enough doesn’t mean that my marriage is perfect. And enough certainly doesn’t mean that I have got it all together, but enough means (by definition) “as much as required.”

‘Enough’ means to me, that though there’s rarely any of me left over at the end of each day – my kids are fed, they are healthy and for the most part – they are happy. Taking on board the concept that ‘I am enough’ has brought me such freedom and peace.

And lastly;

5. Autism has allowed me to grow into the mother that I am today.

I had to make the decision years ago to either sink or swim because autism clearly wasn’t going anywhere. So I threw myself into learning whatever I could about how my boy’s brains are wired so that I could approach mothering them from an educated and informed position. I came into this knowing nothing about autism and had to make the choice to either be an involved parent, or leave my ill-equipped kids to navigate this scary world on their own. As I wrote earlier; I am not motivated or organised by nature but autism has given me the opportunity to develop these skills and become a better and less selfish person. You cannot be a good parent of any child if you continue to put yourself first and this was a hard lesson for me to learn but I am SO glad that I did.

 

Starting Again

image via morguefile.com

image via morguefile.com

I know I haven’t blogged regularly in over 18 months and that my posts on my FB Page have been few and far between. And I’m a long way from the twice-daily blogger that I used to be on my old (no longer existing) blog, and whilst I miss it – I realise that my life is no longer where it was back then and that I needed to do what I needed to do to look after myself and my family.

I (we all) really needed to heal more than anything else. Autism has continually kicked all of our butts in a big way and my son went (and continues to go through) some pretty major struggles with his mental health that meant that blogging and sharing about our life was not even do-able let alone wise.

Not only did the blog suffer – I also deleted my personal Facebook profile and laid low because I simply wasn’t able to be what people expected of me (or what I had imagined they did) so it was much easier to just hide than deal with the questions and the digging.

In the past 2 years, (especially) I’ve experienced quite a lot of personal hurt and heartache that still smarts occasionally, but I now understand that I needed to go through it all in order to grow and develop my character. It completely sucked going through the mill but for me to begin to deal with the severe and major depression that I had fallen into – it was a necessary path because it has showed me that I’m a lot tougher than I ever thought I was and I can cope with more than I ever thought possible.

I don’t let people intimidate me as much as I used to and I have decided to use my experiences as a lesson in what NOT to do from now on when I blog.  So many other autism parent blogs have disappeared lately because of the spike in online trolling and name-calling, but I refuse to small allow a group of outspoken, judgemental autism parents steal away my voice. Especially when I gain so many therapeutic benefits from writing.

I have such wonderful kids who continue to challenge me to be a better mother and who teach me far more than I could ever teach them and my boys have ben showing such wonderful progress and I just can’t wait to share it all here.

I am no longer angry, nor am I seeking revenge and I am leaps and bounds ahead of where I was this time 12 months ago and I have so many good things to write about.

But not tonight. Tonight I must SLEEP!

Neon signs and Eyebrows.

image via morguefile.com

image via morguefile.com

Today I got my eyelashes stuck together with hot wax and also somehow managed to wax off almost half of one eyebrow. All because I got momentarily distracted. It turns out that having poor eyesight and trying to do this with my glasses off wasn’t my smartest move!

I’m quite clever I know, and anyone who knows me well will attest that I am not known for my attention span, but today was a particularly bad one and I have one and a half eyebrows to prove it.

After I’d googled “how to remove wax from your eyelashes without pulling them out” (yes I really did) and I had read hundreds of ridiculous remedies, I eventually decided to try cutting it out with manicure scissors.

Yeah, that wasn’t my finest moment, either – so now, not only am I missing half an eyebrow, I also have only got a few small eyelashes on the opposite eye!

Oh my goodness I look quite a sexy beast I can tell you!

Then after I’d spent another ten minutes laughing at myself in the mirror, I jumped in my car and went down to the pharmacy to buy myself a set of fake lashes and an eyebrow pencil and I plan to google “how to draw an eyebrow” next.’

So I was telling this story to Paul tonight, and after he’d picked himself up off the floor from laughing he said: “Wow Fi, this would have devastated you only a few months ago. It would have had you in a total mess”.

