The Father’s Day Gift.

I really don’t know why I do it to myself.

Maybe it’s my sense of adventure seeking out a new challenge, or maybe I like pushing my luck as far as I possibly can to find out exactly where the limits lie or maybe it’s just because I’ve gone completely stark raving mad?

Who knows?

But whatever the reason – I surely didn’t have my sanity hat on when I decided to take all the kids to the shops after school to buy a fathers day gift for their Dad this afternoon.

Ugh! I really should know better.

Shopping and Harley just do not mix. They are a lethal combination and should only be attempted if the conditions are right.

Clearly they weren’t this afternoon.

And the stupidest part is that I have an unwritten list of rules permanently etched into my brain about this exact scenario but for some ridiculous reason – I decided to ignore it all and go for broke today!

Stupid stoopid girl Fiona!

And for those wondering about the abovementioned list – if I had had actually taken the time to write it down on paper – it would look something like this:

 Rule number one: Don’t ever spring things on Harley without pre-preparing him first.

Ever.

No exceptions. It’s ALWAYS a bad idea.

 Rule number two: Don’t take him somewhere that he’s not familiar with.

 Rule number three: Don’t take him somewhere unfamiliar when it’s unplanned and he’s hungry!

 Rule number four: If you break all the above rules – be prepared for a kicking, screaming, hitting, punching child in the middle of the shopping centre.

The duration and location may vary but the meltdown whether large or small, loud or silent is inevitable.

This is because he is not wired to handle unexpected surprises that involve a massive onslaught on his sensory system. I know this yet I was selfish today and tried to squish my square peg child into the round hole that was my schedule.

But….we live and learn. There was a part of me that thought that I’d read him well after school this afternoon. I saw an agreeable, obedient happy child and I honestly thought that today would be different. He came out of school in a brilliant mood and I honestly thought I was on a winner.

*~*

So now that you’ve all giggled at the sheer ridiculous-ness of my misguided efforts – you have to stick around and read the rest of this rant and offer me your most heartfelt condolences in the comments even though I brought it all on myself

Ok?

Right.

Let’s start.

Just to set the scene – we were in the car park at school this afternoon and I let the boys run around on the grassed area at the front of the school for about ten minutes to burn off some energy. They climbed into the car and I announced that I thought it would be a great idea if we went together and bought the last part of Daddy’s Father’s Day gift since I have so much on over the next few days and wouldn’t have any other chance.

I told them that I would buy them something special for afternoon tea as a treat and that we only had to go to 2 shops.  There was a little bit of moaning but not enough to make me pull the plug on the idea so off towards the centre I drove.

We arrived at the shopping centre and walked straight towards the food court so I could fill their bellies first in the hope that it would pacify them somewhat.

Ella decided that she wanted a caramel sundae from McDonalds and Lucas did too so we went and lined up.

Harley started flapping his arms with a frightened look on his face so I asked him what was wrong and he said that he didn’t know what to choose. He was quite upset and frazzled by the choices on the board so I narrowed them down and gave him the choice of only 2 things.

I asked him if he would rather fries or a sundae and if he wanted something sweet or something salty and he burst into tears.  I had obviously overloaded him with the two-part question.

He slumped to the floor of the restaurant and gripped my leg crying and rocking back and forth saying “I can’t know…..it’s too hard, I can’t know……”

 He had one hand clapped over his right ear and his other one was intermittently punching me in the leg. His face was stained with tears so I got down to his level and hugged him close for what seemed like an eternity.

This is one part of autism that I hate.

I hate what it steals from him and I hate that it renders him unable to function in even the most simplest of tasks.

People were starting to stare and I’m not ashamed to admit that I glared back at them protectively. My face dared any of them to come closer and be subjected to the wrath of the Mama tiger that was growling inside of me.

I heard the music blaring over the P.A.system and for the first time noticed that the group of teenagers over on our right were singing loudly along to it. No wonder Harley was melting down. This must have been agony for him.

I handed Ella some money and asked her to go and order hers while I sorted Harley out so she went and rejoined the line.

Lucas came and grabbed my other leg and asked me what a sundae was? (Can you tell we don’t get out much lol!)

Thankfully Ella was served quickly and she soon walked over with her ice-cream and I asked her if the boy’s could taste it and because she’s such a beautiful girl – she happily obliged and spoon fed them both a taste.

Lucas instantly decided that he wanted the same thing and I asked Harley if he liked it.

He nodded.

Great. We were making progress.

Then my brain vacated me for a split second and I asked my already overtaxed, undecided, frantic child if he wanted chocolate, strawberry or caramel topping?

Cue another session of flapping, crying and confusion.

“I don’t know what to pick Mummy, it’s too hard”

Oh Crap. I’d done it again.

My brain had DEFINITELY taken leave by now.

Why the hell did I tell him that there were 3 flavours? He like the caramel – why oh why didn’t I just buy him that and get it over with?

So guess what I did?

That’s right…I bought a plain, a caramel, a strawberry AND a chocolate sundae and placed them all in front of the kids and told them to have a try of them all.

Yep, I filled them to the brim with a heap of sugar and preservatives and hoped for the best!

I also reminded myself that I had to remember this when they refused dinner tonight and put the whole damn thing down to a learning experience.

And the father’s day gift?

The one that I could only get at THIS particular shopping centre?

Yeah, well….it didn’t happen.

I guess I’ll have to go back first thing tomorrow morning after the school and pre-school drop off.

And when you fill out the nomination for Mother Of The Year…..It’s spelt:

F-I-O-N-A!!

Wordless Wednesday 31/8/11 – Riding High

Making big plans

The weather here in Australia has really started to warm up and the fact that Spring is only 3 days away is very apparent.

That means that soon we will start to put our new plan into action. We have decided that we will be inviting other families over here for BBQs on weekends since that’s way easier than trying to manage our kids and their anxieties at an unfamiliar place.

I walked out the backyard this morning to hang some washing on the clothesline and it really hit me just how disgusting our yard is at the moment.

We are not known for our gardening skills or our landscaping talents. And you can see from these photos that we are BRILLIANT at growing weeds!

So can you guess what we’re doing this Spring?

Yep….lots of hard work, shovelling, concreting, planting and paving!

We have phoned a landscaper and he will be coming out soon to help us to decide what we can do about it and give us some ideas. We plan to do most of it ourselves to cut the cost down but we know that we desperately need professional advice. The yard is neglected and boring and really really ugly.  Maybe once it’s done the kids will be more willing to play out there instead of being glued to some sort of screen?

And the biggie:- I  have been begging Mr Patient for an outdoor kitchen for YEARS and I have found some reasonably priced ones online and I’m pleased to announce that he is coming around!

My goal is to make an outdoor entertaining area that is so lovely that we have no need to have kids running around in our house!

I’m gonna be SO worn out after this!

Our herb garden!

We grow pretty awesome weeds!

Erm...Only a LITTLE bit neglected!

Understanding and working through guilt.

Mum introducing baby Harley to a horse

In just under 2 weeks time – Mr Patient and I are going away overnight to attend my cousin’s wedding. The venue is a couple of hours drive away from here and rather than try to drive back later that night, we have decided to stay in a nearby hotel instead.

I’m actually finding though – that I’m having the exact opposite emotion to guilt (whatever that’s called) whenever we leave the kids with friends or family these days.  Instead of feeling guilty that we have left them…..I feel guilty because I’m NOT missing them….How twisted is that!?

But it hasn’t always been that way.

For many years I carried guilt and shame related to leaving my children and it’s only been recently that God has set me free from this burden and I’ve been able to see that in actual fact – in the particular circumstances that I have lost sleep over I didn’t even do anything wrong. It can all be traced back to the different brain wiring of my son and the fact that we didn’t know anything about it.

