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!

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

MY kid is spectacular!

Today was a good day.

It wasn’t the best day but it wasn’t the worst day either. It was the day of the swimming carnival at my kid’s school and this year was the very first time that Harley has attended. It’s been the 3^rd year that he has been old enough to go but I had no success in even getting him there in past years, so his attendance alone was a cause for celebration.

He announced to me on Monday morning that he would like to catch the bus with his sister (Ella) and so I reluctantly signed the permission slip. I was proud of him but I admit that I was also a little uneasy. Don’t get me wrong – I’m all for helping him to stretch his comfort zone a little and I think it’s good for him to try new things but if I was to be completely honest, I was a little nervous having him experience so many new things at one time.

• Attending the carnival for the first time.
• Catching a bus with lots of other children.
• Surviving a crowded, noisy smelly environment for 6 hours straight with no escapes or safe corners.

But I prepared him the best that I could. And yesterday afternoon I had a chat to Ella and asked her if she would please text me at intervals throughout the day to let me know how her little brother was doing because *I* needed to know that he was surviving.

She promised she would and true to her word, she updated me every hour with messages like this:

God bless her - she is such a gem of a child.

So after receiving Ella’s second text, I decided to go for a long drive and I blasted my favourite music in the car singing along loudly at the top of my voice. Simply: because I could and it’s something that I LOVE doing!

Playing any music at ALL is a luxury that I don’t get to indulge in when Harley is in the car, so today I made the most of it and rocked it out big time.

And I may or may not have belted out some Kelly Clarkson, Alanis Morisette and just a bit of Katy Perry – you know – power songs and all that, but I digress….

But today was just what I needed. I had a great day doing whatever the hell I felt like and managed to refuel myself enough to be able to tackle any surprises that the afternoon may or may not have in store for me.

And thank goodness that I did.

Because when I watched Harley alight from the bus and walk towards me hand-in-hand with his big sister, my heart lunged into my shoes. I knew the face that he was wearing all too well. I could read the anxiety, fear and fright in his eyes and knew that he was trying so hard to hold it together. Bless him. I also knew that we only had limited time before the cork was released from the bottle so-to-speak and that I had to act fast. The rumblings of an explosion were there…. He was moaning quietly and pushing his head into my side. He was flailing his arms around floppily so I grabbed his little hand and headed for the office to sign him out early.

But Lucas wouldn’t leave. He wanted to change out of his swimming gear into his clothes and was refusing to come to the car with me. He started to pitch a fit and I didn’t want another upset child on my hands so I sent him to the bathroom with Ella to change.  But they weren’t fast enough and Harley couldn’t hold it in any longer.

So mother and son sat on a step together away from prying eyes while my little boy broke his heart. Tears ran down his cheeks as he alternated between cuddling into me and thrashing uncontrollably. He WANTED to be close to me but he just COULDN’T. His body was fighting him and his entire sensory system was out-of-control. I did what I could but knew I had to ride it out. Eventually he calmed enough for me to carry him out to the car and take him home to his safe place.

**

It was hard on me to drive home watching him wipe away his silent tears out of the corner or my eyes, but I still couldn’t get over the immense sense of pride that I had at that very moment seeing how far he had come.

My boy achieved so much more than I would have ever thought possible today.

• He pushed past his own discomfort to display great sportsmanship by going along and cheering on his friends and classmates even though he himself is a non-swimmer.
• He dealt with a different format for the day and with not always knowing what was coming next or where his teacher would be at any given time.
• He caught the bus like the rest of the kids and went to a pool that he had NEVER been to before and did all this KNOWING that there would be loud noises, lots of kids and strong smells to contend with.

He has gone from a child who refused point-blank to even consider attending the swimming carnival only 12 months ago to a child who achieved SO MUCH personal growth today. And this Mama is so SO proud of him.

And for the record; I am not trying to teach my son to conform, to be like all the other kids or continually expose himself to situations that cause him so much pain and displeasure. Nor am I trying to change him into a ‘normal’ child. I am encouraging him to recognise what I have always known about him and that is that not only will he succeed in life but he will excel.

He can do anything that he puts his hand and mind to and he is amazing, strong and courageous.

And that’s no different to what ANY parent wants for their child is it?

This is my favourite part of today. Watching him decompress and reset his vestibular system by indulging in an old-fashioned game of upside-down TV watching

The Spinning Question Mark

Last night as I was putting Harley to bed, he asked me if I would stay with him and talk for a bit because he wasn’t tired yet. So I lay down next to him and we started chatting about the day and what we had been doing. We played the butterflies and cockroaches game.

I asked him what his “butterfly” was (his favourite part of the day) and he told me that it was playing the Wii (no surprises there). Then I asked him about his cockroach (not so good thing that happened that day) and he told me that it was the shopping centre that we went to that morning to have a coffee together as a family. It was too noisy and smelly apparently.

And then he started giggling so I asked him what he found so amusing. He looked at me and said: “Mum, every time we play the butterflies and cockroaches game I have to try not to laugh”

“Oh” I said surprised. “Whys that?”

“Because one of the butterflies that I can see flying around my head always bumps into the other butterflies. And it’s funny.”

I was surprised but really curious to learn more so I asked him; “Do you see a cockroach in your head too?”

He nodded and said: “Yep, he is really tall and has a walking stick and sits down next to me. He is really grumpy and shouts at the butterflies.”

We laughed together and I decided to explore further because I was fascinated to learn that my boy – like so many other individuals on the autistic spectrum – can truly see in pictures!

I asked him if he gets a picture in his head if I say the word ‘car’ and he nodded. So then I asked him if it was Mummy or Daddy’s car that he pictured and was astounded by his response. “It’s not anyone’s car Mum. It’s a car that my brain made up. It’s blue and white. It’s the same picture I see for the word ‘car’ every time.”

So I thought I’d take it further.

“Harley, what do you see if I say the word ‘Volkswagen’? Do you see that same car again?”

“No”. He said. “I see an empty box with a big question mark over it spinning around and around because I don’t know what a Volkswagen is”.

Wow. I knew I was onto something so I dug deeper and asked him: “Do you see a spinning question mark a lot?” 

He nodded. “Yes, every time someone says I word that I’ve never heard before. It is what I see when I don’t understand what the other person is talking about. I hate it when I see that question mark. I feel stupid and that’s why I sometimes get angry”.

I was even more amazed by now! I tried again: “Harley, when I say the word ‘kitchen’ do you see our kitchen or someone else’s?” I asked.

“I just see a big white area with a sink and a lady flipping pancakes on the stove”. He said. “I don’t know who the lady is so I call her kitchen lady”.

“What about if I say ‘dog’. Do you see the same dog every time?” He nodded. “What kind of dog do you see?” I asked him.

“A Chihuahua. Because they are small and don’t frighten me” He explained.

I also learned that when he hears the word ‘pool’ he sees a big empty blue hole in the ground with a person standing in it. There is never any water in it because the word ‘swimming’ pool has water but ‘pool’ doesn’t! And then he told me that when he is in the school playground, he sees pictures on lots of different TV screens.

“Sometimes when I’m playing with *Ben, I see myself on a big screen and I’m standing behind myself watching what I do. And because there are lots of other kids around too, I see them all on smaller screens. But they have all got the sound turned up too high and are all on different channels to each other. I can’t understand what any of them are saying and they all try to be louder than each other and I can’t work out how to turn any of them off so I have to run away.”

By now my mouth was almost hanging open! This was a massive revelation to me!

“And”. He continued “At church time at school, it’s like there is one screen for me with a question mark spinning around inside it and everyone else’s screen doesn’t.  If it is too loud or too confusing for me, I see myself inside my box hugging my teddy and he listens to all the noise for me so I don’t have to.”

I had been dying to ask him about how his brain goes when people talk to him really quickly. I know from experience that he doesn’t cope with information overload so I was curious to find out if he had developed a technique to overcome this.

“So Harley” I started. “When Mummy or somebody else talks to you and uses a LOT of words, what do you see in your head then?”

He sighed. “Well, when they first start talking, my brain shows me pictures of what they are saying and then before I can join the picture together to understand the sentence, they have already started a new one. It’s so frustrating so now I only answer the bits that I hear and understand.”

He followed with: “You are good at this now Mum, you know that I can’t do that and you wait for me”. (I think he meant  that I wait for him to “process” before speaking more). And yes, I do!

I smiled down at him and he reached up and gave me a butterfly kiss on my cheek with his eyelashes. He then giggled and said: “Mummy, that butterfly won’t get lost and bump into other butterflies. It is in my eye so I’ll always know where to find it. “

He looked back at me and stated:  “I love you Mum, I’m tired now so please go away now”.

Amused at his ability to be brutally blunt but charming at the same time I smiled and pulled the blankets up on him, kissed his forehead and ran to get a pen and paper so that I didn’t forget any of this.

My kid – like ALL kids and adults with autism – has a truly remarkable brain. He is definitely teaching me more than I could EVER hope to teach him. He is wonderfully wired and I wouldn’t want him any other way.

Onwards And Upwards My Friends…

I realised yesterday that my perspective has shifted a lot in the past few years and my mother’s intuition has been fine-tuned a lot more than it has ever been in the past. And this new perspective has helped me to view an incident that occurred yesterday in a brand new light. In fact – I was able to turn the negative into a very big positive and it’s the little things like this that keep me motivated.

By now most of you would know that I am currently staying up at my Mum’s with the children as school doesn’t go back until the end of the month. There is a ten day festival going on up here at the moment which is great for families and gives us all something extra to do at very little cost.

