Onwards And Upwards My Friends…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And its only onwards and upwards from here…

I have love.

I’ve was sitting down at this computer for several hours this morning writing out whatever came into my head. I was trying to process some big stuff that’s going on here and writing it out usually helps me to make sense of it all. Heck – I stayed up most of the night trying to write it out and got nowhere.

And it didn’t work today either.  At all.

Words were looping in my brain and the solutions all seemed so far off. So I turned on some music, closed my eyes and tried to slow my brain down by forcing my thoughts to go elsewhere.

 I do wonder at times like this just how much aspie there is in me. Maybe I’m not as neuro-typical as I first thought? Or maybe this is a normal reaction to too much stress and confusion.  I just don’t know and don’t particularly care right now.

I turned off the computer and moved over to the lounge room to lay down on the sofa. I could hear the children playing in the background – the sound of the Ninjago app I recently downloaded was coming from the iPad.

My daughter was watching one of her teen shows on TV and the little one was rolling around on the rug piling cushions on top of himself because he was seeking sensory input. I looked at each of them and smiled. They really are everything to me. So different to one another – so unique in their own special ways.

Ella walked over to me and handed me a coffee. It was strong and black – just the way I like it and sat down beside me putting her tiny waif arm around me pulling me close and kissing the top of my head. The daughter was comforting the mother – so wrong yet so RIGHT. And this action in itself is HUGE because she is not a touchy-feely person at all. But my girl sensed that I needed to be held.

In that moment I thanked God for allowing me the privilege of raising her.  I love her so much and can’t believe that I have been trusted with so much.

I looked over at my big boy and noticed him reading his new Ninjago book intently.  He was engrossed and sitting on his haunches just like my Dad used to do. A tear came to my eye and I wiped it away quickly. I couldn’t afford to lose it, there was too much to be done.

My little one had progressed to doing laps of the living area. He had set up an obstacle course with toys, bean bags and cushions and was jumping, skipping and hollering with delight. My problems suddenly seemed so insignificant.

I closed my eyes and lay my head back down and drifted off to sleep because I had been awake for most of the night. When I awoke later I heard giggling in the kitchen and I crept out to see the three of them working as a team. They were making me the most disgustingly wonderful sandwich I have ever seen. And instantly nothing else mattered.

I realised right then that I have everything because I have love.

It may not always come from where I most desire it, and it is sometimes disjointed and awkward and usually messy, but I have love.

Thank God for love. Thank God He loves me more than any other human being could possibly love me.

Thank God that He sees me and not the mess I have made of my life, and He loves me still.

Have a great weekend all.

x

Yes – it’s an old pic but the only one I could find with all 3 kids in it

Thankful

I can clearly remember the first time that it really hit me that I am a parent.  And I’m not talking about the moment I saw two red lines on the home pregnancy test, or the moment when the Dr confirmed my pregnancy or even the first time that I looked into my new daughter’s eyes 3 hours after the most pain I’ve experienced to date.

I’m talking about the moment when the reality hit me that I was no longer “Daddy’s Little Girl” or “Mummy’s Princess” but a grown up who now had to be the one who would be looked up to instead of the one doing the looking up.

And I’ve gotta tell you, it scared the absolute crap out of me.

As a child I remember running into my parent’s bed in the middle of thunderstorms and being comforted just by sensing them near me. And I recall many times when I got lost at the shops momentarily until my parents sought me out. I even remember my Dad sitting on the edge of my bed and praying that fear would leave me as I shook because I was so frightened of the dark. He turned the toilet light on that night and it stayed on for many years afterwards.

But when that day comes that you realise that YOU are now the go-to person when a child is seeking comfort, it can be both touching and overwhelming at the same time. My kids look to me with admiration and total trust and rely on me to be their safe place, I am the one that they run to when the sky is lit up with lightening and the house feels like it’s shaking from the thunder. My bed is where they end up snuggling into me, and I am the one who goes into bat for them every time that a situation starts to escalate and become beyond their control.

It’s a lot of pressure and at times can be frustrating, tiring and really damn annoying. But I have come to realise that I am extremely and totally blessed beyond belief.

I get to be a safe place. 

And that’s a blessing that a lot of people will never know. So I’m definitely not complaining.

~~

I have gone back and forth over whether or not to add my 2 cents worth to the shooting tragedy in Newtown Connecticut a couple of days ago and almost decided not to write anything in case it appeared that I am trying to score hits on my blog by doing so. And I don’t want to use something so horrific to attract traffic here; which is why I am not going to add any tags containing those words.

What I am about to write is for you guys; the faithful readers who already know me and know that it’s not my heart to benefit from things like this.

~~

Two of my children are in the age group of the children who were massacred so it was really close to home for me. I have done a lot of thinking since the shootings occurred and my heart is aching for those families who have just experienced more tragedy than any other human being should have to bear: The loss of a child.

They will never get to be their child’s safe place ever again. They won’t feel the warmth of a small child snuggling into them seeking protection and they would give ANYTHING to be able to hold their baby in their arms one more time. And there are many other families who are also affected because their child was one of the “lucky” ones who got away. These babies have been exposed to things that no human being should ever have to witness in their lifetime.

I have written a lot about how hard I find parenting on this blog. I have written about the good times, the shocking times and almost everything in between. But from now on – even when I’m in the heart of one of the worst moments imaginable – I vow to remain acutely aware that I am blessed just because I get to be called “Mum”.

I’m not weighing in on arguments about gun laws, mental health issues or the concept of taking God out of schools in America (as has been in the media constantly over the past few days). There are many other bloggers far more qualified than me who are already writing about the bigger issues.

But as a Mummy blogger I am going to say that I am going to remember that no matter how frightening and overwhelming this whole “being a parent” thing can get – I will make the choice to be thankful.

• Thankful that I can hold my babies close.
• Thankful that I can be a safe place even at 3 o’clock in the morning,
• Thankful for life.

For me – I’ve come to realise how sad it is that it has taken something so tragic for me to recognise how blessed I am.

I will continue to pray for the families who have lost everything.

I really  wish that I could do more.

Sneakiness has its merits…

My friends are sneaky.

Not all of them, but some of them.

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

You know……

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

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

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

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

She’s clever isn’t she?!

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

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

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

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

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

Giggle ….giggle….I like feisty Fiona …

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

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

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

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

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

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

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

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

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

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

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

It is well with my soul.

