Spring is on it's way

I’ve been observing Lucas lately and it’s interested me to notice that he is having a lot of the same behaviour issues that Harley had when he was 3 going on 4.

The screaming when it’s bedtime, the tantrums when his Nintendo (or any important toy that he wants)  is taken off him, the refusal to eat his food, the word “no” being well and truly overused.

I’ve always said that Lucas has been a relatively “easy” child and that Harley has been a handful from the get-go.

But, they appear to have swapped temperaments lately, so now I’m asking myself:

“What’s regular 4-year-old behaviour (pushing boundaries, being difficult and defiant, exercising strong will etc) and what is age appropriate for a child with aspergers?”

And I’m also wondering just how much of Lucas’ behaviour  is “copied ” from what he’s witnessed in Harley his entire life?  After all, most of the behaviour he’s ever seen of Harley is meltdown after fit after more fits.

He’s probably also seen me give in to him on far too many occasions just because I don’t have the strength to keep fighting and just want peace at any cost!

I sense that Lucas is getting frustrated because he is having difficulty making himself understood and wonder if that is also contributing to his mischievous behaviour of late?

Although, he did say a full sentence to me only yesterday:

I handed him a biscuit, and he cocked his little head on the side and asked me ” Is this biscuit gluten-free Mum?”

I laughed and hugged him -  I was SO proud! (and yes it was!)

I have had a pretty good day today but it got even better when I  checked my inbox late this afternoon and I opened a very special e-mail that made my heart  leap!

It was from my mum’s best friend (who is also the mother of MY best friend) -work that one out, it’s not as hard as it seems) and she encouraged me beyond belief!

She was always like a second mum to me and my sister growing up , and my mum was to her 3 children as well.

She had a son who was 12 months younger than me who had a heart condition (amongst many other things) and sadly he passed away 12 years ago this month.

She went on to write that she understood the lonely feeling that mother’s of “special” children can feel at times and the hurt you feel as a mum when your child is left out of  “the circle”  both by other children and their parents.

I was shocked, surprised and also quite saddened to read this.

You see…….we grew up with *Alexander and I always knew that he had health issues but I can never once remember us seeing *Alexander as anything but simply “*Alexander”. He was always just “one of us”.

If ever he was excluded from any of our games it was because he was the only boy amongst the 4 of us girls and it was because he wasn’t keen on the girly thing we were playing! ( poor kid!)

But he did everything that the rest of us kids did and had the most remarkable sense of humour!

So when I read about the similar heartaches that  * Margaret experienced, I was able to relate to it in a way that I never would have, had I not had a “different’ child myself.

In fact I sat here and cried when I read her e-mail as I understood for the first time that the beautiful happy lady that we had grown up with had nursed the anguish  of witnessing her child be noticably “different”.

Though I feel guilty even saying that as I know that my struggles are far less than what she had to deal with. And my challenges are not the same as hers.

*Margaret wrote something to me that was so profound and a PERFECT description for my life thus far  (I absolutely HAVE to share it)

Spring flowers at "Floriade" Canberra Australia. Image borrowed from http://www.australiatravelonline.net/other-categories/festivals/floriade-2009/530/

‘It’s in the winter that the trees shed their leaves, and look bare and even unattractive.  However, under the ground the roots are drawing nutrients, growing bit by bit, and becoming more secure and able to hold the following spring’s “leafed tree” more securely afterwards.  I remember telling myself MANY times: “In the winter, the roots go down.” Spring is on its way!!!

And so it is. Metaphorically and literally.

* Not their real names. Changed to protect their privacy.

When it all goes well..

Yesterday the children had “Mission’s Day” at school to raise money for the annual trip to China that some of the senior school students and some teachers make to support an orphanage there.

The children were allowed to wear mufti clothes and do to this it was a gold coin donation. (Australia has a gold coin for $1 and $2 instead of notes).

The kids only had 2 or 3 quick lessons in the morning before an assembly was called and then the festivities began around 12.

Then there were stalls set up all around middle school selling everything from cupcakes and lollies (donated by parents) to key chains and jewellery.

They had face painting, coloured hairspray and a sausage sizzle.

I took along some lamingtons and added them to the tables and tables of delicacies.

Lamington (image from Wikipedia)

It was all very well to have these amazing cakes, lollies (candy) and sausage sizzles, but I had to go and spend an extra $30 at the supermarket to buy my own gluten-free lamingtons, cupcakes and meat pies so that myself and the children could actually eat, and I know that other gluten-free families had to do the same.

Meat Pie (image from Wikipedia)

Oh well…….it’s all for the greater good

(Gosh- it has been quite an introduction to Aussie cuisine this morning hasn’t it!)

