My little stars and their wars!

My boys were playing “Star Awards” this afternoon.

They were chasing each other around the house with their cardboard toilet roll “life savers“ and Harely was “Luke Skyscraper” and told Lucas that he had to be “Dark Vader“!

I seriously don’t know where they get their material from but it is hilarious to listen to!

Even though Ella and I tried numerous times to correct them, they “forgot” within minutes after we would correct them and tell them that it is called “Star Wars”.

It was just back to the same old script. And the script would go as follows:

They would enact a fight scene, Dark Vader would “die” (because good ALWAYS conquers evil) and Lucas would dutifully fall to the ground clutching his throat for effect. (Pretty good acting for a 3 year old if you asked me!)

Harely (being Luke) the “goody” would then step one foot onto Lucas’ chest and raise the arm holding his ” life saver” into the air in victory!

And then they would start exactly the same scene all over again-in exactly the same order.

After about the 4th or 5th time, I was getting annoyed by the repetition and tried to re-direct them a little.

I mean- these boys haven’t even watched Star Wars!

The closest they have ever gotten is by playing the LEGO Star wars game for the Nintendo or by these clips on youtube that were obviously done by people with WAY too much time on their hands!

All was going well, until Lucas decided that HE  now wanted to be Luke , which would have been a good change in the script however –  Harley didn’t like that one little bit! He wasn’t going to be Dark come hell or high water!

So to make his point known, he then decided that he was going to be Yoda because NO-ONE can beat Yoda – “he has the Force you know mum” !

(I didn’t have the heart to tell him that they were actually allies not enemies!

But I’m not sure he would have listened anyway!

And once that was sorted……the fight re-enactments started all over again.

Apparently, after about ten more minutes of play: Luke got “bored” and went to watch Dora on the TV so Yoda got mad and killed Luke,  and then went onto complete his killing spree by sorting out “Dark”, the princess and that Obi guy!

I had to laugh……what else could I do!  His imagination is up and running even if it is a tad violent! (Which is one of the reasons that he’s NOT allowed to watch the series just yet!)

If I learnt nothing else from this afternoon’s play session – I learnt that  if this is what they are managing to come up with on their own. I think it’s wonderful and shouldn’t be tampered with just yet!

Scripting aside- the fact that they were “trying ” really hard to take turns and play together just moved me beyond belief.

Go you little Jedi’s GO!

Self esteem in my little boy…..

I came across this article this morning on Wendy Lawson‘s website.

IT.IS.AMAZING!

While I know that all individuals with AS are extremely different to one another, and their needs, likes, dislikes and characteristics vary greatly between them all, I found that my son Harley is VERY similar to Wendy in SO MANY WAYS!

It was like I was reading a blow by blow description of him!

There were 3 things in this piece that stood out to me more than anything else.

They were:

1. We do not like change, because of difficulties with predicting outcomes…

I always knew that Harley didn’t like change and that it freaked him out but I never truly understood “why”…..

He started in his “new” classroom today. We spent the entire weekend preparing him for this.

We talked about the new classroom and teacher, drew pictures and “imagined” where he thought he might sit/put his bag and hat/ line up etc etc.

So in doing this……I was helping him to predict the outcome!

It made me feel good to know that I have been doing the “right” thing all along without actually realising it!

2. Focus in on the successes…

I often “point out ” to Harely , the areas that he needed to improve in or things that he could have done better and I can now see that it he interpreted it as me focusing on all his short comings or failures instead of : Focusing on the successes.

3. Just state the facts. AS can be quick to pick up on all that they are not, rather than on what they are or could be…

I have realised that sometimes I overwhelm my little boy with all the “extra” words that I use when explaining things to him. This frustrates him and he has difficulty understanding exactly which part of the instruction that he is supposed to be listening to. He often only hears the parts that he is interpreting to mean that he is falling short of my expectations of him and loses the rest of the sentence in the process.

For example : “Harley, you are such a messy, untidy boy, your bed is unmade, your toys are all over the floor and your clothes that I spent hours ironing are all in a heap on the bed .I’m so disappointed in you. It makes me really sad.  Honestly, I don’t know why I even bother! Would you PLEASE do something about it!”

But all he heard was: “Harley, you are a messy untidy boy….blah, blah, blah…..You are a disappointment and I’m sad”…..and he feels that he has let me down.

Hmmmm, It appears that I still have a LOT to learn!