The entire main street of town is closed off for about 4 blocks and the streets are lined with performers of all varieties. It runs day and night and does include a lot of loud music, huge crowds and a lot of different smells, sights and new experiences. (Which I’m sure is a sensory overload NIGHTMARE if you have autism).

So bearing that in mind, I have given the boys headphones and chewy toys and have tried to keep the exposure to the festival minimal and closely monitored, however yesterday – despite my best efforts, it came close to ending very badly indeed!

We went to church in the morning (If you know anything about Pentecostal churches is usually very loud, crowded and in your face), and then we met some friends for lunch. Afterwards we decided to go into town and go for a stroll down the street to check out the action. I watched the boys closely and they seemed to be doing wonderfully. I smiled to myself because a few years ago we wouldn’t have even have attempted to do all of those things in the one day let alone attempt an event like that!

I realised our progress and started to relax a little and enjoy myself. I stopped to listen to a few bands and chatted with strangers and just had a really great time. We walked another little distance when we passed a performer with a very loud microphone and a huge crowd of people gathered around clapping, dancing and watching.

I stopped with Mum to have a listen for a few minutes until I saw Harley freeze……he stopped dead in his tracks, clapped his hands over his ears and tears started rolling down his little face. He looked up at me with his eyes pleading and said: “Mummy, there is too much loud, too much people…I need to get out, I need to go home now”….

So I grabbed his hand and dragged him into the closest shop and sat him in a quiet corner on the floor wrapping myself around him while covering his ears. I held him tight and he eventually relaxed into me saying: “Thank you, thank you Mummy, you are the best Mummy ever”.

I sat there and went through my options in my head. Our car was up the other end of the street and we’d have to walk about 2 blocks to get back to it…..that wasn’t going to work…..I spoke to Mum and we decided that Ella and I would walk back to the car and I would drive as close as I could to this shop and pick up Harley, Lucas and Mum. It worked brilliantly and peace was restored for another day!

And when I got home again, I began to think the whole thing through in a bit more depth. I started to mentally list all the areas of progress in my head.

1. Harley handled an entire church service in a new environment with people he had never met previously.

2. We went for lunch in a place that he’d never been before.

3. We were able to walk 2 whole blocks before Harley showed signs of not coping.

4. Harley not only recognized himself that he wasn’t coping but he was able to communicate that to me without screaming and melting down. He was able to use some of the anxiety coping techniques that we’ve been teaching him WHEN HE NEEDED THEM and for me….this is HUGE progress!

A few years ago – he wouldn’t have been able to let me know that he was close to losing it….he wouldn’t have recognized that split second and make the decision to ask for help – he would have just exploded and I would have been angry at myself for not reading him better and the rest of the day would have been a write off because coming down from a mammoth meltdown can take literally hours! Not to mention the fact that it drains him as well as us.

Harley didn’t reach the point of no return yesterday because it was nipped in the bud so to speak. Afterwards – told him how proud I was of him for using his words. He is doing remarkably well at learning that if he talks about something that I can then help him. (This is a phrase that my dear friend has been drumming into him for a while now). I’m seeing so much exciting stuff going on with him (in particular) lately that it warms my heart.

And lastly – I want to say to any parents of younger kids who seem to be massively unpredictable and hard work at the moment…..go back and read some of my earlier posts and read about the struggles I had with Harley only 3 years ago. I remember parents of older kids telling me that ‘it will get better’ and I didn’t believe them. I couldn’t believe them.

But you know what? It does, it really does. It may only be small things at the moment but combined with all the other ‘small things’ from the past (almost) 3 years since I started this blog – they all add up to massive progress.

And its only onwards and upwards from here…

A new year brings new things..

I learned many years ago that making new year resolutions was never something that was gonna work for me. I just don’t have the stick ability for anything.
I’m convinced I have some form of ADD or as my friend calls it: ADOS (Attention Deficit …Oh Shiny!)

I’ve never been good at finishing things that I start and I tend to give up when things don’t come easily to me. It’s not so much that I doubt myself or my own abilities so much as it is due to boredom overtaking me. Most of the time I simply couldn’t be bothered putting effort into things that I no longer enjoy doing, so usually….I quit. (And no, I’m not talking about jobs or anything in the workplace but personal hobbies etc….I’m not THAT bad!)

But thats the funny thing about parenting: Even when I’m not succeeding at it and continue hitting brick walls – I know that its not as simple as just throwing in the towel and walking away. However – having said that: I’m no Carol Brady – I still want to walk and give up at least once a week….I’m so far from the perfect Mum it even frightens me!

But here’s what I’ve discovered about myself: When rough times hit (and they do frequently when you’re raising kids like mine) I eventually get over myself and stick at this parenting gig not because I *have to* but because I *want to*. And there’s a massive difference in the two.

I have found that unless I’m doing something that my heart is truly in and am passionate about, I struggle to stay motivated. And yes…. I know that I have revealed some pretty massive character flaws here, but there you go. This is me. Take me as I am.

But the up side if all this revelation is that my kids definitely fall into the ‘totally passionate about and would do anything for’ category. There is literally nothing that I wouldn’t do for them.

Thats right: Nothing.

****

My sister was always career minded. She knew from a very young age that she wanted to be a graphic designer, so she went to Uni and became one. and shes a brilliant one too. She’s a go-getter and a doer. Always has been.

I however, have never really known just what I want out of life. I’m a bit of a floater you could say. I went through a small phase where I thought I didn’t want kids but then realised that being a mother was actually the ONLY thing I really wanted.

And I loved it from the second my daughter was born. I had found my calling. THIS was what I was going to be….a stay at home Mum. Forever.

But guess what I found out? Kids grow up. They become more independent and require less of you. Even though I consider myself fortunate for having my boys need me for longer (being slower to reach milestones etc) even they with all their daily struggles are becoming more and more capable by the day.

I would still have to say though, that for both of them (but especially Harley) – their biggest struggle by far would still be managing to cope and survive in the school environment. Over the years he has had some wonderful aides and therapists assist him and encourage him to reach above what he believes himself to be capable of and I cant thank them enough for that. We have seen incredible progress due to their commitment to helping him shine. Which is why I have made a big decision.

I no longer have children at home with me during the day and December marked the ending of the 12 month break I gave myself after my baby started full-time school. I am ready to re-enter the workforce but I am not interested in just earning a few dollars in a casual job. Nor am I interested in just doing whatever comes my way, no, this time I am the one with the passion and the go get attitude because I have decided to do something that I always said I would NEVER do.

I am going to go and study to be an education support worker (teachers aide). Because I want to be the one to help other kids reach their unlimited potential. I want to be the one to give the high fives when they achieve what they never thought possible and I want to be the one to give back what so many have given to my boys. I want to do something worthwhile and combine my knowledge of special needs as a mother with that of a classroom helper.

This isn’t big for some people, but if you know me and my aversion to sitting still and studying – it’s huge!

And my heart is in this one, so I know I will see it through.

And now that I’ve put this out there in big bad blog land……there’s no turning back….eeeek!

Still So Much Good Stuff To Come…

Me and my loudest child. Still not louder than me though

I’ve always been interested in people. I love all those little online personality tests and quizzes and love to learn about what makes other people tick.  I’m your typical sanguine – always wanting to be with people and not enjoying my own company very much. In fact – I pretty much hate being by myself – I get bored and need the people-to-people contact every day or I start to nosedive emotionally.

I also think that part of the reason why God gave me the kids that he did is because he knows how much people fascinate and interest me and he knows that I am the kind of person to dig deeper until I’m satisfied that I’ve learnt all that I can learn. Autism definitely adds a whole other layer to my kid’s personalities and a lot of the rules for typically developing kids don’t apply when you start to throw nuances like : sensory issues and still-developing social skills into the mix.

I have written a few times before about The Five Love Languages and how they helped me to better understand why Paul can be such a pain in the butt sometimes.

  Whoops! Did I really write that?

What I MEANT to say was that learning about love languages helped me to realise that he does in fact love me but doesn’t (even close to) speak the same love language that I do.

In a nutshell – There are 5 languages.

1. Physical Touch (not sexual)

2. Words Of Affirmation

3. Quality Time

4. Giving and Receiving Gifts

5. Acts Of Service

And everyone has a primary love language and usually a secondary one or two as well. They are the way that we show others that we love them and what makes us feel loved the most.

****

For example: My primary love language is Words Of Affirmation with physical touch and quality time following closely behind. That means that I give love via what I speak and write to people. I am more aware than a lot of people of the absolute power that words can have on a relationship in either a negative or positive way. The best way to hurt me is to ignore me, use harsh or insulting words to speaking to me or to withhold kind and encouraging ones as well. I am careful what I write or say to people because of this.  I am also a big hugger and I love to spend time with my friends.

 (And amusingly enough – I hoped to churn this post out a few hours ago but I got waylaid by chatting to a friend making this a perfect illustration!)

But tonight’s post isn’t going to be about marriages, or any type of adult relationship but about my kids. Specifically about my relationships with each of them and how the love languages apply to them individually. And lately I’ve spent a lot of time peeling back the layers of my children’s individual personalities to try to discover the best and most effective ways that I can love them.

Ella’s primary love language is Quality Time which actually makes me sad because the boys tie me up so much that it’s often hard to give her much of it. But we have been consciously making the effort to go out on Mum/daughter days a lot more often than we used to. The downside is that she is at risk of feeling unloved if she doesn’t get enough quality time with either of us. There’s always room for improvement though and I am determined to give her what she needs.