Anyway, there were a group of year 12 students running a car wash (yes, in the middle of winter?) and another group had formed a “band’ (I use this term loosely) that were playing a whole lotta noise WAY too loud , it was impossible to hold a normal conversation in the middle school area. (Gosh, I’m sounding old!)

I have now set the scene to paint the picture for how an autistic child with sensitivities to noise, crowds and action and an absolute NEED for routine and structure would cope.

And here’s the amazing bit………..he did REALLY well!

I was prepared to have to whisk him away at short notice if needed but no such occasion arose!

Sure - he walked around with his headphones on, and he had me there holding his hand when we did venture into the noisy part to get his hair sprayed and we had a picnic rug set up in the sun on the hill WELL away from the noise (with another aspie family) that he could escape back to, but still. I am SO proud of him!

Lucas however being the type of child that thrives on noise, crowds and action was a little overwhelmed by all the people towering over him and I caught him covering his ears a couple of times.

And we had to send a search party out for him twice because he did his usual trick of absconding, but nevertheless all was well.

But then it came time to leave.

I had Ella disappear in one direction, Lucas another and Harley stressing because he couldn’t find Lucas.

Once I had managed to get all 3 of them in the one place – we started walking out to the car. And that’s when the barriers started coming down.

Thankfully – I sensed how close to the edge the boys were in enough time to do something about it so I let them have a run around on the oval out the front of the school for about 45 minutes and they were able to get it all out of their systems.

And so ends another successful “out of routine” day at school. And I am smiling and in one piece emotionally and mentally and that’s GOT to be a good thing

Lucas' hair

Ella's hair

Spot the gluten

I was looking through some photos recently and something stuck out at me like a sore thumb.

I’d never realised before just how glazed, vague and “out of it” Harley (in particular) used to look when his diet contained gluten.

And now it’s amazing to me to see the difference in him since going completely GF/CF.

Compare these “before” and “after ” pics and see if anyone else notices…….

BEFORE......Look at his eyes.

AFTER....Bright sparkly and alert one again.

It's the end of the world….(as Harley knows it)

This afternoon after collecting the kids from school, everything went smoothly. I even tried my luck and ducked into the supermarket quickly to grab a few things for dinner and the boys handled it really well, until Harley hit his knee on a trolley and started screaming the place down.

Harley and his side kick Bo.

I picked him up to comfort him and he kept asking for Bo. (His favourite teddy).

So we paid for the groceries and headed back to the car to get Bo. He goes to school with him and stays in his backpack for moments like these.

Only…….Bo wasn’t in there.

Harley remembered that he had left him sitting on his chair in the classroom and the hysterics started again right there in the car park.

He threw himself face down on the concrete and started kicking the car tyre while moaning that he wanted Bo.

It went something like this:

Uuueeeerrrrrrr……..”I want Bo” ………kick the tyre, punch the ground, eeeeeeeerrruuuuuuuh…….”I want Bo”……….etc etc etc.

Ella walked way from embarrassment and strayed WAY too far from where I could see her and I had to leave Harley mid fit and walk around the other side of the car so I could strap Lucas into his car seat so I could have both hands free to manage Harley.

I settled Lucas and walked over to Harley and  picked him up and tried to comfort him again but all he wanted was Bo.

He asked me to go to school and get him “You go get Mum”…….and I had to explain that because it was late, the school gates would be locked and there was no way of looking for Bo until tomorrow morning.

I  eventually brought Harley back down again by sitting him on the boot of the car and cuddling him close . I remembered that I had a velvet shawl in my boot that I had loaned someone recently and they had returned it today , so I wrapped it tightly around Harley’s shoulders and he stroked it and rubbed it on his face until we got home.

As soon as we arrived home, Harley immediately went to his bedroom and searched through his vast collection of teddy’s and chose another one for tonight.

But then………he took it in the bath with him because he “didn’t want to bath alone”  !!! AAarrrggghghh!!!!

( Substitute teddy is currently in the tumble dryer ) and Harley has gone back to sitting down stroking my shawl.

I don’t know how I feel about all of this.

It all seems like a big step backwards to me. It was great that he came down quickly and was able to tell me what the problem was, however, the fact that he is SO reliant on his teddy bear bothers me a bit.

And I’m not exactly sure why?

Silent Sunday

I have had a really great day.

No, actually, I’ve had a great weekend!

Being unable to talk has forced me into a silence that doesn’t come naturally and it has caused me to view things a little differently as I ‘listen” to what’s really going on around me.

I sat on Ella’s bed with her as she strummed her guitar practising her chords , I did several different jigsaw puzzles with Lucas and I helped Harley build a “super dump truck” with his Lego. And I did all of this without very much talking at all.

It was almost like I developed some sort of secret language with them all where there was complete understanding even without using words.

We all made up special signals and there was a lot of pointing going on and my boys were both given a break from my relentless cries of “use your words” which I say to them far too often.