He was right.

If something like this had have happened only as recently as a few months ago, I would’ve been a complete basket case. It would have been the proverbial straw that broke the camel’s back and would have pushed me over the edge because I was already standing on a very thin balance beam between coping and completely losing my mind.

But a lot has changed here recently and it takes ridiculous mishaps of the grooming variety like this for me to be able to realise just how far not only *I* have come, but how far all of us have come.

Many of you know that my boys started at their new school last week.

It was something that I knew in my heart of hearts had to happen but I kept putting it off because I was so incredibly afraid of change. But the story surrounding my final decision to move them is actually quite remarkable and I now feel ready to share a little bit of it here with you guys; my loyal readers.

It was back last November when I finally realised that things had reached a point with Harley’s OCD and anxiety disorder when he was referred to see a psychiatrist after saying some very troubling things to us. I won’t go into details of what he told us but suffice to say that it was enough to warrant immediate attention and enough to cause me to draw a line in the sand and look for a new school for him.

My Mum was visiting at the time and we spent literally hours researching schools, visiting campus after campus and making phone call after phone call, when one morning as I was I sitting opposite her in a cafe I said to God aloud: “I’m tired of chasing dead ends and I’m exhausted from trying to figure this out. Please give me a neon sign because I’m not in a place where I can pick up on subtle hints, I need something obvious. Give me a neon sign answer”.

I had no idea how powerful that prayer would turn out to be.

A few minutes after asking God for a sign, I got a phone call from my sister and she asked me why I hadn’t considered sending the boys to the local public school? I gave her the same stock standard answer that I gave everyone who asked me that question: “Because I’m afraid that the boys won’t get the education that they deserve”. Amongst other things that I really, really didn’t want to tell her.

But the truth was – I was probably just being an uninformed and clueless snob. It’s not that it is a bad school that my children are zoned to, it’s just that, ok yeah – I WAS being a snob and I clearly had my head so far up my butt that I just couldn’t see any sense.

So I told my sister that I would at least consider it because I knew deep down that she had a point and I was fast running out of options.

She then asked me to tell her exactly what it was that I didn’t like about the public school so eventually; I told her what else had been troubling me.

I could hear the loving smile in her voîce as she pointed out that the two main reasons that I gave her were actually both already happening at the Independent school, and she then pointed out that we were paying bucket loads of money for it! So in her words: “It can’t possibly be worse, and even if it is – at least you’re not paying for it”.

{I couldn’t argue with that logic and it turned out that this particular conversation ended up being the catalyst for several other decisions that I was able to make straight afterwards}.

So Mum and I finished our coffees and she suggested that we drive past the local school on our way home ‘just to have a look’ so I agreed. We talked in the car on our way there and I had started to reach a point where I was willing to give anything a go because I just didn’t have any peace about any of the schools that we’d visited.

I pulled up out the front of the school and climbed out of the car and started walking toward the administration office when I stopped dead in my tracks because out the front of the school was a flipping NEON sign with the words:  “Enrolling for 2014” and I started laughing.
I’d driven past this school countless times and never once had I ever noticed that sign before!

Mum and I looked at each other grinning ridiculously and I knew right then that I had my answer. It was unmistakable and I knew that there was no denying that God certainly had a sense of humour and that this was the place the boys needed to go.

So I went in and filled out the application forms on the spot and had a meeting with the Principal and Learning Support Head Teacher only a few days later.

At that meeting, they looked over all of the boy’s paperwork and put plans in place to transition them into the school almost immediately. They told us all about the programs that they ran for children on the spectrum and assured us that they would do everything in their power to bring Harley’s grades up where they needed to be.

They also told me that several of their teachers had just completed autism specific training and they promised to place each of the boys with one of the teachers.

And they did!

It’s now been almost 2 weeks since they started at their new school and both of the boys are absolutely loving it there. They are both coming home at peace, happy and the aggression and anger that we had become so accustomed to has vanished completely.

The stress and angst and anxiety that was permanently etched on Harley’s face has disappeared and he has become the gorgeous little boy that I knew was always hidden behind the agony that he had learned to live with.