Harley was a no-brainer for me. He is exactly the same as me – Words Of Affirmation and Physical Touch. He loves his cuddles and a compliment can make him float for days. Conversely though, like me – he also gets extremely hurt by unkindness and needs to be built up very frequently. Things that other kids could just shake off can stay with him for a long time and can do a lot of unnecessary damage.  I understand the love languages side of Harley the most out of all of my kids but I am also regularly confused by how differently it presents on him compared to me. I think this has something to do with his wonderfully wired brain and how differently it processes things but I’m still working on figuring this one out.

And then there’s Lucas. He was a particularly difficult one for me to figure out. I had to do a number of quizzes on him until I had what I considered to be the correct answer but even now I’m still not 100% convinced.  I asked him to tell me what I do that makes him feel the happiest and most loved.

I put it to him like this:

Would you prefer:

1. A cuddle and kiss? (Physical Touch)

2. A new toy (Giving And Receiving Gifts)

3. For Mummy to tell you how proud she is of you (Words Of Affirmation)

4. Mummy to spend the afternoon playing Trashies with you (Quality time)

or

5. For Mummy to clean your room up and make you a cake? (Acts Of Service).

He answered that a hug would be his favourite which interested me for a few reasons. Firstly because it was the very first scenario that I put to him (and perhaps the only one that he actually heard and processed) so to get a definitive answer, I put different scenarios to him mixing up the order each time, But each and every time – it was Physical Touch that won out. The other reason that this surprised me was because every time that I hug Lucas – he only stays in my lap for mere seconds before jumping off again in another Tiggerific  bouncing episode.

So now – I’m wondering how much of a part that both of the boy’s sensory processing difficulties play in the way that they give and receive love and how much autism affects their ability to feel loved and safe when they need it most. I’ll explain further:

When Harley becomes overwhelmed by too much noise, too much light or by strong smells – he can’t stand to be touched at all and he becomes aggressive and sometimes violent and screams out the most awful things.  And it’s the same when he’s in the middle of a meltdown.

He has described to me on a good day that when people try to talk to him when he’s in that state that the human voice aggravates and irritates him more than any other sound. I find that incredibly fascinating. Especially since any other time – Harley  is incredibly affectionate and very generous with his hugs and kind words.

And Lucas – well he is similar to Harley in that he also cannot stand to be touched if he’s overwhelmed or melting down – and he says that the human touch actually  makes his skin feel like its burning. But here’s what I find amazing – As Lucas is coming down from an episode – he  is OVERLY generous with hugs and climbs into my lap and wraps my arms around him refusing to leave.

So the things that bring them comfort and calm them on a good day are actually the same things that can escalate an explosion on a bad day.

***

I already have huge amounts of much respect for all individuals on the autism spectrum but now: WOW!  It has gone up a few hundred notches. I’m sure that there are bundles and bundles of undiscovered information and so many more layers to peel back still for my children and  I know that I have SO much more to learn about all of this.

The exciting part?

It has become like a neat little project for me….. Bring on 2013!

Measuring success…

Image from snapsurveys.com

I’ll let you all in on a little secret: When people talk to me, write to me or ask me questions, I always go away and analyse the entire conversation and make mental notes afterwards. I have learnt a lot about myself as a parent, friend and person by trying to see things from other people’s perspectives.

A new follower on my Wonderfully Wired Facebook Page asked me just today: “How do you both stay on the same page as to what the ‘right’ thing is to do in a situation?”

I waited almost an hour before answering this because the question caused me to stop and think for a while before I felt that I could answer it properly. I actually laughed out loud when I first read it because from where I sit – we don’t agree on ANYTHING and are failing miserably as parents!

We almost never see eye-to-eye on discipline or parenting. I think he is too harsh and he thinks I am too soft. And our marriage has been through some mighty big ups and downs because of this but we are learning to focus on the child and their needs instead of trying to just be heard (or right) ourselves. So I wrote and told her that there is no right way and that it’s different for every family. It’s about working out what’s worth the fight and what’s not and about choosing to do what’s best for the child. It’s also about educating yourself and discovering the difference between naughtiness and sensory overload, between a tantrum and a meltdown and recognising the times when bailing out is your best option. Despite how you actually feel. (And wow do I struggle with THAT one).

I’m a very social person and having to learn to leave when my son has had enough was a tough one for me. But parenting kids in general (and especially when they have high needs) is ultimately all about sacrifice.

Sacrificing the need to be “right” all the time and sacrificing what you want to do in favour of what your child actually needs. But sacrifice isn’t always a negative word. Sacrifice can also mean: devoting, dedicating and giving.

Most of the time I am prepared to put in whatever it takes now because I know the rewards will make it all worthwhile one day. But there are many days where I still stomp and moan and carry one because “It’s not faaaaaaair, I can’t dooooo this!”  And I have spent a lot of time on my knees crying out to God begging Him to make my life simple and take away all the “hard”. I have also yelled out “What did I do that was SO WRONG that this is the life I’ve been given”.   So don’t think for a second that I breeze through this autism parenting thing…Or parenting at all for that matter!

But I’ve discovered that anyone who makes the choice to blog about their family and living with autism walks a very unsteady balance beam every time that they write. I have noticed that if I write too much about the hard times – I get criticized for being an attention seeker and for painting my children in a bad light, but if I blog about only the good stuff – there are people who read it and wonder why they can’t get it right and wish that their kids were progressing as much as mine are and wonder what they are doing wrong. I’ve even had people ask me what my secret is???

But here’s the thing.

NO family has it all worked out. NO family gets it right every-single-time and NO family could honestly tell you that autism hasn’t rocked their world in some ways.

And any parent with a child on the spectrum will tell you that often our kids will take one step forward and then ten steps backwards and it’s hard sometimes to stay cheerful and positive when you feel like screaming and throwing in the towel. But I try. And I keep putting one foot in front of the other and keep doing my best because they deserve nothing less.

However – I have learned a new way to measure how we are all doing. And it has NOTHING to do with comparing our life to other families. Even those families with autism because every-family-is-different.

I now look at a situation and ask myself – how does this compare to last week, to last month and to last year? And if I can honestly say that we have moved forward (even if only mere millimetres) than it’s marked as a success.

Things don’t have to be easy and wonderful all the time but I’ve learned that progress is progress no matter how small and insignificant it may seem at the time. 12 months ago we wouldn’t have even have attempted going to Costco but two days ago – WE DID IT!

I’ve put dreams on hold, I’ve opted out of a lot of things that I really wanted to do and almost every day I have to remind myself not to live in regret and for the most part – I am happy. I’ve learned that it’s no longer all about me. I have a purpose and I will do my best to make sure my kids grow up to be successful.

And that’s really all that any parent ever hopes for.

Wordpower

When I was growing up, I only had one sibling. My sister is 14 months younger than I am and was in the grade below me. With us being so close in age, it was common for people to compare us. (But not our parents, they treated us as individuals.)

My sister was always is smart.

She did really well at school and went on to study graphic design at university and more recently floristry.  She is incredibly talented in all areas of design and her home regularly looks like something out of a magazine.

I on the other hand completely suck at every aspect of design and couldn’t colour match anything to save my life. And I don’t particularly care for it either.

For me school was difficult, frustrating and mind-numbingly boring. I used to turn up every morning in grades 11 and 12, get my name marked off and then walk to town to go shopping for the day. (And oh-wow did my grade 12 marks reflect this! )

Academics wasn’t and still isn’t my thing. All I ever wanted out of life was to get married and have a family, she always had a career in

This is me in grade 12. Complete with a chip on my shoulder…

mind.

I remember my grade 10 math teacher standing me up in front of the class and humiliating me by pointing out that my younger sister was able to do the maths problem that I couldn’t and asked me what was wrong with me. The whole class laughed at me and from that day onwards I never turned up to his math class ever again.

And he wasn’t the only teacher who I had trouble with. My geography teacher hated me and went out of his way to make my life hell for years. It all started because of a class discussion on evolution and he asked me what I thought …… so I told him.  He opposed the creation beliefs that I have and disagreed with me about absolutely everything from that day onwards. Publicly.

Then 4 years after leaving school I returned home to live for 3 months while I moved from one capital city to another. I moved in with Mum and Dad to save money and worked as a waitress in a local café. One day this teacher came in for lunch and gleefully jibed me in front of his friends saying: “Well, well well….I knew you’d never make anything of yourself, and look at you now. Serving ME coffee!”

Those comments have now stayed with me for over 21 years and although I’ve forgiven them both, I have seen them down the street a few times over the years when I go home to see Mum.  I still smart when I lay eyes on them and the reason I still get a reaction is because words have power.

And words spoken over or to a child can have either a devastating or uplifting effect.

(The tongue has the power to bring with it life or death – Proverbs 18:21)

I spent my school years feeling like a massive failure because my sister did so well. I felt like I was an embarrassment to my parents so I clowned around instead. But I can honestly say that I was ALWAYS proud of my sister whenever she did well. I was excited for her and thrilled when her university offer came in. By then I had realised that higher education wasn’t for me because I HATED the thought of studying anything. I made my peace with being the loud and proud goofy sister instead.

My Lucas is a textbook aspie. He has the high intelligence, the amazing vocabulary and the hyper-verbal speech. He is excelling in all areas of his schoolwork and is amazing us with what he is achieving. He’s like a mini Sheldon and what most people think of when they hear the word: Aspergers.

I can’t tell you the number of times that people have reminded me that Einstein, Isaac Newton and Beethoven are all suspected to have had aspergers traits and then follow up their observation with “See, your child is going to be brilliant one day”. (Like they need to convince me that my child is going to succeed DESPITE their diagnosis).

