The littlest mechanic

Yesterday morning was an absolute shocker. We were about to leave for school – but when we went out to the car, I noticed that the battery in my car was dead. So I had no choice but to clutch start it by rolling backwards down the driveway much to the delight of two excited little boys in my backseat.

I really hope he was as oblivious as he seemed

After we’d pulled up to the school and gotten out of the car, we were walking in through the school’s main gate when Lucas spotted one of the kids from his grade and started to tell him all about our adventures in re-starting my car.  I smiled but not for very long as I watched the other boy’s eyes start to glaze over as Lucas went into the specifics of how the engine works. He had just started to explain to his friend about how he was unable to turn on the cabin lights because of the dead battery when I observed the little boy whisper something to his mate and they both started walking faster together – they were trying to get away from Lucas.It broke my heart to realise that Lucas hadn’t picked up on their non-verbal ‘we don’t want to hear your story’ clues and he kept on talking AT their quickly departing backs whilst quickening his own pace to keep up as though nothing had changed.  I comforted myself with the fact that if Lucas was unaware – it obviously wasn’t affecting him too much so tried to let it go. I kissed him goodbye and waved him off as I headed toward the middle school where I am currently doing work experience for two weeks.

But this story doesn’t end there.

This kind-hearted man made my day

Lucas was in his element

Fast forward to that afternoon and I knew that I’d have to call roadside assistance to either jump-start me or replace my car’s battery as there are no hills that I could use to clutch start it on at school. So we sat in the car for about half an hour playing eye-spy whilst waiting for the man to turn up.  And when he did, I quickly told him my problem and lifted my car’s bonnet for him to take a look. Meanwhile Lucas is hovering close by trying to get a look under at the engine and I held out my hand as if to say “stop, you can’t come over here” but what happened next really surprised me!

The gentleman who was looking at my car smiled at me and then motioned to Lucas and asked him if he wanted to help him fix Mummy’s car! Lucas beamed and nodded excitedly.

The man asked him to lift the lever that holds the bonnet up and then he asked him to help clip the leads onto the battery. Finally he asked Lucas to read out the numbers on the screen that he was holding and very patiently explained in detail what each number meant as he went along. He answered all  of Lucas’ questions properly not just with throw away answers and paid him the greatest amount of respect by engaging him and showing an interest.

Lucas smiled so widely – he was so thrilled to be allowed to help and I could tell that her felt super important right then! I was so thankful to this kind old gentleman. He has no idea what a difference he made not only to my little boy but also to me. It restored my faith in humanity after watching helplessly that very same morning as other children tried to give him the shake off.

And Lucas hasn’t forgotten it either – he woke up this morning and told me that he wants to fix cars when he gets older. And if that’s what he wants to do - he’ll be an amazing mechanic and I’ll support him all the way.

Thank you Mr Roadside Assistance, you’ve made this Mother smile and shown her that her little boy is gonna be just fine

An Impossible Situation

Sometimes parenting on the spectrum finds you in situations that are hard to navigate and it’s often impossible to figure out the best strategy for dealing with them when you are in the heat of the moment. Because these moments aren’t always black and white like regular parenting can be at times.

There have been times where I have had to make a choice of which child to comfort when some situations arise.  And that’s an incredible hard thing to have to do!

Like yesterday, we were all driving the 6 hours from my Mum’s house to ours and had stopped for lunch. I had taken the boys with me to the bathroom and was helping Lucas to wash his hands by turning on the tap for him, only I accidentally turned on the hot tap causing him to burn his hands. He let out an ear-piercing scream from the pain and Harley (who was standing next to him) reacted strongly to the sudden loud noise and thumped his little brother HARD on the back.

Lucas was still crying from the burn and now also from being hit and his screams got louder causing Harley to throw his hands over his ears to block the continued screaming.  But, Harley was now kicking Lucas because he was still screaming and it just went around and around in circles.

Lucas kept screaming – Harley kept kicking Lucas because he was screaming – Lucas screamed from being kicked. And repeat.

