Above and beyond.

Over the past week or so there has been a thread on twitter called “#youmightbeanautismparentif” and parents of children on the spectrum from all over the world have added their nuggets of wisdom.

I have spent hours reading them with tears of recognition, joy, and sadness and while it’s great to know that there are so many of us on very similar yet also strikingly different journeys, it is also very confronting because the fact that autism is a majorly misunderstood condition became very apparent.

I tweeted several times on this hashtag but there were two particular tweets of mine that were retweeted several times.

They were: “#youmightbeanautismarentif: your child hands you a scrawled note that you can hardly read but you recognise the word “love” & that’s all that matters  

&

#youmightbeanautismarentif: you get excited about the little things because for you they are BIG things.

And these two tweets are what I plan to write tonight’s post about. Let’s call it “Progress”.

Actually, no.

Scrap that. I’ll go one better than that and call it “Promotion” because I really do feel that I can look back at 2011 and feel like we have all earned our stripes and started climbing up to the next prestigious level of achievement.

I was reading back over my blog from this time last year and I was blown away by how far we really have come in just 12 short months.

The first post that grabbed my attention was written on this same exact day: 28th November 2010.

It was a post that I obviously wrote in one of my darker hours. I was in a bit of a ditch and longing for sturdy ground. I wrote this line:

Harley has been hitting other children at school, he is obviously not coping. 
His punishment?….writing words out of a dictionary….

I remember it well. I was over everything at this point. Completely and entirely over it. We had spent literally months fighting to get what Harley deserved and he responded by physically and emotionally attacking us at home and it had just started to seep out into the playground as well.

He struggled so much with his handwriting, he was physically unable to hold a pencil for long and school-work just about did his head in every day. It was hard enough for the poor child to even sit in his seat due to the massive sensory overload that he was experiencing every second of every day, let alone achieve what the other kids were able to without even being consciously aware of it. And he knew he wasn’t able to reach the same standards that they were so he descended into attack mode.

So for him to be given the task of WRITING as punishment??? Well…my reaction to that can be figured out pretty easily.

But back to my tweets: your child hands you a scrawled note that you can hardly read but you recognise the word “love” & that’s all that matters …..

Can you see how huge this is?

Can you see that for me – receiving a love note from my child is massive in itself, but to think that he took the time to do something that he despises and struggles with just to let me know how he feels….it’s just…..WOW!

And my reaction to his letter also incorporates my second tweet: you get excited about the little things because for you they are BIG things.

~

I read a little further back in my blog and I came across the post that I wrote about Lucas’ Early Intervention’s final group and their little end-of-year Christmas Party.  (Funnily enough TODAY was the day for this year’s finale and party…and he is now a GRADUATE!)

Anyway….Last year I wrote that I came home devastated because I was the only parent who’d forgotten that it was the final week and didn’t come prepared with party food and ironically, I’d only just written a post 3 days earlier appropriately entitled: I forgot.

My brain was literally fried, my coping strategies were almost nil and my will to keep putting one foot in front of the other was severely challenged.

Here are a couple of excerpts from that post:

The parents were handed scrapbooks full of all the work that our children have been doing this year.

And this is the part where my heart sank.

No, not because it was bad work, but quite the opposite.

I realised how much of Lucas’ growth and achievements I had actually missed.

And:

I must have looked like mother-of-the-year when I loudly exclaimed “Wow, Lucas, you can actually use scissors!”………..One of the leaders looked at me surprised that I had not known this about my own son!

I didn’t even know he had even ever held a pair!

It seems that I had gotten so busy with everything else that was going on in my life; Lucas had managed to fly under the radar.

But look at him now! Look at what he brought home today!

And I knew that he was capable of doing all of these things. I have finally cleared a space in my crowded brain to make room for recognising and praising his achievements this time around.

12 months ago I still had a child in nappies at 4 ½ wondering if he would EVER get the gist of toileting…..

12 months ago I seriously wondered if I would have to repeat Harley at school.

12 months ago Ella was just starting to recover from years of torment and bullying after one of her bullies left the school.

And 12 months ago I was pleading for the holidays to begin.

This year – we have had Lucas toilet trained for almost a year now, he is starting big school in February, he has come ahead in leaps and bounds with his speech and has benefited massively from all the early intervention that he has received.

Harley – well, he his reading level is in line with what’s expected for his age group. He is having intensive OT with a wonderful lady who has built an amazing repoire with him and he is willingly writing shopping lists, score tally sheets and love notes to his Mum.

It says: I love, love you Mum. Thanks for ice-cream and pizza. You're so beautiful...

And socially Ella is part of a wonderful little group of genuinely lovely girls, I have set the foundations for us to build even further on the mother/daughter trust relationship and as of ten minutes ago I received a text message from Mr Patient who is at her school presentation night where she just received a Principals award for academic achievement.

So I think that Promotion is definitely the word of the hour here and it’s so true that you get excited about the little things because for you they are BIG things.

Pod-racers and persnickety people. It’s all a learning curve.

  Last weekend ,we bribed  promised the boys that they would get a small Lego toy if they got their hair cut. Hey…whatever works people alright! My boys hate getting their hair cut so we used the currency that they respond to.

So off we went to Big W and walked towards the toy department.

In the Lego aisle there was a beautiful little sandy-haired boy who I guess was about 6 or 7. His father was shadowing him closely and they were looking intently at the Star Wars Lego together.

I recognised a lot of the dialogue from The Phantom Menace being scripted by the boy (yes….I am surrounded by it – some of it is BOUND to sink in!) and I watched as he pulled all the boxes to the front of the shelves and started to re-arrange them in size order. My ASD radar was well-and-truly dinging at this stage but I shrugged and turned my attention back to my boys. However, the knowing look that Mr Patient and I exchanged said it all

Harley was on the verge of a meltdown and was showing some very early indicators that we were on a time limit. He was rocking back and forth on his heels and his arms were stiff by his side and his face was contorted into a puzzled frown. It was still early enough to get him out in time but we had to make the transition as smooth as possible.