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

Wordless Wednesday 7 November 2012

Do you know how much self control he exercised here?

The Shell.

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

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

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

Fast forward to yesterday….

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

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

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

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

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

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

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

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

What a wake up call!

I want it back.

I love this photograph. It is framed and displayed in a special place in our home.

It was taken back in April 1998 at my parent’s house. We had just announced our engagement and we had the whole world at our feet.

The photo makes me smile because it shows Paul’s discomfort in having his photograph taken and his stiffness and forced smile for the camera.  Right after this was taken he picked me up and swung me around but this is a side of him that he rarely shows to the world lest they judge his childlike character. But that’s what I fell in love with

In this photo I am clearly besotted and blissfully happy. The photo represents so many different things to me: It represents true young love with no strings attached. It represents the beginning of a brand new chapter and it represents ignorant bliss.

I remember going to pre-marital counseling with the Pastor before we walked down the aisle and being asked the ‘hard’ questions.

 

• Like: What would happen if one of us were injured therefore requiring the other to become a full-time carer?

 

• How would we handle it if it turned out that we were unable to have children?

 

• Would our marriage survive having a disabled child or would we allow it to take a toll on our union?

It’s almost funny to remember those questions now because they were almost prophetic. Paul did have to become my carer for a while after the brain surgery and as you all know, although I refuse to see my children as ‘disabled’ we definitely fit neatly into the category of  ‘parents with special needs children’.

And here’s where the blog post takes a slight turn away from the direction you’re probably all expecting it to…. Because whilst our marriage isn’t exactly on the rocks: having children with higher than average needs has certainly taken its toll on our union.

We are ok but neither of us is bursting with enthusiasm or over-the-top mushy love right now. We are just ok. I often think back to those early days sitting on the Pastor’s couch listening to him talk about those possible scenarios and I remember thinking ‘that will never be us. We will always be this strong.’

But despite this feeling I had of being bulletproof, (and if I were being completely truthful with myself) : if someone had have told us back then that we would have two children on the autistic spectrum, it probably would have shattered me.

And please don’t get me wrong here:  I’m not saying that if I had the choice that I would have opted not to have my boys because that is 100% untrue. My feelings on this are NOT related to not wanting to have “different” children but instead more of a reflection on my lack of faith in my own parenting skills and capabilities

I didn’t think I had it in me to pull this off.

But that’s why we are not shown everything that our futures hold too soon. God knows that we can only handle so much and that’s why things unfold gradually and He strengthens us, as we need it.

There has been a lot of water under the bridge since that photo was taken. This photo below shows something more accurate. These days we are exhausted and spent.

Autism has gripped us with fear at times and taken huge chunks of our motivation and drive with it. We are both exhausted mentally, physically and emotionally.

And that’s why we have decided to go away and have a break. A recharge, a change of scenery and some much needed child-free together time.

My beautiful Mum has agreed to have the children for seven whole nights and we really do know how incredibly fortunate we are to have this opportunity. I know that there are so many other families that also desperately need a break too but are unable for several reasons to make it happen.

To all of my single mother friends – you guys are incredible. To all my friends with partners who are always away – you have my prayers too, to my mother friends who have to work outside the home for whatever reason – I take my hat off to you and your massive sacrifices and as much as I feel bad that I do have a chance to go away and recouperate and many of you don’t – I  have to take this break because I know that we can’t continue to go on this way.

We are going to an undisclosed location so that we can really escape. We can’t wait to go out to eat without a social story in place. To browse around markets and shopping centres without having to have a set time limit and to have leisurely strolls just.because.we.can.

To be able to sleep through the night without a child wandering in at ridiculous hours and to do whatever the hell we want whenever the hell we want to.

Bliss.

We are going to the wonderful place in the screen shot below:

But I’m not revealing the location or actual time that we are going away until after we return home again in a attempt to protect my family.

I promise to write all about it on our return and I pray that you all have a fabulous week.

Love Fiona xx

Wordless Wednesday 23rd May 2012…..Pick the aspies :)

I know this an old photo but it always make me giggle.

It’s not hard to tell who are easily distracted in our family is it?

What I’ve learned these past few years.

Sometimes, no matter how hard you try or how much work you put in, there are going to be days that are harder than others.

That is the nature of autism.

It’s neither good nor bad. It is what it is.

And when you love someone with autism, you will keep putting one foot in front of the other until the hard times pass because the joy that is at the end is indescribable – the rewards are priceless.

And that my friends; makes all the harder times worthwhile.

What has autism taught you?

I am the mother take 2

It’s time for another “I am the Mother” post.  I still smile as I read the ** Original Version ** that I wrote because a lot has changed since then

These days:

• I am the mother who is fluent in sarcasm but knows that she shouldn’t use it as often as she does.  Especially on her children who don’t understand it.

• I am the mother  who sometimes buys treats and hides them in the house because she is tired of sharing everything else that she owns and wants just one thing for and ONLY her.

• I am the mother who owns 2 diaries and a calendar in the attempt to become more organised but has misplaced them all  :/

• I am the mother with the short attention span who often really struggles to focus due to her constant sleep deprived state.

• I am the mother who really wishes she could toughen up a bit and not get so hurt by other people’s words.

• I am the mother who definitely thinks that exercise is overrated. Come and live in this house and try to be idle with my kids around. Not possible.

• I am the mother who wishes that she didn’t comfort eat so often.

• I am the mother who would rather be accused of talking too much then be the kind of person that you need to draaaaaaaaaaag a conversation out of. This is who she is. Like it or leave

• I am the mother who really wishes that school went until 5pm and that homework didn’t exist. She is exhausted from spending twenty minutes just trying to get her son to sit at the table and another 20 minutes convincing him to pick up the pencil!

• I am the mother who secretly loves watching pre-school tv shows and misses them now that her baby has started school

• I am the mother who still cries at least once a week because she misses her Dad even though we lost him over 4 years ago.

• I am the mother who is unable to eat just one grape. The grapes HAVE to be eaten in pairs. One on each side of the mouth. (Hmmm, wonder where Harley gets his quirks from?)