We missed church AGAIN which I was sad about since it’s been so long since we have managed to go as a family but circumstances and sickness have plagued us a lot lately.

After lunch, Mr Patient decided to drive over to his mum’s to help her with a few jobs around her house so he took Harley and Lucas with him for the afternoon.

Ella and I went for a long walk together and when we returned home again, she helped to prepare and cook dinner.

I’m still not sure how she managed to cut her hand with a vegetable peeler- and I can’t figure out how she got SO MANY potato peelings on the floor NEXT to the bin and hardly any IN it……but it was awesome to have her be my little sidekick for the afternoon.

She chatted her little monologues to me (like mother like daughter) while I nodded and smiled, she told me all about the book that she is reading at the moment, and she asked me if I could do her hair in two braids for her school photos tomorrow.

She also told me that she loved me and that I was the BEST mother in the whole wide world! (I didn’t argue).

When the boys came home after a few hours, they excitedly bound into the house bringing all the noise and commotion with them that I’ve become accustomed to and as I watched them all talking at each other 100 miles an hour, I realised a couple of very important things.

Firstly, I realised that today was so “un-autistic” (if that’s even a word) that we really were just like any other family.  There were no meltdowns, no stress and no anxiety.

We were just your average Australian family enjoying each other and taking each moment as they came.

I also realised that if I just sit back,pay attention and SHUT-UP, I discover so many beautiful things about my family that I may have never have seen because they are indistinguishable amongst all the rules, regulations and rubbish that I sometimes carry on with.

It would do me the world of good to lecture less and listen more.

Progress- my dream.

I love Saturdays.

I especially loved this Saturday.

I have had Mr Patient home for the last 4 days driving me crazy, keeping me company as he has been struck down by the dreaded Mr Influenza.

Looking more like a human and less like a troll!

So imagine my surprise this morning when he sent me off to get my hair, nails AND eyebrows done!

Either he’s feeling guilty for completely draining me or he is sick of me looking like something out of “where the wild things are” !

Either way- it was great to get a break from the children and their often trying and obsessive ways.

At the moment I have a bad case of laryngitis and I literally have NO voice. Doctor’s orders are to avoid talking wherever possible until my voice recovers and I’m finding that really tough!

The running joke here is that I lost my voice because I scream at the kids too much but that simply CAN’T be true !

And when you’re someone like me who is very much a people person and LOVES conversing with friends and enjoys meeting new people – this is VERY hard!

Mr Patient is loving the silence but the downside was : I was unable to have any sort of conversation with the hairdresser

And I had to leave my beloved mobile phone at home so Mr Patient could upload some new software onto it so I couldn’t even surf the net or send e-mails while I was there ….I only had my MIND ….and that can sometimes be a frightening thing!

I used the most of the time, writing in a notepad about anything that came to mind and I was quite amazed at the places that I allowed my brain to go!
I kept thinking about one thing more than any other though. And that topic was ” Progress”.

Yes, definitely the wonderful progress that my children have made since they started early intervention, but also about the amazing progress that the medical profession has also made in the last few years since aspergers has become a little better understood. (Though I still think they have a huge way to go).

I mean, back in the 1980’s when I grew up, there was “mentally retarded” at one end of what is now known as the “autistic spectrum” and at the other end were the children who were commonly described as “geeky”, “naughty”, “disruptive”, “shy “, “introverted”, “awkward” or “incredibly intelligent” –  Because there really was no knowledge of why these children were different.

I feel very fortunate as a parent that my children are growing up in a time where there is a LOT of knowledge out there on ASDs and that there are a lot more resources and information out there even since I went to school.

I have had discussions with adults who have aspergers that weren’t diagnosed until they reached adulthood and it saddens me to hear of the massive struggles that they faced in their formative and schooling years both from family, friends, the medical profession and teachers.

However……(and this is where my thought patterns go off on a tangent), as well as being thankful that we definitely have MORE information and tolerance now – I also feel that our children are somewhat of a guinea pig generation because so many new methods, interventions, therapies, ideas and medications have been tried and tested and developed during the past 20 or so years.

I sincerely hope that as researchers delve more and more into the complexity of the aspergers mind- that they are able to help us to understand even better ways still to help these children when they grow up and in 10-30 years, have families of their own.

Because that is a whole new ball game.

Of course, I hope that the genetic link to autism is NOT a factor when it comes to my own grandchildren, but I still have to be real and realise that there is a very strong possibility that I may be blessed with autistic grandchildren as well.
Thankfully, I know that I will have so much more help at my fingertips than the generations that went before me did, and that can only be a good thing right? Any information has got to be better than none?

(Although on a side note : sometimes I feel that the more we learn, the more pressure we feel to be keeping up with the latest advances etc)

However– I am also glad that we are advancing and getting closer to a society that views autism as a “difference” not a disability.

