Desert Poem

I see you in the desert where,

You’re wandering alone,

But what you have forgotten is,

I haven’t left my throne.

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If you take my hand, I’ll lead you out,

But you need to make that choice,

I’ll never force or pressure you,

I’ll guide you with my voice.

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I am a patient father and,

I’ll love you either way,

But I want to save you heartaches,

And remove your constant pain.

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I have a master plan for you,

It’s been there all along,

I know you wandered off the path,

But I also made you strong.

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My strength in you has kept you as,

You weathered storms and strife,

My spirit has sustained you when,

You wanted to give up on life.

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Your heart is soft and beats for me,

Though you’ve said things you regret,

You momentarily lost your way,

But when I forgive – I forget.

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My chosen child, my precious one,

Be still and rest in me,

I’ll guide your steps and hold you close,

For all eternity.

 

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Beauty Will Rise

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Springtime has long been linked with new beginnings and the end of a cold, dark oppressive period. (The winter) I was looking over some old letters today (because I’m very sentimental like that) and came across a beautiful ditty in a card that my best friend’s Mum wrote to me about this time two years ago. It still very much speaks to me.

It’s in the winter that the trees shed their leaves, and look bare and even unattractive.  However, under the ground the roots are drawing nutrients, growing bit by bit, and becoming more secure and able to hold the following spring’s “leafed tree” more securely afterwards.  I remember telling myself MANY times: “In the winter, the roots go down.” Spring is on its way!!!

I was reminded of a song written by Steven Curtis Chapman following the untimely and accidental death of his daughter Maria.

The tragic loss almost caused him to quit the music industry and give up completely. But during the grief that he endured in the many painful months afterwards, he wrote the song “Beauty Will Rise”

‘Cause I have seen the signs of spring

Just watch and see

Out of these ashes,

Beauty will rise

And we will dance among the ruins

We will see it with our own eyes

Out of this darkness

New life will shine

And we’ll know joy is coming in the morning

He didn’t give up nor did he allow difficult and painful circumstances to shape him or dictate how his future was going to be.

He chose to allow beauty to rise from the ashes of death both physical and metaphorically.

It is September and the first official month of Spring here in Australia and I am starting to see new life sprout in the form of progress in my children and a new hope for my future. During the winter periods the roots DID in fact go down, in fact, they went down very deeply. They have been drawing nutrients and life saving water reserves and already I’m starting to see newer and fresher foliage appear.

 

 

Psalm 1:3 He shall be like a tree, planted by the rivers of water. That brings forth its fruit in its season. Whose leaf also shall not wither; And whatever he does shall prosper.

 

I can’t help but be excited about whats in store for us.

Waving the white flag

white flagI’ve been pretty terrible at blogging this year. My heart just hasn’t been in it and I hate that almost everything that I have to write about is either negative or has a negative slant on it. I always told myself that I wasn’t going to become a ‘woe-is-me’ blogger but guess what? The life that we are currently living is hard. In fact, it is really damn hard and I am struggling to keep positive and optimistic with all that’s going on. Which is most of the reason that I’ve stayed away from the keyboard.

Paul admitted to me last week that he is half expecting to come home from work one day to find me gone and the children left to explain my absence. He has watched them gradually wear me down but instead of helping me – he steps back because HE can’t frickin’ cope either.

He’s not far off the mark to be honest, I have felt like leaving many times but would never do that to my children. As crazy as they have been driving me lately – they are still my world.

One thing is definite though – I need a damn holiday away from the aggression, the anger, the defiance, the disobedience and well, pretty much everything else as well. Term three has only got one week left and the kids are more than ready for the 2 week holiday break, but I am not even close to ready to have them home all by myself.

But I will survive because I have to. I simply do not have any other option.

But do you know what probably gets me the most? The fact that I have poured almost 6 years into researching, reading about, practising and implementing strategies and techniques to help my boys with things that they struggle with due to their autism but still, STILL I feel like I know absolutely nothing!

Every time I start a new unit on my course – I am reminded that there is still so much about autism that I do not yet know. It is vastly overwhelming and my head is swimming with information overload and I lack the ability to apply the head knowledge that I have to the appropriate situation(s). I feel as though we are operating in survival mode and treading water (once again).

I feel like one of those high-rise building window washers. I stand perched on the rickety scaffolding outside other people’s window ledges on the wrong side of the glass. I peer longingly into their lives through their dirty windows but all I can see is how perfect everything appears though the pane that I am cleaning with my own hard work -hard work that is rarely ever appreciated. I notice what these other people have, how they live and I feel lonely and overwhelmed by how far my family is from what everyone else seems to have. I am not jealous, but I am very aware that I am just looking in from the outside. I don’t fit in these kinds of worlds. I don’t belong in these scenarios.

I know that as I stand here balancing on the edge – I am not wearing a harness and that all I would have to do is take just one step backwards to end this pain once and for all.