He didn’t know that school could be this great and my only regret is that I didn’t do this sooner.

And me. Well, I have been able to wean off the anti-depressants that have been my constant companion for years because these days, I just don’t have the same levels of stress that my poor body had become used to.

Things certainly aren’t perfect in other areas, but I am now able to look in the mirror at my one eyebrow and laugh at the lack of eyelashes because I KNOW that in the grand scheme if things that this is really no big deal.

I can see now that things are definitely only going to get better and better. And that my friends: is HUGE!

But even after watching several tutorials on youtube, I still look like a bit of a circus freak so it looks like I’ll be sticking to the LARGE framed sunglasses for a while whenever I’m in public. If you know what I mean 😉

Addendum: psst – I got a job today too.
YAY!

Midnight Musings…

Screen Shot 2014-01-24 at 2.42.39 pm

 

 

 

 

1. Sometimes, it’s nothing you have or haven’t done that cause grief and heartache to enter into your life.
They just do.

2. There will always be some things in life that you will never find answers for, and you will drive yourself crazy trying to figure them out. Learn to be satisfied with not knowing everything.

3. Trying to work out the intentions and motivations behind other people’s words and actions is virtually impossible and turns out to be a massive drain on both time and energy.

4. One of the hardest things in life is pushing through depression and continuing to put one foot in front of the other when all you want to do is curl up into a tiny ball under the covers and cry.

5. You can preach autism awareness until you’re blue in the face but there will always, ALWAYS be those who will never ‘get it’ , those who REFUSE to ‘get it’ and sadly – a group of people who just don’t give a crap and you’ll never ever change them no matter what you say or do.

Making peace with this last group of people is vital for moving on and making progress. Cutting toxic people out of my life seemed harsh at first, but you can’t grow beautiful flowers in polluted, murky water.

And a bonus point:

6. Writing out my inner most thoughts at midnight may not turn out to be my best ever idea  😀

Life Lessons from 2013

I was thinking today, that I’d like to sit down and write a little about what I’ve gained in the area of life-lessons from last year
So what did it teach me? Here are the top 3 things.Screen Shot 2014-01-24 at 2.45.44 pm

1. God is everything.

Not religion, not church, and not just “faith”. I’m not talking rules and regulations here, nor am I talking legalities and requirements to do or say anything but a personal and truthful relationship with God.

With all that has gone on in my little family, He has remained a steadfast and strong rock for me to collapse on to time and time again. And this year I have collapsed a lot. Mentally, emotionally and even physically I have been pushed past my limit many times but through all my personal trials: God has been a constant source of strength and comfort.
I’ve had far too many friendships and relationships go pear-shaped this year and I have been baffled by most of them. I have found myself treading water on many occasions, but every time, EVERY TIME He has caught me and set my feet upon solid ground.

2. I’ve learned that I am enough.

I, (like the rest of you) will probably never be able to successfully juggle three kids, special needs, keeping house, working and studying all at once, but as long as I continue to do my best in all of those areas – that is enough.

Because enough doesn’t mean that my house is always spotless. Enough doesn’t mean that I will always keep my cool and never yell at my kids.
Enough doesn’t mean that my marriage is perfect. And enough certainly doesn’t mean that I have got it all together, but enough means (by definition) “as much as required.”

 

So ‘enough’ means to me, that though there’s rarely any of me left over at the end of each day – my kids are fed, they are healthy and for the most part – they are happy. Taking on board the concept that ‘I am enough’ has brought me such freedom and peace.

3. I don’t have to be like everyone else.

This last one is similar to the above point (I am enough) but refers more to me personally. It refers to the fact that I am owning the parts of my personality and character that are unique and unusual and not following the crowd and I am starting to be ok with that. I’ve spent far too many years worrying that I am not like the rest and beating myself up for what I once considered to be character flaws.

For example: I admit that I am more emotional than your average Joe. I cry more, I take more things personally and I react to things that other people can just let slide. I take longer to get over things than most people, I get hurt more easily and I try to make everyone like me. I don’t cope when people are mean and I over-analyse EVERYTHING inside out and back to front until it turns my brain to mush and I end up in a crying soggy mess on the floor.