I wonder…….will there be a day in the future where ASDs (since the diagnostic rate is climbing all the time) are recognised as so much a part of everyday life that ALL mainstream schools have gotten on board and include lesson formats that cater to all type of brain wirings and are not just geared towards teaching the ‘general majority”.

Our children will no longer be the  ”different” ones, they will be like so many of the other children there that they barely even stand out at all.

Imagine that…….no more standing on soap boxes being an advocate for our misunderstood children, no more writing letters, organising interventions or training and re-training teachers and support staff on your child’s particular needs.

There won’t be the need for safe zones for our kids because tolerance and understanding will be so woven into the makeup of all children that the triggers for our kids will be nipped in the bud immediately.

I know, I know……wake up Fi.

It IS a long shot  I agree.

But nowadays, I’m forever being asked why I think that there is a higher rate of children diagnosed with ASDs and why there didn’t used to be so many cases back in the day, and my personal opinion is that they have always been a lot of individuals with ASDs but they were largely undiagnosed, AND (insert the dramatic music for the upcoming controversial statement) a lot,

No.

A LOT of the extra cases these days  (I believe) are due to both environmental factors AND vaccination rates that weren’t a factor 20 years ago but I’m not diving into the murky depths of controversy that those theories lie in just yet…….maybe another day when I’m feeling more opinionated and less doughy!

My hopes for the future may seem bizarre, unreachable and overly naive but anythings possible when you choose to see the world through rose coloured glasses right?……. Right?

Written notice.

Dear Mr Influenza,

Consider this your written notice.

You are not welcome in my house anymore.

Just because it’s winter, that is not an open invitation to just move in un-announced and completely take over!

You have turned my husband into a whiney sulky mope. I want my real husband back.

Your aches and pains, fevers and throat germs have been here long enough, it’s time to move on.

Please do not think that it’s ok to simply leave Mr Patient and then  move onto my children because I’m telling you right now- I won’t have a bar of it. And you DO NOT want to see me cranky!

When I say get out, I mean : GET OUT – COMPLETELY!

I simply cannot make another bowl of chicken soup or pour another glass of lemonade. My fingers no longer want to pick up dirty tissues off the bedroom floor and I’m tired of buying panadol.

I’m unable to continue this back and forth banter that you’ve had with me and I declare that you will NOT get me to succumb to your dirty , stinking, horrible germs either.

I am not going to allow you to mooch of this family for even one more day.

Please ensure that when you leave, you return my husband’s will to go on, his helpful attitude , his kindness and my patience.

And don’t think that it’s ok to just stuff my sanity in your backpack on your way out and hope that I don’t notice.

You have stolen enough from us and we want it ALL back. NOW!

Believe me when I say that there will be a restraining order slapped on you if you even so much as come within 100 metres of this house.

There will be a security guard who answers to the name of JESUS standing by the front door with his arms folded bouncer style and believe me- he doesn’t want you here either!

So off you go. I’m closing my eyes and counting to ten. If you’re still here when I open them, I’m calling in my bouncer.

Don’t let the door hit you in the butt on your way out.

Fiona

Playing Together Aspie Style!

This is a photo taken of my 3 children and my friend’s 2 children -all who have aspergers syndrome- playing together in the dirt after school.

We both laugh because they do this kind of thing ALL the time.

They do not actually interact with each other at all. They don’t  know how!

They just simply play “beside” each other!

Ah, gorgeous!

 

Counting dominoes

I’ve had this post half written and sitting  in my drafts folder since Grandparents Day at school a couple of weeks ago and forgot to publish it!

These are photos of Lucas while he was playing in Harley’s class. There was a whole range of activities for the kids to do ranging from constructing Lego to solving simple maths problems.

I did notice at the time that he was unusually engrossed in the dominoes more than any of the other games and activities in the classroom and I thought it was cute so I let him be.

 But what’s amusing me now as I look through the whole series of them is watching “how” he plays.

I remember him saying something to me along the lines of  ”Mummy, annals no sum.” 

And I probably replied with “Hmm, yes dear that’s nice” or something equally as benign! 

However……..I’m pretty sure that now I know exactly what he was saying.

I think he was saying : “Mummy, the animals are not the same!”

Because the dominoes had animals printed on them and he didn’t like that they were all different, he turned them all over so they were the same!  And then…..he started lining them up and counting them.

I think he must have counted them  20 times over and over and over again.

So gorgeous but Oh So Aspie!

Yep…..that’s my boy!

How to recognise early signs of Autism in your child

I am aware that all children develop differently and that not all children with autism have the same noticeable signs but I am posting this as it explains both of my boys and their baby years almost PERFECTLY!

It's what people "don't" see that causes most of my stress!