For my husband……

Well, my lovely children have so kindly given me the flu and I have spent the better part of the weekend in bed.

Not because I got a worse case than anybody else did but because I have learnt from experience that if I don’t rest at the onset of symptoms , it can linger in me for weeks.

And like every mother on the entire planet- that is BAD because everybody wants something from you at some point!

But here’s where this post gets interesting…..all weekend…..my husband was fantastic!

And he hasn’t always been this way in the past.

He has trouble feeling empathy, finds it really difficult to  understand another’s point of view and doesn’t know the “right” things to say . (Anyone, wanna attempt to diagnose?)

But seriously, he washed, he ironed, he cleaned, he bathed he cooked, and he washed up the dishes afterwards!

This weekend, it wasn’t as big a deal as it would have once been for me to opt to stay in bed and rest . And he even took 2 of the children out for a couple of hours so I had a quiet house.

He made me coffee’s, went out and bought me sushi for lunch, brought me glasses of water and panadol in bed and constantly asked me if I needed anything else.

And the icing on the cake?………..

He sat down on the lounge tonight and sighed.

Then the next statement out of his mouth literally blew me away.

“Your life sucks- I wouldn’t do your job if you paid me, and I’m sorry, I never truly realised just how much you do.”

I smiled……..and thought to myself….. he hasn’t even done the HALF of it!

The fishing vest!

After my little insight into Harley’s behaviour and lack of concentration levels in the classroom on Friday, I decided that I seriously needed to look into getting him a weighted vest. I jumped on my i-mac (one of my best ever purchases!) and headed straight for google. The most helpful site I found is here.

It’s called Life skills 4 kids. It’s an Australian site and gave me all the information that I needed.

I learnt that the you need to add at least 5% of the child’s body weight and no more than 10%.

I spoke with Harley’s O.T. to confirm this with her and she agreed. In fact , she has suggested one to me a while back but I’d forgotten all about it until now.

She told me that:  if his sensory needs are met  (through the weight of the vest), then we will see a lot more of  Harley that we need to see instead his current behaviours :- walking around the classroom and being unable to stay still, lack of concentration, stimming and poor balance.

I thought about buying one online but couldn’t justify it since I have a sewing machine and an overlocker as well as the ability to sew so I came up with the idea of making a vest in the same colour as his school shirt so that it wasn’t too obvious when he was wearing it in the classroom.

I went to the hardware and looked at buying some flat washers to use as the weights, but I could only find zinc coated ones not stainless steel so therefore they may rust and stain the vest when it is washed.

I ended up buying 2kg worth of stainless steel fishing sinkers in a flat design. (crazy I know)  - I worried a little that they would push into his skin and annoy him but because I used 3 layers of fabric they don’t seem to bother him.

I used a “quilting” effect and inserted a weight into almost every square. The idea of hand stitching every single sinker on individually left me cold!

So this is what I ended up with.

Not professional by any standard but functional all the same.

Weighing the sinkers - 5% of H's body weight- 950g

The quilting to hold the sinkers in

The green's aren't a perfect match but it's the closest I could find.

My next job is to make a gold one to match his sports shirt that they wear on Wednesdays and Fridays.

It’s already cut out but I need to find some more spare time…..whenever THAT will be

Sports shirt

All cut out, but out of time!

A big heavy sigh.

Well today I finally did it!

I actually went and helped in Harley’s classroom as a parent helper. It was the first time in 7 years since my daughter started Prep that I’ve been able to help at school. I’ve always had a younger child at home or have been working so until now it had never happened.

I also took little Lucas with me today and he was reasonably well behaved, well – the best you can expect from an autistic 3 yr old who hasn’t had a sleep!

The teacher was lovely, the children were as well but I still left there feeling very sad.

You see: I observed my son in class today and it broke my mother’s heart. All the other children were sitting still, listening , behaving and obeying. Whilst my son was climbing onto chairs, doing his own thing, ignoring the teacher and could not sit still AT ALL!

I asked the teacher and the other parent helpers that go into the classroom regularly if this was what he is usually like or was it because I was there and they all told me the same thing.

He is always like this….

*sigh*

I gave him his chewy tube and he settled a little bit  but only for about 10 minutes , and then the overactivity started again.

He stood up  and sat down about 15 times, he rocked , he stared into space and he generally just did his own thing.

I’m thinking that my next move is to get him a weighted vest and see if that helps him at all.