I narrowed down the selection by pulling 2 boxes down from the shelves in the price bracket that we had already pre-determined and told him that he needed to pick one of the two I was offering. I have learnt that he copes better when a huge chunk of the decision process is done for him and I knew that now wasn’t the time to overwhelm him with choice.

He selected one and started to visibly relax. Lucas grabbed the other one and we headed for the front of the store so we could go and pay for the Lego.

Behind us I heard what sounded like chanting but on closer listening I realised that it was the same phrase being repeated over and over again at a rapidly rising volume. It was the little sandy headed boy saying: “I want this pod- racer, I want this pod-racer, I want this pod-racer” and he was flapping his arms furiously.

His father (bless him) got down to his son’s level BESIDE him not in front of him and gently whispered something into his ear while stroking the boy’s forearm firmly. The boy started jumping up and down on the spot and flailing his arms everywhere and screaming bloody murder.

The Dad realised that it had escalated so he took his little boy by the hand and started to gently walk him to a quiet corner but the boy wasn’t having a bar of it so the Dad decided to leave the store altogether. He wrapped his own coat tightly around the boy for security and walked past us and I overheard him saying gently: “Shhh, it’s ok, Daddy’s here.” And I wanted to hug this man.

By this point, I knew that my instincts about the boy were spot on because this Father looked like he had dealt with this many times before and there wasn’t a hint of anger or disappointment in his voice at all. He just wanted to remove his boy from what was overwhelming him.

Mr Patient looked at me and we both had tears in our eyes. We had both been exactly there on so many occasions in the past and seeing it played out in front of us was surreal.

As the father finally made it to the front of the store and proceeded to exit – his boy was now jumping and thrashing and clearly not coping but still chanting: ““I want this pod- racer, I want this pod-racer, I want this pod-racer”. My heart went out to them both but my compassion quickly turned to anger as I overheard a group of onlookers openly speak their uneducated opinions out loud.

“What a Sh*t of a kid / he needs a good thumping / OMG how funny – did you see that tanty that kid was chucking/ guess who Santa isn’t coming to/ If that we MY kid blah, blah, blah” ….Yeah well, it ain’t your kid so shut up!

They went on and on and on…..

I didn’t realise that I was stepping forward to say something until my husband put his hand on my shoulder and firmly pulled me back saying “No….stay out of this one Fi, this isn’t your battle”.

But man was I furious.

And I guess that this is another part of the reason that I blog about my family and our trials.

I know that there is a lot of misunderstanding out there about autism and what it is and exactly how it presents but instead of sitting back and moaning that “no-one gets it” I decided that I was going to splash our life with ASD all over the interwebs in the hope of contributing my little piece in creating more awareness. And from a new comment that I received today on yesterday’s post I can see that a helluva lot more needs to be done in raising awareness for this widely misunderstood but rapidly increasing conundrum that is autism.

I wrote yesterday about autistic obsessions or “special interests” if you will and how they can escalate into something that can easily get out of control and I was slugged with this comment:

** You’re the parent who buys all the Ben 10 merchandise, who allowed him to watch the programme to the point of obsession so what do you expect? Censorship is not only for teenagers and R rated movies. It is for littlies also. I know a modern, educated mother who was so proud that her daughter’s first word was “Elmo”??????? I can’t walk in your shoes but I can see the big picture from afar.

** So I replied with: I’m guessing that you don’t live with autism or have any idea about perseverations? Because clearly by your comment, you have no idea.

The thing is: Harley has never watched a single episode of Ben 10 and most of the Ben 10 merchandise that he owns was given to him.

His obsession started because a boy in his class liked Ben 10 and Harley wanting to be accepted (and most kids with autism are mimics) decided that to be “cool” and “popular” that he’d better like Ben 10 too so he took it upon himself to “research” Ben 10 by asking 1001 questions.
Harley would suck this information in like a sponge and be able to recite it whenever he needed to but he lacked the social understanding to recognise when he was in overkill so the off switch appeared to be broken in him.

If this commenter had bothered to read anymore of my posts and discovered more about this family and they way that we operate, or tried to gain a better understanding of perseverations and special interests in autistic kids, she’d know that her comment was way off the mark. She found me by typing Ben10 into a search engine (I discovered that in my stats) and obviously thought she needed to set me straight!

But what she didn’t know is that parents cannot control what their child develops an interest in. I have adult aspie friends who tell me that they don’t always choose what will become their next obsession and Tony Attwood who is a renowned world expert in Aspergers teaches that if you remove a special interest (SI) from a child – they will only seek it out more. The trick is to use the SI to help guide the child in the direction that is desired.

Allow the child a certain time frame to indulge in this interest as a reward for completing a task or weave it into their learning so it works for you instead of against you.

ie: Harley: what is 5 aliens + 7 aliens ?

It’s SO much more interesting for him to learn that way an far more effective!

~

This has actually been a week of discovering new and exciting things about myself though. It’s been a personal growth week in that realising that if I had have received a comment like that 2 years ago I would’ve fallen apart. It would have destroyed me and I would’ve been out for days. But now – it’s actually spurring me on to spread more and more awareness about autism because with every new day, It’s becoming increasingly apparent to me that my boys will have to go out into the big bad world one day and it’s not only my job to prepare them for it  - but to prepare the world for them.

Wordless Wednesday 23/11/11…Overwhelmed

Disneyland was awesome and we all had the best time but there were times when it just all got too much to handle.

Sensory overload was always a danger but my little trooper handled it brilliantly.

Just a passing interest or something more?

I was speaking to a friend recently who asked me if I ever wished that my boys looked “more autistic” than they do?

I didn’t react badly because I know her well, and know she has a good heart and I completely understood where she was coming from. She meant no malice by this question and was merely trying to “say the right thing”. She knows that us autism parents are sometimes overly touchy when it comes to our kids.

She was basically asking me if I thought that society would be easier on them if they had an “obvious” disability rather than a “hidden” one. (And one that a huge majority of the general public doesn’t even really believe exists anyway!)

And so I replied “yes”…..because I do think sometimes that it would be easier. I mean, if my child was in a wheelchair, people wouldn’t expect him to enter a running race but because he can “talk” it is instantly assumed that he knows how to communicate effectively. It’s a whole other post to explain the different elements of communication so I will leave that for another time.