I clearly remember way back to in late 2003 when Ella was almost 4 and Harley was still a baby.

None of us had slept more than an hour at a time on any night due to Harley’s constant screaming and crying, but my parents knew that we were absolutely exhausted and needed a break.

So they offered to mind the kids for us up at their place (in the country) for 5 days so that we could escape over to the coast to stay in a gorgeous little bungalow on a lagoon that they had booked for us. We were SO excited at this idea and knew that we desperately needed this break and looked forward to it for WEEKS.

Prior to this – I had been having headaches and facial numbness for months but it had gotten a lot worse in the weeks leading up to this escape so I went and saw the seventh Doctor in two years and listed my symptoms for the 7^th time expecting to be sent away being told that I was a hypochondriac again. But this time I demanded that the Dr do an MRI because I wanted to put my mind at ease once and for all so that I could enjoy this holiday with nothing to encroach on my peace.

But of course the MRI revealed the brain tumour that I had been accused of inventing symptoms for, and our little couples escape never happened.

On the night before I was due to go in for my surgery – my baby Harley came down with the chicken pox and wasn’t allowed to come and visit me in the ICU or even after I was transferred to the brain injury ward until the spots had disappeared.  On the morning of my admission to hospital, my Mum clearly remembers standing on my front porch waving her daughter off to have life-saving brain surgery while her grandchild itched and cried for his Mummy. His little arms reached out to me but I had to turn and walk away. THE hardest thing I’ve ever had to do to date.

When he did finally get the all-clear from the Dr and was allowed to visit me in hospital – he didn’t seem to know who I was. He was only 14 months old and Grandma was the only person he responded to. This was my first introduction to mother’s guilt.

Fast forward almost 2 years and 2 major surgeries later and we finally took that well-deserved holiday on the coast and by then – we were even more in need of a break than 2 years earlier and couldn’t WAIT for the day to arrive.

So we drove the kids up to Mum and Dad’s and jumped back in the car and drove to the coast to r-e-l-a-x!

But do you know what?  Once we got there – we didn’t know what to do with ourselves!  We didn’t know how to just stop and we were unable to relax much because we continued to be consumed by guilt.  After our first swim in the pool, dip in the spa, stroll along the beach and dinner and movie date – we were all outta ideas! And this was all done in the first day!

We weren’t used to having so much time alone together and didn’t how to spend it! We phoned the kids several times a day and actually ended up going back a day early to surprise them! We had clued Mum and Dad in and asked them not to tell the kids.

And to this day – I’ll never forget Harley’s reaction.  Even as young as almost 2, he showed signs of being very distressed by changes in plans.

(And recalling all of this now – I can’t believe that we missed the “A” word for so long).

 So we pulled up in my parent’s drive way and walked around the side of the house because we could hear them playing in the back yard. We didn’t call out to the kids – we just stood there and waited for them to spot us.

Ella saw us first and immediately came running over exclaiming “Mummy, Daddy! I’ve missed you!” But Harley burst into tears and clung to Grandma’s leg… He was confused and wouldn’t come anywhere near us. Me particularly. I remember how devastated I was by this but I think I did a fairly good job of disguising my hurt. We’d only been gone 4 days and I already felt as though I’d abandoned my child and his reaction to me just magnified my guilt. It took me a very long time to stop blaming myself for going away and leaving him even though deep down I knew that we desperately needed the break.

That afternoon, Harley stayed close to his Grandma for hours and eyed me suspiciously from afar.  He lay on Grandma’s knee and drunk his bedtime bottle that night and she was the one who laid him in his cot. Not me.  He didn’t want me. I remember how much my heart broke that night. It stayed with me for years but I didn’t know then that this was one of the early signs of his autism causing confusion, and anxiety in him.

~*~

I was only thinking about all of this today and for the first time I actually GOT IT!

I finally get that these incidences of Harley’s over the top reactions to change were nothing at all to do with my parenting (or lack of). I can now see that they were both just very early indicators of a little boy who is wired very differently to me.  I understand that his response to these events can be attributed to the fright response that is common amongst ASD children when they are confronted with a situation that didn’t go the way that they expected. Harley was simply reacting to change and clung to that which made him feel safe.  And in both of those circumstances – It was my Mum that was his safe place.

It has all become crystal clear to me this week exactly WHY Harley has such a closeness with Grandma.

I now understand completely that she was the only constant in his life every single time that things have gone belly –up.

She was not only someone who was there for him when he needed it most.  Someone who knew he was special and knew that he was different but chose to love him unconditionally and without judgement.

Thank God for my Mum.

And thank you God for healing my hurt.

WE DID IT!

Well, I think I’m seriously starting to get the hang of this parenting a child on the spectrum thingy!

Today was the book week parade at school and I thought it was going to be a shocker based on the over-the-top reaction I got from Harley this morning as I packed his costume into his bag.

He started crying and told me that he didn’t want to go to school but I bribed him by telling him that I would sign him out early and take him to McDonalds for lunch.

 He went dressed as Paddington Bear and I made him some furry ear muffs so that the noise of the excited children that was filling the auditorium would be muffled.

They worked a charm!  He did so well and was really proud of himself for walking up onto the stage with his classmates.

And I was proud of him too! Only a couple of years back we would have NEVER have gotten him up there!

Hooray for progress!

I kept my promise and took him out early for lunch.  It was wonderful to spend some time with my boy alone – he is a completely different child when he isn’t competing for attention with his siblings.

We giggled and chatted for almost an hour together before we went to collect Lucas from pre-school.

When we got home again from school I could see the signs of exhaustion forming on his face so I set up a crash pit with bean bags and pillows in the corner of his room and told him to have some fun jumping around and getting it all out of his system.

Then after about 15 minutes of this, the boys both went outside and finished off their sneaky OT session with some time on the trampoline.  I was just starting to pat myself on the back for reading his signs so well and congratulating myself for helping him to meet his sensory needs when I realised that it was already 6pm and I hadn’t rung the local Chinese restaurant to order dinner.

We had promised the kids last week that if they completed all the chores that we had allocated them through the week that we would reward them with a takeaway meal on Friday night. They had all opted for Chinese which I think is hilarious since all they ever eat is the boiled rice, but who am I to argue?!

So I rung the restaurant to place our order but they told me that there was over an hours wait on take out orders…..

Hmmmm, time to think very quickly. Harley is a creature of habit and I knew I had to choose my words carefully because he was sure to be disappointed at the change of plans and would panic if another option wasn’t immediately offered.

But just then the phone rung and Mr Patient asked me if we wanted to try the new family restaurant that had just opened in town instead.   Yup..it was decided.  We were going to give it a go.

I got the kids all ready and the second that Mr Patient drove in the driveway – we went and climbed into the car and set off on our way.

The restaurant was SO noisy, SO busy and SO crowded that I turned and looked at Mr Patient uneasily. We both knew that it may not be the best place for us but Harley surprised us by saying that he wanted to sit near the outdoor heaters that they had turned on so we took this as a good sign that he was willing to stay.   We approached the door hostess a little bit more confidently than we normally do and as she led us to our table I smiled as I looked at all the other “normal” families sitting around laughing, eating and drinking.

It was a fabulous feeling. We had done this with NO social story, NO pre-planning, had brought NO electronic games and were basically flying by the seat of our pants!

But I know from experience that things can change in a heartbeat. That’s the nature of the autistic spectrum and it often doesn’t take much to tip our precious little boy over the edge from coping to losing it.

And true to form -just after Harley had eaten his last chip, he looked at me and his bottom lip started to quiver. He leant into me and grabbed my hand placing it over his face.