But then I have Harley. He is not the classic aspie. He struggles with almost every aspect of schooling from reading and writing through to socialising with other kids.

He puts so much incredible effort into just BEING in school that there’s not much energy left for learning. Add to that his difficulty coping with noise, crowds and variations in temperatures and you have a child who is constantly being subjected to pain and discomfort. His sensory processing issues are through the roof most days.

It’s like forcing ME to go cold turkey on caffeine and then sticking me in a room full of children for 6 hours because being a teacher is MY idea of hell)……I would NOT do well under those circumstances yet Harley faces this kind of discomfort AND MORE every.single.day and he does it with grace.

Harley doesn’t fit the mould of “typical aspie” that is so often assumed on him and the label does more damage to his personal opinions and expectations of himself than anything else.

And I know that comparing my boys and their abilities is not only stupid but incredibly dangerous. And  I am no longer hurt or angry at my high school teachers because I truly have forgiven them but I still remember both instances very clearly. That’s why words have to be so carefully chosen before uttering them.

My boys both have wonderful teachers who speak only the very best over my boys and because of that, I know that they will do well later in life. And that brings me great hope.

But it’s not all bad. My own high school experiences have made me a better mother. I know the effects of negative comments and off-the-cuff remarks so I am super careful to watch what I say to them lest they carry around baggage like I did.

And now that I am an adult , I realise that although my sister is so much better me academically, and in design – I also know that I am much better than her in other areas.

And this is what I am trying to teach my children.  Everyone has different and unique abilities. We are not all made the same way and no-one is good at everything.

Last night was the junior school presentation night. I had suspected that Lucas might do well because of the glowing reports we have been receiving all year whereas conversely, I also knew that Harley has struggled a lot.

And I was thrilled when Lucas earned the medal for Excellence in Mathematics. He stood up on that stage proudly smiling from ear to ear while everyone clapped. And I was sad for Harley when I watched his disappointment at not receiving an award but I knew that as rough as it seemed – it is a necessary part of learning about life.

Paul and I rock-paper-scissored each other to decide who was collecting which child at the conclusion of the night because we could tell Harley was borderline and knew it would be hard work. He won the match so I headed over to the row Harley was sitting in and he ran towards me and punched me in the stomach. He then head-butted my arm and kicked me before throwing himself down on the chair beside him. He wasn’t happy at all.

He didn’t do a very good job of hiding his disappointment so I sat quietly beside him to let him get it out of his system. Finally he looked up at me with tears in his eyes and said: “I’ll never be as smart as Lucas, I’m such a dumb head”.

I stiffened and knew that I had a defining moment in front of me. I reassured him that he wasn’t dumb at all and that there were so many children that not everyone could possibly win an award. I listed all the things that he is great at and reminded him of his strengths. I pointed out that he wasn’t the only child in his class not to receive an award and assured him that I was incredibly proud of him because I knew how hard he had been working. I asked him to try to remember to be happy for his classmates who did win awards because that’s what good sportmanship is about.

At that moment I saw Lucas running toward me with Paul and Ella following closely behind.  I looked at Harley and said: “I know you’re sad right now and I do care very much but I have to tell Lucas that I’m proud of him because he deserves to be praised for his efforts.”

Lucas threw himself into my arms and I hugged him telling him that I was very proud of him. I glanced over his shoulder at Harley and was amazed and touched when he reached out and patted his little brother on his back saying: “Well done Lucas”.

My eyes filled up as I realised how huge this was for a child who is not only in the depths of disappointment but supposedly (according to some of the ridiculous literature out there) not possessing empathy.

Well, if that’s not progress and a perfect example of empathy I don’t know what it was!

It’s a hard thing to have to deal with sadness in one child whilst not taking away from or downplaying the achievements of another but I came home last night with a big grin across my face.

BOTH my boys did me proud. And it was an incredible night.

“Have you got a minute…?”

That was what I heard this afternoon as I was walking across the school playground, Harley’s OT had spied me and called out to me. She said she had been hoping to see me so we could ‘have a little chat’….

And this is where I need to tell you that I admit that I held my breath a little bit. Because usually when a teacher, aide or therapist approach me, it’s not good news and experience has taught me that I probably won’t like what’s coming next.

But not today. Because today she had a major breakthrough with him and wanted to share it with me.

For weeks now he has been turning up to his OT lesson without his workbook. She had said that she thought it odd that I had never packed it (it stays in his bag permanently) but then today it dawned on her what was actually happening.

She had a light bulb moment and couldn’t believed she’d missed it for so long!

As she usually does, she waits until he’d settled in his seat and asked him if he had his book with him and he (predictably) replied: “No”.

So then she asked him where his work book was and he replied: “In my school bag”.

So he had been answering her correctly every single week when the direct question “Do you have your work book here”? was asked. But it had never occurred to him to go back to his classroom and get it out of his bag! Such a simple thing that had been complicated by his difficulty comprehending verbal instructions or questions.

She also mentioned that he had been a lot more settled than in the past and enquired whether that was because the stress of the school year is almost over. I ‘casually’ mentioned that he has now been on medication for almost 2 months and her face broke into a smile and understanding was written all over her features.

She nodded and said: “Wow. What a massive change I’ve noticed in him, he is more focused, more agreeable and much calmer than I’ve ever known him to be. I think you made the right decision”.

And instantly I felt the validation that I needed.

Harley’s Paediatrician first suggested the medication route a few years back but I was adamant that I wasn’t going to drug my child. I dug my heels in and determined that I would somehow ‘fix’ his anxieties, aggression issues and OCD tendencies myself.

But I couldn’t.

I eventually had to admit that it was over my head and ask for help.

Since he has started seeing his psychologist combined with the pills, our family life has improved dramatically.

Beyond description.

And now that he is able to gain more control of his emotions, he can actually apply the coping techniques that he has been taught previously before he gets completely overwhelmed.

So its a win-win as far as I’m concerned!

His teachers have noticed a positive change in him too so I’m even further and further away from beating myself up about medicating him.

I feel like I have my little boy back. The one that has been buried underneath layers of angst and fear for 9 years. I see joy in his eyes and happiness more often than ever before.

But please don’t get me wrong – I am not touting a magic cure-all pill for autism. (In fact I’m not ever dipping my toes into THAT murky pond) and I am definitely not advocating for going the medication route because choosing to medicate your child is a very personal decision and it will never be for everyone.

We have been under a remarkable Paediatrician whom I trust implicitly for years now and we weighed up ALL options over 3 years before deciding to bite the bullet so to speak. So this wasn’t a hasty decision at all.

Harley still has and will always have autism. We are just addressing a common symptom of ASDs. I am aware that this is a touchy subject with some folk but I’m simply writing about our family and our experiences and I won’t apologise for doing the best that we can with what information we have available to us at the time.

I love my kids and I want them to be the best that they can be.

I want to see this smile as often as I can. He’s just SO cool isn’t he!

Sneakiness has its merits…

My friends are sneaky.

Not all of them, but some of them.

These are the friends who instinctively know when I’m off my game and don’t let me fade away because they know its not good for me. They know that when I withdraw it’s an alarm signal.

You know……

• The email that states that I’m not required to respond but that they want me to know that I’m being thought of and prayed for.
• The text messages that are innocent enough but have a deeper underlying purpose….digging for details on how to help me. Or even asking a mutual friend to contact me to check that I really am ok.
• The phone call out of the blue just to say “Hi” .

And then there was today. Today a friend took me out for lunch. And the fact that I can boldly say that it was the best gluten-free meal I have ever eaten to date is not the most meaningful thing that I took away from our little rendezvous. The wonderful quaint little gift shops that we browsed in wasn’t it either. And believe it or not: it wasn’t even the amazing coffee we had. No. It was “where” she took me. She knows me and what I love the most.

Remember in previous posts where I have written that sometimes I need to escape to the country to find my balance again? That there are days when I just need to get away from the stress and hectic pace of my life and clear my head?

Well….she took me there. To my favourite little country getaway with the beautiful people and the incredible landscapes and cute little churches.

She’s clever isn’t she?!

But I didn’t work out her plan right away.

Sure she mentioned that she’d noticed that I sent her a picture last night instead of writing but I didn’t think too much of it at the time.

I savoured my lunch. Well no, actually – that’s a complete lie – I wolfed down my sourdough chicken burger like there was no tomorrow! But what I mean is: I was content in my surroundings and relaxed and happy, I was laughing, chatting and absolutely in my element. And I haven’t been in that place of contentment for quite a while now.

My friend asked me if I could picture myself sitting outside on the verandah with a coffee listening to the bell birds with my iPad in front of me writing. And even then, I still didn’t realise what she was doing. I’m not even sure if it was deliberate or not but it worked.

I turned a corner. I was able to quash the feelings of inadequacy and standup to that voice in my head telling me that I’m a waste of space and mentally yell back at it: “What I think and write and who I am is important so SHUT UP!”

Giggle ….giggle….I like feisty Fiona …

My friends know that writing is what works for me. It’s how I process my thoughts and work through emotions. But lately I have shunned writing. It has all been too hard and I really wasn’t keen on facing any of my challenges head on.

I kept my head stuck firmly in the sand refusing to face up to anything.

There has been a lot of stress here lately and the fact that our house is currently on the market hasn’t helped. We have had a low offer which we refused and another offer of the exact amount we were hoping for only to have the buyer change their mind and withdraw their offer 2 days later. At this point it looks like we’re staying put and I’m more than happy with that right now.