I can’t tell you how many times I’ve been in conversations with people and I have perhaps mentioned one of Harley’s obsessions only to be answered with, “But all kids do that”.

Or “Yeah, I know what you mean, my little Johnny is JUST like that too”.

I feel like answering them with something like “Well, if you child IS exactly like that, maybe you should get them assessed too”.

I have never claimed to be an expert on autism spectrum disorders and I will never know as much as the professionals in my child’s lives but I do know my kids better than anyone and I know how their particular brand of autism presents on them.

Let me give an example:

Most little boys liked Thomas the Tank Engine/ Bob the Builder/Elmo, or Buzz Lightyear etc when they were little. Or maybe they love Ben 10/dinosaurs/rocket ships/trains or space as they get older.

And most little girls go through a Disney Princesses/My Little Pony/Barbie/My Littlest Pet Shop phase that can sometimes last years.  There are other little girls that have a fascination with faeries, puzzles/painting and animals.

And even if these interests DO last years…..it still doesn’t indicate a spectrum disorder.

It’s perfectly normal for children to like and be taken with these things. And our children are no different. They do, say, like and play with a lot of the things that their peers do because they are kids first and foremost whether they have a diagnosis or not.

After all…every year, millions of dollars are spent on marketing, research and advertising so that they these toys and characters DO appeal to all children and their target age groups !

But what might be an indication of a special interest perhaps being more of an autistic obsession can be when their love of that particular character/activity/object starts to interfere with their everyday functioning. They are unable to focus on anything else and it gets in the way of simple everyday tasks.

Another possible indication is if your child doesn’t actually seem to engage in make-believe play with these toys but spends hours lining them up in groups of colour/size/shape etc etc. They are able to “appear” to be playing with them but it is more an example of putting things in and orderly fashion because they feel the irresistable urge to do so.

Like for example Harley and his last obsession of Ben 10.

It stopped being a passing interest after a while and he didn’t  just “like” Ben 10. He was completely and entirely consumed by him.

Harley went through a phase where he refused point blank to wear anything BUT Ben 10 pyjamas to bed. And after school he changed immediately into either a green tshirt and blue jeans (despite the heat outside) or failing that, another different coloured t-shirt with a Ben 10 character printed on it.

He simply would not let us read any other book to him at bedtime other than one of his collection of Ben 10 books and every meal had to be eaten from a Ben10 plate with Ben 10 cutlery and he drank from his Ben 10 cup.

He spent (what seemed like) every waking moment talking our ears off about all the different aliens and due to his impaired social functioning, he has limited ability to read facial cues and continued his monolgues about Kevin Levin, Gwen and the omnitrix until I literally wanted to stab myself in the eyeballs!

He would also approach strangers in the public places and tells them ALL about his favourite alien boy hero and take no notice of the glazed over bored look on their faces.

It doesn’t matter how many times I tries to shift his focus, everything came straight back to Ben 10!

Homework is a MEGA challenge when your child is in the middle of an obsession…

I remember most afternoons going something like this:

Me: ”OK….What’s 5+7 Harley?”

H: “Mum, do you like the omnitrix or ultimatrix better?”

Me: “Focus Harley…I will answer you after your homework, now what’s 5+7?”

H: (sighs) “OK”… (counts on his fingertips)….”It’s 12 Mum, so which one do you like better?”

Me: “The omnitrix…it’s easier to say. Now how do you spell Lamb?”

H: “But the ultimatrix has more aliens, are you sure you don’t want to change your answer?”

Me: “Harley, we will talk about Ben 10 later…..now spell lamb please”

H: (getting agitated at me then shouts) “L-A-M..…Are you sure Mum”

Me: “Yes I’m sure. Could you please spell lamb again. That was wrong”

H: (really cranky now because he isn’t being allowed to obsess on Ben 10, then shouts at me again) “I SAID L-A-M!” (rolls his eyes)

Me: (trying to keep my cool) “Please don’t yell at Mummy, and no darling, it’s actually spelt L-A-M-B”

H: (rolling his eyes at me) “Well Mum, if you knew then why did you ask me… Derrrr!”

**

I wanted to quit or bang my head on a wall. Or both.

Seriously.

**

So….if you’re a parent of a typically developing child and you tell an autism parent that “My child does that” or “all kids do that” the next time they are pouring their heart out about the nightmare they are having with their child. Don’t try to reassure them that “All kids do that” because we don’t believe you. And ask yourself : Does this interest of my child’s completely absorb them to the point that they are unable to function in any other capacity? Has it become the ONLY thing they are able to focus on and rendered them completely unable to think/talk or act about anything else? Does life for everybody in your family come to a complete standstill because nothing can get done until the child’s interest and related questions are acknowledged and dealt with?

And if it’s something that “all kids do” ask yourself  about the frequency and the intensity that your child displays whilst they indulge in their obsession.

If not…..please don’t tell me them that “all kids do that”.

Because they don’t.

And it’s time like THIS that most of us wish that it was a more “obvious” disorder.

The debt collector is a ‘comin.

This was actually more jet-lag than anything but I think it's a hilarious pic!

Our family has a huge debt that keeps increasing day-by-day, week-by-week, month-by-month and year-by-year and I’m sure that we are going to be treading water for a lot longer just to stay afloat.  The debt collectors are sniffing at our door and we are doing our darndest to keep them away.

This stupid debt keeps attracting ridiculous amounts of interest and we never seem to make a dent in it no mater how hard we try.

Sure, we occasionally have a few weeks and sometimes months where we make a few solid payments and cut into the principle but those payments are never enough to actually get us as far in front as we’d like.

Most of the time, we don’t even care about meeting the minimum payment, we would be happy just to pay ANYTHING off.

But don’t worry Mum: We’re not going to have to declare bankruptcy anytime soon because I’m talking about our sleep debt.

I seem to write a lot of posts about sleep on this ‘ere blog which is actually quite amusing considering that it’s something that none of us have very much of!

And during these past few weeks I have noticed some very interesting things relating to sleep.