But I also know that I am stronger than that. I remind myself that

 “The reason we struggle with insecurities is because we are comparing our own behind-the-scenes with everyone else’s highlight reels” Ps. Steven Furtick

But even remembering that, I am aware that right now – things are beyond tough in this house.

Frankly – I’m tired of being told that “all parenting is hard”. Yes! Yes it is. I have never denied that nor have I implied that it’s not! But I react badly inside when I hear that phrase because what I’m hearing is: “Stop complaining – you’re not the only one who has challenges with your kids”.

But what people seem to forget (or not even realise) is that we are doing exactly what every other parent is doing AND THEN SOME. I’m so over hearing the words ‘boundaries, rules, expectations, challenges’, and other words that imply that our boys are so out of control because we are crappy parents who have dropped the ball. Don’t people think we’ve already tried all those things? Do people just assume that my kids are left to their own devices all the time and now we are reaping the benefits of that kind of neglect?

I mean seriously?

I sat in the foyer of church this morning with Paul crying because I feel that no one, NO ONE gets it. I am tired of people telling me “chin up” or “you’re a great mother” when they haven’t had to walk in our shoes or live in our house.  Autism can be a nasty bitch and trying to explain it to someone who doesn’t live with it is akin to describing childbirth to a man. All you can tell him is “it hurts like hell but it’s worth it in the end”. Details and specifics are left unsaid because it would make him uncomfortable and it’s frankly disturbing. As sure as a man can empathise with you and a friend with your situation – they will never fully GET IT!

I have tried everything that I can think of to help my boys to manage their emotions, conquer their anxieties and overcome their behavioural difficulties, but sometimes – nothing works and you have to wave the white flag in surrender.

Well, I’m waving it madly these days but I am also using it to dry my tears and blow my nose. Not only have I taken off my “everything’s peachy” mask today, I have thrown it angrily on the ground, stomped on it and thrown it repeatedly at a brick wall.

I sit here typing admitting that I am exhausted. Mentally, physically and especially emotionally. I am tired. I am sleep-deprived and I am worn out from dancing the stupid autism dance. I don’t know all the steps and I have no frickin’ rhythm anyway.

I am angry that we are continually knocked back for any sort of respite and wondering day to day just how we are going to make it out alive. It’s one thing for people to tell me “you need a break” but it’s another thing entirely for that to actually happen.

Right now, my marriage is held together with Band-Aids that have been there so long that they’ve lost their adhesive properties and are just barely keeping us together. They no longer cover the ugly wounds or the scars – they aren’t really any use to us at all. To be truthful -I just don’t know if we are going to make it or not.

I didn’t write this to extract sympathy, to beg for help or to paint a nasty or critical description of autism, but to be 100% truthful and own the fact that right now – I am no help to anyone. (Which is also why I have decided to turn comments off on this particular post).

But through all this pain, this hurt, this exhaustion and this anger at injustice – one thing remains….and that is the faithfulness of my God who keeps me in the midst of the constant storms.

There is a story in the bible in Exodus 17 about Moses. When his hands were raised – the enemy was defeated but when they were lowered – the enemy triumphed. Moses became battle weary and unable to continue to hold up his hands but through the support of his friends Hur and Aaron who held up his hands until the battle was won, he got to witness Israel prevail.

And I believe that my friends who are praying into my situation and for my family are holding my hands up for me until the battle is over. Because from where I sit – this autism parenting gig is only getting harder and harder.

The gentle voice of teaching

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I love my Mum so incredibly much.

Today is the day that my mum has to go into the city to see a specialist about her lungs. She’s been sick since last November and hasn’t been improving very much at all. The doctors that she has been seeing in her country town have performed every test under the sun but it’s time to go and get the big guys to take a look.

Hence today’s appointment.

To say that I have been worried sick is an understatement. There’s something about losing one parent that makes you all that more concerned when it comes to the health of the other one. Especially when they are quite unwell.

Originally, I’d planned to go to the city with Mum on the train to keep her company. I had also intended to be her support whilst talking to the doctor. It’s always a good idea to take someone else along with you to appointments like these because the other person often hears what you don’t through emotions etc.

I know that when I walked out of the very first appointment with my neurosurgeon, my husband heard: “I have performed this operation several times before and although I have complete confidence that everything will run smoothly, I am legally required to tell you about possible side effects of this kind of invasive surgery”.

Whereas all I heard was: “You could die, or become paralysed”.

See what I mean?

But my Mum isn’t a worrier like me. She honestly has complete trust in God that He will bring her through this smoothly and without drama. I want to be just like her when I grow up, and I think that me wanting to be with her was more about what I wanted, than being about her to be honest.

Right now, I am so annoyed that things didn’t pan out the way I had planned them to in my head. You see – Paul was supposed to take the day off work to mind the children so I could go with Mum. But he ‘forgot”, and the prospect of taking the boys for a long train ride, a 5-6 block walk and then 2 hours waiting in two different doctor’s surgeries didn’t exactly thrill me so I’ve opted to stay home with them instead.