• I am the mother who gets cranky when she’s not taken seriously. I may not have a fancy degree but I know my children better than anybody else on this earth and that should account for something…

• I  am the mother that rearranges other people’s cutlery drawers when she visits their homes. It must go in the same order that they are laid on the table : Fork, Spoon, Knife. She doesn’t cope if they are different  And incidentally,  I am the mother who didn’t develop OCD tendencies until she was thrust in the world that is ASD and the stress that goes along with it!

** image credit

However:

• I am also the wife who deliberately stacks the dishwasher incorrectly because she thinks it’s funny to see it un-nerve her husband, and the wife who likes to rearrange his Star Wars Lego for the same reason

• I am the mother who gets to witness MANY achievements and successes in her children’s lives and is finds joy in the smaller things because for us they are HUGE!

• I am the mother who is convinced that her children will go higher and grow stronger than a lot of people give them credit for due to the handful of people that DO believe in them and their go-get- ‘em attitudes.

• I am the mother who is thankful that God is daily giving her more and more insight into their little worlds so that she can understand them just that little bit more.

• I am the mother who would some days like to hang up her hat and resign. Or at least have a couple of weeks paid leave. Several times a year.The mother who didn’t read the fine print before putting her hand up and volunteering to do this job BUT the mother who doesn’t walk away from somethings that she’s started until she sees it to completion.

I am feisty, I am compassionate and I am a fighter.

My children will not fly under any radars and they will not go through life feeling like failures.

What kind of mother are you?

I remember…..

This was taken a few weeks after we received Harley's diagnosis. The same age as my reader's child.

I often get emails from strangers who have read my blog and just want to connect by telling me their story. They write and tell me how autism affects their lives and often the parallels between something I’ve written and what they are experiencing in their own worlds is fascinating.

I love receiving emails because it motivates me to keep writing and to keep spreading awareness one reader at a time.

I opened my email a couple of days ago and there was a new message from a brand new reader who had stumbled onto my blog during one of those (I assume) frantic 3am google searches.

They wrote about their child who has only been diagnosed as recently as 2 months ago. They don’t have any support networks as of yet and are not in contact with any other families that are walking a similar path to them. They feel isolated and frightened.

So naturally I sent them the link to Welcome To The Club written by the amazing Jess over at Diary Of A Mom. Because EVERY new parent should be handed that letter along with their child’s diagnosis. It is vital reading.

But do me a favour?….Finish reading this post before you click over there because once you’ve read Jess….you won’t want to come back

The parent who emailed me desperately wanted to know that there is a light at the end of the proverbial tunnel. They were anxious to find out when and if their child will grow out of this overwhelmingly exhausting stage and wanted reassurance that it will all be ok.  And to be completely truthful – I was unsure how to answer this at first.

I didn’t want to lie and tell them that the meltdowns, tantrums and sensory issues would just magically disappear one day and that life would become all honky dory all of a sudden. And I didn’t want to give them any false hope by telling them that they can expect their child to become “typical” overnight, but I wanted to assure them that what they are experiencing is a normal part of the early days of discovering that you have a child on the autistic spectrum.

I wrote of the feelings of loneliness, of grief and of self-doubt and I told them that I truly understood. I recognised the fear, the anxiety and the emotional overload that was evident in their email and I was forced to go back in my memory to when Harley was first diagnosed at exactly the same age that their child is now.

I remembered the meltdowns that seemed to go forever. I recorded some of them on my mobile phone so I could show it to the paediatrician because it felt like NO-ONE would believe that there was something “odd” about my child. He watched them and nodded knowingly and told me that I would eventually find a way to manage them.

I didn’t believe him.

I remembered the punch in the guts when this very same Doctor told us that our child was “different” and that we would need to adapt as he handed us a list of therapists, specialists and blood tests request forms. I remembered the desperate feeling of abandonment, and feeling overwhelmed and exhausted all at once.

And I remembering thinking that we’d never make it.

But you know what? Through forcing myself to go back and deliberately remember those early days – I was able to see for the first time just HOW FAR WE HAVE COME!

And it got me all excited!

I remembered these feelings and thoughts, but was able to recognise that we don’t live there permanently anymore. We visit them occasionally and we will always be tied to them in some way, but we have moved on to become stronger, wiser and a lot more street smart.

And so YES, I was able to see that there IS a light at the end of that darn tunnel. YES, it WILL get easier, but sometimes it’s probably more likely a case of our challenges seeming more manageable because we now have experience and adaptability on our side.

Back in those early days, we weren’t as capable of predicting possible outcomes in the same way that we can now. We now know precisely what Harley’s triggers are and we either avoid them completely or find other ways around them to make them work for us. We have developed a “tool kit” that is custom designed for him and we rarely go out unprepared these days.

We’ve altered our expectations and have finally realised that sometimes it just isn’t worth pushing stubborn elephants up hill anymore.

And because of this I would say: YES. There is hope. There is HOPE and you will be ok.  My heart breaks for the pain they are in but I KNOW that they WILL be ok.

Because love conquers all and they have more than enough of that for their child or they would never have cared enough to write.

Executive functioning and visual aids.

Temple Grandin once said:

“I cannot hold one piece of information in my mind while I manipulate the next step in the sequence.”

Individuals with AS often lack the ability to use skills related to executive functioning like planning, sequencing and self-regulation.

>> Source <<

So, What is executive functioning and how does it affect those with autism? Well….in autistic individuals, it’s more of a “dysfunction” than anything else because it is something that many of them struggle with greatly.

Put simply: Executive Functioning is something that is instinctive in those with NT (neuro-typical) minds but needs to be taught and learned in children with autism.

It includes skills like planning, organisation, attention being held and the inability to see the big picture. People with an executive dysfunction tend to focus on the small or minor details and miss the rest.

As Temple Grandin said in the above quote –  She is unable to ‘plan ahead’ if she’s in the middle of a different task.

Can you see how many problems this can cause for my kids? Yep. A lot!

I often have to stop myself when I’m giving directions to them because I remember that I have given them too many instructions and that they are unable to take it all in and act on it.

Like – telling the kids to “tidy up their rooms”. That is waaaay too general and non-specific. So I have to break it down into little bite sized chunks and walk them through it step-by-step.

We are a big fan of using visuals in this house. We have them everywhere! On the fridge, above the basin, on the toilet wall, in the shower, over the bath, in the car and on their wardrobes reminding them to do the basic tasks like getting dressed. A simple picture of them getting dressed wouldn’t work, they need the sequence that the clothes need to go on.