I was in an impossible situation because I needed to get cold water on Lucas’ hands to help ease the burn (who wouldn’t let me put his hands anywhere near the water because he didn’t want to get burnt again) and trying to calm him from being hit and kicked as well as trying to comfort a distraught Harley who was in full-blown meltdown.

I couldn’t do it and had to make a quick on-the-spot decision to deal with the most important issue; which was focussing on the burnt child. I then had to put myself physically between the boys to take the force of Harley’s kicking to shield Lucas all while trying to get him to stop crying, run the water over his hand and show Harley that I was there for him.

To add to this: at the moment I have a bad leg and knee from a running injury so I also had to ensure that he didn’t kick that leg during his meltdown. It was a challenge I can tell you!

Eventually Lucas’ cries turned into small whimpers and Harley started walking in circles on the spot looking at the floor. (This is part of how he calms himself) and I was able to gather a boy under each arm and hug them closely.

I tried my best to talk to them both about what had just happened but honestly: I didn’t believe that either of them was deliberately upsetting the other. So I asked Harley to apologise for hitting and kicking and I apologised to Lucas for turning on the wrong tap and causing him to scream and hurt Harley’s ears.

It’s been 24 hours now since this happened but I am still unsure if I have handled this properly.  Lucas’ hand is ok, the boys are best buddies again and it seems to be forgotten.

So why am I still upset over the whole episode?
Why is it still haunting me? Why can’t I just get on with it?

Because mothers are harder on themselves than anybody else is.

I’m interested to know if anyone else has any tips on how they might have handled this situation?

Any thoughts?

Just look at the ground Mum …

I will not enter a JB HiFi store if I can avoid it. It’s not a bad store, the staff I’ve encountered there have always been lovely and their prices and products are good. And it’s not just my local one that I won’t go into, it is every franchise. Anywhere.

This store kills me. But it’s not a superficial reason that makes me dislike it, it’s because this store does complete overkill on their in store advertising and point-of-sale. There are banners, pricing signs and posters hanging from every spare space of ceiling and covering every spare wall and surface that there is. I literally cannot cope with the bright yellows and excess of signage because it confuses and overloads me visually.

As long time readers would know – I have vision problems. I have had a corneal transplant in my left eye because I was born with a degenerative eye disorder. So this kind of in-your-face promotional onslaught actually hurts my eyes and gives me headaches. And this is because my eyes don’t work together but rather as individuals hence the reason that I have trouble knowing where to focus in places like this.

So I avoid them if possible.

Today we went down to the shopping centre to grab a few things and Harley pulled me by the hand leading me towards that very store. He wanted to go and look at the Skylanders in there and I shook my head and quickly explained why I couldn’t handle being in that store.

“Just look at the floor Mum” he said.

I turned around and looked at him asking him to repeat it.

“Look at the floor Mum. That’s what I do when you take me somewhere and it is too loud or there are too many people. If I look at the floor and count the tiles or floorboards, my brain focuses on that instead.”

I was amazed!

I asked him: “Is that why you are always walking into people and poles and stuff when we’re out?”

He nodded and smiled.
“Yeah, sorry about that Mum. I’m just looking after my brain”.

I LOVE that my boy has begun to develop ways to self-help and that he is starting to be able to verbalise them. I LOVE that he is finding a way to fit in this world. I love every little unique and quirky thing about him.

And hey…as far as I’m concerned, if counting tiles is what it takes for him to focus, count away my boy!

Judging books by their covers…

 Most of us know the phrase: ‘Don’t judge a book by its cover’ which basically means that there is a lot more to EVERYTHING than what you see on the surface.

And it’s certainly very true that its easy to jump to conclusions when we look at other people in our lives. Too often we form opinions based solely on appearance. And I too  have been guilty of this a number of times myself, but mostly – I come from a place where I believe that every single person has a story and that no one’s story is any less important than anyone else’s. But sadly – in today’s society, it is a view that isn’t held by many.

Because, like so many other hidden quirks, nuances and physical attributes, you can’t always tell if someone has a disability just by looking at them, especially when it is a disability such as high functioning autism.