Also: it is the last week of school next week and the exhaustion and frustration is evident in all of the children but especially Harley. He is tired. He has mentally signed off for the year and is coping by tuning out everyone and everything. (Hmmmm. wonder where he got that from?) hehehe

There have been challenges in our marriage and struggles in our family dynamic and its all gotten on top of me.

But my friends haven’t deserted me. Even though I know I’ve been difficult and aloof lately, the emails and texts have been constant and kind and caring. I have needed them . They are truly what have kept me going.

That and the reminders of where I need to get my strength. I admit that lately I have stopped laying all my cares at the feet of Jesus. I have tried to do it in my own strength and failed miserably. But just like my friends here on earth He hasn’t forgotten or forsaken me. And for that, I am truly thankful.

I have learned that unlike my husband and sometimes my boys; I need people. I need to chat, to hug, to be hugged and to do life alongside others who get me. Some people do well by limiting their interactions but I’m not one of them. I crave human contact and start to nosedive whenever I choose to isolate myself.

And tomorrow night: I hope to write more about the past few months and the awesome progress that my boys have made.

The clouds are clearing: the sun is peeking through and the curtain of lethargy and depression is lifting.

And even though I was raised in a Pentecostal church – I am still partial to the odd old hymn. Like this one because it just sums it all up perfectly.

It is well with my soul.

When peace like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou hast taught me to say,
It is well, it is well, with my soul.
Refrain:
It is well, (it is well),
With my soul, (with my soul)
It is well, it is well, with my soul.

Deeper

I’ve been pretty slack at this whole blogging thing lately. I have had a lot to say but have been unable to put it into words that I’m comfortable enough with to publish.

Because the truth is, I’m hanging on by a thread at the moment. I’ve become pretty good at hiding my despair but thankfully, there are three people in particular in my life who are always there on the end of a text, phone call or email who keep me from completely losing it.

And they are all able to read between the lines and work out what’s really going on. I love all of them so dearly.

But even so, there is still so much that I really need to write out and deal with and I’ve struggled with writing it out ever since my writing was harshly criticized and made fun of recently.

I’m struggling with the bigger things too.

Like our visits to Harley’s psychologist. I haven’t even processed the information that she gave me on his first visit let alone the other times that he has been. He is just so complex and his issues are way over my head and capabilities and frankly: it scares the heck outta me. I’m not sure that I’ll ever be enough when it comes to helping him.

And the out-of-control behaviour that we are seeing in Lucas at the moment is something that I’ve honestly never seen before. I wonder if its an end-of-year exhaustion thing or whether he is struggling with stuff I can’t work out? And I wonder how deep it goes?

And if he will develop similar anxieties and fears as Harley and end up needing medication too? It’s all too much to get my head around.

Not to mention the friendships and relationship stuff that everybody has. Marriage is so damn hard at the best of times and the pressure increases when you have children who need so much more from you than the average child. I worry that my well will run dry and there will be nothing left to give.

There are already areas of my life that I have checked out of prematurely. It’s just all too overwhelming at the moment and I’m getting tired of just treading water all the time so it’s become easier to do nothing rather than make the wrong decisions.

Maybe that’s a bad decision? I don’t know, but survival mode does interesting things to a person. This funk I’m in has brought some rather abstract poetry out of me so I guess it’s not all bad.

Like this:

Hurting head and aching heart,

Needing some reprieve,

Wanting guidance,

Desiring peace,

But don’t know where to start.

.

I close my eyes and lay my head,

Down on my folded arms,

Wanting rest,

Desiring release,

From all those things you said.

.

As days unfold and choices come,

I don’t know which ways up,

Wanting love,

Desiring grace,

Before I come undone.

.

Then night fall comes and brings with it,

More pain and hopelessness,

Wanting answers,

Desiring truth,

I can’t take another hit.

…

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The Lorax got it right.

image via alittledelightful.com

Today I went to a Sue Larkey seminar and she was fantastic. As usual.

But I’m not going to write specifically about what she taught us today but instead I’m going to write about what I personally took away from the seminar.

Let me flash back to when I heard Sue Larkey talk for the very first time quite a few years ago now. It was 2008 and Harley was only 5 years old and had only very recently been diagnosed with autism. I was attending my very first Tony Attwood autism seminar and Sue was a guest speaker there.

I remember sitting in that crowded auditorium with literally hundreds of other parents, teachers and carers listening what seemed like hours and hours of information, strategies, advice and ideas and I was overwhelmed and distraught to find out that there was so much that I didn’t know and needed to learn to help my boy.

I came home that night and sat in my bed and cried and cried and cried for literally hours. It was almost like I was reliving the emotional distress that I felt when I first learned that he had autism. I was emotionally and mentally overloaded and felt an enormous sense of helplessness washing over me in tidal waves.

I asked myself: How could I possibly ever learn all THAT?

At that first seminar I took very few notes and absorbed only what my brain could handle but there was a handout (thankfully) that I was able to dive into and explore much later on when I had the brain space to do so.

Gradually, I started to seek out information in my own time and strived to learn as much as I could. I wanted so badly to understand the workings of my son’s wonderfully wired brain. So I started observing him at play, with strangers, with friends and in his classroom environment whenever I went in to help and I found that there was an absolutely brilliant child hiding behind his struggles.

In him I recognised my own stubbornness and refusal to be told that I cannot do something and it spurred me on even further. I threw myself into discovering ways to help him to be the best that he could possibly be. I stared down the challenge and determined that he was going to be successful NO MATTER WHAT!

And slowly – things started to become clearer and clearer.

Then I met my friend LISA who is an adult on the spectrum and my eyes were opened to a whole new level of understanding and possibilities. Seeing autism through the eyes of someone on the spectrum is Uh-mazing!

Even today in the seminar Sue played us a few videos and every single one of them was an interview with an individual with autism. Sue recognises that we can learn SO MUCH from those who LIVE with autism personally and can explain it first hand to those of us who are really only textbook trained. She featured Temple Grandin and Carly Fleischmann. (See video below).

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Honestly…..both of these women are remarkable and well worth the time spent watching some of their videos.

Like my wonderful friend Lisa – these amazing ladies have really opened my eyes and increased my understanding of autism and sensory needs in my boys.

But do you know what I took away from today that surprised me more than anything? What amazed me and gave me the boost that I have been needing oh-so desperately lately? And what reassured me that my boys are in fact going to be ok?

 Confirmation.

She confirmed for me that my gut instincts are spot-on when it comes to my boys. A lot of the stuff that she shared about was stuff that I am already doing with them. Much of which she suggested, spoke about and taught were things that I am already instinctively applying to our family situation.  And these are things that I have learned myself through trial and error and from applying ideas that I have either researched or learnt myself on my own time.

No-one taught me a lot of this stuff – I have learned most of it just by simply following my own maternal gut instincts.

And remember that 4 years ago I was scared out of my head that I was going to somehow fail my child and that he was doomed to a life of mediocrity because *I* couldn’t be the mother that he needed.

~

I remember being told by parents with older children on the spectrum that ‘it gets better’ and I scoffed and rolled my eyes at them. I couldn’t see past the next ten minutes and all I could see was hourly meltdowns, tantrums, hurdles and struggles. I had difficulty believing that it wasn’t always going to be as hard as it was at that moment. But that does really honestly change.

You still experience different levels and intensities of emotions with your child but the battles change and your coping mechanisms increase.

So I want to encourage anyone who is new on this journey and let you know that it DOES get better. It will probably never be easy all of the time but even regular parenting rarely is.

Now let me explain something important here: I am not university educated, I do NOT claim to know everything there is to know about autism and I still learnt a LOT of things today that I didn’t know before. There is always more and more to learn. I am certainly not a scholar and in fact I failed grade 12 because I hated school and never really applied myself so you don’t need to be blessed with super duper intelligence to be a successful parent to these amazing kiddos.

I believe that the most important thing you can give your child is love. If you can love them and accept them just the way they are, you will find that things naturally and gradually fall into place.

It IS overwhelming at first. It IS scary and it IS terrifying when you realise just how complex ASDs are and what they bring with them but you don’t need to know EVERYTHING to effectively parent your child.

You only need to love and focus on your own child and work on helping them. If you love them you will naturally want the best for them anyway and find that information is unconsciously absorbed through applying new methods and strategies.

When I look back to 4 years ago and realise just how far I’ve come without even really trying – I see that there IS a light at the end of the tunnel.

I will NEVER know all there is to know about ASDs because there is so much to learn. But I am in tune with my boys and their needs.

And I know that all of you love your kids too so I’ll finish with one of my all time favourite quotes from Dr Seuss’s The Lorax:

“Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not.”

Who are you going to listen to?

When people ask me “What exactly is autism” I usually answer with this: “A complex neurological wiring that presents differently in every single individual on the autistic spectrum”.

Because that’s just it – there is no one autism. It differs greatly from person to person and whilst they share similarities, each individual is unique and has their own strengths and weaknesses. And too often, people compare what they know autism looks like on someone’s daughter, son, cousin, nephew, niece or friend that they know personally and assume that unless their child is exactly like that – there is no chance that there could possibly be a spectrum disorder lurking in their own child.

But there are hundreds of undiagnosed kids out there. I see them everywhere I go, I have acquaintances with kids who desperately need evaluating but I can’t say anything because its not my place because I am “just a parent”.

Not as in only a parent, but as in not qualified to diagnose autism.

And thats ok because that’s true. But I know autism from a different angle than a diagnostician does, and a different angle to how a teacher might see it and I experience different elements of autism to what a textbook teaches them. I’m not a professional on any level but I know how autism looks in my own family. And that’s definitely worth something.