And visuals are useless if you don’t teach your child how to use them effectively and have them teach you back so that you know that they fully understand the purpose of them.

As you can see in the above picture, all the tubs in our toy room have enlarged photographs on them of their exact contents. This makes it so much easier for the boys to tidy up. If they don’t know exactly where something goes they can look for it in the photo.

Below is a short video of Lucas and I today “tidying” up the toys and you can see how the technique has started to work but still needs a lot of work (on my part too).

Sure it’s a much longer drawn out process than if I tidied it myself, but it’s important to me that my kids learn these basic life skills so that they can take them with them into their adult lives.

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Oh , and I actually managed to post on my poor neglected ‘fun’ blog today as well. Just a silly poem about school holidays. You can read it by clicking >> HERE<<.

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Obsessed Or Overly Pro-active?

I was sitting chatting with a friend in a café catching up.

We hadn’t seen each other for a while and the conversation was moving along wonderfully. But suddenly she leaned over and said to me gently: “You know you’re kinda obsessed with autism right?”

I raised my eyebrows at her and feigned ignorance and replied: “Really? Do you think so?” While batting my eyelids at her.

“Well….yeah” she replied. “I mean, you write a blog, you have a Facebook page for the blog and all over your personal Facebook page it’s so obvious that you’re an autism Mama. You talk about it A LOT. It’s kind of an obsession for you isn’t it?”

I went home and thought long and hard about this conversation. She certainly had some valid points and I agree that it is a huge part of my life but I wondered about the word “obsession” and if it really was a fitting description. I wondered what exactly obsession means.

So I looked it up

obsession (əbˈsɛʃən)

— n 1. psychiatry a persistent idea or impulse that continually forces its way into consciousness, often associated with anxiety and mental illness

Isn’t that interesting?!

A persistent idea. An impulse that forces its way into consciousness.

Well!….. Yeah, autism IS persistent. It IS sometimes impulsive and a lot of the time it does create massive anxiety in both Harley and in me.

So does that mean that I’m “obsessed” with autism?

Well…whilst I can certainly see how it would appear that way…no, I don’t believe that I am ‘obsessed’. Extremely dedicated, interested, pro-active and keen yes, but obsessed? No.

Sure, it is a huge priority for me to continue to learn everything that I can about autism because it’s important to me to be able to provide exactly what my boys need. I want to be their safe place and their interpreter and translator. And for that to be effective…I need to know as much as I can about what I’m actually dealing with.

I’ve seen it too many times….the well meaning people who try to communicate with the boys but are clearly uneasy around them. And the boys have like a sixth sense with this stuff. They know when someone is belittling them or uncomfortable. They are really smart kids. They may not be able to read body language or facial expressions effectively but they instantly know who gets them and who doesn’t.

And this is why it’s important for me to understand as much as I can about autism and especially how it affects both of the boys differently.

So maybe I do talk about it a lot. I know that a lot of the conversations that I have with people somehow end up being about autism, but when you’re living something 24/7 and rarely get out…you can see why.

Other parents have no qualms sharing about their child’s latest academic or sporting achievement. Why can’t I proudly announce that my 5-year-old actually drank out of a straw without choking. Or boast about my 8-year-old who wrote his first legible sentence in grade 3? How about doing a happy dance because HE HAS A FRIEND! Because they are only small things for parents of typically developing children. But for me and thousands of other ASD parents….these things are huge and worth celebrating! These are things that we always assumed our kids would also do at the age appropriate times but had all but given up on them ever occurring at all after their autism diagnoses… We go on and on about these seemingly small achievements because we KNOW that they are massive leaps of progress in our worlds. It may appear to be a tad obsessive but for us – they are life-changing.

But another thing to remember is that autism isn’t exactly like having a broken leg. I mean, if you were to break your leg in a sporting incident…..it’s something that would inevitably come up a lot in conversation.

People see the plaster cast and they ask questions. They want to know all about the accident. Where did it happen? When did it happen? How did it happen? Can we sign your cast? There are Facebook status updates about it, a few cute photos and people continually ask you how you are managing now that things have changed.

But autism is a life-long diagnosis. And we mamas know that we’re in it for the long haul. Some autism Mamas don’t know that their child will actually be able to live by themselves one day, they know that one day they will no longer be here and their child will need a full-time carer because they are unable to take care of themselves. They lay awake at night worried because they just don’t know what’s in their child’s future.

Autism doesn’t simply disappear after a few uncomfortable months. And that scares a lot of people. But because we know that this is a lifetime commitment for us, we throw ourselves into being the best mother that we possibly can. Some still call that obsession and that’s ok, but when your 8-year-old son comes up and wraps his arms around your waist and hugs you tightly, you will happily wear that label.

And when he says: “ Mum, I know I’m harder work than regular kids. Thank you for taking such good care of me, I love you”…. You can handle being called just about anything in the world! Because moments like that make you realise that it’s all more than worth the tears, sleepless nights and frustrations and you throw yourself right back on the frontline with passion.

Obsessed or not. I’m not backing down.

¨ When your child is diagnosed with cancer, neighbours stop by your home bringing pre-cooked meals, hugs and support. When your child is diagnosed with Autism, families who see you in the supermarket will slip away down another aisle.”

Dr David Feinberg 2007

I’ve still got the pom-poms but I shake them less these days.

This is a similar tumour to mine but about half the size of mine....image via wikipedia.

This November it will be eight years since I had life-saving brain surgery to remove a tumour that was growing too close to my brain stem. I have mentioned it on this blog several times and it has never been a no-go topic for me but at the same time; I don’t instantly tell everyone that I meet because most of the time it’s just not necessary and rarely comes up in everyday conversation.

But people often look at me and know that something is different even if they don’t know why. In much the same way as my 2 high-functioning autistic boys often look “different” in how they behave but it’s not always obvious exactly why that is.

In my case: The tumour that I had, was tightly wrapped around both the facial and hearing nerves on the right side of my head. And two major side effects of this particular surgery are hearing loss and facial palsy in varying degrees.  This palsy may or may not get better over time and the old saying that “it’s different for everybody” certainly applies here.

I lost all of the hearing in my right ear and now have SSD and I did not regain my facial nerve back completely. That’s why people I meet can tell straight away that something is different about me. I have been left with a very crooked smile and the entire right side of my face has little movement. Most of the pictures of me that you find on this blog or anywhere else on the web (Facebook, Twitter etc) have been carefully screened by me first so that it’s not strikingly obvious to the average person.

