Making a difference…

My Facebook status today read: 

 I just got a care package in the mail with a beautiful letter from my best friend’s Mum…….it’s so wonderful to be randomly blessed like that! Made my day

 And it DID totally make my day.

But you know what? The package wasn’t filled with chocolates, flowers or expensive gifts because Mrs M knows that this is not what I cherish the most, but instead it was filled with something much MUCH better than that!

It was filled with words, and it was filled with love….Lots and lots of both of my two favourite things

She has taken the time over many months to cut out articles from various magazines and newspapers and she has saved them up to send to me.

But these aren’t just random articles; they were all chosen with the specific purpose of encouraging me. Some are about ASD, some aren’t but each of them has a message of triumph through trials and average people achieving extraordinary things.

It really is so humbling to read this stuff and realise what a blessing my children really are.

Mrs M is ‘officially’ retired but still teaches primary school on a casual basis and in her letter she wrote of an incident that happened at school recently with a little boy the same age as Harley who is also on the autistic spectrum. My eyes welled up with tears as I read about how this little fella had a big meltdown and started kicking, punching, biting and screaming at her because he wasn’t coping. And this all occurred because he ‘thought’ he had lost at a game.

She wrote that she remembered reading in my blog that the best thing to do in situations like this is to stay calm, speak quietly and remove the child gently from the scene so that they can gather themselves and calm down. She remembered that trying to punish or discipline a child in circumstances like this is not only futile but so so wrong because the child is not being ‘naughty’.

She then wrote that later on when he came to apologise to her that she was able to convey to him that she understood that he wasn’t angry with her but that he aimed it at her because he didn’t know what else to do and she just happened to be there. She told him that she understood that his anger overwhelmed him and he lost control in the moment.

(On a side note: I hear of situations like this happening time and time again to children on the spectrum and it breaks my heart to hear them spoken of as “bratty”, “spoiled”, “naughty” or “badly parented” kids, ESPECIALLY when I hear it from teachers or professionals in the educational system who have clearly no personal understanding of ASD. I can’t help but wonder if these people actually lived with a family affected by the many manifestations of ASD for even a day, would it cause them to maybe change their opinions?)

But thankfully, that is not the case here.

I read the quote below on a Facebook page called Single mothers who have children with autism and  it’s attributed to Laura Tisoncik.

And it says:

‘The difference between high-functioning and low-functioning autism is that in high-functioning: your deficits are ignored and in low-functioning, your assets are ignored.’

Think about that: To put that quote in the context of the above story…..I’ll dissect it for you all.

ALL disorders on the autism spectrum both high functioning and low functioning share the exact same core deficits . It’s called the Triad Of Impairments and it is made up of:

• Social and Emotional Interaction
• Social communication and Language
• Imagination and flexible thinking

 Now Because the little boy in Mrs M’s story has Aspergers (which is high-functioning autism)….his deficits are ignored.

Put simply – people could look at him and see that he LOOKS normal and wrongly assume that he must therefore BE normal and place unfair expectations on him forgetting (or being unaware) that he has impairments in all 3 major areas of social interaction. So his deficits are ignored because they aren’t obvious.

And because I don’t have a low-functioning child – it wouldn’t be fair for me to write anything about perceptions or realities here because I will never understand it like a parent of one of these beautiful kids so I won’t even try.

So back to Mrs M….

I was so incredibly touched by her story. What a remarkable teacher she is and how excited I was that someone read the words of a simple stay-at-home Mum and didn’t disregard my advice because I am not university educated or professionally qualified in autism. I’ve always said that I may not hold any degrees or have any medical knowledge per say but I know my child more than anyone else on this planet and this THIS is why I continue to write about my family on the world-wide-web.

THIS is why I put us out there for all to judge in the small hope that even one person would learn that individuals on the autistic spectrum are worthy of the extra time and effort that it takes to learn more about how to best parent, live with and befriend them. 

Kids like mine are amazing but all too often they are misjudged, misunderstood and grossly underestimated.

There needs to be more Teachers, Doctors, Health Professionals and Community Workers out there like Mrs M who are teachable and willing to listen to parents. And I for one am not going to stop writing until I’m satisfied that I’m being heard

I seriously love this kid…..how could anyone not want to learn to understand more about autism.

Sanity comes at a price.

It was my birthday last week and my Mum said she had NO idea what to buy me so instead: she took me shopping!

And one of the things that I’ve always wanted was one of those little CD walkmans (Discmans) and some bright funky headphones. So she bought me both and I was absolutely STOKED!