I looked over at Mr Patient and he had registered it as well. Only seconds later the lip quiver turned into a moan and then a groan and finally a loud sharp cry of pain.

I glanced at my half full glass of wine on the table and sculled it as quickly as I could. Mr Patient instinctively grabbed Lucas’ jacket and started putting it on him and Ella started to pack up all of the crayons and colouring-in sheets  we had been given without even being asked to.

It was the most bizarre thing. Nobody said a single word but we all knew what had to be done. We all knew we had to get outta there quickly so each did our part to make it happen.  Our family were in sync with one another and we were all doing our part to avoid the oncoming freight train from crashing into us.

We have seen the volcano that is an over stimulated, non-coping Harley far too many times to not recognize the early tremors.

Mr Patient picked Lucas up in his arms and headed for the cashier to pay for our unfinished meal and I grabbed Harley, threw his heavy 8 yr old 25 kg body over my shoulder and made a swift beeline for the door.

I was almost out when I  saw a friend sitting near the door. She stood up to say Hi so I smiled and placed Harley down on his feet to hug her back all the while keeping a close eye on him knowing that I was playing with fire here!

I made our rendezvous as quick as I could without being rude and then excused myself politely and grabbed Harley. We  only JUST made it around the corner into the deserted car park before the tears started to flow. They streamed down his face like a leaking tap and his whole body shook with anxiety. All of the turmoil and pent up emotions were finally being released. He needed to cry.

I wrapped him tightly in my jacket saying “Shhhhh” in a gentle whisper and rocked him back and forth in my arms like a baby. It worked because he completely calmed within minutes.

Why did he come down so quickly?

Well – I can only speculate but I think that it had a lot to do with him knowing that his family “get” him. And not only do we get him but we love him unconditionally and leaving a table with unfinished food on it is nowhere near as important as getting him as far away as possible from a situation that frightened and overwhelmed him.

We did it!

After Mr Patient and I had settled the kids into bed after coming home, we sat down together on the lounge and smiled at each other.

We did it!

We actually did it!

We managed to have a meal out unannounced and we worked together as a team and made it happen!

Sure – it may never be EASY but it is completely doable.

And doable is WAY better than impossible.

Have a great weekend all.

LEGACY

This would have to be one of the longest posts I’ve ever written but I gotta tell you  - I LOVE it

The words just flowed today so go and grab a cup of coffee or glass of wine depending on what time it is and come and join me on this journey of discovery. I can wait

~*~

I woke up this morning and decided that today had to be all about me. I have been so snowed under with responsibilities and demands that it had really started to do my head in. I realised that I needed to take some time out and work through what has been going on in my head lately and I actually permitted myself to take this time without feeling selfish.

(And THAT in itself is a huge step of progress right there!)

Recently, there  have been a huge array of emotions that are seemingly unconnected to each other and I needed to stop and try to piece this jigsaw puzzle of confusion together once and for all.

I dropped Lucas at pre-school and jumped into my car and drove until I felt that I had reached the perfect spot. I landed in a small country town roughly and hours drive away. We are very fortunate to live where we do because it really doesn’t take too long before you’re in the countryside enjoying the fresh air and mingling with small town folk who always make you feel welcome.

So here I sit holed up in a gorgeous little cafe with a strong coffee, a HUGE piece of gluten-free cake and my iPad, notepad and pen. The warm winter sun is coming through the window onto my back and the fire crackling in the fireplace is completing the ambiance.

(OK….I lied about the fire but I really am in absolute heaven you could say!)

~*~

Things have been really rough lately in that I have honestly believed that I have been cruising along nicely but it turns out that this has all been surface emotions. I had been fooling myself again.

Because that awful little terror called grief really is a sneaky little bugger. He lies in wait for sometimes quite a sizable amount of time lulling you into a false sense of security and then one day, he creeps up on you and whacks you over the head when you least expect it.  It has been so forceful in its attack on me this time, that it has brought me to my knees dramatically screaming in agony and wondering how on earth I didn’t see it coming!

Grief is no respecter of times or places and is not subject to the unspoken rules of political correctness. It operates according to its own schedule.

Most of my grief stems from the loss of my Dad to cancer 3 years ago and I have been remembering a lot of wonderful things about him this week. Strangely enough – thinking about him usually has the reverse effect in that it brings me smiles and laughs and keeps my wonderful memories alive.

It doesn’t weigh me down because I’m choosing to remember the good times and not focus on the loss. It’s really cathartic for me.  But with those joyful thoughts – the sad thoughts also inevitably creep in and they are what drag me down and threaten to wipe me out.

My dad was a really gentle soul. He was a hugger, an encourager and a comforter. He was laid back without being lazy, peace-loving without being wimpy and authoritative without being demanding or unreasonable.

I miss his laugh, his silly jokes and his amazing wealth of knowledge. This man knew everything about everything. He was an asset to any trivia team and had a memory to rival any elephant!

He was particularly special in that he would often go out of his way to learn all about something that interested one of his friends so that he had something to talk with them about at his meeting.

When Mr Patient and I got married – he threw himself into learning all about Mr P’s interests and did the same thing with my sister and her hubby. He loved God passionately and because of his earthly example to me of what a father is – I have found it easy to trust in God as my heavenly father.

Dad always joked that he should write a book because “one day I won’t be around anymore and I want you kids to know where you came from and what I consider to be the important lessons in life.”

But as you all know – “one day” came a lot sooner than any of us could have anticipated.

Dad used to be the best storyteller I knew. His facial expressions and mannerisms helped illustrate the tale and brought a real authenticity to it. He often told us stories of his youth and can I just say – he was a ratbag at times!

Dad holding me when I was about 12 months old

He would tell us of all the pranks that they used to pull on the girls at school, the numerous times that he was given the cane for mischief and the times that they narrowly escaped the law!

He regularly reflected on his childhood and remembers that his mother often told the tale of her standing in the street talking to friends when Dad climbed down out of his pram and took the wheels off so he could figure out how it worked!

Oh how much my boys are like their Granddad!

Dad ended up working with his hands in his chosen vocation and was also the best handyman around. There was nothing my Dad wouldn’t have a go at and his can-do attitude was contagious.

Dad also wanted to write down all the stories of his childhood and youth so that my sister and I could have a record of where we came from and what life was like back in his day.

When Ella was in grade 2, she did a speech at school that was all about the differences between when her granddad’s generation went to school and now. Ella would ring him up to pick his brain and hung on his every word. Of course Dad got a real kick out of being asked to share his story and was as proud as punch that she wanted to know!

And Ella actually ended up winning that year’s speeches coming first out of her whole entire grade! It completely made his day,

Dad always told me that he wanted me to write, he was always encouraging me and loved the silly little poems that I would often churn out as a child. He told me that I had the gift of the gab like him (no doubting that!) and that I should share my life story with my kids.

So I guess this brings me to the point of this post.

This particular post has been written in honour of my Dad but also because I want to continue the legacy that he never got to see to completion. I want this blog to be that book for MY children that Dad never got to write.

I want MY kids to be able to read back on this in ten years time and see how much I love and adore them and to show them just how far they have come.

And if something were to happen to me and I was to join Dad in heaven prematurely – I want to leave this legacy for my children.
I have told my daughter and husband my blog log in and password and if that day should ever come…..I want them to continue writing this for their children and for their grandchildren and so on.

I want this blog to become a family tradition, a record of highs and lows and successes and failures. I want my descendants to know that they do matter and that their lives are full of purpose and that their dreams are achievable.

I want them to be the best that they can be and I want them to  know that above all else – they are loved.

And on that note – I think it’s time to go and get a coffee refill.