But if you were to meet me in person….you would more than likely notice the palsy even though it has improved dramatically over the years. My close friends tell me that they barely notice it anymore but I’m not sure if I believe them though!

Most of the time, I don’t let my crooked face bother me too much, but if there’s a camera around – I never give an open-mouthed smile. And if I cry (which I do a lot), it’s painfully obvious as I only have one tear duct so only one eye goes puffy and only one cheek gets tear-stained. So I try not to cry in public!  Sometimes I find myself in social situations where I meet new people and notice them trying hard not to stare at my mouth when I talk or laugh. I can see that they are dying to know “what’s wrong with her face” but I sense that they would never ask me, so in moments like this – if it’s appropriate and I’m likely to encounter them sometime again in the future – I tell them why.

The result is usually mild embarrassment for them or fascination and often times: curiosity.

I’m fine with either response but I do so love it when I get to share my story and my triumphs and blessings as a result of going through such a rotten time, because I try really hard to not focus on the icky stuff that I went through after surgery such as self loathing, depression, grief, sadness and pain but to make myself see and verbalise the good things that came from it. I’m still alive aren’t I? And that’s got to be a good thing!

I truly do believe that God works ALL things out for our good and that trials strengthen us and develop our character.

And this thinking is similar to how I am now beginning to approach our family’s journey along the autism highway.

Often if we’re out in public and I notice people observing my son(s) behaviour(s) and wonder if I should offer up an explanation for it. Part of me wants them to understand the ‘why’s’ straight away but I’ve learned that this is rarely the case anyway. I see people watching them happy flapping or twirling around in circles carelessly and I also get the tsk tsk posse when they lose it or meltdown in public. People stare at that which is different. Right or wrong – it’s human nature and it’s just the way it is.

Once upon a time I would tell anyone I caught staring – regularly in fact – but nowadays, I usually decide against it because most of the time, it’s totally unnecessary for me to tell strangers and it’s simply none of their business and would serve no real purpose anyway. And it’s not because autism is a big secret or something to be ashamed of – because if that were true – I wouldn’t have such a public blog that my friends know about. However, I don’t exactly wear a sandwich board around my neck announcing it to every passer-by that I encounter either!

The difference is that the people who read this blog WANT to read and want to know more about life with aspergers, whereas people you meet in the street often have no knowledge of autism and don’t know us personally anyway.

So why don’t I announce it as often these days as before?

Well, I think it has a lot to do with the fact that I’ve discovered that by only drawing attention to the negative side of aspergers….I was only really telling one side of the story.

So take for example a hypothetical situation like my son having a meltdown in a supermarket. Once I would’ve played the autism card and “put strangers in their place” assuming that they were judging my parenting, but now: in situations like that, I ignore the stares and judgmental glares and only answer people on the odd occasion that they offer to help. I usually say something along the lines of: “Thank you but my son has autism and is a little overwhelmed right now. He is a great kid but just not coping too well at the moment I’m afraid”.

Because if my son’s meltdown is their first ever encounter with autism, then its possible that this may be the only thing that they ever associate with autism in the future. And I don’t want people stereotyping these kids as badly behaved, spoilt or bratty because I know that they’re not.

Autism parents know that raising these kids is hell on toast some days and Mr Patient and I often scream at the heavens: “WHAT NOW” but raising these special kids is not without its rewards either.

image via wikipedia.

We all know that there is so much more to our kids than bad behaviour, temper fits, meltdowns and rigid and inflexible thinking. So I’m making it my mission to showcase the amazing and beautiful parts of autism too.

A few weeks ago, I was out for afternoon tea in a local café with my 3 kids and a close friend and her child who also has Aspergers. Her child is a similar age to Harley and all the kids get on marvellously despite their respective social difficulties. There is an understanding between them all that is really beautiful to watch. We ordered our meals and the children sat beautifully and behaved remarkably well. They laughed, we chatted, and after we’d eaten, the kids all ran off to play in the playground. Our Waiter came over and commented to my friend and I on how wonderful the children were and how impressed he was with their manners and behaviour.

My friend smiled at him and asked him if he realised that 3 of the 4 children had a diagnosis on the autism spectrum, and he was truly amazed!

I’m not sure if our well-behaved and adorable children were not lining up with any pre-conceived ideas that he may have associated with autism but he was genuinely surprised and praised us for our remarkable dedication to raising them. (Which we lapped up of course!)

Then my friend pointed out to me the importance of praising our kids to strangers and highlighting that they really are remarkable even though sometimes it’s more of a struggle for them.

But the point that I guess I’m making here is that yes – I still want to spread awareness and I’m not hiding anything or trying to gloss over the hardships, but if I only ever take the hard times as opportunities to teach about autism, I’m not being completely fair to my kids or other individuals on the spectrum.

You can be assured that I will still probably write many posts in the weeks, months and years to come lamenting how damn hard this whole raising autistic kids thing is – because one thing I’m not in – is denial. It’s definitely not all roses, rainbows and sunshine but I will try to save those rants and raves and episodes of manic rage for this blog where the people who read it understand where I am coming from and already know that I adore my kids warts and all.

But I’m going to make a conscious decision to choose my time and place for that kind of rant more carefully.

Just like I don’t walk around telling everyone who even so much as glances at me that there is a reason that I look like I’ve had a stroke or bad plastic surgery – I will save the cold hard facts for appropriate situations or when there is a relationship formed with the other party. Autism is still so unbelievably misunderstood and unfortunately, many people still associate it with tantrums, screaming and uncontrollable rage but many fail to see the loving and precious and amazing side as well.

Often as a mother of 2 children with autism I OFTEN fail to see past those tantrums, screaming fits and rage but I have the advantage of KNOWING that there is more to it than that. Other people don’t.

I will always be on the sidelines with my pom-poms and high kicks cheering on my kids and believing that they can do anything that typical children can do and I will remain their strongest advocate because I’m passionate about creating awareness and understanding for them, but I’m going to go about it in a completely different way from now on.

And if someone comments on an achievement that my child makes – I will use that opportunity to sing his praises and teach that there are no limits to what children on the spectrum can do. I will no longer use their hard and non-coping times as teaching exercises because I now see that I’ve had it wrong all along.