Since we moved Harley’s bed into Lucas’ room, they have both been sleeping a lot better and that in itself is a miracle. Sure it takes them longer to fall asleep because they lay there and chat for a bit (like I assume some married couples do as they talk about their day – but not us…no, my husband has a patented phrase: “Head on pillow, light out, no talking) but once they fall asleep, Harley is now staying in his own room.

YAY!

But this weekend we have had some very interesting developments.

~Mr Patient has travelled with his job for the entire 14 years that we have been together and the 13 that we have been married and although it’s sometimes tough: It’s not a big deal because we are all so used to it.  Well, 3 of us are, Harley has never been a fan of change whether he has been adequately prepared for it or not.

And this past week, Mr Patient was away for 5 days.

Well….Most nights went like this:

7:30pm: – I put the boys to bed.

7:31 pm – 12am: Harley comes out every ten minutes to check that I’m still here.

12:00am: – I go to bed (yes, it’s late but I usually have so much to that it’s just the way it is).

12:01am – 3 am, Harley comes into my room every 15-20 minutes to check that I haven’t gone anywhere.

3:00am – 6:00am : – I allow Harley into my bed because I’m exhausted and tired of walking him back and reassuring him that I’m not leaving EVERY FREAKING TWENTY MINUTES!

Rinse and repeat for the next 4 nights.

So as you can see: sleep just doesn’t happen when Daddy is away.

Well….you remember me writing that the whole boys sharing a room thing was working out ok??

Do you remember how excited I was because I thought I had found the solution at long last?

Do you?

Huh?

Well….yeah and nope.

It *is* working when Mr Patient is at home and all is routined and well but the second he sets foot out that door again, all bets are off.

And you know what? I’m an adult.

I don’t LIKE having my sleep stolen but I deal with it. It’s all part and parcel of having a special needs kid I’ve told myself , but Lucas?
WOAH hell no.

Prior to him sharing his room with Harley, yes he would get woken up frequently at night but it was always down the other end of the hallway so still managed to sleep through som of it.

But now? …… Now he hears EVERYTHING!!!!!!

Every toss and tumble in bed. Every sigh, grunt or groan. Every whimper and call for Mummy. Every time the door squeaks as Harley tip toes out. EVERY DARN THING!

And has it affected him?

*Gulp*

Yes. Very much thank you.

This entire weekend I could have sworn that the boys swapped bodies. Lucas has been the one whining incessantly. He has been the one with the filthy temper. He has been the one with the violent streak and the one who cries over ev-ery-thing!

He is like a mini Harley. Our mostly passive, agreeable boy has turned into a tantrum throwing, meltdowny emotionally hopeless wreck.

And why has this happened? Well….I’m guessing that he is behaving in a fashion similar to that of his older brother for much the same reason that Harley acts out:

HE IS SO DARN TIRED HE CAN HARDLY STAND IT!

There. I feel better now that I’ve gotten that off my chest.

Harley has gone back to sleeping through now that his Daddy is home again but not only do Mr Patient, Harley and I have this stupid sleep debt. Now Lucas needs to start making payments too.

But for him it is going to much easier: a power nap on the sofa here, a lie in on Saturday morning there, a snooze on the rug in front of the tv and slowly but surely he will pay his debt in full.

We have a massive 8-year debt to pay and it’s not something that can be remedied as easily. But My wonderful husband has recognised this need in me and allows me to stay in bed as long as I need to on Saturday mornings and sometimes Sunday’s too if it’s been a particularly bad week. And more often than not, he will also crash on the couch sometimes over the weekend too.

It’s kind of a 2 steps forward 1 step back thing but we are still moving forward albeit slowly.

And now, we’re left to come up with a payment plan for the next time that Mr Patient travels. And I only have a few days to do so before he’s off again.

And while I’m on this subject: My inbox currently sits at 176 as of an hour ago. 80 of these are notifications of posts on blogs that I am subscribed to and a large chunk of the rest are comments that have been made by all of you on my blog.

So if it seems that I am ignoring you or your blog, please know that I feel very bad about this but it all comes back to only having the funds to pay off one debt at a time and right now….the sleeping one has taken priority.

Refreshed, Renewed and Revitalised.

Sometimes, I feel like writing all my kid’s therapies and interventions down on separate post-it notes and sticking them randomly around the walls. Maybe then I could whack a blindfold on my face, have a friend spin me around 3 times while I point my finger out in front of me and wherever I end up pointing is how I decide which therapy has got to go.

I mean, seriously, how do you choose what to keep and what to let go? There are the factors of time, money and effectiveness not to mention deciding which ones are the most important for producing the best long-term outcome. Heck…they ALL are but there are only so many hours in the day!

~

So, anyway, here’s me thinking that Lucas was doing ok since he finished with his speech therapist a few months ago and I was seriously considering not even finding another one because he seemed to be doing ‘fine’. Well, yeah he is but it depends what you’re comparing it to.

If I was to compare it to how he was this time last year or even 2 years ago – of course he has improved, but if I were to compare it to say: my friend’s 2 year old who spoke to her in fluent clear sentences this morning-well… not so much.

This morning really showed me the depth of the chasm between reality and my rose-coloured version. Because, I understood every.single.word that my friend’s child spoke yet I still have to play interpreter for my 5-yr-old almost every day. That really kinda sucks but I’m mostly ok with that.

This time of the year is crazy in most households with the end of the calendar year and in Australia – the school year as well.

You can see it on the faces of the children everywhere. They’ve all had enough and are ready for a break. All of us parents are no different but I have reached the point this week where I am throwing in the towel and climbing onto my soapbox and shouting “ENOUGH ALREADY!!!!”

I’m over it.

O-V-E-R!

Over school, over therapies, over interventions and completely over the sometimes suffocating wet blanket that is autism.

As I drove away from dropping Lucas at pre-school this morning, I thought I had a post half-written in my head. I thought I was going to be writing about humour today (or lack thereof) but it turns out that things were going to go a little differently to what I had planned. I turned on to the freeway and started singing along at the top of my lungs to Michael Bublé.