Lucas was starting to get a bit clingy and bored and started climbing all over me and whinging softly that he wanted to go home and  the teacher noticed and said to me “You’ve really got your hands full there with both of them”  and I smiled and nodded.

But I’m glad it’s Friday.

I have all weekend to relax and prepare myself for next week.

The kids are about to help me make some spaghetti and meatballs and I might open a bottle of red for P and I to share tonight.

Maybe I’ll even whip up some of my famous Gluten and Dairy free garlic bread. Mmmmm……….school can wait for now.

A certain song has come to mind and I’m humming it until the words start to take effect.

It’s called : Put on a happy face

Grey skies are gonna clear up,
Put on a happy face;
Brush off the clouds and cheer up,
Put on a happy face.
Take off the gloomy mask of tragedy,
It’s not your style;
You’ll look so good that you’ll be glad
Ya’ decide to smile!

I’m sticking my head in the sand until Monday

Weighing it all up

I have been quite tireless lately in my research into H’s sleep issues.

He goes to bed ok, he has a routine that he has had since he was 18 months old.

It goes like this:  Bath- pyjamas – teeth – story – cuddle and kiss – prayer – bed.

It hasn’t changed over the years and is rarely done in a different order. We simply wouldn’t DARE change it!

However, despite him always going to bed rather easily. Actually keeping him there is a whole other matter!

He sometimes gets out of bed up to 20 times with the usual being around 5-6. He will often wander out and just sit in front of us silently but becomes like a limp fish when you try to take him back to bed. Kind of a silent protest.

Then there’s the “louder” protests : whinging, whining and groaning.

And the worst kind : The violent kind : He kicks, punches, hits and generally uses his whole body as a weapon on anyone that dares to come near him.

Thankfully this last sort have disappeared since the GF diet has kicked in and were not sorry to see the end of them!

Most of the time the wandering happens in the first couple of hours after we put him to bed but lately, he has come into our room at ridiculous hours like 3 or 4 am and we’ve ended up just taking him into our bed because we are too tired or cold to take him back and have to resettle him.

He is medicated and that is supposed to make him drowsy and it works to a degree but I think his little system is SO used to it now , the effect is less dramatic.

My research has led me countless times to “weighted blankets”. They are designed for individuals with various diagnoses such as autism, ADD, bi-polar and countless other sensory related disorders.

They help the person under them to feel calm, relaxed and secure.

But the cheapest one I could find was $150 AUD and that is WITHOUT the weights and doesn’t include postage!

Gulp!

I went to a thrift shop last week in search of a heavy blanket that I could try with him. I found this hand knitted blanket that is REALLY heavy. And because of the knitting pattern, air is able to get in and make it feel flatter. We tried a doona (duvet) but he found it too bulky and it made him sweat too much.

I weighed the blanket and it is 1.8 kg (roughly 4lb or 0.283 stone for my lovely American and Uk readers!)

And if I fold it in quarters, it is exactly the same size as the one online! But the best part is: I only paid $5 AUD for it. That’s a tenth of the price!

I came home and washed it in a wool wash detergent that’s designed for sensitive skin and H tells me that he LOVES it and stayed in his own bed all night!

So only time will tell if this continues. I realise that come summer , I may need to purchase a proper weighted blanket or come up with another brilliant idea as this will probably be far too hot then, but for now. This is working out just great!

Take THAT you silly gluten monsters!

My children are now very comfortable with the fact that they are 100% gluten and casein free.

They have been so cute helping me select items in the supermarket that are labelled “Gluten and Dairy Free” and happily point them out to me. Even L who is still 3 and can’t read (to my knowledge) manages to find things and throw them in the trolley!

I usually end up buying most of these items that they find , (whilst inwardly grimacing at the exorbitant price tags) because if they choose the items themselves, they are far more likely to eat them.

H is probably the one that has benefited from the diet the most but that may also be because he had the largest room  for improvement! He proudly tells me that he hasn’t cheated “not even one single time mum!”

Since being GF/CF, he usually turns and faces me when I call him – sometimes he eye contacts as well, he answers questions with words instead of grunts and he eats almost everything on his plate! He has even started to tell me how yummy his meal is instead of the ” Yuk, mum this is disgusting” that I had become accustomed to!