Well…..Today, Harley has a school excursion.

The permission slip that came home last week had in big bold print :

Dear Parents. Please note: BUS LEAVES AT 8:15 SHARP!

PLEASE MAKE SURE THAT YOU ARE THERE BETWEEN 8 and 8:15 THANK YOU!

(school usually begins at 8:30 so it’s not too much earlier).

And so it was.

Last night, we talked to Harley about the excursion as we had been doing all week to prepare him for the “change” in routine.

He has asked a gazillion questions since and we were pretty sure that we had everything covered.

We put him to bed last night at 7:30pm as usual and went back out into the living room to watch a bit of TV and wind down from the day.

Not even 2 minutes later- Harley appears clutching Bo. (His teddy).

He informs us that he can’t sleep so I walk him back to his room, tuck him back in and tell him read for a little while until he is tired. (Even though Mr Patient and I have already read him 2 books each).

10 minutes later he comes back out to tell us that he’s finished reading and can’t stop thinking about the excursion tomorrow.

Mr Patient walks him back and tells him to dream about what he think they may play on the bus trip going there and prays a “Dear God, please help Harley to fall asleep” prayer.

And he heads back out to the lounge.

Before Mr Patient had even sat down again- Harley reappears for the third time.

This appearing every 20-30 minutes continued through the night for the next TEN hours. And that is NO exaggeration.

To say that this child has sleeping issues is a vast understatement!

By about the 4am visit (where we were ready to lock him in the garage) and after we had resettled Lucas THREE times- we told him that if he didn’t go to sleep , he would have to go and sit in the principal’s office all day and would miss out on the excursion altogether.

How many of you can guess what happened next?

Yup. that’s right. HYSTERICS!!!!!

We had screaming, crying, kicking, hitting, thrashing, flapping, jumping, head banging- THE WORKS!

Just what every parent wants to deal with at FOUR O’CLOCK IN THE MORNING!

Roll around 7 am and we drag him out of bed after having only had a couple of 10-15 minutes snoozes and he sits at the breakfast table rubbing his eyes and complaining that they were itchy.

Ah…..duh….that’s because YOUR’E FREAKIN’ TIRED MATE!!!!!!

He looks at me with his gorgeous big brown eyes and says: “Mum, I need you to be sorry to me“

I sighed and then apologised (grudgingly)  and asked him why he wouldn’t sleep last night.

His answer surprised me but at the same time I felt like a complete idiot for not working this one out myself.

“I didn’t want to be late and  miss the bus Mum.”

We arrived at school in plenty of time. 8:05 to be exact. And Harley climbed out of the car with Bo under his arm.

I suggested that he leave Bo in the car so he wouldn’t get lost or dirty. Cue the meltdown.

But……the little “cherub” decided that he would climb back into the car for this fit so no-one could see it and therefore make mummy into a liar if she dared to tell anyone about it.

He finished his little hissy in record time and then walked over as happy as Larry and lined up with the rest of the children smiling, laughing and comparing lunches so that no-one would believe that there was anything unusual at all about this morning for him or me.

AAAAHHHHHHHHH!!!!!!!!!!!

Can’t WAIT to see how he is this afternoon. (Yes, that’s laced with sarcasm!)

And now that it’s off my chest……I’m fine

Oh….and Tuesday 13th July is his appointment with the paediatrician.

I’m gonna get that damn Melatonin no matter WHAT!

The BEST Teacher.

My mum rang me this morning to ask me if Lucas was feeling any better.

I giggled because she actually said “Lucas” which is his pseudonym name not his REAL one!

Love you mum!

Anyway, onto the blog:

This afternoon as I waited for Harley out the front of his classroom, his teacher caught my eye and motioned for me to come over.

I pointed to my chest and mouthed “me” hoping that she meant someone else because teachers generally don’t ask to see you unless there is a problem.

*sigh*, Yes – she meant me.

I walked over once all the children had cleared the area and she said smiling ” How are you Mrs______.”

Oh great I thought. She’s buttering me up……what on earth has Harley DONE!

“Great – but you’re making me nervous……” I answered.

She realised my trepidation and reached over and put her hand on my arm.

“I just wanted to let you know that Harley is really settled and we are loving having him in this class. In fact, we had Mrs S. (his aide) in the classroom today and she cannot believe the change in him !”

I was STOKED to hear this.

“Fantastic!” (I almost yelled). “For a minute there I didn’t know what to expect!”

She smiled again.

Then she continued.

“The (insert some important job title that I can’t remember here) was in the classroom last week and was really surprised to hear that there were 2 children on the spectrum in this class as she was unable to pick them.”

“Wow” I replied. (Impressed that she had said ‘On the spectrum’ not just ‘with special needs’).

“Yeah, and we haven’t had any behaviour issues of note and I was just wondering if he’s calmer at home too?”.