I’ll leave you with some photos that I took on my phone of the beautiful Australian countryside.
I truly found peace out there today , I hope you all enjoy your evenings or your days wherever you are in the world.

This pic should give my "real life" friends an idea of which direction I drove in today

Fi x

Wordless Wednesday 24/8/11. NOT a fan of shopping!

The face says it all!

The art of conversation.

Do any other parents of verbal ASD children sometimes feel like having a conversation with their child is akin to pulling teeth?

(Which is an interesting analogy being that Harley is 8 and still hasn’t lost a single tooth!)

Below is a video example of a typical two way conversation with Harley. In the video, I was trying to extract information from him but it took a lot of suggestive questions on my part.

I have found that the best way to get him to talk to me is by sitting beside him – not in front of him – because otherwise he gets too distracted. He is unable to look at me and listen at the same time – It’s one or the other! And I gave him this icy pole to chew on while we talked too because this also helps him to focus.

I have realised that it can take ages for me to find out anything and I always seem to be offering the ideas and words to him. He rarely offers up information unless prompted unless we are talking about one of his interests and then he becomes fluent and hyper verbal!

But back and forth banter when the topic of conversation is of no interest to him is a skill that we are still working very hard on.

You can see that he still has a long way to go but has come SO FAR in the last 12 months and  I’m super confident that this will eventually be something that he is able to do without much effort at all.

A visit to the Doc

Today was a particularly hard day with Harley. For the better part of the morning he was an emotional wreck. He was an explosion waiting to happen and I wasn’t about to be the one to light the fuse so I walked on egg shells for all of our sakes.

The only method that worked here at home with the boys was the ole divide and conquer. I sent each of them to their own rooms to play separately.

I really HAD to do this otherwise there would be no point in keeping Harley home for a circuit breaker day. I simply couldn’t afford to ruin it by allowing them to bicker and argue all day, it was the best option of all.

This afternoon though, I did have to take Lucas to the paediatrician for a basic follow-up appointment after his formal aspergers diagnosis back in March, so Harley had to join us for that. I went prepared with the boy’s DS’s the iPad and some pens and paper. They both behaved brilliantly in the waiting room and I was SO proud of my boys.

Not long after we arrived another mother walked in with two little boys of her own and sat down beside us to wait. She smiled at me but she looked absolutely exhausted. Her eyes were almost hanging out of her head and she looked like she had the weight of the entire world on her shoulders.

I recognised that pain. All too well.

Her youngest son (who was 4) asked her in fragmented speech if she would help him to do the puzzle that he was holding and she sighed in resignation and lowered herself to the floor to join her son.

But he jumped up and waved his arms about frantically shouting “No Mama, I seat on your knee I will, no you on the floor”.

She looked up at me and rolled her eyes saying “The things we do hey!” as she climbed back up onto the chair drawing her little boy onto her lap.

I nodded in agreement and smiled back at her.

The little boy (his name was Steven) glanced at me shyly, frowned and then buried his head into his Mum’s shoulder whimpering. “That scary lady look-ded at me”

The mother smiled at me apologetically and offered me an explanation to her son’s behaviour : “I’m so sorry about that – my son is still learning how to be around other people” she sighed sadly and took a deep breath….“He has autism”

“I know he does” I answered. “It’s ok….really”.

“You do…..I mean….How did you….what did…I mean, I KNEW you looked familiar, but….can you remind me how I know you though, I’m so sorry but my memory is letting me down lately”…..she trailed off sadly.

“No, we’ve never met” I giggled gently, “Well to my knowledge anyway, it’s just that…..I recognised the signs” I ventured hesitantly.

“Wow…..How?” she asked amazed.

At that point I gestured to Lucas and Harley who were sitting in the corner with their heads down focussing intently on their Ds games. Harley was also rocking back on forth on the spot and Lucas was humming to himself.

 “What do you see” I asked her….

She studied them for a bit and then she almost shouted:

“Oh my goodness! ….  Are your boys….. I mean, have they….Um, do they also have autism?” She asked shyly.

 “Yep, sure do” I answered. “Both of ‘em”.

 “Wow…..I would have never have picked that” she said and then stopped herself abruptly……“Oh my God, I just did that EXACT same thing that I HATE other people doing to me”

I laughed.

“I HATE it when people tell me that my son doesn’t LOOK autistic and now I’ve gone and done it myself!   It’s SUCH an insult when they say it to me….like I’m lying or something!”

I laughed again and assured her that it wasn’t a huge deal. And then a few minutes later it was our turn to go in. I said goodbye to her and waved at Steven who had now warmed up to me and walked into the Doctor’s office.

The appointment went brilliantly!

He did the usual weight, height, blood pressure checks and then we started to chat about Lucas’ therapies.

He asked me about his early intervention group and I told him that it’s working out wonderfully.

He asked how he was going at Pre-school with his aide…..and I answered: brilliant again.

Next the Dr wanted to know if we’d finalised a school for next year and I answered that yes, that was taken care of too.

He also wrote down the names and numbers of the best speech pathologists that he could think of and sympathized greatly with our dilemma after the last one fell through.

We were just about to pack up and leave when he started to tell me about a social therapy group run by a wonderful lady that he described as a miracle worker for children with an ASD.

Harley playing at the group that he attends on Thursdays

And yep….it’s the same awesome lady that I wrote about *HERE* and Harley has been attending for almost 2 years now.

The Dr looked at me intently and made a remark that has put him in my top 5 all-time favourite people in my children’s medical life….he said:

“Fiona, can I just commend you on how much you do for your children. It really is so wonderful to see a parent like you that has taken your son’s diagnoses and run with them and given it your all. I have no doubt in my mind that your boys will be functioning so well once they reach adulthood that they you will barely remember the harder years that you are in the midst of now. It is only up from here on.”

Well, you could hardly wipe that grin off of my face after that!

I can finally tell all those people in my life who criticise me and my efforts – that it doesn’t matter what they think because my children’s Dr thinks I’m awesome!

A no-brainer.

I’ve kept Harley home from school today.

He is reasonably well physically but he is far from well emotionally.

I wondered how he was going to go this morning because he came out of his bedroom several times between 8 and 11pm last night for no apparent reason.

Yes – he usually does this anyway but most of the time he will have some half-baked reason as to why he can’t sleep but last night – he was particularly upset and emotionally charged and couldn’t explain it to me at all.

It probably didn’t help that I kept growling at him and marching him back to his room with not an ounce of compassion in my voice. *sigh*  But hindsight sure is a wonderful thing isn’t it?

So, I suppose that I’m not really very surprised by the flood of emotions that are overwhelming him so far this morning.

He still hasn’t told me what’s going on in his head (he probably can’t find the words yet) but I suspect that it’s got a lot to do with his Daddy being away for longer than usual this time.

Mr Patient has travelled with his job ever since I met him 14 years ago and has therefore travelled since Harley was born but sometimes it affects my little tiger more than others.

I think it may be because this time, Daddy left on a Sunday which probably confused him because weekends are when EVERYONE is home….

So, here we are at the beginning of another “mental health day” or “circuit breaker day” as I like to call them.

But who exactly are these days for? For him or for me?

They are ‘supposed’ to be for Harley to regroup, refocus and chill out without the pressures of being thrust into an environment that takes everything out of him, but in reality – I’ve noticed that these circuit breaker days are also for me.

And the reason for this is simple. It’s because these ‘days off’ from sending my child into the daily battlefield are days where I can spend time mentally preparing him to return tomorrow therefore ensuring a better afternoon.

They are days where I can enjoy my child who is calm and at (his version of) peace.

Days where I don’t have to watch him struggle to conform to society’s spoken and unspoken rules.