Oh my Lord I love that guy. Mr Patient knows that he would instantly take a backseat if I were ever to meet the smooth Canadian dreamboat! LOL

I have this song:

 

as my ring tone and I’ve convinced myself that he wrote it for me

But…I digress…..

I was singing along with Mr Bublé and saw my exit coming up and decided that the housework would wait for me and so would the 101 things on my to-do list for today so I decided to keep driving.

I drove for about an hour and pulled over to the side of the road and parked the car and climbed out. I was in the country and I was feeling fabulous. The fresh air, the smell of nature and the sounds of chirping birds.

Awesome!

I was born on a farm, raised for the first 12 years of my life in a small town and moved to a slightly larger town for high school and KNOW that the country is where I feel the most peaceful in my life. It’s like the old saying….You can take the girl out of the country….

I have lived in large cities for almost 20 years now but I will always be a country girl at heart. And until this morning, I didn’t realise just how badly I really needed to get back to my peaceful place today.

I needed to escape the daily pressures of my busy life and I needed to be all by myself. I grabbed a bottle of water from my console, my sunglasses and my hat and went for a long walk in totally inappropriate footwear!

I found a big old gum tree in an isolated park and lay down under it and closed my eyes.  I was able to relax for what seemed like the first time in an eternity.

No pressures, no deadlines, no therapies and no interventions.

Just me, God and the amazing landscape that he created.

I dozed for a while and glanced at my watch, I was getting hungry so decided to drive to the next little township. I grabbed some fruit and more water and strolled through a little antique shop having the time of my life. After about half an hour I glanced at my watch again and knew that it was almost time to head back.

I kicked myself for not bringing a camera but remembered that I had my iPhone so I went and grabbed it to capture some of the breathtaking scenery all around me.

As I drove back towards home, I passed a little church. A beautiful picturesque little church and when I saw the words above the archway, I knew I had to stop and take a photo. It summed up exactly how I felt today.

Thankful.

Today didn’t cost me anything but a little petrol and time and what I gained from this experience was priceless.

I had 4 hours where nothing mattered, nobody wanted a piece of me and I was a free agent.

JUST what the Doctor ordered. I can now face the weekend and everything that comes my way totally refreshed, renewed and revitalised.

I highly recommend it.

Have a great weekend everybody xx

*

**My apologies to all you wonderful readers who have taken the time to leave me comments and I haven’t responded to you. And also to those whose blogs I haven’t gotten around to reading yet – I intend to remedy both of these issues  ASAP

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.

.

Questions looping,

Answers not there,

Frustrated, angry,

Not wanting to care.

.

Desiring, needing,

Wanting some peace,

Anger is building,

It needs to be released.

.

Tired of fighting,

Nothing seems to work,

Wanting to escape,

But this ire still lurks.

.

Praying, pleading,

Wanting to be free,

Crying and hurting,

This really isn’t me.

.

Sleepy, weepy,

Knowing this will pass,

But not wanting to wait for it,

Is that too much to ask?

Safe place.

My Facebook Status this morning, I didn't understand why I'd been drawn to it until later. It says: Your shadow will always release whatever overshadows you. Bill Johnson.

 

He walked into the bedroom having already been up for hours and sat beside me as I lay still refusing to move-still in bed, covering my head with the bed sheets.

“Come on” he said gently leading me towards the computer  ”I can tell you need to write this out”.

God bless my husband. He is a man of few words but he knew that his hugs weren’t going to be enough to cut it this morning. He knew that I needed to pray and to write until I felt right.

It was a really rough night for all of us last night. We had the annual school church service and for us – it wasn’t exactly fun. The service was great but Harley – Erm, not so much. I went prepared with the iPad, iPhone, Chewing gum, Chewy tubes, Headphones, Earphones and as much strength as I could muster but it wasn’t enough.

But I must say that Harley did a magnificent job of holding it in for the most part. I mean, I did have to take him outside twice to escape and he sat on the floor with tears streaming down his face while rocking and head banging my knee, but to the untrained eye….he didn’t seem too out of sorts. He just looked like he didn’t want to be there.

The car ride home was a completely different story though: It was a kicking, screaming, head-banging, sibling-punching, hair-pulling, scratching disaster.

“Church isn’t on a Saturday night Mum, it’s on a SUNDAY” he screamed at me while thumping his fist into the back of Ella’s seat.

My husband turned to me and asked: “It is wrong to just want a little bit of normal? Just once? Is it bad that I am feeling really ripped off right now? I just want to be a normal family. This completely sucks”

“Not at all” I replied. “I wish that a lot, and right now I freaking HATE autism”

 We both froze when a little voice in the backseat piped up: “But Mummy, I can’t help having autism, you said that God made me this way and that I am special”

I was gutted. I swear my heart stopped beating and I wanted to jump out of the moving car. I deserved to be hurt. Had I just undone years of building him up and months of teaching him who he is in Christ? Had I permanently damaged his sense of self-worth and made him doubt his value and place in society?

What had I just done? Who says that in front of their child who is already in a really bad place? I felt like the antithesis of a good mother.

I turned around in my seat and looked at my hurt little boy and said: “Honey, I hate autism, but not you. I hate it because it makes you sad and it makes things hard for you and I hate seeing you hurting and not being able to help. But I don’t hate you. I love you to the moon and back, you know that don’t you?”

He gave me a tiny smile and nodded.

Right then I wanted someone to punch me. I deserved to feel the physical pain that my child was feeling emotionally.  I absolutely hated myself for what I’d done. *I am supposed to be his safe place. The one he can run to when he’s frightened or confused.  And furthermore, I knew I was kidding myself. I hated autism more because of the sheer inconvenience and discomfort that it caused our family than anything else. It was a selfish reason for hating it and I knew it.

But I, like my husband just wanted to experience normal for once in our life. Just one night of not having to struggle, not having to walk on egg shells and not having to feel so isolated and mis-understood.

Is that really so bad? I’m not even sure anymore.

~~

And as I sit here writing out my emotions and my inner turmoil, God is speaking to me ever so gently.

He has taken my attention back to the line I typed only five short minutes ago:

* I am supposed to be his safe place. The one he can run to when he’s frightened or confused…

But God in His infinite mercy reminded me that HE is in fact the safe place, HE is the shelter in which Harley can hide and find comfort and that *I* am only human.