(I think I may have been just as excited as I was when she gave me my very first Walkman when I was a teenager… Ahh…..the memories!)

I wasn’t sure if we would even find one in the shops because they are almost obsolete now with technology advancing the way that it is, but I was determined to find one all the same.

The main reason that I really wanted one was because I have a lot of teaching CDs that I’ve never had the time to sit down and listen to, and it would take me forever to load them all onto iTunes so this seemed like the next best thing to overloading my iPod.

Guess what? Not only did I find one, it only cost a low $44! Nothing like the hundreds of dollars that they went for when they first hit the market back in the 1980’s!

And there is an added bonus to these as well: They block out the incessant whining, screaming, crying and moaning that is an unwelcome constant in this place.

And for me…..you can’t put a price on that kind of peace.

Things have been more than a little rough around here lately. We’ve had problems with all 3 children on different levels and we have struggled as a couple to see eye to eye.

Like I said: Rough.

This week alone we have had some pretty huge fall-outs and meltdowns and Harley’s OCD quirks seem to have returned with a vengeance as have the sleep issues.

In fact, Mum and I were giggling today as we recounted the story to Paul of the night last week that he worked late and we spent literally hours trying to get Harley to stay in his room and sleep.

He had come out so many times one night that I finally resorted to piling up 2 heavy wooden chairs, 2 large suitcases, a cot mattress, a beanbag and cushions in front of his door to stop him coming out and even that only worked for a matter of minutes.

Mum and I took turns walking him back into his bed, reading to him, sitting with him, praying with him, brushing him and rubbing his back only to have him continue to refuse to remain in bed.

Lately, his OCD has extended to his walking in the sense that he has an uncontrollable urge to retrace every third step that he takes and he has to walk the perimeter of each doorway of every room that he enters before he can calm himself enough to actually walk inside. So walking him back to his room was made even more of a challenge by that!

He washes his hands literally 60 times a day so that they bleed and are raw and tender.

OCD in full swing is like something out of one of those movies where the audience laughs at the ridiculousness of the scene.  I remember watching movies such as Crazy People where the characters seemed so far-fetched that it really was quite laughable, but little did I realise back then just how debilitating living with OCD can be for not only the sufferer but their immediate family members as well.

My little Harley often complains that his brain is “full” or that it won’t slow down which causes him great anxiety and angst which usually results in him self harming in some way. (Like the excessive hand washing).

And lately, I think I may have had some insight as to what having a ‘full’ brain might feel like because I have had trouble getting my brain to engage when I need it too.

It has been sluggish but also frantic and somehow all at once?

I have struggled to make decisions (even more so than usual) and have desperately wanted to just escape and get away from everyone and everything.

Simply thinking straight has taken a lot of control and honestly it really seems completely futile because nothing….NOTHING is in my control at all right now.

But in saying that: There is a major difference between Harley’s autistic-ally wired brain and my neuro-typically wired one:  And that is the ability to switch off thought loops and obsessions at will.

I can choose to not think about things that overwhelm me. I can choose not to allow thoughts to override common sense and I can choose not to act out on impulsions.  Right now – he can’t do any of that.

I believe that he will one day be able to do this as well, but it will always be more of a struggle for him because of the way he is wired.

The good news is that he is wired to be superbly focused and intimately knowledgeable about his chosen interests. And this will help him to be amazing at whatever field he chooses to work in when he is older, but the downside is that he will have to learn how to just be.

He will have to learn how to slow down his thinking to give himself and his brain a rest once in a while!

He just needs to find what works best for him.

Writing it out and listening to music and teaching CDs are what work for me. Speakers such as Bill Johnson, Danny and Sheri Silk, and Joyce Meyer help me re-focus and replace the confusion with healthy thinking.

And this is why I so desperately wanted my Discman…..$44 is a very small price to pay for sanity I think.

Depression……

Tumbling, Jumbling,
Crowding out my brain,
So many memories,
They’re driving me insane,
.
Too much pain,
Too many thoughts,
Can’t process anything,
Out of good retorts,
.
Wishing, Hoping,
Willing them to cease,
Please leave me alone,
And give a girl some peace!
.
Need some space,
Need a real break,
All this crap is,
More than I can take,
.
Fumbling, Mumbling,
Wanting to be heard,
It all comes of as babble,
And makes me sound absurd,
.
So darn tired,
Want to go to sleep,
Wake me when it’s over please,
And leave me in this heap.