He has expanded his repertoire with what he is willing to try, and is reacting less to lumpy textures in food than he used to. He still won’t touch tapioca pudding , beetroot , pineapple or tomato but the “won’t eat” list was once as long as my arm so this is real progress.

I had a lot of people tell me that the older their children got, the less picky they were but I honestly never thought I’d see the day when my son sat down at the table and cleared his plate. Maybe now he’ll actually start gaining some weight!

I am so pleased that I decided to try out this “autism diet” and while I realise that the results are varied for others, for us- this has been well worth the effort and expense.

His bowel habits have improved immensely, (gross I know), his temper has dispersed and I feel like I’m seeing my little boy in a different and much more relaxed frame of mind.

I can tell that he’s happier in himself.

The children are loving to help me prepare meals and my daughter is forever scanning the internet for that perfect GF recipe for us all to try!

She made this GF, DF mud cake for P’s birthday last week. 

And yes, it went straight to my hips!

There are so many benefits to this diet but we still

need to  figure out a way to make H sleep…….any suggestions?

Thursday Thoughts….

My kids are all sick at the moment.

Well- H is coughing with a runny nose but I suspect that he was more than overdue for a “circuit breaker” day anyway.

I give him those occasionally when I sense that he is getting overwhelmed by school and needs to regroup so to speak. He usually benefits greatly from them but sometimes it can become difficult to get him back to school if he’s not ready! But I know that he can’t always run from what’s difficult , so as hard as it is for both me and him he needs to push past the discomfort and do it.

Over the past few weeks I have toyed with the idea of home-schooling him. I thought that it might be a great alternative to having to force him to go to school everyday and help me to avoid the stupid issues that I keep being confronted with. I did a bit of research and asked around a couple of forums to gauge the general consensus on this but we have come to the conclusion that it’s not for us.

As selfish as I know it sounds – I’m not sure that I could handle not ever having a break from him. And to home school him would mean that I had him here 24/7. Not to mention the lack of social contact that he would have. Sure I could enrol him in extra curricular activities and social groups etc. But the all the responsibility would fall solely on me and I just don’t think I’m up for it.

So we continue to trudge on with the school battle.

At the moment I’m listening to the boys play Lego together and it’s wonderful although I think I may have to step in and break up an argument in a minute! I simply can’t get my head around the idea that if he was to be home schooled- I would have to break up arguments a lot more constantly than I already do!

We had his tutor come yesterday afternoon and he actually sat down with her and worked for 55 minutes! That is a definite record for him who usually gets restless after only 5 minutes or so.

The tutor is an amazing lady. She adores H even through his more “difficult” times. And she’s seen them ALL!

She  brought along her laptop and had a program with sight words and reading exercises on it and he loved not having to do any writing (his HATES writing because it’s a motor skill that requires muscle tone and a lot of AS children struggle with this).

The reading program was American and after he had been doing it for a while and repeating the words that the program used, he started to talk with an American accent. It was SO adorable!

“Hi Mom, Listen to me talk ” followed by fits of giggles!

Anyhoo……I’m off to Lego city to crash a helicopter then help them rebuild it!

Tootles…

It sure pays to be loaded!

I was searching for a particular article in the archives of a Sydney newspaper today and I stumbled across this instead.

You can also read another article about this situation here.

They are both articles about an Australian footballer who has a 3 yr old son recently diagnosed with an autism spectrum disorder.

And this little boy gets 4 hours A DAY of therapy. Most of our children don’t even get 4 hours a week!

Wouldn’t it be nice if all parents of children with an ASD could access that level of therapy.  All of our children deserve that but sadly- it just isn’t affordable for all.

But I am still stoked for their little boy that he is getting the help that he needs.

And I don’t begrudge this couple at all. They are amazing. They are aware that they are more financially fortunate than most people and have set up this great charity site 4 asd kids.

Maybe I should get my hubby to take up footy and try to get famous?

Just a thought……:D

A child for a day.

This afternoon when I picked the children up from school it was raining. Not just sprinkling. I mean the heavy pelting and splashing kind of rain that is constant and makes awesome puddles!

I rugged L up in his little parka and gumboots and gave him his little umbrella and I had my own and as we walked into meet the older 2 kids, I was torn between chastising L for heading straight for the puddles and wanting SO badly to be able to join him!

I LOVE that he took such delight in something that most adults (me included) often complain about because of the inconvenience it causes at times.