(Almost) Wordless Wednesday 15/2/12…my odd child!

I’m only just scraping in to Wordless Wednesday by a few hours here in Australia and I wasn’t going to post anything today but I just HAVE to share this.

I was heading to bed for an early night and went into the boy’s room to check on them first. I kissed them both and as I pulled up Lucas’ sheets, I noticed a big lump protruding from the bottom of the bed so I felt it but couldn’t work out what it was.  I went and turned on the hallway light to get a better look and had to stifle a laugh when I noticed him sporting an OVEN MITT on his FOOT???

Yup. That’s right. An oven mitt!

It was complete with food stains because it had been thrown in the hallway in front of the laundry (by a lazy me) so he’s obviously seen it on his way to his bedroom and thought: ‘Hmmmm……This big sock is pretty cool, I will put it on!’

What a thoroughly odd child!

But it did give me a giggle

A brand new ending.

Everyone told me I’d be sad when my youngest child Lucas started school.

Well ok, I am sad, but not for the reason that people expect. Sure I miss him but I’m not distressed or pining for him. I’m excited for him and am thrilled to be able to finally have a minute to myself to take a breath.

No-I’m sad because right now it feels like I’m watching a movie on repeat.

But because I’ve watched this stupid movie before and I know how it ends, I know that short of walking out of the room – I’m going to have to watch it to completion in wide screen view whether I like it or not.

It’s like an annoying case of déjà vu.

And this stupid movie is all about Lucas’ coping mechanisms for school – It seems that they are on red-alert ALREADY! And it’s only day 2.

I really thought we would get a LOT further in than this.

Sigh!

One of his teachers approached me this afternoon and asked how he went last night at home. I sighed and admitted that he was a complete basket case. Teary, emotional, cranky, tired and unapproachable but I didn’t think anything of it because I assumed that all Kindy kids were feeling exactly the same way.

Weren’t they?

But I didn’t tell anyone this.

I told everyone who asked me how much he loved his first day of school…and he did, but he didn’t cope very well.

So why didn’t I admit it?

Well…because I didn’t want to be THAT mother again.

I didn’t want to play the stupid flippin’ autism card this early in the piece.

I’m sure everyone is sick and tired of hearing about the hassles we have had with Harley and I wanted SO BADLY for it to be different this time. I deserve that at least don’t I?

It seems not.

This morning after the bell rung, the children all sat in the quadrangle and were taken off into their new classes one by one. All of the kindy, year 1, year 2 and year 3 kids had gone to their classes but I spotted Lucas (because he was the only one holding a stuffed monkey) sitting in the quadrangle amidst the much bigger year 4 kids looking lost and confused.

I alerted the teaching staff and he was walked to his class. I should have known then that the day started on the back foot.

And this afternoon, the teacher who summoned me mentioned that Lucas had a lot of trouble settling today. He didn’t understand or follow all of the instructions, he chewed relentlessly on anything that he could get near his mouth and he seemed overwhelmed and bewildered by the kids surrounding him.

She said that he had a few teary episodes but other than that he did great.

My heart sunk right into my shoes. This was all sounding waaaaay too familiar for my liking – It’s the same dumb movie that I have been watching for the past 4 years. Only this time it’s an updated version. This time it has extra added special effects. 3D in fact – the 2012 version.

I started to fret but then made the decision that I absolutely wasn’t going to have this. It doesn’t have to be the same movie replayed time and time again and I decided then and there that I refuse to be just another passive movie patron anymore.

Not if I had anything to do with it.

It was a real light-bulb moment for me when It dawned on me that I know the original and only author of life.

The alpha and Omega. The beginning and the end.

My God is the Director AND the Producer of everyone’s life movies and I know Him personally….I’m telling Him to go back to the script writers and demand that they change the stupid ending. I’m not having another drama on my hands. This one’s going to be a feel-good movie with a lot of comedy for good measure and a happy ending. People are going to talk about this movie for ages. It’s going to be a family friendly movie with a ‘choose your own adventure’ clause. And it’s going to be AWESOME!

None of this ‘woe is me’, ‘my poor child is destined to be a mess’ crap. This is going to be a great year for all of us.

Ok. So that’s settled.

Next task : Search for the stupid oxygen mask that I seem to have momentarily misplaced!

Back-up has arrived!

You know when you’re watching an action movie and there is a cop in the midst of a hostile and stressful situation that is rapidly escalating and he grabs his radio and calls for back-up?

And then when the back up arrives, he is no longer under threat of being out numbered and having the stuffing knocked out of him and he looks visibly much more relaxed and in control once again?

Yeah, well that’s kinda how I feel when my Mum comes to town to help The knowledge that there is someone else who has got my back and who ‘gets’ my kids is really quite a relief!

Last weekend, Mr Patient bundled both of the boys into the car and drove the 6 hours trek up to collect my Mum and bring her back here for Christmas. Ella and I stayed home together for a much-needed ‘girl’s weekend’ and let me tell you:    It-was-awesome!

.

 No screaming fits, no fighting, no tantrums or meltdowns and no sleepless nights. And Ella and I were able to have REAL conversations without being interrupted and yelled at. On the Saturday, we went with a friend down to a quaint little village and spent the day doing brunch, coffee and exploring the beautiful little craft shops and handmade lollies, jams and ice-cream….YUM!

We watched movies together at night over hot buttery popcorn and for the first time in a while – we both relaxed.

The boys arrived home the following day and from the second that Harley set foot in the door he was off his head. He screamed at everyone, he stomped around like a bear with a sore head and he was just plain miserable. The change in routine obviously messed with him so we just gave him a wide berth and left him alone to get it all out of his system.

Ugh!

There’s always a price to pay when we interfere with his expectations but lately I’ve really taken the standpoint that he needs to suck it up and realise that yelling at everyone else is just not socially acceptable behaviour. I’m still trying to figure out how to do this in a loving way but I’m coming up empty.

We have had to go to the shops on more than one occasion this week because with Christmas being only 3 days away, there are lots of little bits and pieces that need to be bought and errands that need to be run. And Harley has made no secret of the fact that he is NOT happy to be dragged around shopping centres.