And they are days where I can sit back and KNOW that he is going to have a good day because there really aren’t any unreasonable and unattainable expectations being forced upon him.

And this afternoon?….

Well, we have a paediatrician appointment for Lucas to attend and there was NO WAY that I would have expected Harley to manage a whole day of school and then sit for a couple of hours in a waiting room with lots of other noisy kids and funny smells and unfamiliar sounds.

No…..this is definitely the best solution for our family today.

Definitely, no doubt about it.

I am the mother…

On a good day

I wrote a poem for my post tonight but after publishing it I decided that I hated it so it got deleted. But this left me in the awkward position of having no post at all for tonight!

And I seem to have lost my writing Mojo .

Mr Patient left today for a week up North with work and it’s crazy around here right now. My head is full and my kids are nuts. Harley is going off his head about something to do with his dressing gown, Lucas is tearing madly up and down the hallway at top speeds and all I can say is: Thank God for companies that make gluten-free pizzas!  They literally saved my bacon tonight!

So instead of trying to write something mildly interesting and coherent when my head is clearly full of play-dough – I thought it would be better to recycle one of my most read posts from last year. For some reason it still gets several hits a week so it must be doing the rounds of cyber land??

Anyhoo….here goes: – It’s called….I AM THE MOTHER….

~~~~

I am the mother who sent her child to school sans his jacket on a cool spring morning and watched him shiver as he bravely walked in to school.

I am the mother who forgot to put her daughter’s school hat back in the car thus causing her to receive a uniform infringement.

(And the mother who can’t work out why a 10-year-old is not capable of doing this herself *ahem*)

I am the mother who fed her children cake for breakfast because she forgot to buy bread.

I am the mother of the 4-year-old boy who threw the tantrum of the century in the school car park this morning.

I am also the mother who glared at the other parents who were rubbernecking and tut-tutting at her child as she picked him up and threw him over her shoulder to keep him safe from the oncoming traffic…

and the mother who would do it again in a heartbeat.

I am the mother who survives on very little sleep and a lot of caffeine.

I am the mother who tries to do too much sometimes.

I am also the mother who sees what everyone else does for their children and fights the feelings of inadequacy that wash over her in tidal waves.

Alas, I am the mother who answered the phone this morning only to discover that it was the school administrator informing her that her son’s class were having a make-your-own-pizza-day, and that the pizza bases that were supplied to the rest of the class, actually contain gluten and asked where was the gluten-free one that she was supposed to be supplying.

I am the mother who told said administrator that she knew nothing of this pizza day as her son was absent last week on the day the notes must have been handed out.

I am the mother who met her son at the gate this afternoon with some Ben 10 tattoo stickers as a “please-forgive-me-for-making-you-miss-out-on-pizza” token gift.

I am the mother who often pulls her hair out in sheer frustration because she is unable to remember a lot of important things that need to be done, due to the stress levels that are constantly rising at this time of the year.

I am the mother who finds more grey hairs every time she looks in the mirror.

I am the mother who keeps chewing gum in her glove box at all times so that she can hand them to kids who “forgot” to clean their teeth on the way to school.

I am the mother who rarely sorts her washing  *Gasp*

However:

I am also the mother who would move heaven and earth just to make her children smile.

I am the mother who often spends her own birthday money on her children because she wants to bless them as they bless her by just being themselves.

I am the mother who cannot for the life of her understand what makes her children tick but would give anything to be granted a free pass into their thought processes so she could make sure that their every need is met 100%

I am the mother who wants to learn to appreciate the little things.

I am the mother who wants to learn NOT to stress on other little things!

I am the mother who would take a bullet for her children.

Yes this mother is fiercely loyal.

I am the mother who often lays awake at night thinking of fun things that she can do with her children on the weekend and willing the hours to tick by so that the weekend can start.

I am the mother who wants to join her kids by dancing in the puddles in the rain and skip through supermarket aisles singing but is too afraid of what other people might think.

I am the mother who desperately craves understanding and tolerance for her children.

I am the mother who worries that she is not doing enough for her children, but also the mother who realises that she only has 2 hands and 24 hours in a day.

I am the mother who is learning to love herself just the way God loves her and the one who believes that life is good.

Yes. I am THAT mother

What kind of mother are you?

Cockroaches and Butterflies.

This is a canvas that my very talented sister painted for Ella's room. It's hanging proudly above her bed

Four years ago, our daughter Ella had a wonderful teacher when she was in grade 2. Ella clicked with her and learned some really valuable life lessons that she still carries with her. Every day this teacher would encourage the children to engage one another with an exercise called “Butterflies and Cockroaches”.

The idea behind it was that every member of the class would go around in a circle and ask one another to talk about their butterfly (good thing that happened that day) and their cockroach (yucky thing that happened).

The rule was that they were to tell their cockroach first so that they could finish on a positive note.

When Ella came home and told us about this – we decided that we liked it so much that we started to use the idea at our family meal table every evening. It was a great way for us to have quality conversation together and to involve the kids in a socialising activity without them realising that they were actually learning. It also had the added bonus of taking their minds off their food and onto the game so they would eat without complaint!

It was funny at first because Lucas didn’t understand the concept and would just rattle off any thing that came into his head and they were rarely “good things” or “bad things” they were statements like : “Elmo has a fish called Dorothy” or “Bust my boilers” (thanks Thomas and friends!)

We would all giggle and try to explain the rules to him again but he just couldn’t grasp it.

There were nights where Harley would say that he had no butterflies because his life completely sucked but that he had 100′s of cockroaches – so we had to put a limit on them because he was turning it into a whinge and whine session!  But because we were allowing the kids to talk about their “cockroaches”, we weren’t teaching them that they have to bottle up all their sadness and struggles and that’s it’s ok to talk about them – we just had to reiterate that it’s not good to zoom in on them and let them cloud everything else.  They soon learned  that it’s far more beneficial to focus on the positive in the long run.

The kids also gradually learned about turn taking, about enquiring after another person’s day and about listening to other people talking even if it was boring to them. They learned patience, self-control and empathy.

It taught me (the eternal pessimist) to take my eyes off my complaints and to focus on the good things in my life and to learn to be grateful for what I DO have instead of focussing on what I don’t. I personally got a lot out of this simple exercise and can’t really remember when we stopped doing this or even why we did?

But guess what?…. We started it again last night and the table was filled with laughter, with joy, with love and with understanding.  Harley was able to articulate what it was that had been upsetting him all afternoon and had caused him to have a meltdown after school.

Lucas blew us away when he correctly identified his butterfly and cockroach and made us giggle when he announced dramatically that my cooking was his cockroach that night! But I have been simply amazed at the peace that this brought to our family last night. The love, understanding and family unity was fantastic. And just from something as small as taking the time to be with and cherish each other.

I have spent today trying to come up with the best answer for the butterfly question that I can. I want it to be a good one.

So….What is your butterfly and cockroach today?

Why traffic lights SUCK!

Lucas has a new ‘thing’. He likes to sing in the car.

But it’s not just any old singing. Oh no…..because that wouldn’t bother me so much.

Regular singing would be cute and bearable and maybe even catchy, but his is the repetitive nonsense type of singing that makes you want to poke yourself in the eye.

Until it bleeds.

Because that would be less painful.

UGH!

And it’s not that he is terribly off-key, in fact – he seems to be the only child of mine that picked up any of my musical abilities but it’s more the type of songs that he chooses to sing that do my head in.

For example: Does anyone remember the Traffic light song by the Monty Python guys?

Well for the uninitiated: here is the worst song you could possibly imagine.

Now try to imagine it being sung to you over and over and over again…..

Do you feel sorry for me yet?

Oh….and a huge thankyou to my lovely husband for showing it to the boys in the first place

Awesome.

Totally Awesome.

Lucas regularly sings this insidious song in the car, but that wasn’t what he chose to sing this morning.

No, this morning’s song was a made up song that stemmed from an episode that we had a few weeks ago where he completely pushed my buttons and got the desired reaction from me and therefore obviously never forgot about it.

It also happened in the car on the way to school one morning.

Harley had whispered to Lucas that it would be funny if he told me that he’d peed his pants. Which was just lovely as you could imagine.

So…. he did and he acted the part so well that I totally took the bait and completely freaked out. I pulled over to the side of the road and got out of the car whilst going off my head ranting at him: “Why didn’t you tell me you needed to go?”.

I opened his car door and reached in and put my hand on his legs to check the relative humidity and at that exact moment they both started giggling hysterically saying: “We tricked you Mummy! We were just joking!”

I failed to see the humourous side and they knew it but they couldn’t stop laughing for the rest of the way nonetheless.