But on the flip side- I am extremely loyal to those whom I love to a fault. I forgive more times than people deserve it and I give second, third, fourth and so on chances when other people would have just written someone off. Even if I cut contact with someone to protect myself, I will always let them back once the dust has settled. It’s just who I am. And because of this, I will probably continue to get hurt time and time again, but this is me and this is how I’m made: and God doesn’t make junk.

I am learning to shake off what some people close to me have said and have started to see myself as God views me.

And the lastly: (3a if you like?!)

Autism is always going to be a part of my life.

It’s true – my boys won’t magically lose their diagnoses but they will continue to learn where they fit in this world. Slowly I am learning to embrace it and let it shape me. Autism can be a really huge pain in the butt, be heartbreakingly difficult and can rob my boys of so much but it is a part of who my boys are. I can dislike the difficulties that it brings them and my family but it doesn’t change my love for them at all.

Autism is no longer the big scary “A” word that it once was and for that I am grateful.

Dear 17 year old me..

 

Dear 17 year old me,

You will eventually learn to like your name. You will never love it but you will one day actually tell people your real name when they ask. You think it’s funny now when you tell people it’s Beryl and giggle at their surprised faces, but it will get old fast.

So, do you see those people that you’re sharing the school playground with? Yeah, well you don’t have to be friends with all of them after school finishes for good next year. Some of them you will lose touch with and you won’t care at all, but others will always hold a special place in your heart and you will reconnect with them when you’re all grown up. They will mean more to you then than they do now because age brings new perspectives.

And your parents? You think they’re old and don’t understand you but you really need to know just how much they * do* love you. I mean REALLY love you. So much more than you could ever realise. One day you will have children of your own and only then will you actually “get” it.

After you leave school, you will move a long way from home because you think you know better than anyone but guess what? You don’t.

You will get yourself into some mighty fine messes and your parents will dig you out every.single.time because they love you that much. You are stubborn though and it will take you a long time to realise this and thank them for it.

After spending another 2 years doing some really stupid stuff like jumping from job to job and hanging out with the wrong crowd you will eventually tire of the rebellious lifestyle.  But do you remember the story about the prodigal son in the bible? Yeah, well good, because that’s kinda who you become.

You will eventually go home with your tail between your legs and move home again until you get back on your feet. And your parents take you in with open arms and love on you and encourage you to right your broken relationship with Jesus. It will be the best thing that you will ever do.

Your Dad will teach you that if you have God in your life; anything else is just icing and that you need to look to Jesus for happiness because a man will never provide what only God can.

He will teach you that all men and women are flawed by their human-ness and will ultimately fail you at one time or another because of this, but that God will never let you down.

You will never forget this and there will be times in your life that you hold fast to this teaching because people will let you down but you will only be disappointed – not destroyed.

You will marry and it won’t always be smooth sailing, but you chose to put your hope in God so you’ll survive every storm intact.

You will have 3 children and they will bless you, frustrate you and complete you all at once.

But it won’t be easy. Two of your children will be boys and they will both have autism. You will fall apart at first but surprise yourself by picking yourself up and carrying on despite your heartbreak and lack of faith in yourself.

You will lose friends once the news gets out and it will hurt, but all will not be lost because much better and more loyal friends will replace the void that they left.

You will experience great loss in the death of your beloved Dad, great heartache in watching your children struggle and great pain as you endure a lot of personal health issues but you will survive them all and come out a stronger person at the other side.

Eventually, you will learn that you can find happiness and beauty in the small everyday things if you just stop long enough to notice them.

Autism will give you the ability to appreciate things that other people take for granted and bless you with the desire to be a better parent.

One day, you’ll read this letter back and you’ll smile, you’ll laugh and you’ll wipe away stray tears that inevitably fall, but you will know that you have done the best that you can with that which you have been given.

And you will continue to rejoice through both hard times and good because you KNOW that life is what you make of it.

Love 37-yr-old you xxx