It’s only natural to have bad days, bad weeks and bad months but this does not constitute a bad life!

Wow. Talk about perspective.

Psalm 91:1 He who dwells in the shelter of the Most High will rest in the shadow of the Almighty.

Tidal waves.

I find it disconcerting to say the least when my child has a bad day, because a bad day round here doesn’t look the same as a bad day anywhere else.

No.

It looks like an angry tidal wave that is threatening to wash away everything in its path. You can’t escape it and there’s not a lot to grab onto to steady yourself anyway.

Everything seemed to be sailing smoothly this week until yesterday when Harley came home and flew into a rage that was completely unprovoked, unpredictable and unexplainable. As he ran through the house pushing things off shelves, kicking doors and walls and banging his own head repetitively on the cold, hard tiled floor, we stood by watching him helplessly knowing that we had to let him ride it out.

We knew that it was something big that had caused him to react this way and we also knew from painful experience that the underlying reason may not be something that would be discovered easily.

Although he appears to be in the fight response when he is like this, his inability to form coherent words when he is in this distraught state of mind causes him to cross over ever-so-slightly into flight mode. He mentally shuts down and his eyes glaze over as he searches frantically for a safe place. He needs to escape his own brain and he cannot rest until he does. He has been telling me in the days leading up to now that his brain feels fuzzy and that his head is telling him to stop spinning. I should have heeded this warning….

Because his cognitive functioning skills are non-existent at times like this and he lacks any hint of social appropriate behaviour when his brain overloads itself, I cannot do a darn thing for him.

He just needs to “get it out” and does so however his mis-firing brain tells him to do so. Appropriate or not.

But there is ALWAYS a trigger. It’s all about the three R’s. The rumbling, rage and recovery stages.

I failed to recognise the rumblings and was punched in the metaphorical face with the rage cycle instead and waiting until recovery arrived was my only choice. The only thing I could do was ensure that he was safe in the process and that his siblings were also kept out of his path until the storm had passed.

Eventually he fled to his bedroom and lay down on his bed thrashing and kicking until his body was so exhausted that he fell asleep. I went and laid down beside him and stroked his sweaty forehead and prayed over him until his body stopped fighting and surrendered to rest.

As an autism mother it is one of the most difficult parts of my job. It is draining, it is heart-breaking and nothing makes you feel more helpless than not being able to comfort your child when his thoughts are attacking him and he literally rips and scratches at his own head trying to get some peace.

But also as his mother – one of the most rewarding parts of my job is seeing him breakthrough and make progress.

He only slept for a very short time. Just long enough for his brain to process whatever it was that had triggered the tsunami and allow him to return to the world that confuses him so much.

He woke up and found himself in my arms and gave me a weak smile. His tiny voice shook as he shared with me his heartbreak.

And right then – my heart broke all over again.

He is being teased: He is being called a “baby” because he claims that his best friend is his teddy bear. He is being called a “Mummy’s boy” because he flew into my arms at school excitedly yesterday and gave me a big kiss and told me that he loves me. And he is being told that he plays silly games and talks funny.

Um yep…

 Socially inappropriate behaviour not in line with his biological age??   Can anyone say “ASD”?

Back to the freakin’ neurotypical teaching drawing board. It’s not fair. It’s just not fair.

Urgh…

Stupid Mask.

 Last night, I received a Facebook message from a friend and as I read it, I became very sad.

My friend is having a really rough time at the moment and it absolutely broke my heart to read her words. I know her situation and also know of the absolute ick that she is subjected to on a daily basis, and it’s really not fair at all.

If I could take the crap away I would do it in a heartbeat. But unfortunately, it’s not that simple.

I don’t walk the same road that she does, I walk on a parallel but far less grueling one. And whilst I could never honestly say: “I know what you mean”, I can empathise and offer a shoulder.

Sometimes our different roads cross over and sometimes they both reach the same dead-end at the same time but mostly, they are very different roads but are both headed for the same ultimate destination.

What we do have in common is that we both have more than 1 child with special needs and like me: she is exhausted. My friend is tired both physically, emotionally and mentally. She is spent and drained and expected to survive with so much more than the average Joe but she does it without complaint.

She asked me in her email how I keep picking myself up? She wanted to know what my secret is? How do I keep going? How do I stay on top of things?

I actually laughed out loud when I read that, but I also cringed. I cringed because I realised that she obviously didn’t know my deep dark secret:

She didn’t know that a lot of the time I barely cope. I don’t even come close to coping, but I have learned to put on the correct mask for the occasion.

You see, once I’d figured out that people don’t handle exhausted Fiona or emotional Fiona or falling on the floor in a heap of uncontrollable tears Fiona, I had to make a choice.

I had to choose whether to reveal my all and risk rejection or only show the happy, go lucky, cheerful, smiling Fiona.

I usually go with the latter because it’s more of a sure thing and I am usually always received much better that way. I’m less confrontational and less needy.

But any sign of me slipping or having a bad day - a lot of people run for the hills. I know that I am simply too hard to handle when I’m like that so I hold no grudges.

And instead I present the coping, altogether woman who people expect and no-one gets hurt.

Right?

Wrong.

*I* get hurt.

My friend gets hurt and many many other mothers get hurt because we feel trapped in our own suffocating worlds.

Ultimately our children also get hurt because they are left with a mother who has no self-worth, no drive and absolutely no will to go on. Feeling like you can’t depend on anyone is the pits. Bottom of a deep well type pits.

Through the years, I’ve learned who I can and can’t reveal my true self to. I now know who can take it and who can’t and I learned the hard way in a lot of cases by revealing all of myself and ending up being stomped upon, back stabbed or avoided like the plague.

I can now read people better, and I can usually tell within the first few minutes of a conversation whether someone wants to know about our life because they really care and are interested in learning or whether they’re just listening to be polite.

If you’re sitting there reading this and smirking, and thinking : ‘She’s kidding herself! She reveals SO MUCH of her family and herself on this blog, how can she say that she doesn’t reveal her true self’ well, you could be forgiven for thinking so.