To be fair – I know that it is extremely busy and overwhelming sensory wise, and there are people everywhere but we try to prepare him the best way that we can prior to leaving and try not to be out more than an hour at most, yet – he still continues to carry on and perform like a spoilt brat every.single.time. He is aggressive and cranky and verbally abusive to all of us.

And I’m completely over it.

Last night, I wrote on Wonderfully Wired’s Facebook Page  (which if you haven’t ‘liked’ yet…..you need to – I know, I know, shameless plug there!)

I really need to figure out how to teach Harley about the need to do things he doesn’t like (like shopping for necessities like food) and that the family doesn’t revolve around him and what he wants to do all the time. I know that sounds mean but sometimes I wish he would just suck it up because I try my hardest to accommodate him and his needs and requirements but he doesn’t give an inch…

I mean, it would be different if I expected him to go shopping every single day. Or if I expected him to spend hours upon hours walking around browsing, but I don’t. We go to the shops with lists and a specific purpose, I plan it down to the minute and only go where I absolutely have to. I leave the rest of it for the times that I can go without kids so I don’t think that I’m expecting too much from him. He just doesn’t want to go, that’s all.

I have a wonderful friend Lisa who is an adult with aspergers and she told me that for herself – she needs to plan breaks to just escape the crowds where she just focuses on things that make her happy before going out into the masses again.
So I’ve taken that on board and will try to schedule some of those in. And then when she gets home again she plans to do her favourite things to calm down again. And my wonderful friend Bec wrote on WW FB page that she acknowledges out loud that she realises that her son is feeling upset and gives it a name as her son is still quite non verbal and that  he seems to relax a little when she does that because then he thinks: “Thank God she knows..”

She said that validating her son was what he needed and I agree that it is JUST what Harley would need as well.

It might seem harsh that I am not more accommodating to his needs and you may ask why I even take him out at all when it would be easier to just leave him at home with Mum.

Well – this is how I see it:

One day, my son will have to find a job, find a place to live and shop for groceries if he wants to survive. He will need to go places that make him uncomfortable and he will need to be civil to people whether it is difficult or not. Being aggressive and cranky won’t fly with people in the big bad world. People won’t ever be as tolerant and understanding as we his family are.

And one day – he will be too old for his mother to step in and explain that “He has aspergers, and is still learning social protocol” to strangers.  He is going to have to learn to keep his anger in check and his dislikes quiet.

Because the simple fact is that whether it’s fair or not – that’s just the way it is. And I’m not doing my job as his mother if I don’t expose him to these things in small doses now. How is he ever going to learn how to behave if he’s not taught?

These things are not intuitive in him like they are in me. He is still learning that strangers don’t HAVE to like you. Strangers DO judge you on what you say and how you act and that it’s up to YOU to not give people reason to avoid you.

And please don’t leave me comments saying that I’m an intolerant mother who is trying to change my son into something that he’s not because if you think that – you’ve completely missed the point of this post. Because I love my son exactly how he is: and there’s nothing that he could do that would make me love him any less, but I am also neuro-typically wired and I see a lot of the little things that he misses.

I see the looks he gets when he performs badly in public places. Yes – I wish people were more accommodating and tolerant but – they’re not. I see how other kids look at him when he’s perseverating on a topic that bores them and I notice the way that adults look at me for an explanation when he says something completely inappropriate or blatantly rude – I see all these things and so do most of his peers. And instead of allowing these things to cripple me emotionally – I am going to do my darndest to teach my son what he needs to know to survive in this crazy mixed up world or ours.

But I’m not doing it alone.

Every day I pray that God will guide my tongue so that I don’t destroy him with words. I ask God to watch my actions and to alert me if I’ve done something that could potentially take him ten steps back and I make sure that I tell him that I love him and who he is every.single.day.

And I really honestly do.

But right now, I have back-up. Harley is getting double doses of guidance, correction and most importantly of love. And I KNOW that he is going to grow into an awesome young man because God doesn’t make junk.  Sure – Harley  may be a squeaky wheel now but the upside to this is that he will NEVER go un-noticed or forgotten. And that’s a good thing right?

Right.

Well – I’m off to have a coffee and a slice of the gluten-free decadent Christmas Cake that I just made with 8 espresso shots, an entire block of fruit and nut chocolate and half a cup of Baileys!

Happy Christmas All xxxx

Unsent letter

To the person who has hurt us,

You do know who you are,

I want to tell you here- right now,

That you have gone too far.

.

I want to let you know that we,

Still love you just the same,

But it hurts me when you judge our ways,

And give me all the blame

.

You know my life is not like yours,

And it will never be,

I do the best with what I have,

So please don’t bad mouth me

.

My children know that they come first,

And have my full attention,

So forgive me now, if you’ve to wait,

And I am not perfection

.

I feel that you just inward look,

And make it all about you,

But in THIS house, we’re not that way,

You never seem to approve

.

I’m sorry if you feel that I,

Have been a dreadful pain,

I have no time for childish rants,

It’s puts me off my game

.

My days are filled with ASDs

And everything that includes,

So give me grace when I am not,

Always in the happiest moods

.

I’m sorry that I sometimes get,

All tense and non compliant,

But all this stress has turned my woes,

Into a towering giant.

.

I’ve never claimed to be immune,

To snapping under pressure,

But bringing up the past to us,

Just brings us such displeasure.

.

So instead of focusing on yourself,

Why not offer to shoulder our burden,

And walk a mile in different shoes,

Before just spurting your poison.

.

I work so hard but still you want,

To criticize me and complain,

You won’t believe in ASDs

So it’s always just the same…

.

I’ve tried to tell you all I can,

But you don’t want to listen,

So saying that I am “not right”

Has been your latest mission

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If I’m “not right” then why do I,

Do most of this myself?

And manage to raise gorgeous kids,

With barely any help?

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The things that you’ve complained about,

Weren’t done to tick you off,

My heart was right, and full of love,

But now….I’ve had enough

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I can’t go on pretending that,

Everything is now okay,

I’ve tried my best – but it’s not enough,

I’ve nothing left to say

.

I truly hope that you get to,

The place where you find peace,

I pray that God will bless you lots,

And that this tension now will cease…..

The armchair analogy

image from: featherandnestkim.blogspot.com

Yes!

It’s snowing on my blog! Usually it would seem silly being that I live in the Southern Hemisphere and it is Summertime here during Christmas but I thought that it was fitting since it has been SO COLD here this past week!