I know that how my boys appear in public and what we live with are two completely opposite things but that even in those moments where the untrained eye wouldn’t necessarily see autism – I still can.

I can look at my boys across a playground and see subtle things like that tiny moment of hesitation when they are spoken to by another child, the way that they move their bodies in either sensory seeking or sensory avoiding ways and the facial expressions that convey their struggles to me. And this is not just because I am their mother, but because I have learned what to look for so therefore I can no longer not see the autism.

And I can also see it in my friend’s children who are already diagnosed on the spectrum. I see those little quirks, hear those speech anomalies and observe the giveaway telltale signs that would be easy to miss if you didn’t know what you were looking for, but those kids also hide it very well in most situations. And often not even deliberately.

Even though its the doctors and health professionals who play a huge part in diagnosing our kids, they also need information and data from parents to complete their diagnosis, so what we observe about our children and report to them is an important part of the bigger picture. We do not have the final say but what we bring to the table DOES matter. We need to work together to achieve success in getting our kids what they need and deserve.

I know a reasonable amount about autism from living with it every day and from being given remarkable first hand insights into the wonderful workings of the autistic mind so it makes sense that I also notice indicators in other children almost everywhere that I go.

I see children who sit with their legs in the “w” position while playing and children who walk on their tip toes frequently. I read about parents who have children who have been terrible sleepers for years despite their best efforts to make it work and my heart breaks for those families because I feel their pain all too well.

“W” sitting
image via http://www.alignedandwell.com

Tip-toe walking
image via http://www.examiner.com

I hear about kids with high anxiety and debilitating panic attacks, and about the children who freak out if their routine is altered. And stories about kids who can’t stand to have different foods touching on their plates or refusal to wear a certain fabric and wonder if there is something more going on.

I notice photos of children who refuse to look at a camera, I see their awkward smiles where their eyes are glazed over and absent and I observe behaviours in public places from a whole new perspective since learning about the sensory issues that children on the spectrum have.

I am often told stories about the cute things other people’s kids do like lining up their toys or arranging their belongings alphabetically, in colour order or in patterns and big loud clangy alarm bells go off in my head. If someone tells me about the odd things that their child collects or shows me photos of the child immersed in a special interest of theirs and appearing unaware of their surroundings or other people because they are so engrossed, I have trouble not shouting: ‘ding, ding, ding’ in their face!

Lining up toys
image via http://www.mariasspace.com

And while its true that none of these above mentioned quirks alone mean that the child necessarily has autism , they are all indicators of autism that are often explained away as other things and might one day need to be explored further. And it saddens me when a parent is told by another well meaning friend (or worse; someone who works in childcare or some branch of medicine) only what they want to hear instead of encouraging them to follow their gut instincts.

Sometimes, when a parent tells me about unusual things that they have noticed about their child whom I already suspect could be spectrummy, I have had to learn to listen, smile and subtly suggest that if they are concerned that they should seek out a professional opinion. Because at the end of the day, my opinion is just that; my opinion. I would hate for my word to be taken as gospel when a child’s future is at stake. But so many parents DO take reassurances from friends, co-workers and sometimes even Doctors who don’t explore concerns properly.

I have had a few friends tell me things about their child that concern them only to have them finish their sentence with: ‘but it’s not autism, because my child is not like yours’ or “I know someone who works in ‘such and such a place’ and they told me that he/she is normal”.

UGH! If you’re worried about hour child’s development in ANY area, get your child assessed properly. And if you’re not being taken seriously but still have strong concerns: fight for your child!

Stand up and push until you get the answers that you need! Be the advocate your child needs.

In cases like this, I usually ask my friend if they think its would be better to ask the question and have it explored and dispelled rather than take someone’s word for it just because they don’t want to cause waves and end up with a child who needs so much more help than they would have if it were picked up earlier.

I then follow with my brain tumour story to illustrate my point.

I had a numb face, an awkward gait, was extremely clumsy and losing my hearing and the biggest indicator was something that I couldn’t describe in any other way than the non-specific “something just doesn’t feel right”.

I was seen by 7 different Doctors who gave me answers like: sleep deprivation, post natal depression (Harley was only 2 weeks old), facial palsy from pushing during childbirth and the good old ‘stress’ diagnosis but it wasn’t until I followed my “gut” instinct and demanded further testing that the 5cm tumour was found growing dangerously close to my brain stem. So if I hadn’t have followed my gut instinct and listened to well meaning friends and some Doctors who were willing to write my concerns off without further exploration, who knows how this story would have ended?

I get that this is a touchy subject, I understand that this may be confronting to read for some people and I’m sorry if I’ve hurt anyone. This is truly not my heart at all.

And no, I’m not writing about anyone I know personally here, I just know how much difference early intervention makes in a child’s life and I’m passionate about children receiving whatever help they can so that they can live their best life. Yes – we’ve had many ups and downs here since my boys were diagnosed but I KNOW that now I am doing everything in my power to give my kids the best start in life.

I used to wonder if things would be better if we’d never found out and sometimes wished that I’d kept my head in the sand for longer because its often all too confrontational and downright hard, but now I know beyond a shadow of a doubt that asking the questions and requesting evaluations was the best move I ever made for my boys.

Because like most parents, I really do just want the very best for my kids.

They deserve that.

One Mum’s trash is another Mum’s treasure :)

Yesterday, Ella and I went to church together and left the boys at home with Paul because sometimes, it’s just not worth the fight. I sat with my dear friend *Hope and as usual, she blessed me with her wisdom, her compassion and her desire to help other people.

We were sitting behind another friend who had her little boy with her who was getting a bit restless so Hope rummaged around in (what we call her Mary Poppins bag) and produced some paper and coloured pens to draw with. She drew an upside down cat and encouraged him to draw too.

The little boy’s Mum sat down beside him and also tried to get him to draw and eventually he picked up the pen and scribbled all over the cat! I giggled and pointed it out to Hope and she smiled and said: “It doesn’t matter – he’s engaging with his Mum, that was the whole point”!

Wow!

Hope probably doesn’t realise what that tiny comment meant to me or how the words rolled around in my head for the following 12 hours or so!

“Engaging with his mother”. I just couldn’t shake it!

I thought about my relationship with my own kids and knew that when it comes to engaging them – I rarely do. And that’s not because I don’t know how to, or because I don’t have the time to, but because most of the time: I don’t want to.

That’s right, I don’t want to……..I’m over it. O.V.E.R!

Most school afternoons I am exhausted within half an hour of collecting the kids from school. The constant yelling, running, jumping, flapping, bouncing and spinning mixed with mindless chatter and monologue-ing just about does my head in. I often develop a headache around 3pm and tense up and usually end up putting myself in a time out!  I go into my bedroom and sit on my bed, (or in my wardrobe on the more desperate days) and escape the chaos for as long as I can get away with it!

I’m not really that clueless though – I do know that my kids need to decompress after a long day at school and that they require some sort of loose routine to help them to do that, but organising and scheduling does not come easily to me at all. I fight it a lot more than I should.

But I cannot just tell my kids to “go play” because they simply don’t know how to.

For a child who is developing typically, they are born with play skills that are flexible, spontaneous, creative and also voluntary. Playing comes naturally to them and it’s how they learn about their world. Play teaches children how to self-amuse and be independent when they need to be and helps the child to build confidence in themselves and their abilities.

But, children on the autism spectrum often need to be taught how to play. It sounds strange I know, but children with an ASD often have repetitive, non-functional and rigid play with very limited interests. Because of this they struggle to learn skills to help them to socialise with other children and they don’t instinctively know “how” to play make believe type games. (This is why it’s difficult to engage with children on the spectrum and in my son’s case – why he often explodes in anger because he can’t figure out what he needs to do next or how to do it!)

There is hope though. The best way to engage a child on the spectrum is to find out what they are interested in. Find out what makes them smile, what excites them and what makes them feel safe. And then use that interest to engage with them and teach them necessary life skills through play.

At the moment – both of my boys are mad about Trashies! (Trash Packs).

The trashie army

Our house has been overtaken by them, and a dear friend often buys the boys new ones as rewards and incentives. So this afternoon once we got home and wound down a bit, I asked the boys if they would “help” me to sort the Trashies out.

I asked them if they could help me to put them all in groups of the same colours and to help me to figure out which group had the most Trashies in it and which one had the least. Of course they were in their elements because this type of activity is well documented as being something that ASD children love to do. Grouping things, lining them up and organising are all known to be comforting to individuals on the spectrum. So ‘together’ we sorted them all out.

Because I was playing alongside the boys and not talking to them face to face, they were comfortable enough to tell me about their days at school. They were super-focussed on arranging the Trashies and there was not one single harsh word spoken between them the entire time. This alone is HUGE progress because when you have 2 sons on the spectrum and NEITHER of them possessing very good social skills, play skills or knowing how to play independently – there is always a lot of fighting going on. But not today!

Next we counted them by colour, did some basic adding and subtracting and ‘invented’ conversations between the different Trashies. It was wonderful to see them getting so involved and the sneaky maths homework proved a winner too! (hehehe).

Most days I curse those little trashes that are strewn all over my house and usually I cannot go into a single room without finding one of them on the floor but after this afternoon, I have started to see Trashies in a whole new light!

Granted it only lasted ten minutes before Harley started begging for the TV and Lucas for the computer but it was ten minutes longer than yesterday. And I hope to increase that play time over the next few months as I continue to find new and exciting ways to engage my children.

So for  now….I’m keeping some of the trash INSIDE the house.