I have lost count of the number of times that people have shown surprise upon finding out that my boys are on the autism spectrum. And I never quite know how to react to their surprise. Does their surprise indicate that to them – my child doesn’t look sick enough to be diagnosed with anything? Did they expect my boys to look more, I don’t know, handicapped? Or do they simply think that I have just jumped on the latest fad bandwagon whereby getting your child a trendy diagnosis is akin to acquiring the latest apple accessory?

Do people have an idea in their heads of what autism should look like? And do my boys fail to meet their expectations accurately? Were they expecting them to look more disabled? Would a wheelchair help to sell it?

I really don’t know the answer to any of that. But I have to say that every time that I find myself in a situation like this, I am torn.  A part of me feels that I somehow, on some warped level, need to defend their diagnoses and PROVE that they really do meet the diagnostic criteria despite the fact that they “look” completely “normal” at that given moment. I feel like I am under the spotlight as a mother and I want to blurt out all the challenging behaviours in an attempt to provide evidence that my child isn’t always this charming, well-behaved and loveable.  Because isn’t that what some people associate autism with? Misbehaving, out-of-control children who have no future? Why do I feel the need to feed that incorrect assumption? Why don’t I focus on the “good” parts of autism?  Because I want to be believed. That’s why.

I read that back to myself just now and I am disgusted.  Not because I feel bad for painting a true picture of how our lives sometimes are, but because I feel like I need to justify the good and very normal behaviour that my kids are displaying in order to prove that they truly do have a diagnosis of autism spectrum disorder.

Because any parent of a high functioning child on the spectrum will attest that the child you often see in public is often the complete opposite to what they live with. They also know how hard it is when your child appears “normal”. Because they want to celebrate their child’s success in “fitting in” but know that there will be a huge price to pay for it later. And it’s a price that no one else will have to experience.

But here’s where I need to provide one very big and important disclaimer: When we tell you the bad stuff, the challenging stuff and the stuff that puts an awkward feeling in the air – we are not trying to extract sympathy for ourselves or even for our children.

What we are saying is that society needs to sit up and pay attention because these regular looking but struggling children will one day grow into adults. And currently, there are adults in the autism community who are overlooked and ignored because society has this ill-conceived misconception that high-functioning autism is no big deal.  That because these people look like everybody else that they are just attention grabbing complainers using a diagnosis to explain away their weirdness or lack of social awareness.

Lately – I admit that I have lost the will to keep advocating for autism. Because it’s exhausting and I don’t have the time to explain it in depth to people who really aren’t that interested in learning about it anyway.

Although the passionate side of me really wants to spread awareness far and wide, the sensible part of me says that there is already enough awareness out there. But what there isn’t enough of is; compassion, understanding and a willingness to learn how to stop judging books by their covers.

Autism is no longer a word that is barely heard of. Almost everyone in the western world have heard the word. But how many of those people have actually taken the time to find out what autism actually is? Or how autism presents, or even how incredibly huge the spectrum is?

The book covers of autistic people may be bright, fancy and attractive to look at , or they may be plain, simplistic and understated. But until people take the time to read these books, understand these books and really read between the lines of what their messages are: They will never be appreciated for how wonderful and valuable they really are.

Once you take the time to read them, you will discover that each one is unique, fascinating, sometimes horrifying and tear inducing but also exciting, thrilling and suspenseful.

And aren’t they the ingredients of all the best sellers out there?

Never judge a book by its cover.

Never, never ever.

Stilettos and Joggers

I was telling a friend the title for tonight’s post and we laughed about it.

We were discussing the act of walking in another person’s shoes and the difficulty factor involved when there are kids with special needs as part of the package.

I said that if the shoes you were made to walk in on another person’s journey were your own worn-in comfortable joggers – the walk would a lot more pleasant than if you were to walk the same path wearing unfamiliar and un-sturdy stilettos that pinched your feet every time you took a step.

And we agreed that as Mum’s of SN kids, we were often not given the option of footwear and were expected to sprint in heels regularly. But we’re not allowed to complain because this is our lot in life right? Somehow on some level we deserved to have more difficult children, or we were given them because “God” gives his toughest challenges to his strongest warriors (or insert any other cliché that SN mothers have been told to alleviate the speaker’s own feelings of guilt).  But the thing is – none of us put our hands up for this. This is just the way it is.