~~~

So anyway….back to the song.

After I’d dropped the older kids at school this morning, I started to drive Lucas to pre-school. I turned onto the freeway and a little voice from the backseat piped up singing a song to the tune of “The Farmer In The Dell”.

Here’s the tune:

~~~~~

Lucas’ version went like this:

“I think I peed my pants,

I think I peed my pants,

Uh-Oh Mu-u-mmy,

I think I peed my pants”.

Ok….So I laughed at his cleverness the first time and maybe even smiled the second but by the 93^rd time in 15 minutes ….I was ready to commando roll outta that car going at high speeds and make a run for it!

And I’m more than a little suspicious that he had some help coming up with the lyrics for this….Hmmmmmm?

So…what do your kids like to sing in the car and does it drive you completely batty too?

~~~~~

Wordless Wednesday – Jealousy

Tossing out the pebbles.

Decisions are like skimming rocks upon a glistening lake,

Some glide while others plummet and then sink,

I make my plans and polish the stones to see if I can make,

My choices win and not end up in the drink.

~

I’m asking lots of questions but the answer does not come,

Solutions wave and mock me from afar,

I feel my strength unraveling; I’m slowly being undone,

I wonder if it has to be this hard?

~

The answers are in reach although I don’t know where to start,

I question if I really know my stuff?

My priorities are ordered and I know them all by heart,

But I doubt that they will ever be enough.

~

If I could figure out just what my next few moves should be,

And make my brain relax and take a break,

I know then that I’d understand and be able to see,

In front of me and just what is at stake.

~

I need to learn to lay things down and not let them control,

My every waking thought until I crack,

But I’m the kind that feels all things with heart as well as soul,

And know that there’s no room for turning back.

~

I know that once I stop and rest: The answer will hunt ME down,

But that requires me to let things be,

And that’s much easier said than done – I feel like I could drown,

But I have to or I’ll never again be free.

Exploring emotions.

  Meal times have always been a downer here. Rarely have I cooked a meal that all of them have been willing to eat. Tears are a regular occurrence and more often than not I leave the table defeated and somewhat angrier than I was when I sat down.

It’s true that I’m no Master chef but I can do a little better than canned food and toast, but because we have so many conflicting sensory and taste issues here – it’s almost impossible to keep everyone happy all of the time.

Tonight I served up dinner and Lucas and Ella sat down happily, said grace and started eating.

And of course : Harley threw a fit.

Nothing new there, we get this about 4 nights a week. So I casually bent down and picked up the fork that he had sent flying in rage and left him to it.

The other 2 kids are so used to this kind of behaviour that they hardly blinked. They simply went on eating oblivious to the jumping, flailing, screaming and whining.

After a few minutes with no response from any of us – he calmed down a little bit and edged closer to the table to see if he could elicit some sort of reaction from me so I grabbed the tomato sauce bottle and made a smiley face on his plate with it.

I thought this might make him laugh (or even smile at the very least!)

But no. He wasn’t budging.

I went back to eating my dinner and watched out of the corner of my eye as Harley walked around to the other side of the table and grabbed the BBQ sauce bottle and headed back to his seat.

I assumed that his little display of displeasure was over and he’d realised that he wasn’t going to win and I expected him to sit down and start eating therefore silently admitting defeat.

But I was wrong again.

He used his fork to smear out the happy face I’d made and used the BBQ sauce to make a sad face instead next to it and then pushed his plate away and marched off to his bedroom in a flood of tears.

What followed during the next ten minutes conjured up a lot of very mixed emotions in me…I was annoyed, frustrated, proud, relieved, joyful and sad.

All at once.

Harley had taken a pen and a pad of paper into his room with him and had drawn a picture of himself on about 8 different pieces of paper, each with a speech bubble coming out of his mouth. He had then written in each bubble a word and distributed these drawing throughout the house.

He left one on my pillow, one on the table beside me, one on the kitchen bench ….(you get the picture).

I studied them intently trying REALLY hard to decipher his writing but I failed miserably. As hard as I tried, I could not understand his writing and this just seemed to exacerbate his anger so he went and hid underneath the fuse ball table in the back room for half an hour silently rocking back and forth with tears streaming down his little face.

After we’d finished eating, I went and sat down beside him with all the notes and asked him if he could read them to me.

He’d calmed down enough at this point to talk to me and he did.

The bubbles said: “I’m angry”, “I’m sad”, “I’m hungry”, “I’m scared” and “I’m tired”...

Well I just about suffocated him with the huge hug that I wrapped him in because I was SO proud of this amazing progress!

My boy was not only able to recognise and own but CONVEY his feelings and emotions to me in a calm manner!  How cool is THAT?!

Suddenly the frustration that I had at not being able to understand my child was overwritten by a warm fuzzy emotional tidal wave!

It seems that my attempt at making him smile with the sauce actually prompted him to express what was going on inside him. It was the trigger that he needed to tap into his emotional state and he then found a way to communicate with me even amidst his stress.

The sad face that he drew back started a domino effect of emotions that just spilled out of him and I think this is absolutely wonderful!

I have given him some emotions visual cards that I have had printed up for a while now and he is very excited about that. Onwards and upwards I tells ya!

5 Things they rarely tell you about weight loss.

Last Christmas, a friend posted some photos on Facebook that were taken at a Christmas party that we both attended and tagged me in them and I was absolutely mortified to say the least.

They were actually really great pics but they alerted me to an ugly truth that I had been avoiding for quite some time.

I was overweight.

The picture that started it all....

Of course I already knew that, but until I saw these photos – I didn’t realise just how bad I had let it get. I thought I had maybe gained 2 or 3 kilos but in reality it turned out to be a whopping 15 kilos.

Ugh…

I cried and cried for about an hour that day and decided that it had reached a point where I could either a) keep getting heavier and heavier and more and more depressed or I could b) do something about it.

I chose the latter and set my mind on achieving my goal.

After my Dad passed away a few years ago – I plunged into a deep depression and self medicated with food.

I spent years telling myself that I was too busy and tired and that I couldn’t afford to do anything about it. I also told myself that because I am raising autistic children that they are the most important thing in my life and that looking after myself wasn’t a priority.  I was meticulous with their diets but paid no attention to my own.

But after I saw those photos, I was confronted with reality and it finally dawned on me that if I didn’t take care of myself (the carer) – then eventually I would end up in no condition to care for my children.

I was chock-full of excuses because deep down I knew that the truth was: I really couldn’t be bothered.

But that was then and this time I was determined.

So did I do it?

Did  I lose the weight?

I sure did! And as of today – I am 17 kilos lighter and back below my ideal weight. In fact – I’m actually wearing a smaller dress size than I was BEFORE I had children!