* Hope is not her real name, but she is the same friend that provided my boys with these wonderful grubby little treasures…She has brought us much hope hence the pseudonym ♥.

Is technology ruining parent-teen relationships?

These days, technology and teenagers seem to go hand in hand. You rarely spot one who isn’t holding a screen of some sort or with ear buds in their ears. You know – the tell-tale white cord dangling down over their shoulders which is a dead giveaway to some sort of MP3 player or a phone underneath their jacket.

And my girl is no different. We rarely see her without those wretched ear plugs in and I have photographic evidence!

We resisted buying into all the electronics and gadgetry for as along as we could but eventually we ended up giving Ella a phone like all the other Mums and Dads did. She won’t be 13 for another 4 months but we decided that she could have it early.

Because even when you’re an adult in your 30s – peer pressure is a killer!

But of course I’m kidding!

Sort of.

A lot of parents of my generation and older moan about how society has forgotten how to communicate effectively and that websites such as Facebook or Twitter have killed off meaningful relationships and yes – I believe that’s true to an extent. But I also think that some of it is just refusal to admit that times are changing and that there is some good to be found when you lay aside personal reservations long enough to search for the good.

I understand the issue that a quick sentence typed online isn’t the same as going to a friend’s house for a coffee and catch up, but the reality is that life today moves so much faster than it ever has done before. So we’ve gotta bear that in mind when we look at how the younger generation operates. This is all they’ve ever known.

Back in the 90’s when I was growing up as a teen, I talked to my parents about everything. And I do mean everything. I was (and still am) a very open person. I pretty much lay it all on the line and what you see is what you get.  I don’t really have deep dark secrets – I just don’t do things that need to be hidden in the first place. That’s just me.

I love to communicate via words and my absolute favourite thing in the world to so is to have deep and meaningful conversations with those closest to me. I love to get to know new people and learn as much as I can about them because I have always found people absolutely fascinating! I have the gift of the gab and it’s really hard to shut me up once I get started. Talking is my thing.

So imagine my shock when I discovered that my daughter is the complete opposite to me and really doesn’t communicate a lot at all. (Bearing in mind that talking and communicating are two completely different things). I mean, put her with her school friends and they are a ball of chatter and silliness but you couldn’t extract a meaningful conversation out of her with a crow bar. She is simply not a communicator and doesn’t really offer up any indicators of her current mood, thought pattern or dreams and desires. She would make a fantastic poker player because she never gives anything away and most of the time I end up playing the stupid guessing game.

But I do know that she is a really great child and that she doesn’t do this because she has something to hide, but because she doesn’t know HOW to convey her innermost thoughts and struggles to anyone. I have secretly worried about her for quite a few years now because she is such a closed book, and in the past I have tried a few times to force information out of her with varying levels of success but lately, we have noticed a massive turnaround and I have technology and her school to thank for it.

Because a while ago, she came home with a note from the school saying that the rules had been reviewed and that mobile phones and iPods were now allowed to stay with the students during the school day (previously they had to be handed into the office).But the note stated that they were only to be used during lunch breaks. The kids were now allowed to indulge in the technology that has such a strong pull on them. It was progressive thinking and I think the school was very clever in their methods. They really get teenagers.

So Ella started taking along her iPod and loaded it up with apps like a French Dictionary, music apps and various other useful ones. Every afternoon she would come home and download hundreds of photos that her and her friends had taken during the day. Most of them were selfies or silliness but they were fun to look at and one afternoon as I flicked through the latest assortment, I thought: Wow….it would have been awesome if I had these kind of memories from my school days!

**

But for me, the real defining moment of my joy in modern technology was the day that I was mopping my kitchen floor and I my phone buzzed on the kitchen bench. I walked over and picked it up to check who had sent me a message and was surprised to see that it was my Ella.

She didn’t just text me to say a quick “Hello”. She was really communicating with me! We chatted for almost her entire lunch break about her friends, what she had done that day at school, her ideas for the weekend and she even opened up about other areas that are usually no-go zones when we’re talking face to face. And it didn’t stop there. My girl trusts me now. She really really TRUSTS me! She has confided in me several times since that very first text and I now look forward to hearing from my girl around 12 noon every other day.

She still climbs in the car each afternoon with barely a glance in my direction, she answers me with one-word answers and isn’t interested in sitting down and opening up her heart to me but that’s ok with me now because my girl has reached out to me!

She has found her medium, she feels safe when her fingers are doing the talking and I am discovering more and more about this beautiful young woman who is flourishing right before my very eyes even if it is in a non-conventional way.

I hold hopes of maybe one day that we can sit in a coffee shop together while I bounce my grandchild on my knee and she tells me all about what’s going on in her life but for now – I’ll take whatever she has to give me.

Oh heck yeah – I’ll take it! Bring it on!

This. Is. Our. Life.

I have a few friends who are at university at the moment. They all know that the next few years are going to be pretty full on but they throw themselves into their chosen field of study because they know that at the end of it – they will be one step closer to achieving success. They know that the sacrifice will pay off eventually and it will all be worth the hard work and long hours.

So my friends make the wise decision to arrange their social life around study and learn to turn down invitations that either conflict with their upcoming exams or might possibly eat in to their necessary research/study time.

They become super-focused and their course seems to completely consume them and be their main topic of conversation. They know that if they were to fail an exam or a unit that it wouldn’t be the end of the world but that it would put them one more step behind and that to catch up again it would require double the effort and time. They know that it’s just not worth it.

They know better than to push their responsibilities to the backs of their minds in favour of having a good time now. And they also know that it won’t be like this forever so they push through so that they can not only succeed but also flourish.

I admire them so much for their dedication and resilience.

It’s been suggested to me that I spend too much time thinking about autism and talking about autism and researching/reading about autism and that I would be better off spending the time that my children are at school doing something - anything that is separate and unrelated to autism. Because apparently – I have allowed autism to consume me and allowed it to depress me, and that it has made me not a very fun person to be around.

And I understand why people would think that way but honestly, as unfortunate as it is that I’m seen that way: I know that this kind of thinking only comes from those who don’t live a life like ours.

And explaining it to people who already have their minds made up about what they think autism should look like or how much time I should dedicate to it daily is as futile as explaining what childbirth feels like to a man.

People can empathise, they can say all the right things and read all the right literature that they can get their hands on, but they will never ever truly understand it unless they live with it 24/7 as we do.

We were never given the option to ignore autism or downplay the difficulties that it often presents because this is our life. We aren’t afforded the same luxury of pretending that it isn’t really all that bad. Honestly: I would seriously LOVE to step away from this life for a few hours a day but I know deep down that to do that I would be putting myself in a position where I would surely fail the afternoon exam.

And yes, like a Uni student who chooses the good life over responsibility – life wouldn’t come to an end – there wouldn’t be an unrepairable problem if I laid off the intensity, but it would definitely put me further behind in the sense that I would be unprepared and ill-equipped to deal with what may or may not be thrown at me.

Life with autism isn’t a series of multiple-choice questions that you may be able to fluke and guess all the right answers to. Autism is extremely un-predictable. And autism is a life-long neurological disorder – not something that will be over after a few dedicated years of study. Information regarding autism and helpful strategies is ever changing and rapidly advancing and I don’t want to just scrape by in these life exams – I want to get high distinctions and really know my stuff so that I can give it my kids my absolute best shot. I owe them that!

I don’t ever know what kind of drama I’m going to get as I drive to school each afternoon to collect the children. It is usually intense and it highly overwhelming but it is what it is so I need to be prepared.

***

And while I’m on this subject, I’d like to ask how many of you have met my youngest son Lucas?

See this little brown eyed smiley boy? He is 6 years old and thriving in his very first year of school. He is reading and spelling above his age level and is an absolute delight to live with.

He was diagnosed with Aspergers Syndrome last year, which places him on the higher functioning end of the autistic spectrum.

In fact – his presentation of autism is so mild that I honestly don’t know if I would have even have noticed his quirks at all if his older brother wasn’t already diagnosed and I therefore knew which indicators to look out for.

Lucas has only ever had one meltdown in the supermarket. I can take him almost anywhere without a problem. He is obedient, agreeable and generally unaffected by loud noises, crowds and a lot of activity, He doesn’t require the same level of routine and structure that his older brother does and he transitions to new situations extremely easily. He is generally an absolutely easy child.

And a lot of families have a child with autism that presents in a similar way to Lucas.  There are a lot of kids just like him out there and that’s wonderful!

But unfortunately, there is a huge misconception that all children on the spectrum are like Lucas and that parents like me who write about major supermarket meltdowns, screaming matches, violent behaviours and family crisis are just trying to extract sympathy at the expense of their children.

We are accused of painting an incorrect and highly inappropriate picture of autism and that we are a disgrace to the autism community. That we are cringe worthy even.

And I understand that. Honestly I do. Because if both of my boys were like Lucas, I would probably also feel the same way were I to read one of my blog posts about a day in the life of Harley. If I was only blessed with a quirky child who didn’t struggle with every little part of the world that they are forced to live in – I can understand that my writing seems overly woeful and self-focussed.

But you see, we also live with a completely different and more difficult presentation of autism as well. We have Harley who is plagued by anxiety, major sensory issues and OCD and I know that there are also a lot of parents out there who deal with a child who presents exactly like Harley. They would love to have a Lucas but instead they deal with a lot of the same stuff that we do.

These parents are also misunderstood and judged both by their peers and families and even sectors of the autism community and also know that unless you live with the major strife, angst and tension that we all do –you really have no idea and therefore no right to pass judgement. Yet they are judged. Frequently.