You could have knocked me down with a feather at this point!

“Actually, no, he’s been incredible lately” I replied. ” He is so calm and peaceful since moving into your class and has had no tension to “let out” at home because he is coping really well here!”

She smiled again and I wanted to give her a massive hug – I thanked her for being THE MOST AMAZING TEACHER EVER!

A trip to the Doctor

This morning after dropping the kids at school. Lucas and I headed off to the Doctor because I needed a new prescription for my asthma medication.

So we sat waiting for almost 2 hours in a waiting room full of sick people for a 2 minute conversation and a piece of paper.

Honestly – I find this ridiculous that we have to waste all this time for something so simple. Meanwhile , the people that actually were sick had to wait even longer. Doesn’t make sense.

Anyway – whingefest over!

While we waited, I entertained myself by people watching (as you do) and it was really the only thing I could do since the most recent magazine available had  Heath Ledger on the cover with the words : “Tragedy takes Heath too soon” so it was a little out of date!

I sat there looking around at the crowd that was also waiting and tried really hard not to notice the gorgeous 2 yr old girl chatting in full sentences with her mother – or the 3 yr old boy “actually” playing with his little sister.

The there was a young boy who I assume was about 8 or 9 who was obviously too unwell for school, sitting next to his father and carried on a conversation with him whilst eye contacting and body and facial reading AND reacting appropriately with his Dad the entire time.

It was also hard to not see the other people waiting in the surgery oohing and aahing over the cute little girl’s antics, laughing as the siblings playfully teased each other and the disapproving looks I was getting as my little Lucas sat there transfixed by his Nintendo not aware of anything else that was in the room.

I’m sure that people wondered why a mother would allow such anti-social behaviour from an almost 4 yr old.

And a couple of times I asked Lucas to sit properly  - “no ‘W’ sitting” I gently told him, and I got strange and questioning glances.

And Lucas would stop playing every few minutes to stroke the ribbon on his “puppy” that is now a tattered knot and then go straight back to the game.

But the entire time I was determined.

I was determined to let my little boy just ‘be’.

I was determined to appear unfazed by other people’s stares.

And I was also determined that I wasn’t going to offer any “explanations” as to why he was so noticeably different to the other children waiting with their parents.

Because frankly. It was no-one else’s business! I just stared back until people became uncomfortable and looked away.

Besides, who of them would truly understand that the Nintendo was what made it possible for us to even sit for 2 long boring hours anyway!

I’m proud of my little Lucas. He did really well today!

A really great heart warming read.

This post from the  What We Need blog literally had me in tears. I nodded the entire way through it.

I have the author Darcy’s permission to share it here.

It’s well worth the read.  It’s called:  The Other Mother.

If it touches you like it touched me: please leave her a comment and let her know.

Cheers

Fi

Love thy sibling.

Today was ……”interesting” to say the least!

Image from "Blog and Opinion"

And not just because autism lives here.

And it had nothing to do with sensory needs or any of the little quirks that come hand in hand with ASDs.

No, – this was purely and simply a case of sibling rivalry. Something that EVERY family with more than one child deals with at one point or another!

I had all 3 children home “sick” today.

Ella and Lucas actually were sick, and Harley coughed a couple of times this morning, so I told him he could stay home too.

Truth be known….Harley would have been fine to go to school but I didn’t much like the idea of fighting with him to go when he knew that he was the only one that had to. So I took the path of least resistance.

And the kids were absolutely rotten to the core all day!

I put on my referee hat more times than I could count and by lunch time – I decided that dividing and conquering was the only thing that would work so I sent them each to their own rooms to play.

I could hear giggling and went to investigate and found the boys each quietly opening their doors and meeting in the hallway then tiptoeing up to Ella’s room , tapping on her door and then running like the clappers before she saw them.

I laughed and decided to let this little game run it’s course as I was sure they would be sick of it soon.

I went up to our bedroom and started making the bed when I heard a commotion in the kitchen. I ran up to check it out and Harley started talking 100 miles an hour and told me that Ella had threatened him and Lucas with a sharp knife from the knife block and told them that if they didn’t leave her alone, she would have to make them.

Her story was that she only came into the kitchen to get a tissue (plausible – especially since the tissue box is right next to the knife block – and she HAS got a runny nose) and that Harley had grabbed a knife and she took it off him before he could hurt himself. (Knowing my children like I do- this sounds like the most likely story)

I simply didn’t know WHAT to make of this , because it would be unusual for Harley to make up a story with this much detail and I am puzzled why he would want her to get in that much trouble anyway, since  it was he and Lucas that had provoked her in the first place?

So I am still at a loss as to what REALLY happened. My guess is that the true story lies somewhere in between.

But  the whole thing really really shook me!

I know that when just Ella and Harley play together- all is well.