I was stomping around the house (like I always do when I’m cranky) and asking God why He didn’t slap Paul about and make him see sense. I wanted God to let Paul know how much I was depending on him, and how much he had let me down. (Again!)

I was literally throwing plates in the dishwasher when God gently spoke to me and said: “So, your plans were changed by factors beyond your control. Things didn’t go the way you had planned them to.”

“Like I’m surprised” I answered bitterly. “That man only EVER thinks about himself, he never considers me or the kids and I’m so sick and tired of it ” I mumbled.

Then God asked me: “So, what are you going to do about this? Are you going to let it ruin your entire day? Are you going to allow this to steal your joy and make you miserable or are you going to choose happiness, seek joy and realise that sometimes things go awry and end up out of your control?”

 I knew exactly where this was going.

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I’m striving to be a gentler and more compassionate mother.

My thoughts shifted to my son Harley.  I realised that every day, he is thrown into this type of situation. Every day, he is faced with the unknown. Frequently plans are changed with short notice, I make impulsive decisions (because that’s the way I am) and predictably – his autism causes him confusion when things don’t go the way that he had predicted that they would go.

Most days he acts out with bad behaviour and questions me constantly on ‘what’s happening next’ in an attempt to gain some understanding as to what to expect for his day. But often I snap at him to leave me alone and will change my mind at the last-minute and just expect him to accept it and get over it. I chastise him for being so explosive and tell him to build a bridge.

I can be a really mean mother at times and I’m not proud of it. I knew I had to make things right and change my stinking attitude.

Yes – I had been let down by my husband and was extremely put out as a result, but I knew that the remainder of the day was going to go in the direction that my choices led it. So I went and made a cup of coffee and sat out in the sunshine for a while and listened to some music until I had calmed down. I made the choice to make the most of today. My heart is heavy at the moment due to other things that are happening in my life. But how blessed am I that Jesus doesn’t chastise me when I fail like I chastise my own children?

I am so thankful that He gently convicts me of shortcomings in my own life and then shows me how I can fix them and move on. And THAT’S the kind of mother that I am striving to be for my children. I am not going to allow my own messed up heart and emotions to ruin them.

Proverbs 15:1

A gentle answer turns away wrath, but a harsh word stirs up anger.

No illness here.

I may be going out on a very thin limb in writing this post but I feel very strongly about this particular subject and the advocate in me isn’t prepared to sit down and shut up this time. It was conveyed to me recently that my children need healing and I prickled at this suggestion. More than I expected to.

I have come to realise that being both an autism parent AND a Christian who believes in healing can be a very contentious mix at times. And it’s probably not for the reasons that you think.

I believe in a powerful God who can do the impossible: but here’s what I DON’T believe: I don’t believe that autism is a sickness that requires healing.
And let me say up front that I am not nor will I ever be seeking out healing for my boys from their respective autism. They are not sick or ill or diseased, they are simply different.

But unfortunately, not everyone shares this view.

The word ‘advocate’ means to speak, plead or argue in favour of a cause that you believe in. And anyone who reads this blog would have noticed that I very much believe in my children and their potential and am not backwards in coming forward when it comes to creating awareness for autism.

See, here’s the thing. When I’m told that my child needs healing: I’m basically being told that there is something wrong with my child. I’m being told that they are not acceptable the way that God made them and that they are faulty, defective and sick. They are not being accepted for who they are.

You don’t pray for the well to be healed so why pray for healing from autism for my boys?

If they have a cold, a broken limb or a fever by all means intercede in prayer for them, but please don’t insult them and me by praying away the very essence of who they are.

Sure – I hate the anxiety, the fears, the hurt and the anguish that their differences may sometimes cause them, but I certainly don’t hate who they are. And I believe that discovering the difference between the two is paramount in understanding what autism awareness is all about.

I dislike that ordinary daily tasks are a challenge for my boys, I dislike that they struggle to just ‘be’ in many situations and I dislike that they are becoming more and more aware of their differences. But I don’t want them to feel that they need to conform to society in order to be accepted. I want society to change how they view those beautiful members of our community who just happen to have an autism spectrum disorder.

And I don’t see my children as broken, sick or in need of “healing”. I see them as Wonderfully Wired. I see them as having been created to be remarkable. Hence the name of this blog.

Asthma is an illness. Depression is a mental illness. Influenza, heart disease and cancer are all illnesses.

Autism is not. It does not need a cure or prevention. It needs love, acceptance, and people who are willing to look past the diagnosis to the heart of the person.

Look at these photos: Do these babies look “sick” to you?

No…..they are precious, they are wanted and they are loved.

I knew from the minute that I held them for the very first time as newborns that they have amazing futures and nothing is going to stop them from living their best lives.

Hope you’ve all had wonderful weekends.

Fi x

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