These are the families that I mostly write for. These parents who throw their hands up in the air screaming “WHAT NOW” every time a new hurdle presents itself. These parents who are at their wit’s end trying to stop their family from crumbling before their very eyes and these parents who would give anything for a full night of sleep.

These are the parents who write to me thanking me for showing them that they are not alone and that there is hope and the families who also endure harsh judgements and well-meaning but hurtful advice.

Truthfully: we honestly thought that by age 9, our son would have grown out of the major meltdown stage. But they don’t seem to lessening in frequency or intensity and we thought that the older that he got – the easier that he would become because EVERY ONE kept telling us that.

But you know what? He’s not! He’s really not! Sure there have been major breakthroughs and massive progress (all which I’m truly grateful for) but when you’re looking at the bigger picture we still have a very long way to go.

And at the end of the day it has had to come down to this for me. (And I apologise in advance if this comes across harshly as it’s not my intention):

If my writing and my accounts of our life offends, upsets or annoys you – by all means, click on a different blog. I cannot write about someone else’s reality, I can only share things as I see them. I do not write to cause controversy, I do not write to sensationalise my life and I definitely do not write in an attempt to procure sympathy for myself by describing every single supermarket meltdown.

This. Is. Our. Reality.

If you think I write unrealistic descriptions of autism as YOU know it, you are allowed your own opinions and I will probably never change your thinking so I’m not going to try to. But I’ll leave with a quote from one of my favourite writers Stuart Duncan who is a father of a child on the autistic spectrum because it pretty much sums where I’m coming from perfectly.

  “Autism is not an opinion, It is not politics. It’s not religion. It’s not about you or me and it’s certainly not about you versus me”.

Walking in my son’s shoes

“Leave me the hell alone!” I shouted as I threw my iPhone and watched as it hit the nearest wall.
I had no idea who was on the other end because it was coming from a blocked number, but I did know that I couldn’t possibly have dealt with one more person wanting something from me yesterday.

I was well and truly out of patience and at the brink of tipping over the cliff.

I took a deep breath, steadied myself and walked over to retrieve my poor phone from it’s resting place on the tiles half expecting it to be smashed into pieces to match my emotional state. But I was surprised to see that it only had a few minor scratches and I smirked to myself thinking: ‘maybe there’s hope for me yet’.

I sat down on the floor and put my head on my knees and took several more deep breaths.

I couldn’t believe it, I’d lost my cool AGAIN! I was coming apart at the seams and it scared the heck outta me.

And what made it worse was the realisation that this one had nothing to do with autism but everything to do with my mental state. I hated that I was back there again.

***

Every school holidays, mothers all over the world have to deal with exactly the same things that I do. Fighting children, constant hunger and requests for snacks, being told by their kids that they’re ‘bored’ several times a day, messy houses and endless chatter to name just a few. And I’ve always wondered if the other mothers that I observe really do just take it all in their stride and how many of them actually end up like me and continue to fall deeper and deeper into the bottomless pit that is depression instead.

Because, unfortunately, depression is still a major taboo in today’s society and no-one wants to talk about it so we all put on the same stupid brave faces and play by the rules smiling through tears and broken hearts.

And for me, this stupid depression is really such a chicken and egg type situation because I’m honestly not sure if my depression is a by-product of the stress that goes hand-in-hand with raising children with special needs, or whether I struggle MORE with raising these kids because of the depression that hangs over me. I just can’t figure it out.

Depression is such a complex ailment. It is like diabetes in the sense that nothing good comes from receiving the diagnosis and while it can be managed: sufferers really do wish that it would just go the hell away. No-one is thrilled when they are diagnosed and it really can make life such a pain in the butt.

But the comparisons end there.

Diabetes is a socially accepted medical condition because it’s got nothing to do with a person’s psychology but sadly, almost every single disorder that is connected to the brain brings with it harsh judgement, criticism and a negative stigma : Including Autism, ADHD anxiety and various other neurological conditions.

There are (and will probably always be) a portion of society who refuse to believe that these are true and very real diagnoses and people like me continue to fight for those whose lives are affected by one or more of them.

Because unlike diabetes; autism, anxiety disorders and depression are all hugely misunderstood. And depression and anxiety almost always go hand-in-hand.

Depression is always exacerbated by stress and stress comes from anxiety which is a common reaction when you’re in depression.

A vicious cycle indeed!

Then add to that the perception that it’s all about choices and that the depressed person should just ‘snap out of it’ or ‘get over themselves’. That kind of thinking is really unhelpful. And so is telling the person that they should be thankful for what they do have instead of focusing on the negatives. Comments like that are a huge slap in the face and totally undermine and devalue the depressed persons cry for help.

None of us choose this life. We all hate it as much as the rest of you hate hearing about it.

***
Anyway: I forgot to take my medication yesterday hence my complete mental breakdown and freaked out state.

There’s a very good reason that the Doctors tell people not to go off their meds without Dr supervision. It needs to be done slowly and over a very long time period.

When I awoke this morning, I thought I hated being a mother, I thought I hated being a wife and I wanted to run far, far away and never return. I wanted out and I didn’t care who was hurt in the process. I wanted to quit and to give away my children. I wanted to start again.

I recognised that I was heading downhill fast so I told Paul that I HAD to get out so I went for a drive to try to clear my head that was pounding furiously. He joked that I had to come back and we laughed about it but I seriously wanted to keep driving into the sunset.

I drove to the nearest shopping centre with the intention of grabbing a quick take-out coffee but as I stepped into the shopping c, I was hit by a wall of noise that immediately disconcerted me. I placed an ear plug into my ear (I’m deaf in the other) and put my hands in my pockets and walked with my head down. I could still hear every child’s shriek, every word of the song playing over the P.A. and the conversations of those near me. Sounds were mostly muted but still recognisable.

I felt blinded by the bright fluorescent lights above me and the neon shop signs around me were making me dizzy. I took a short cut through a department store and found myself having to block my nose by burying my face into my shoulder because my detour went through the cosmetics and perfume department.

My sensory system was on high alert, my anxiety levels were soaring and I just was.not.coping!

I grabbed my coffee and got the hell outta that centre as fast as I could go and went and sat in my car for the next 2 hours.

Alone.

Almost in silence.

Praying.

I asked (begged) God to show me what was going on with me. I asked Him why I was spiralling out of control and pleaded with Him to make it all go away.

It didn’t. But I don’t believe that God ignored me or refused to answer me. Because He did answer me, just not in the way I’d expected him to.

I was finally able to see that giving up or walking out is simply not an option. I realised that my purpose is still very much alive and that I needed to experience such lows today so that it could all become clear to me once again.
I needed to go through what my son goes through every time he leaves our house to help me to gain a better understanding of his struggles and “walk in his shoes” so to speak.

When I got home again, I sat down and chatted with Harley. I described what I felt today and his eyes were filled with amazement as I told him how the noises, lights and smells made me feel. I told him that I was sorry that I don’t always make allowances for him when I should and promised that I would try harder in the future.

He leaned over and hugged me and said: “You’re the best mother in the whole UNIVERSE”

And once again I sat there crying like a little baby.

But this time the tears were happy tears because I know….I KNOW it’s all going to be ok.

 

The Shell.

After writing my last post lamenting the difficulties that school holidays present for me, I had a couple more days of harsh reality checks. The day after writing it, I looked out the front of our holiday units and noticed two sisters who were about 7 and 8 making up a dance together in the grassed area. They were giggling and having the time of their lives making their own fun and self-amusing. It reminded me of holidays when I was a child with my sister because we were just like that!

I smiled at them trying to block out my own children who were arguing and screaming behind me and following me around moaning and whining about being bored.

I admit that the kids did get better as the days progressed but my attitude didn’t. I was still sulky and feeling sorry for myself and counting the days until school returns.

Fast forward to yesterday….

I was sitting on an old log on the beach quietly sifting the fine sand through my fingers. The sky was overcast and so was my mood as I watched the children run, jump and play. I turn my head to the small voice beside me: “Can you see the rainbow Aunty Fiona”? I looked over at the shell that my 8-year-old niece was holding up before me and noticed that it was broken and dirty. She turned it over and the sun hit the pearlescent ( made that word up) inner side and the spectrum of colours shone through.

It was remarkable because I would have just discarded it thinking that it was no good. But she was seeing it through eyes that were still young and full of wonder.

I glanced over at my boys and noticed that Lucas had gathered a pile of driftwood under one arm and some sticks and twigs in the other. I stood up and followed him over to where Harley and his other cousin were standing picking up pieces of seaweed and sea sponge. He smiled at me and said: “Mum, there are so many cool things here, God makes BEST nature stuff!” as he carried on rummaging through what the tide had washed up.

The kids we’re all in their elements picking and choosing their own personal treasures. They each wore a face shining with amazement, enchantment and pure joy. The pleasure they derived from an activity as simple as beach scavenging was so humbling.

I thought back to earlier in the week where I was so cranky that I felt ready to adopt my kids out. I was angry that things were going so pear-shaped and hated how every holiday seems to start the exact same way. All I could see was how hard Harley’s meltdowns were on *me* EVEN THOUGH I knew that there was a very good reason for them occurring: (He was in an unusual setting with no solid routine or structure). And I couldn’t see through the many layers of the outer storm to why it was even happening at all.

I was looking at the dirty broken side of the shell and was unable to see the beauty behind the ugly cracked and broken exterior.

Until my eyes were opened by a child who is still able to view life through untainted lenses.

And I asked myself: Isn’t that why I blog? So that I can be the one to teach people to look for the inner beauty rather than focussing on the outer yuck.

What a wake up call!