Or when Harley and Lucas play together, there are no issues either.

And thirdly- when Ella and Lucas are together, I still don’t experience many dramas.

It’s ONLY ever when all 3 of them are together??

Is this NORMAL for sibling rivalry?  Is this an example of  ”three’s a crowd”?

I never had a brother, only one sister so this is all new to me…

Are boys really THAT mean to girls?

Thoughts please……

A whole lotta Fiona's gush and dribble!

I often find comfort in reading other blogs by other families (mostly written by the mothers) of children with an ASD.

And I regularly read every single blog that is on my blog roll. They are really worth checking out.

I feel like I want to comment on every single post that these women make because I am so awe struck by the honesty and openness of their words – and their ideas, methods and results are remarkable.

But I don’t- I don’t want to be known as the “crazy blog stalker lady!” lol

But seriously- These women inspire and motivate me to keep pushing on and to be kinder to myself and I am constantly learning and discovering different and better ways to approach my children and the situations that we face as a family.

I am often amazed at the sheer strength that these women exude and the way that they handle the circumstances that arise in their own families just astounds me.

It makes me remember that I CAN keep going and that there’s nothing that I can’t get through. Especially with God by my side

Often I read these blogs and realise that I am not alone- we are just all spread out all over the world doing the AS dance in different, cultures, countries and seasons.

And I LOVE the internet. It has connected me to so many amazing people with amazing children and I appreciate the window into their lives that they have so generously opened for us.

I suppose that entering this “mothers club” is just what I needed. I have had the most amazing support from you all and the most helpful advice I could imagine!

I have made an appointment with the paediatrician to get Harley some Melatonin. I am getting Ella to the same Doc to get some answers and I have found a centre for gymnastics for Lucas. So see- I DO listen

Have a great week everyone

Fi

Music to his ears.

Lately, I’ve been spending quite a lot of time playing my piano and mucking around on Ella’s guitar.

I’d forgotten just how therapeutic music always was for me.

And I’ve discovered that the gentle strumming of the guitar and the melodic rhythm of the piano actually has a calming effect on both of the boys. Harley in particular.

I think it’s because it is not an overpowering sound, there is only “1″ sound to contend with and not a whole group of sounds that he has to separate in his head.

He has listened to some classical music before and while he liked it- he told me that he found it really hard to listen to, because his brain kept trying to work out how many instruments were actually playing at once and that made it hard to just listen and enjoy the music!

This is something that had never occurred to me!

I remember back in high school when I was studying music as one of my elective subjects, often we had to do an exercise where we would have to listen to a piece of music and write down how many different instruments were in the piece and what they were.

I thought it was a stupid exercise personally-but I’ve now discovered through Harley, that his amazing AS mind gets overwhelmed by all of these different sounds and he is unable to just sit and relax and enjoy the music!

I found this absolutely fascinating stuff!

I have long wrestled with the idea of teaching him piano or guitar but I am worried that his perfectionism would get in the way and frustrate him when it didn’t come easily.

He loves to just sit beside me and listen and occasionally play the odd note for me so I think for now, I will just take it slowly and wait until he’s a little older to go down that track.

We’ll suck it and see what the future brings

Mr Patient bought me this gorgeous piano as a wedding present, Ahh....

Here we go AGAIN!

It’s midnight,

I’m tired…

Mr Patient is also tired.

Ella and Lucas are in bed with high fevers sleeping.

Like they should be.

But who was up wandering around the house whining that he can’t sleep?

Who is standing beside me right now as I type complaining that his room is too noisy/his light is too dim and his blanket is too scratchy?

Yep. It’s Harley.

AGAIN!

Grrrrr, this is one part of aspergers that I am seriously NOT a fan of.

OK –  I get that his little mind is incredibly active ,and I understand that he is not able to shut his thoughts off in the same way that I can, and I am very aware that this is quite common in children with ASD’s – but seriously, my NT brain is OVER IT!

I WANT TO SLEEP!

I NEED to sleep.

Without sleep – I am NOT a very nice mummy!

So, here I go – marching him back to bed for the umpteenth time and threatening consequences that

a) I know I’ll never follow through with and

b) he won’t remember in the morning anyway.

*sigh*

Sometimes, running away seems like a fabulous option.

Any of my overseas friends got a spare room?

lol

Take a good hard look at yourself Fi!

So…..I’ve begun to see that “us autism mothers” are sometimes…dare I say….Clicky.

I had a great conversation with a friend of mine recently that has 3 NT children. She is an absolutely beautiful friend both inside and out, and I adore her.

We were chatting about life in general and we stumbled onto the topic of this blog.

I was surprised when she told me that she’d been reading it because she has never commented and I have no way of knowing who is reading it without these comments. I told her that I had no idea but was flattered.