Step back in time

My Mum has decided to do a really big clean out in her house. Kind of like spring cleaning. But it’s winter.

Well….she calls it “downsizing so that there’s not so much for you and your sister to sort through when I die” but that’s far too morbid for my liking! So winter/spring cleaning it is

And last week while I was up there, she was clearing boxes out from under her stair case and she pulled out a dusty box full of all the school work that we brought home over the years!

I can’t believe she has kept it all!

Especially since I am the mother who throws out everything. I can’t stand piles of paper everywhere. School work doesn’t last long here.

{Although, having said that: I do keep the really special pieces of artwork that all my kids have done and have laminated them for posterity. So I’m not totally evil! }

I have had an absolute ball reading through all my old school books and I especially loved reading the poetry that I wrote when I was in grade 2. I had a whole book called “I can write stories” . CUTE!

I noticed that my love for writing poetry and writing in general must have started earlier than I remember and I laughed and laughed at the stories that my little 7 year old brain came up with!

Here is a poem/story that I wrote called: Scott’s Tortoise learnt to fly

(And here’s a little bit of behind the scenes info for you: Scott was my very first boyfriend. We were SO in love LOL)

…..
One day when I was out playing,
Suddenly I heard someone wailing,
I looked right up to the sky,
And then I saw a tortoise trying to fly,
And so I shouted loud to him,
“Come on, come on, and fly to that limb”
I climbed up that limb and got him down,
And ran with him right out of town.
…..

Hilarious!

Wonder what else I’ll come across

Split Personalities

It was raining, it was chilly and it was dark out. It was almost 7pm and we were absolutely starving, but all the restaurants in the little town we were staying in were closed on Wednesday nights. We had no means of cooking our own meal in our little villa and we had considered driving to the next town.

But then we found a strange little place that was clearly having an identity crisis. This place served both Thai and Mexican food which was the strangest combination we had ever heard of together. The two completely different cuisines made no sense together whatsoever.

Amused, we walked in and the cowbell chimes on the door should have been our first clue to run far away and never look back. Well, that and the fact that there was only 1 other couple eating there. But we were hungry and desperate.

We sat down and the (what looked like) 12 yr old waitress took our order. We giggled as we looked around the room and noticed the Thai silk scarves hanging on windows with bejeweled sombreros hung haphazardly next to them.

And the hessian wall hanging of a cactus below a shelf proudly displaying a Buddha statue.

Bamboo makeshift blinds with the Mexican flag painted on it covered a bay window that housed a shrine of Thai goddesses and paraphernalia.

Everywhere you looked there were oddly juxtaposed items on display all brightly lit up with coloured fairy lights draped over every other possible surface.

Tacky doesn’t even come close to describing it but somehow somehow it worked.

We decided that it should be renamed the “Split Personality” restaurant.

I often feel as though I have split personalities myself. I have my mother personality, my wife personality and my Fiona one.
They are all coming from the same inner well but they are all incredibly different. Of course they all overlap at some points and they’re all part of who I am but I still haven’t figured out how to make them all work as one. I haven’t worked out which one should take precedence because the mother one always seems to overtake the rest.

And having this week away from the children and the demands of my everyday life has illuminated some things about me that I have been burying and refusing to deal with for a very long time.

Paul and I spent a lot of time apart during our week “together”. And that may seem strange to some people but we both recognised that we needed it as much as we needed our couple time. We know that we are unlike other couples and that we can’t do the whole 24/7 thing that others can. It doesn’t work for us.

And I really needed to be alone.

I needed to not be needed. It’s as simple as that.

Sometimes I feel like Paul and the children are each pulling one of my arms or legs like a rag doll that is being pulled in four different directions and instead of working through this I find myself withdrawing and becoming more and more resentful toward all of them. My mother and wife personalities have left no room for my Fiona one to shine.

I’ve had a lot of anger rise up this week that I hadn’t expected to see. Things I thought I’d dealt with popped up and threatened to drown me. I prayed about it and God showed me a few home truths about myself that were tough to see but necessary to confront.

This week, I’ve picked fights with Paul unnecessarily because I placed high expectations on him and got angry when he didn’t react the way I wanted him to. I’ve accused him of not loving me and sulked and cried my way through.

He hasn’t argued back with me once to his credit and has stayed firm and strong.

Last night, it was our last night away and I sat down in front of the fire in our cozy little villa in my husband’s arms and cried and cried. I told myself that I was hurting because of something someone had said to me that I felt was borderline nasty, but I knew that it was more than that. I knew deep down that it was because of guilt.