And sadly, the weather isn’t the only thing that’s been a downer lately. It has been quite difficult for me in that I really have been consumed with feelings of mother guilt and regrets.

And while I know that I am probably being too hard on myself – I have struggled to get past these feelings.

Harley had a particularly rough time last week, which I found really hard to take because things had only just started to look up again. If you remember the post before this one – I was just celebrating how far he has come only to slump back to reality with a thud once again.

He is still being bullied at school and it’s really taking its toll on him. There are 2 kids doing the bulk of the teasing but once of them is the ring-leader and the other one a follower. The main gist of the teasing is about him having aspergers and has now extended to him being gluten-free.

I know.

Stupid things to bully a person over but that’s what’s happening.

And I know that Harley is particularly sensitive – more so than your average 8-year-old boy, but that’s just the way he is made and no amount of coaching is going to change his genetic make-up. He gets it from me I suppose because I’m easily hurt by words and it’s killing me to see my boy so sad.

The hard part is that the bully is known to be a “nice kid” to the teachers so convincing them that there is more than meets the eye is proving to be a tough one.

And as it is with most spectrum kids, Harley hasn’t got the ability to be as cunning as his NT peers and often gets caught retaliating when the instigator gets off scott-free because he is smart enough not to do it in front of the teachers.

But I trust the school to tackle this in the right way.

I have to. It’s all I can do right now.

There are only 4 days left of the school year before they break up for 7 ½ weeks and I considered not saying anything and just hoping that it will all blow over, but I decided that if I mention it now, at least if anything happens next year there will be a history of this recorded.

~

We received both of the older children’s school reports last week too.

Ella did exceptionally well and we are mega proud of her. We believe she could have done even better because she also readily admits that she didn’t give her all.

But she is naturally a very smart kid. She has always been an A and B student and has glided through academically since day one with barely any effort at all.

I haven’t really had to put any time into convincing her to do her homework and she tackles all her work with determination. But it’s important to note that we didn’t do anything to make her that way. That’s just how she is. And we are very proud of her success.

But conversely, we have spent hundreds of dollars on tutoring and therapies on Harley and I personally have dedicated many many hours to helping him and yet he has struggled with every.single.subject this year.

Sigh.

His marks weren’t terrible, he isn’t lagging behind the rest of the class and comments on his report reflected that he tried his very best and that he is really really trying but they also scream out ASPIE ALERT all the way through.

Comments such as: ‘gets distracted easily, needs support to complete fine motor activities and struggles with hand-writing’ were all the way through it. He can’t help that. It’s who he is.

And we are oh-so-proud of him because we know that he gave his all and that’s all we ever expect but he is being hard on himself. (Wonder where he gets THAT from?!)

If anything, he worked HARDER than Ella yet she blitzed him with no real effort at all and that was a bitter pill for him to swallow.

~

There is a beautiful little girl in Harley’s class who also has aspergers and she did remarkably well this year and I am SO proud of her! She deserved the accolades because she did such fabulous work this year.

Her lovely mother (a friend of mine) needs a pat on the back too because she also worked really hard with her and I’m thrilled that their hard work has paid off.

But I am worried….. Because I’m hoping that the teachers aren’t seeing this as her trying really hard and Harley not trying at all. I hope that they don’t expect him to be like her because it’s never gonna happen! He is a completely different person with completely different skills and talents.

All you autism parent friends will know the saying : “If you’ve met one person with autism, then you’ve met one person with autism” and this is so true when it comes to Harley.

I have watched him push himself but I have also watched him crumble. I have seen him strive but also dissolve into tears regularly.

It breaks my heart to see him walk out of school deflated and I know how much of a toll this year has taken on him. And to have it all topped off with bullying is the straw that’s breaking the proverbial camel’s back.

So I sit here and ask myself these questions : What could I have done differently for my boy?

What skills should I have put more hours into teaching him so that he didn’t have to struggle so much?

Should I have encouraged him more?

Would it have been different if I had invested more time into teaching him coping mechanisms rather than insisting that he do it my way?

And then it all starts to do my head in and I start to reconsider home-schooling him again.

Not because I think I could do a better job – actually quite the opposite.

I know that I am NOT cut out to be a teacher at all but I don’t want to keep sending my boy into his idea of hell everyday and keep expecting him to force his square peg butt into the very round holes that is the school environment.

I know that my boy will achieve great things. I KNOW that he will not only survive but he will be sensational and I KNOW that he is destined for great things.

But I just wish it didn’t have to take such a toll on him in the process.

He is an amazing kid. ALL of my kids are, and I’m still yet to find out how Lucas will handle school next year but I refuse to let my head go there just yet!

And its times like this that I am so pleased that I have a close relationship with Jesus.

My Dad taught me to visualise a big stuffed comfortable armchair in a room with a light breeze and all my happy things surrounding me. Then he told me to imagine laying back into it and just resting and relaxing and knowing that I am loved and well cared for.

And he explained that this is what God means when He tells us to “Rest in Him”.

Sounds great right?

Nope…sounds AWESOME!

I’m of to find a comfy place right now and if you’re looking for me, I’ll be asleep in my armchair with my caffeine I.V. drip in my arm and a tray of chocolates that never runs out beside me.

Because THAT my friends,  is my idea of heaven.

Distillation in verse.

It’s ok peoples

You don’t need to worry about me….I’m not in a terribly bad place….well not exactly a great place either, but it’s nothing to be concerned about.

I was in a bad (ish) place earlier on but I have worked through a lot of the ‘stuff’ and ‘nonsense’ and some of it has been dealt with.

Some of it

I’m just attempting to clear my head of the thousands of crazy, ridiculous,persistent and nagging thoughts relating to certain circumstances that have plagued us as a family lately, and for me personally – I find that using the medium of poetry is particularly cathartic.

Head is spinning,

Eyes are sore,

Tired of crying,

I can’t take any more.

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Questions looping,

Answers not there,

Frustrated, angry,

Not wanting to care.

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Desiring, needing,

Wanting some peace,

Anger is building,

It needs to be released.

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Tired of fighting,

Nothing seems to work,

Wanting to escape,

But this ire still lurks.

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Praying, pleading,

Wanting to be free,

Crying and hurting,

This really isn’t me.

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Sleepy, weepy,

Knowing this will pass,

But not wanting to wait for it,

Is that too much to ask?