I know it's very posey but it's the best that we could get!

And I learned some really interesting things about myself during the past 8 months and was surprised that no-one ever really talks about these things.

I compiled them into this post and thought I’d share my personal lightbulb moments with you.

~~~~~~~~ 

1. Losing weight won’t change who you are.

Put simply – if you don’t love yourself before you lose weight – that won’t magically change after.

I always thought that once I reached my ideal weight that I’d instantly be happy and things would just fall into place. I thought that the little things about me that I despised wouldn’t bother me once I lost the weight.

Not so. In fact, things that aren’t dealt with and were possible triggers for the initial weight gain actually get magnified after you lose the weight because you are forced to admit that they still exist despite your reflection changing.

For me – a lot of my gain was due to emotional overeating and not coping or dealing with my stress.

Losing weight didn’t magically make my struggles disappear – I still have to live with autism every.single.day and I still have days where I want to throw myself in front of a bus, but I have learned new ways to deal with them instead of eating. I now view my hurdles in a different light because I feel better about myself and am now able to do that.

And while I’m on this subject – what’s with those people in your life that suddenly start acknowledging you once you’re thinner. Like you were invisible before hand?  I don’t get that. I didn’t change but somehow became more socially acceptable?

Okaaaaayy!???

~

2. The only person you should lose weight for is yourself.

That’s right. Just for yourself. Not for anyone else.

One of my biggest hurdles was that my husband always told me that he loved me regardless of what I weighed. And because of this – I wasn’t motivated to do anything about it.

See....he loved me even when I was overweight.

I had to make the choice to do it because I wanted to feel better about myself.

And to be frank – any boyfriend/partner/husband that truly loves you won’t threaten to leave you if you don’t lose weight.  And they won’t deliberately eat banned foods in front of you or taunt you if you slip up. If you are losing weight just to keep them happy – you are doing it for the wrong reasons and once you lose it, they will find something else to pick on.

A supportive partner will encourage you, praise your successes and comfort you when you fail.

 And I am speaking from experience here. I had a boyfriend for 2 years who frequently told me I was an elephant. He always pointed out girls on the street who were smaller than me and told me that I needed to look like them in order to be appear more attractive to him.  He snorted like a pig every time I would put anything that wasn’t a vegetable or salad item into my mouth and made the beep beep noise of a reversing truck every time that I stepped backwards.

And the interesting thing…..I was smaller than my husband has ever seen me at the time that he was taunting me. Smaller than I am now….Pffftt.

No wonder I had “issues” with my weight for years.

~

3. Chocolate is NOT the enemy.

 Yep – you read that correctly, chocolate is NOT the enemy. In fact – no single food is. It is eating an excess of any food that does you in.

I still eat chocolate pretty much every day.

Yes…..every day. But I don’t eat any more than about 15-20g and I savour it.

I noticed that whenever I would deny myself of something  – it would only make me crave it MORE and I would either give into the craving and over indulge and then beat myself up about it, or get filled with resentment at everything that I was missing out on.

Not only have I had to learn about portion control but I’ve had to alter my buying habits to make this possible.   I STILL can’t buy a whole block of chocolate and tell myself that I’m only allowed 2 or 3 squares a night. Because once that block is open – I will more than likely tell myself that it’s ok to have just one more piece. And another. And another.

And we all know where that leads.

Guilt….then more emotional/guilt eating…..more weight gain….then more depression. It’s a vicious cycle.

And I can’t buy those family share packs with 12 individually wrapped bars in them either because I am unable to stop at one.

I buy very small chocolate bars and I buy them one at a time.

The smallest bar size possible and I enjoy every.single.bite.

~

4. Not everybody in your life will support you.

This was a tough one for me to learn.

It had honestly never occurred to me that some friends are threatened when you start to shed kilos. Maybe they’re jealous or maybe it’s more than that.

Maybe it’s because you’re no longer the “fat friend” that they could rely on to make them feel better about themselves?  I was often the one that people would deliberately stand next to in photographs because they ALWAYS looked better compared to me and they were the friends who were never 100% honest with me in the first place.

They were the friends who often told me that I looked “fine” and that they didn’t think I needed to lose any weight to my face but would then talk about me behind my back when they didn’t realise I could hear them.

And then they are the exact same friends that try to sabotage you when you start your weight loss journey by showing up on your doorstep with cakes, and other yummy things that they know you struggle to say no to.

And also the friends that not even once congratulate you when you do eventually drop the extra weight.

Nobody needs friends like this in their lives.

They are toxic.

~

5. There is no perfect weight or dress size.

It is different for everyone. I have finally realised that I could starve myself and spend every waking moment at the gym and still probably never be an Australian size 6 – 8.

And now I’m ok with that.

It’s not in my genes for a start, I’m not built that way and I have a frame and height that could never support that.

And if I ever did get down to an 6 – 8, I wouldn’t be able to maintain it without ending up resenting everyone and everything because the sacrifices I’d have to make to stay there would be mammoth.

And the old adage that we can’t all be supermodels is so true.  If I had a personal chef, a personal trainer, a full-time nanny and a dietician on staff I’m sure that I could get there but that’s simply not (or will ever be) my reality so I can give myself a break!

So…what are some of the weight loss myths or stories that you have to tell me about?
I can’t wait to hear them  :)

The helpful husband

He walked in the front door shortly after 5pm and I was surprised to say the least. I double checked the time on both the wall clock and my watch to make sure that my eyes weren’t playing tricks on me.  But no, it was definitely happening. My knight in shining armour (ok…a middle aged dude in a shirt and tie) had come home early to help out with the afternoon and early evening routine.

“What do you need me to do first” Mr Patient asked me cautiously.

“You could start by running the boys a bath” I ventured.

“Alrighty then fair maiden” he answered in that adorable but frustrating echolalic way that he does as he headed for the bathroom scooping up one of the giggling boys on his way.

It didn’t take long.

Actually, it was probably only about three minutes before I was summoned. Coming down the hallway in a pitiful tone was a faint but distinct…...”Fiiiiiiiiiiii”

I rolled my eyes and put down the onion I was chopping for dinner and made my way to the scene of the chaos.

“Where is the bubble bath”? He asks innocently.

I reached up on the shelf only centimetres above him and handed it to him and walked back to the kitchen.

Seconds later I heard it again.

“Fiiiiiiiii”

I ignored it this time hoping he would give up.

“Fiiiiiiiii” he calls out much louder.

“What?” I scream back “I’m busy”

“Where is the plug?” he calls out sheepishly.

“In the top drawer – I saw Lucas playing with it earlier so I hid it from him so he didn’t fill the tub up when I wasn’t looking”. I yelled back impatiently and went back to chopping.

I swear it was only a minute later when he bellows out again….”Fiiiiiii” but this time in a much more desperate petition.” I neeeeeeed you”.

I throw the remains of the half chopped zucchini into the pot on the stove and glance at the clock. Only 7 minutes has passed and I have been called on 3 times. The boys are still running half naked around the house and the tension and noise levels are rising rapidly.

“Yes P” I snap angrily with my hands on my hips “What now?”

“Would you please help me catch Lucas so I can bath him. Quick, there he goes…..corner him”.

I grab the offending child, strip the remainder of his clothes off him in one swift motion ignoring the protests and ducking the kicking and hurl him into the water.

“Wow”, he says obviously impressed “How about you bath the boys and I’ll go cook dinner”.

“Fine”  I lift Lucas out and dry him off then send him out to the heater with his pyjamas, singlet and underpants that I’d already laid out for him earlier and clear and precise instructions on how to dress himself.

I grab Harley in much the same fashion and bath and dry him and send him out to his brother so  he can finish getting ready for bed too.

I let the water out of the bathtub and walked back to the kitchen to see how dinner is coming along and I find Mr Patient sitting at the computer, vegetables still on the chopping board where I left them and two completely naked boys playing lets-see-who-can-flick-each-other-the-hardest-with-our-wet-towels giggling hysterically.

“Thanks for coming home early and helping out with the evening madness honey” I call out sarcastically.

“Oh no problem, glad I could help” he answers oblivious to my ire!

“Oh, by the way” I add venomously….“If you ask me why the kids haven’t yet downe any homework – I’ll bloody flatten you!”

“Wouldn’t dream of it love….wouldn’t dare”  he says with a kiss on the cheek.

I shook my head and went back to the veggie chopping and with every slice, dice and chop that those poor vegetables endured I felt my frustration start to evaporate.

So what does fair mean?

  I posted about this particular topic over 12 months ago but this particular issue has raised it’s ugly head again recently so I wanted to revisit this subject because my feelings on it have not changed since and I am still very passionate about getting this message out there.

The majority of my blog posts stem from conversations I’ve had with friends and/or family and occasionally things I read, watch or hear through the media or Internet. But mostly, the topics for my posts come from personal situations that either one of my children or I have been involved in directly.

I know that I tend to over think things and sometimes I come up with the wrong answer but I rarely take things at face value anymore. I am just like any other mother who wants what’s best for her child but in my kid’s cases – I often have to fight harder due to the invisible nature of their disabilities. (Yes…I hate that word too but don’t attack me for it).

Recently, I was chatting with a good friend of mine who doesn’t have any special needs children at all. Her middle son is doing wonderfully at school but she told me that there are some ASD and ADHD children in her son’s class and how disruptive they were to her son. She then commented on how unfair it was on the rest of the class to have to wait for the teacher to deal with them all the time.

I saw her point and because she is a great friend and always will be, I know her heart and it is not one to cause offense or be judgmental so I made the decision to not call her on it and I let the comment slide.

I also know that unless you have a child with a special need it’s often difficult to understand that a simple task like sitting still for ten minutes can take ALL of their days worth of concentration and energy leaving nothing for the next 5 hours or so. These kids often just appear to the untrained eye to be a disruptive, inattentive child with behaviour issues. It’s difficult to understand that there is a helluva lot more going on than meets the eye and I get that because I’ve been there with Ella. I’ve been judgmental myself ….once upon a time!

I was thinking about my friend’s harmless comment again today in a new light and I remembered the earlier post I wrote that was about something that I heard once at an autism workshop that I attended. The subject we were discussing was behaviour at school particularly in relation to children on the spectrum in a mainstream setting.

The lady that was leading the seminar gave a great example to answer this question.

She said:

“Imagine, I am an ER doctor who is fully qualified in CPR and the person next to you has a heart attack. And even though I could (and probably should) step in and start CPR and mouth to mouth, I choose not to because it’s not fair to everyone else here that didn’t have a heart attack”.

She then went on to explain that by not giving our kids the help they needed because the other kids are being left out is no different to the ER doctor not wanting to “play favourites”.

I know how ridiculous it sounds when you put it like that but it sure makes a great point! My friend D told me that her son had a pre-school teacher that would tell the other children who complained about his perceived special treatment that fair is not everybody getting the same but everybody getting what they need.

How great was that teacher!

But don’t misunderstand me here. I totally understand where parents of well behaved, highly achieving, typically developing children are coming from when they complain about how their kids seem to be missing out because our kids require so much of the teacher’s attention and time. I get that. Really I do.

I help in my son’s classroom and I SEE that he is a handful. But I refuse to apologise for him because he is just being who he was created to be. There is a huge difference between ‘naughty’ and ‘overloaded’.

And because I am a parent of 2 children with ASD, I also know that it’s not our kids’ faults that they were born autistic (or with a special need of some type) just as the person having the heart attack in the above mentioned story didn’t choose it either. So why should they be penalised for something that is out of their control?

Exactly. They shouldn’t.

As a dedicated warrior mother to two fabulous spectrummy kids – I push not for better or preferential treatment but only what they deserve.

Don’t all kids deserve the very best?

Just a little food for thought……

Sleep is an enigma here.

 

If only he stayed like this all night *sigh*

Everybody knows that when you have a newborn baby in the house that you’re probably going to have minimal sleep for at least 6 weeks. Actually – scrap that….Most people I know would extend that to maybe 12 months or at least until the worst of the teething months are over.

But what about families like ours where 8 years later there are still no signs of your child ever sleeping through?