Because the incredibly selfish part of me didn’t really want to go back to my life the next day. I didn’t want to be the Mum anymore. I cried because Paul desperately missed the kid’s and I didn’t. I mean-what kind of mother says that? What kind of mother doesn’t pine for her kids when she’s been separated from them for a whole week?

And Paul answered me: A mentally, physically and emotionally drained one.

He reassured me that it’s not the children that I’m not missing but more the dramas, the upsets, the hard work and the constant noise that I don’t miss instead.
And he’s absolutely right.

I am writing this in the car on the iPad and right now we are 3 hours in on our 7 hour drive and I’m already feeling the excitement stir at seeing my treasures again.
Paul is Right!….He is sensible, methodical, precise and firm – all the things I’m not.

And just like that kooky little restaurant ….we may be a strange mix who look weird to everyone else, but somehow somehow we work.

And for that I am thankful.

Just another day of hilarity!

Outings are always fun in one way or another with my kids. You can be assured that there’s rarely a dull moment that’s for sure!  Ella has been staying at her friend’s house for the past 2 nights so it’s just been me and the 2 boys. It’s been fun and dramatic and exciting and devastating all at once!

But I have definitely noticed the massive change in dynamics between 2 and 3 kids. And I miss my girl like crazy!

Normally whenever I go out with the kids during the holidays, She takes one boy and I take the other making the whole experience much more palatable!  But yesterday, they were separated because one of my closest friends took Harley for a few hours off to Build-a-Bear (which is one of his all time favourite places in the world) and I got to have a Mummy-Lucas day.  We had an absolute ball!

We did all the fun things that sadly we have to miss when Harley is with us like eating Happy Meals (Lucas can eat gluten – Harley cannot).

We went to a play centre with ball pits, flashing lights and huge climbing structure and we went shopping at a toy sale in a heavily crowded shop. In this shop – Lucas got lost and had to be called over the loudspeaker *ahem* and that alone was an interesting experience. This kid is the exact opposite of his brother sensory wise and is not the least bit intimidated by lights, crowds or noises. In fact, he thrives on them.  He ran off in pursuit of the toy aisles and I couldn’t find him anywhere!

I felt the familiar panic rise in my chest and went straight over to the lady standing on the front door of the store and asked her if she’d seen a little boy wearing jeans and a Lego man shirt. She said that she hadn’t so I asked her to please make sure that he doesn’t leave with anyone.

I couldn’t believe it but she actually rolled her eyes at me and turned to her co-worker and uttered “another runaway child”

I looked her in the eyes and said: “Well, actually, I’m not asking you to help me find him but you need to know that he’s autistic and it’s likely that he would walk out with anyone that grabs his hand because he has no sense of danger”.

 The stricken look on her face showed that my comment had the desired effect on her and she immediately rallied a whole group of workers to help find him.

About ten minutes later, I spotted him casually strolling along holding a big stuffed dog under his arm and smiling broadly. I ran over to him and grabbed his little hand about to tell him that I was glad I found him when a worker started laying into him and telling him what a naughty boy he was for running off! I smiled thinly at her and turned by back and walked away with my totally oblivious little boy skipping along beside me.

Later on, we met up with my friend and Harley for coffee and (as they always do) my boys needed a toilet stop. I was walking with Lucas over to the restrooms when he clutched his backside with one hand and grabbed mine with the other and ‘shouted’ “Quick Mum, hurry up, the poo’s already coming out”…..

Yes I know: charming right!

We were in the restrooms and while I waited for him to finish, I noticed a boy about 9 or 10 twirling around in circles on the spot. He was holding a Sonic plush toy and talking to it saying “You’re my best friend in the whole world” and I thought: Hmmmmm, that’s rather familiar! LOL

As we walked back to the coffee shop I noticed this boy again with his mother and he now had his jacket off and was wearing a Sonic T-shirt with Lucas’ real name written on it so Harley marches up to him and says in a completely monotone voice: “I have that Sonic, that’s my brother’s name and I like Sonic too”.

They boy looked up at Harley and said in an equally monotone voice rather matter-of-a-factly: “Sonic is my best friend”.

“Ok” replied Harley and walked off!

I love moments like these – it’s like they both sensed something familiar in each other. It was gorgeous, hilarious and awkward all at once.

We finally bid farewell to our friends, left the coffee shop and I had a couple of grocery items to buy so we walked over to the supermarket so I could quickly grab them before we left. As I was waiting at the checkout to be served, there was a little merry-go-round toddler ride out the front only a couple of metres away so I told the boys that they could play on it while I payed the lady.