Lately – I am frequently overwhelmed with feelings of inadequacy. I constantly worry if I am doing enough to help Harley. I think about his future and wonder if he will be able to navigate adulthood or whether it will send him into frequent shut downs or worse – public meltdowns. And if he does shut or melt-down regularly – will he be able to hold down a job? A relationship? Friendships?

Last week was the school Easter Hat parade. Harley had told me in the morning that he didn’t want to go but I had a busy morning ahead of me so I made him go anyway. I turned up a few hours later to watch the parade and noticed during the event that Harley was dangerously close to losing it. As soon as it finished I went over to grab him to take him home early but knew by the look on his face that I was too late.

His class was the last one to walk around and he was on complete overload by the end. I walked him out of the auditorium and over towards his classroom when he turned to me and punched me in the stomach, he followed that up with a few kicks to my shins and some head butts for good measure. He was sobbing and moaning and clearly needed a safe place and I would have thrown him in the car if I could have found Lucas, but he had run off somewhere else and was somewhere amongst the throng of other parents and students.

I let go of Harley’s hand to take a phone call. It was Ella calling from over the other side of the school in the middle school area. She had somehow grabbed Lucas and was calling me to ask me to come get him because he was lost and looking for me. But by the time I had hung up from the call – Harley had taken of at full speed.  I tried to follow him but he was too fast.

My phone rung a second time and it was Ella again telling me that she’d seen Harley run past her and she’d noticed that he was terrified and told me which direction he’d headed in.
I eventually found him cowering inside a tent inside one of the junior school classrooms. My joggers had become stilettos again and I turned and walked out of the classroom alone and burst into tears.

Somehow, someone had alerted the head of junior school and she had gone into talk to him. Once he came out again to me she asked him to apologise to me and I was floored?

In all these years, it has never occurred to me to ask him to say sorry for hurting me whilst in the midst of a meltdown.

I just told myself that it was part and parcel of having a child with special needs. I told myself that he wasn’t in control of his emotions so therefore he didn’t need to make amends. I usually just nurse my wounds and try to pretend that it didn’t really matter.

But she pointed out that whilst he may have been unable to control himself at that time, he still needed to say sorry to me once he was calm again. She asked me (rhetorically) how he would go in the workplace if he never apologised for his outbursts. (If they happened).

I knew she had a really great point and I wondered if I had been strapping on stilettos when I should have been able to stay in my joggers all along?

Have I made things harder for myself by “allowing” certain behaviours that I would never allow from a typical child all under the guise of “he can’t help it”. Have I permitted my child to push me into a corner by not requiring him to take ownership of his actions.

Yeah….I really think I have! And discovering this about myself has opened my eyes to a whole new way of parenting.  I’m really not doing Harley any favours by not teaching him acceptable behaviour and if I continue to make excuses for him when he hurts me – how will he ever learn to treat other people the way they deserve to be treated?

It’s a tough question but one that I have had to eventually ask myself. I’m tired of running in heels.

Now

I always wanted to be a mother for as long as I can remember. I have never been a particularly goal oriented person but having children was always right up the top of my to-do list. And I was blessed to have three healthy children which is far more than I deserve and I am thankful for this – every day of my life.

Really I am.

I don’t take this lightly – I know that there are a lot of women out there who go through years and years of heartache and loss and I will never understand why life deals crappy hands to some people. Life can really stink sometimes…it is unfair and it is harsh. Which makes me even more thankful for the blessings that I do have.

But towards the end of last year, I started to go through a kind of ‘shift’ in emotions. I found myself resenting the kids more and more and a number of times I told my husband that I wish we’d never had them in the first place. I tried to ‘speak to my soul’ and tell myself off for being so awful because I could hardly believe myself that I had allowed things to get that bad.

Of course I didn’t mean it but what I did mean was that I was losing who I was. I had forgotten what it was like to be “Fiona” and not just someone’s Mum or someone’s wife and I didn’t know how to get me back again.