~~~

Yep, that’s right, we are still waiting for that to happen with our “newborn” eight-year-old.

Of course there have been days and even weeks where Harley has shown us that it is possible, but sadly, we keep reverting back to nights like last night.  He currently takes mood stabilising and anti-anxiety meds and has done for almost 2 years now and it works really well to help him fall asleep.

But that’s not the problem. Falling asleep and staying asleep are two entirely different things.

I could probably count the number of times on one hand that he has actually gone more than a week without waking us up in the early hours of the morning.  Usually between 2 and 5am he is up at least 10 times. And when he’s awake, he makes sure that EVERYBODY else in the house is also awake.  Harley’s room is at the opposite end of the house to ours and his brother and sister’s rooms are in the middle. Sometimes he will lay in bed crying or calling out (which wakes them up) but most times he walks quietly up to our room and stands beside our bed and calls out “Mum….Dad”..until one of us throws back the covers and marches him back to bed kicking and protesting wildly and loudly so they are woken up ANYWAY!

Rinse and repeat several times per night until you reach our point of utter exhaustion.

How very considerate of him….

Today I had downed 4 coffees, a Berocca multi-vitamin drink and a diet coke by 10 am just so that I could function well enough to survive Lucas’ early Intervention Group. And that’s not only incredibly unhealthy but pretty ridiculous and desperate measures to be taking.

This morning when I walked out to the kitchen to prepare breakfast – I was presented with 3 tired, irritable and sleep deprived kids and a husband who looked like death warmed up who had opted to go into the office later than usual just to catch another hour or so of much-needed sleep.

I have been to the paediatrician about this a few times now and each time he keeps handing me a prescription for Melatonin.

So why haven’t I filled it already?

Well – because it’s expensive for one and secondly because with Melatonin you can’t give it every single night because if you don’t alternate it and have days where you DON’T give it, the child builds up a resistance and it stops working.

It’s those in between days that scare me.

What are we going to do on those days?

At least now he is falling asleep. I shudder to think what he will be like on the days after a melatonin-free night.

I have thrown the question out there on Wonderfully Wired’s Facebook Page and many parents have written their personal experiences to me and I must say that it’s been very encouraging to read.

It help to know that there are several other families out there that have a child like ours and reaffirms that it’s nothing we have or haven’t done to make him like this.

It’s got nothing to do with us not establishing solid sleep routines when he was a baby (Thanks for nothing anonymous mothering helplines).  And it is not because we aren’t strict enough with him. (Thank you too well-intentioned mothers at playgroups).

And I know this because EVERY night at 5:30pm he eats his dinner.

At 6pm he has a bath or shower,

At 7pm he has his tablet and cleans his teeth and is in bed by 7:30pm for a story without fail. And it’s always been this way for as long as I can remember.

Is it just me …or does that look like a pretty solid routine?

And 99 nights out of 100 I stick to it.

From speaking with other mothers of ASD kiddos, most spectrum children have sleeping issues of one type or another. And I have only ever read and heard positives relating to Melatonin.

So tomorrow I am pulling out that dusty script and I am marching down to our local compounding chemist and purchasing what seems to be our very last glimmer of hope.

Fingers Crossed…..