But no-one’s life can be summed up in a handful of 1,000 word posts each week. It’s only ever going to be snippets and what I choose to reveal

There is always more to anyone than meets the eye.  And like my friend; When I do open up and share the difficult times, all we want is someone to come alongside us and give us a hug and say: “I don’t pretend to know what your life is like. I have absolutely idea how to help you, but I want you to know that I love you and I’m here for you”.

 And I tried to do that for my friend’s last night.

Fortunately I’m in a really great place at the moment: Harley is sleeping well now that he’s sharing Lucas’ room. Ella has made some wonderful friends at school and with Christmas holidays just around the corner, I can almost see the clearing that is respite at my Mum’s house for a few weeks.

The fog isn’t surrounding me right now. The smoke screen has momentarily been lifted from my eyes, which leaves me free to help my friend to navigate her storms.

My friend and I “had” a lot of mutual friends once. We know a lot of the same people and incidentally have both been hurt by the same crowds and have experienced similar rejections.

We both know that we are different. We share the bond of being misunderstood and unfairly judged mothers.

But right now, my friend doesn’t need judgement, she doesn’t need me or anyone else turning up at her house and piling her with well-meaning solutions. And she doesn’t need to be told how she ‘should’ be handling things or criticizing her efforts.

It’s not my or anyone else’s place-because we don’t walk her road. We don’t live her life and we therefore are not supposed to do anything but love her and be there for her.

Period.

True friendship is not about agreeing on everything or sharing the same interests. It is about offering unconditional love and support and being there in the tough times as well as the smooth ones.