I had decided last year that I would take the first year of Lucas’ schooling off before going back into the workforce and I can see now in hindsight that I wasted an entire 12 months. I achieved nothing except gaining weight, watching TV and browsing around shopping centres to kill time. No wonder I was miserable. But things are changing now in a really big way. I’ve taken the proverbial bull by the horns and thrown myself head first in to a number of new activities; boot camp, studying and even some part-time work. And I am once again looking after my mind and soul. I am taking care of ME.

As I mentioned, I have joined an outdoor fitness boot camp group that I’ve been going to three times a week and I’ve pushed myself harder than I ever thought possible. I’m so surprised at how much I really do love it and look forward to it. And whilst I still have a looooooong way to go to achieve my final fitness goal, at least I’m a helluva lot closer than I was last year! I have more energy, more motivation and a lot more self-esteem.

I’m eating better and sleeping more and just loving life at the moment.

I tried to exercise today, but my asthma let me down and I couldn’t breathe properly. There was a lot of smoke in the air and as soon as I tried to do the warm up exercises it became clear that I wasn’t going to be able to finish the session. So I decided to go for a slower walk for the hour instead and I took my friend’s new baby with me so she could do her workout in peace. And this beautiful baby boy taught me so much more than I ever thought possible.

As I walked, I watched him sleeping through the hood of the pram. He was so calm, so tiny and so helpless. He was safe and protected from the outside world and I thought about the fact that my friend had put so much trust in me. Her brand new son, her biggest treasure was in my hands and I wasn’t going to take that lightly at all. I felt honoured to be given such trust and I thought about how similar it is to how God takes cares of us. How He looks down on us and protects us from the world. How we were so helpless and insecure before we found Him. And because I know He is my shelter and my safeguard – I can also rest peacefully in Him. And that’s what I’ve been learning how to do.

While I walked I reminisced about my own little boy Harley – and remembered the many times that I used to walk around the block with him in his pram over and over again trying desperately to get him to stop screaming. I was always in tears myself as I walked. I would rock that damn pram for literally hours because my baby hated being held. He was so resistant to the outside world that it completely baffled and confused this once sanguine and outgoing mother. I sighed because I know that I barely even remember Harley as a baby. Sure I’ve got dozens of photos but my memory has blocked out a lot of his babyhood because it was just too painful. At the time, I thought I was the worst mother ever because he didn’t want me near him. I didn’t understand him and everything that I read about raising babies just made me feel worse because they were all written for parents of children who were developing typically.

But I didn’t know that I was dealing with autism. I had no clue that my boy’s sensory system was under constant assault from the environment around him. I didn’t know that taking his pram through a crowded shopping centre with bright lights, loud noises and crowds would do the reverse of calming him.

I just didn’t know.

But I do now.

I have learned how to show him love in a manner that HE understands. He has taught me how to navigate through the invisible barrier of communication and I now know when to leave him alone. I may not have had those moments of bliss where I got to gaze at my sleeping baby like I did today, but I have more than my share of those NOW.

And NOW is what I am going to continue to focus on because the past is only a reminder of how far I have come. The past is part of what has shaped who we are but it now serves as a reminder of just how far HE has come and of all the good times up ahead. I have fallen head-over-heels in love with my children all over again since I stopped to take care of me.

It was all about taking my eyes off what I don’t have and learning to be thankful for that which do have, because;

“Sometimes God lets you hit rock bottom so that you will discover that He is the rock at the bottom”.
Dr Tony Evans.

Psalm 61:22 From the ends of the earth I call to you,
I call as my heart grows faint;
lead me to the rock that is higher than I.

Fi x

Consequences – choosing the right door.

Image from: image by freeimageslive.co.uk – photoeverywhere

I haven’t blogged much lately – it’s been busy here with me commencing studying and the kids going back to school and therapies etc.

This year – Ella is in her second year of high school in grade 8, Harley has gone into grade 4 and Lucas into grade 1. They have all settled in nicely as far as school goes but as is usually the way – home life hasn’t been anywhere near as smooth sailing.

Harley has rediscovered anger and aggression and Lucas has begun to push boundaries in a big way again. But by far our biggest issue at the moment is trying to teach them both about consequences. It continues to be an extremely exhausting uphill battle.