I asked her why I’d never heard from her about it and then she told me that sometimes she feels like she is not qualified to comment on any of my posts and that she feels like she would be jumped upon by the AS community if she dared to offer any opinions or advice because she isn’t past of our little “elite” club.

I was really surprised hearing this because I really wasn’t aware that there was a special “club” that I am a member of , and this off-the-cuff comment from her really got me thinking. I was quite saddened by her observation for a number of reasons.

Mainly because I could actually see her point. I suppose it IS – true to a degree .  I think that we do all band together because it’s only in these friendships that a lot of us feel safe to be ourselves and admit that we are not coping in some areas or that our children are struggling etc etc.

We often feel that we are judged by the wider community because our children are often noticeably “different” and because we have to apply completely different disciplinary techniques than they do to their children and we STILL don’t always get the desired results.

We also know that these groups of ASD mum’s will take us as they find us – warts and all – and help us to pick ourselves up and get on with it because chances are: they have also been in exactly the same frame of mind at one time or another and have also been looked down upon for the decisions that they’ve had to make regarding their offspring.

And, I can now see that I have kinda shut a lot of people out of my life (unintentonially) because a part of me was really jealous of them and resentful about how easy I thought they had it.

But that’s just the thing here : I really want to stress that I truly am not like that. I don’t for a second want any of my friends with NT children to feel like they are unable to get involved in my life or my children’s lives and I definitely don’t want them to feel like they aren’t “qualified” to comment on my blog.

And I’m very sorry if that’s the way that I have come across. VERY sorry!

The hardest thing for me is that just as these mum’s don’t understand my life with AS children – I too, don’t understand what it’s like to raise perfectly “normal” children either because I DON’T HAVE ANY~ This is all I know so of course it’s all I can write about!

Once upon a time, I would get angry whenever I heard a parent of an NT child(ren) lamenting that they were tired/annoyed/frustrated with their child and how hard parenting was.

I would look at them through narrowed eyes and think “you have absolutely no bloody idea what it REALLY feels like to be tired/annoyed or frustrated” and I was being the judgemental one!

I don’t think that I am that bad anymore but it seems that I still have a way of making other mum’s feel like they have to avoid me.

I just want to say for the record that I love ALL of my friends and please don’t feel like you can’t have your say.

I welcome your thoughts and input. I don’t want anyone to feel excluded.

True: this blog is called “living with autism” but I am also a mum, a wife and a friend on top of all that.

Just something to remember

Big bear hugs, and  sloppy wet kisses…….Fi x

And the result was……

I took Ella out of school for an hour this morning to see the Child Psychologist (CP).

And afterwards, I came away with mixed feelings.

The CP told me that she agreed that most of the things that I’d written down pointed towards an aspergers diagnosis and that she also noticed herself during her session with Ella, that there was a lack of eye contact and the attempts at keeping any conversation going were difficult.

During her hour long appointment, she did a written assessment with Ella and then spent the remaining half an hour just chatting to her.

I have no idea how any of this went as I was in the waiting room with Lucas the entire time and Ella being Ella- didn’t reveal too much.

But then the CP told me that I needed to take Ella to a paediatrician if I wanted a formal diagnosis.

This confused me.

Because, I know for a fact that this CP has already diagnosed my friend’s daughter and was instrumental in Harley receiving his diagnosis as well.

So why now send me to a paediatrician? I wonder has the diagnostic criteria changed since Harley and Lucas’ diagnoses?

Hmmmm, have to look into that one.

She asked me why I was even looking into getting her diagnosed anyway since she is too old to be eligible for the “helping children with autism ” package”.

I was shocked at this question!

So I replied that it wasn’t about the money but about helping Ella to understand herself better and so she can access the special needs dept at school for any extra support that she might need.

She really doesn’t seem to have any of the sensory issues that the boys do and she has no speech problems, her biggest hurdle is fitting in socially.

While we as parents receive no funds – the school would if she were diagnosed so they would then have the resources to assist her.

Ahhhhhh, It’s all too brain frying!

I think that I will go to the paediatrician, and with his opinion mixed with the CP’s, the special needs team and the GP – I can then have something concrete to show to all those do-gooders in our lives that have told me to stop trying to label my children and just let them be.

Even though this is not the reason I am chasing this, it would surely be comforting to be able to say:

“See, I told you so. I DO know my daughter and I AM in tune with her needs and what is best for her”

It seems utterly ridiculous to me anyway when people say these things. What parent doesn’t want the best for their kids?

And come on….Label my children???? Who in their right minds would seriously chose “autism” to label their kids with?

If I were that way inclined, wouldn’t I be more likely to label her with something like “gifted” or “genius”. Something less confronting.

Why would I deliberately set my child up for unnecessary taunting and difficulties.

People really confuse me sometimes.