I am grateful that I have been blessed with a number of supportive friends and they know who they are, they do it without expecting anything in return and love me as I come. I want to be that friend too.

~~~

The parallels between me choosing to wear my coping mask and my high-functioning child also doing the same has not escaped my attention either.

Harley is now 8 years old. He sees when kids don’t accept him. He was called “spastic” in the playground ** last week and Harley recognizes that he is different.

When he was 3 and 4 and 5 years old he was not so aware. He wouldn’t bother donning a mask and would lose his cool in the classroom or shopping centre whenever it hit him. He does this a lot less frequently nowadays, they are saved up for home.

These days he KNOWS that people look at him and judge him. He KNOWS that his school friends mock him and he knows that he needs to wear his “normal” mask at school.

And as I mentioned – the mask gets tossed aside the minute he steps in the safe haven of home and all hell breaks loose. And usually I swipe the air and grab the metaphorical mask it as it floats back down to earth and whack it on my face so that no-one can see that I’m shutting down because it’s all-too-damn-hard.

Stupid masks.

.

.

** (We deliberated night after night about taking this further but decided to leave it for various reasons…and that’s a whole other post! )

A cup of cold coffee….a short story.

 She sits down at the kitchen table warming her hands by placing them around the mug of freshly brewed piping hot coffee.  It is early but she is already drinking her third cup. She knows that there will be plenty more consumed before the day is over and considers just how many of her problems and concerns are momentarily erased as she silently sips it. And smiles at the very idea of drinking this black heaven all day just to stay in the peace of mind that she is currently in but she knows that it can’t , it won’t last.

It doesn’t.

She looks up moments later when the door to her right creaks and opens slowly.  The door-frame is partially darkened by the small silhouette of her young son standing there dressed only in his socks and underpants. She moves her gaze up towards his face and notices the tear streaked cheeks and the swollen eyes and knows immediately that it is going to be one of those days.

She sighs and puts down the coffee mug and walks over, crouching down in front of the little boy and wraps her arms around his tiny frame. He relaxes a little and sobs quietly into her shoulder.   She mentally puts on her compassion hat and takes off her questioning one. She strokes his hair gently and says nothing, but hugs him firmly rocking him back and forth waiting for the storm to pass.

Eventually the sobs turn to sniffles and she releases him leaning back to see his face. His tears have dried and his mouth is crinkled at the corners and have started to resemble the makings of a small but definite smile.   This is his way of saying thank you. He can’t find the words, he has autism, but she knows, because she loves him.

Finally she exhales.

She may never find out exactly why her son was upset but she’s learned that she will find out if she needs to know. She lives in the moment because it’s all she can manage right now.

Her attention is grabbed by a loud bang followed by a fit of boyish giggles and out of the corner of her eye she spots her youngest son land on the floor in front of his bed on a massive pile of pillows and cushions that she could swear she put away the night before!   She watches as he climbs up onto his window-sill and prepares to launch himself again.  Her instincts kick in and she reaches out and catches him mid-air and places him upright on his feet on the floor and ushers him out to the kitchen so she can make a start on breakfast.

As she rounds the corner in the hallway she glances down into her daughter’s bedroom and sees her sitting on the edge of her bed.

She has her earphones on and her iPod in her hands and is swaying and lip-syncing to the latest pre-teen tune she is listening to and is oblivious to her mother’s presence. She stands there and watches her for a few minutes fighting the flashbacks of her little baby girl standing in her cot with arms outstretched calling “Mama, Mama I’m awake”.

She sighs again and remembers her promise to herself to live in the here and now. The past is passed, make new memories and live in the present.

A shriek comes form the kitchen and she snaps back to reality and rushes down to determine the cause of the commotion. She sees the pile of cereal on the floor amidst the broken crockery and is thankful that the milk hadn’t yet been poured.  With one hands she soothes her frightened child and with the other she reaches for the dustpan and sweeps up the carnage.

New bowls are filled and carried to the table to the hungry, impatient children.

The phone rings and it’s her husband who is away on business. He is ringing to tell her that he will be home early tonight and that he has missed them all and can’t wait to see them, she replies that she loves him too and has also missed him but explains that she has no time to talk at that moment and promises to call him later.

She adds that task to her already over crammed mental diary.

As she hangs up the phone the doorbell chimes and she wonders who on earth would be calling at this hour?   She signs for the package and places it on the counter and finishes preparing school lunches.

By now the children have gotten down from the table and started to play with their toys. The interruptions distracted them and they didn’t know how to get back into their routines. She gently guides them back to the breakfast table and spoon-feeds both of her sons to ensure that they actually eat. She knows that 8 and 5-year-old should be able to do this themselves but she takes the path of least resistance because she knows the drama that follows if she puts too much pressure on them before school. She is aware that their routines were messed with and adjusts things accordingly.

The boys finish eating and she steers them towards the clothes that were ironed the night before and laid out on the ends of their beds and helps them to get dressed.

She calls down the hallway to her daughter telling her to hurry up and get into the shower because time is ticking. She gathers up the breakfast dishes and washes them in the sink and notices that her cup of coffee is now stone cold. She pours it down the drain and sighs.

She barely remembers the days when she only had herself to get ready. How she was able to arise only 20 minutes before she needed to leave and managed to shower, apply make up and eat breakfast in record time. But she knows those days are long gone and this is her current chapter.

After what seems hours, she gathers the children and leads them to the front door. She kisses her coffee machine affectionately on the way past and promises him that she will return soon. He children giggle because they’ve seen her do this many times before.

She loads children, bags, books and lunch boxes into the car and reverses down the driveway with a big smile plastered on her face.

She is happy, she is thankful but she’s exhausted.

And it’s still only 8am.

No Regrets

There is a well-known quote (that I am unable to attribute to anyone because I couldn’t find the original source) that says: “There are no regrets in life, just lessons.”

And that is so true for me.

I had already half written this post in my head when I discussed the general gist of it with a friend this morning over coffee and told her that I was thinking of calling it “Regrets”. I explained how I intended to finish the post on a high note but even so, she suggested calling it “No regrets” and I think she was spot on the money with that!

So I present you with “No Regrets”.

***

Earlier on this week I was sitting down in our local coffee shop with Lucas (as I do every Wednesday before going grocery shopping) and as I watched him slurp his Babychino and nibble on his little marshmallow froggy tart, it really hit me that WOW….this is almost the end!

I have known for months that come the beginning of next year, I will have all three children in full-time school and my role as a stay at-home-Mum will come to an end, but it was always ‘later’ so I haven’t really given it too much thought.

I’m still unsure as to exactly why this hit me so hard that day but I wasn’t prepared for it and I came home that afternoon and just cried and cried and cried. I tried really hard not to but I started thinking about lost opportunities and all of the things that I always wanted to do with the kids but never did.

I started beating myself up for all the times I had sat in that very coffee shop and played on my phone instead of engaging my son. And all the times that I have left him to self entertain in front of the TV while I do housework and all the times I’d driven past the local park because I was in too much of a hurry to stop and spend time pushing him on the swings.

I remembered a phrase that I was told once when Ella was still a baby: “Your children won’t remember if your floors were always swept but they WILL remember if you never had time for them”

Wow. Talk about a guilt trip.

My thoughts then travelled to what I consider to be a really dangerous place: Harley’s baby years.

During one of my very dark times when Harley was very little, and I was massively sleep deprived (and mostly incoherent), I had a series of phone calls with one of my Mum’s close friends. (Who is the mother of a now-teenaged aspie son). And she recognised a lot of my struggles with Harley and made the suggestion that I take a LOT of photos of him while he was still a baby because I would probably need them in years to come to trigger my memory.

I have absolutely no recollection of this photo of me holding baby Harley ever being taken.

I didn’t fully understand why at the time but I did it anyway and I am SO pleased that I did because even now – 8 years later….I still can’t remember a lot of his baby years and I can look at photos and not remember them being taken EVEN IF I’M IN THEM!!

It’s a brain self-protection thing: I know there’s a fancy technical name for it and I don’t what that is, but it is a very real phenomenon and I’m living it.
I was so overloaded and in such a bad mental place that I literally blocked out several months of his life.

And the guilt over this started plaguing me this week.

Then my mind started to wander to thoughts of my Dad and I started wishing that I had told him that I loved him more than I did.

Don’t get me wrong: When he died he passed knowing absolutely 100% that I loved him but that’s not what I mean. I’m referring to the many many years that I wished I’d done more. That I’d ‘showed’ him more.

I wished I’d travelled up to see my parents more often than I did. I wished that I had allowed my own children to spend more time with my Dad. I see so much of him in Harley in particular: The way he sits on his haunches when he’s concentrating, the way that he offers hugs all the time and the way that he giggles when he’s being mischievous.
But I mostly wished that I had started blogging before Dad went away because he always wanted me to write. He knew that it is my first love and that it brings me so much peace and clarity. I wanted to make him proud and feel like he died before he saw me at my happiest.

But mostly, I regretted that I didn’t give my kids my all.

I’ve lost count of the times that I’ve called out: “In a minute” when one of them calls out “Mummy…..I neeeeeeed you!” because I’d placed a higher importance on whatever it was that I was engrossed in at the time than listening to my children.

Or the times that I have yelled at them for leaving their toys on the floor when I really should’ve gotten down and played there with them ignoring the fact that my rug wasn’t perfectly brushed and straight.

Or how about the number of times that I have confiscated play-dough, bubble mixture and paints because they’re ‘too messy’ and I don’t like cleaning up after them!

Ugh….What a hellish mother I have been at times!

But as I worked through the emotions attached to my ridiculously random and self-depreciating thought patterns, God helped me realise that by choosing to allow myself to live in my past failures, I wasn’t leaving any room for growth or improvement.

I started to force myself to think about the great and wonderful things that I DO have.

I have 3 whole months with Lucas where I can fill my days playing trains on the floor, or finger painting or (cringe) blowing bubbles and laughing as they pop in the breeze!
I am going to deliberately stop at parks and skip down the paths holding my little boy’s hand. I am determined to take all of the kids out for ice-cream after school once a week and I am going to tell my kids that they make me so happy every day for the rest of their lives.

Sure, I’ve stuffed up pretty majorly in the past but that’s what’s so great about the past….it’s passed!

I am going to make the choice to live in the here and now and not look back. It’s time to create new memories and to enjoy the many blessings that I do have.

But most of all: I’m going to learn from my mistakes because it says at the very top of this post: “There are no regrets in life, just lessons.”

Whose with me?

Philippians 3:13

… But one thing I do: Forgetting what is behind and straining toward what is ahead…