After I’d finished, I walked over to them and noticed that there was another little boy who would’ve been about 5 or 6 also playing with them. I said “Ok, boys, it’s time to go, say good-bye to your friend”.

Lucas turned and waved and said “Bu-bye” but Harley looked at me indignantly, screwed up his face and declared (VERY loudly): “He’s not our friend, he’s just some random kid who was already here when we arrived” while rolling his eyes at me. “Sheesh Mum”.

Quick as a flash, I scooped him up under my arm, put him in the trolley with the rest of the shopping and took off as fast as I could.

Like I said: never a dull moment!

Autism, haircuts and a mother who wants to run away!

I looked at my boys on Friday when they got home from school and realised that they were both long overdue for haircuts. I decided that it would be a good idea to get them done over the weekend because then I would have Mr Patient around to help me. But yesterday he had to go into work, and what was supposed to only be a few hours turned into 13 so he obviously wasn’t able to come with us.

Now, I’m not totally stupid – I wasn’t going to take all 3 kids out to a crowded shopping centre by myself so I wisely waited until today (Sunday) instead. I figured that the boys would be fine with the change of plans. And yes, I know what all you autism parents are thinking right now!

Silly SILLY girl!

Normally I would have written a social story or talked them through this minor change at the very least. And I should have learned from the numerous times that I have done silly things like this before – that changing plans without prior notice NEVER goes well.

Anyhoo….

**

We pulled up in the car park and before our seatbelts were even undone, the tears started.

It took Mr Patient almost ten minutes to coax the already-past-it Harley out of the car.

But getting him to walk wasn’t going to happen, So he had no choice but to carry him.

We arrived at the hairdressers and she asked the boys who was going to go first. And before they could answer: Harley took off.  He literally ran for the hills as fast as he could go. As you do when you have sensory processing disorder and you are confronted with being stuck in the middle of a crowded centre with strange noises, smells and bright lights.

So Mr Patient took Lucas and walked over to the hairdressers chair while I hot-footed it after Harley through the centre.

I eventually caught up to him and took my sobbing shaky little boy over down a quiet alleyway and stroked his head until he calmed. There was clearly no point talking to him. So I devised a quick plan in my head and we walked over to the nearby $2 shop where I bought him a squishy angry birds toy to squeeze. It seemed to do the trick and we managed to walk back and I was finally able to talk to him and ask him what kind of cool haircut he wanted. My distraction worked and we seemed to be right back on track again.

And finally he gave us a smile.

Not long from then, his turn came and he sat down in the special seat and (sort-of) let the hairdresser cut his hair whilst he squeezed Mr piggy vigorously. He stayed put to our delight and came out looking gorgeous.

We all realised that we were hungry so we decided to go and grab some lunch and started walking towards the food court congratulating ourselves on surviving so far.

Until we heard that tell-tale moan that we’ve come to know that means that trouble is looming. We turned around to see Harley crying and flapping furiously.

We sighed and I picked him up and carried him down ANOTHER side alley and it took a while but I finally managed to get to the bottom of this episode….It tuned out that some pieces of freshly cut hair had fallen down underneath his collar and was itching him madly. I could see that he was close to another meltdown and I knew I had to act quickly and I also knew that I had come unprepared so had to duck into a nearby shop and buy him another shirt.  I knew we’d never make it through lunch while he was in such enormous sensory overload.

So in ten minutes – with two of us holding him down and sprinkling baby powder on his neck and removing the old shirt and replacing it with the new one later – we finally made our way to the food court crossing our fingers, toes and anything else that we could think of!

But look at this:

A smile.

It was short lived because soon he started to obsess about having ‘dirty’ hands and wiped them vigorously with baby wipes whilst demanding that we take him to a restroom so that he could wash them properly.

But it was a smile nonetheless.

 

So, we gave in – took him to wash his hands and then again after he’d eaten and started to walk back to the car.

I saw this and grabbed my phone to take another snap – moments like this are precious.

And here’s the bit where I admit that I got home and burst into tears of complete exhaustion and got down on my knees and yelled at God.

Not because I’m mad at Him. Not because I think He gave us a bad deal in life but because I can’t for the life of me figure out why on earth he believes in me as much as He does.

Why does He trust me so much?

I know He will continue to give me the grace that I need to keep on keeping on but honestly, after today….I think I might go to  bed for about a hundred years! It’s all too bloody hard!