Neither of them (but particularly Harley) seem to be able to grasp the concept that what they say and do now will ultimately dictate whether or not they are praised or disciplined for their behaviour(s) in the near future. It’s frustrating and so far I haven’t seen a lot of progress. But I’m not giving up just yet!

I’ve been asking questions such as: “How do you teach a child who isn’t able to even name their own emotions (let alone realise that other people have feelings and desires)  that they need to factor all of that in when they are making decisions that may also affect others?”

And: “How do you correct them without making them feel like they have failed or broken some unspoken rule that they aren’t aware even exists?”  I don’t want to break their spirit and cause them to feel useless or stupid.

Well – I’m honestly not really sure because we’ve also been on a steep learning curve as we try to parent without having any idea what we’re actually doing. But the good news is that WE as parents are able to learn from past parenting failures and therefore use a different approach the NEXT time that a situation arises. Because WE’VE learned that what we were doing just wasn’t working. So we can no longer use the excuse that “they don’t get it” because the onus falls on US to become teachable instead. Especially if we hold any hopes of actually training our boys to be responsible and caring adults one day.

Admitting that we haven’t got it all together is paramount to achieving success in any aspect of parenting. Stepping down off the pedestal and continually looking for new and better ways to parent is the only way that we will ever find what works for us and our children.

*****

This week , I was driving along in the car with my Mum and Ella. I pulled up to a set of traffic lights and looked into the rear view and saw my beautiful teenaged girl sitting there quietly singing along to her iPod. When she noticed me, she smiled and gave me a cute little wave and I immediately got a flashback to her at 18 months old sitting in her car seat kicking her legs and laughing as we drove along. She was SUCH a delightful baby. When she came along,  our lifestyle barely changed, our social life continued and we only ever had to say “no” or “stop” to her and we would get immediate obedience and absolute compliance. She never pushed boundaries (and still doesn’t), she never threw tantrums and she always seemed to slot in effortlessly anywhere that we went.

But guess what? We parent our boys in the EXACT same way that we parented (and continue to parent) her.The house rules and behaviour requirements haven’t changed, the expectations are exactly the same and whilst she continues to be pleasant to live with – the boys are increasingly challenging and pushing us to the limits of our patience.

And this is why we KNOW that we aren’t necessarily crappy parents so much as we need to find a different but equally as effective method of teaching the boys. It’s not that we think Ella is a better child, it’s just that she learns in a more mainstream way than they do and she adjusts to and understands the unspoken rules of society much better than her brothers. We were never in a position where we had to research and trial other less conventional methods of parenting with her, the methods that ‘everybody else’ used worked for her. We didn’t realise how just fortunate we were.

And because we had her first – I can understand why parents of children like Ella wrongly assume that autism is no more than a badly behaved, badly parented and spoiled child. This was one of the factors that led me to starting this blog. I want to scream from the rooftops: IT’S NOT ALWAYS THE PARENT’S FAULT!!!!!

I digress……

*****

I truly believe that ANY child whether they have a special need or not can be taught anything. It’s just a matter of finding out what works for each child individually and not applying a one-size-fits-all approach to learning. I am all for it in the classroom and in social situations, I want my boys to be given opportunities to flourish and I regularly quote the phrase: ‘Fair isn’t every child getting the same thing but every child getting what they need’. But embarrassingly – It’s only been recently that I have started to apply this same approach to my parenting style and start to think outside the box to find a way that will work for US as a family.

I have read a LOT this past week on teaching consequences and the best piece of advice that I found was to go back to the tried and tested social story.

So guess what I’ll be doing this week? I’ve also decided to try to make the most of Harley’s visual brain and have settled on the idea of teaching the boys using a RED door for a bad consequence (STOP) and a GREEN one for good (GO). Because it will be much easier for them to visualise and recall which door that a particular past behaviour has led them to so that they can LEARN from their past experiences than for them to recall a whole bunch of confusing and meaningless words.

And once they’ve learned how to connect behaviours to the right or wrong doors – we will be well on our way to success. Wish me luck! I hope I’m onto something!

Once it’s completed I will post it here and on the Wonderfully Wired Facebook Page so stay tuned.