There’s no question that it was a bit of a pain having to go to such great lengths to stay dry but just seeing L running and jumping and twirling his umbrella “singing in the rain style” just enjoying every moment of the rain was priceless.

It really made me think and ask myself some very important questions.

At the end of the day, do I  really want to be angry and annoyed  because of something as small as unexpected rain and allow myself to become miserable as a result , or do I take the frustrating things in life and dissect them until I find the joy in them in much the same way that L did with the rain?

Because it really is just rain!

It’s not war or cancer or poverty or famine. It’s “just” rain.

And after we collected the other two children from their classrooms, I threw caution to the wind and skipped backed to the car alongside the children as they laughed and squealed with delight as their crazy mum jumped in the puddles with them!

I think I may have given myself a name like “insane puddle mum” among the other parents but I don’t care!

From Sunrise to Sunset. My N.T. perspective on living with AS

Taken in Bathurst NSW 2009

In this house, I know that I have an N.T. (or neurologically typically wired brain).

My children however have brains that are wired very differently.

They have autism and their brains process everything in a very different way to NT people.

I can only write about how my family copes with Autism- I understand that our family’s experiences are probably very different to another family with the same diagnoses so I am by no means generalizing here, just telling my family’s story and sharing how I see things on a day to day basis.

Because I live with autism 24/7, 365 days a year, it’s almost impossible for me to not notice the affects that it has on family life.

As I have written before, when I first received Harely’s diagnosis, there was a period of mourning that came in conjunction with a huge feeling of relief.  Relief that it wasn’t something that I had failed to see or do with him that had made him impossible to deal with, but an explanation for why I had so much trouble getting through to my child in the first place.

I did however have a lot of unanswered questions and emotions that were all a part of trying to understand what caused the disorder. I constantly asked myself  ”Is this my fault?” and wondered if I could have done something to prevent this.  But now I’ve learnt that this playing this “blame-game” is normal in these circumstances even though I was doing myself an injustice by playing it.

Still today, I  feel incredible guilt and grief over having these children that I love and adore , while knowing that they will suffer a lifelong dis-order. I’m forever worrying about what others will think. I still feel massively inadequate at times and overwhelmed by the huge expectations put on me.

I know that sometimes my daughter Ella gets embarrassed by her brother’s public meltdowns and she gets annoyed with the boys because they require so much of my time and patience so there’s not a lot left for her.  She has told me that she wishes that she could just have  “normal” brothers so she didn’t have to deal with always being on the receiving end of their emotional outbursts.

My husband finds it difficult because we aren’t able to enjoy family weekends and holidays in the same way that other families are. Sure we can still do all these things , but the preparation and organising often seems like too much hard work for such a little result so more often than not we avoid them altogether.

It’s well known that anxiety and depression can sometimes go hand in hand with autism spectrum disorders in those individuals that are diagnosed , but there is very little literature written about the effects of AS on family life. Both hubby and I have at separate times suffered depression. It is debilitating and awkward. The parents of AS children are just as susceptible to anxiety disorders as their children are and for different reasons- but this is not commomnly spoken about amongst autism forums.

For me as a mother, it’s been an uphill battle to wake up and get on with my day knowing that the tiniest thing can throw the day into absolute turmoil and you have to walk on eggshells to keep the peace.

There is also a lot of anxiety and depression that are closely related to the lack of sleep that often affects families living with autism. When your child (ren) are awake every night – they are sleep deprived. BUT SO ARE WE!

And everyone knows that when you’re extremely tired, it’s hard to cope with even the simplest things let alone major  meltdowns and the like.

All of the people in my son’s lives on a professional level are always teaching me ways to make their lives smoother and lessen their anxiety but all of these methods are time consuming and expensive and seem to raise my anxiety levels in the process.

I also  have trouble dealing with the discipline side of AS. I’ve been taught over and over again to encourage good behaviour and ignore the bad but the family still seems to revolve around the boys. I get tripped up on this a lot because I hate to feel like my kids are in control.

I have had people ask me why I blog and spend “so much time” on the computer.

Well I think that it is all subjective as to how much is “too much” time but my answer to that is that I need to write for a release. It doesn’t matter if no-one reads it. This is something that I need to do lest I go crazy!

I need to make it known that I am doing my absolute best for my kids and always looking for new ideas to better my family and to grow personally. BUT it isn’t easy!

A lot of AS mothers write about how hard it is to parent these precious children but I want to write that it’s also hard to LIVE with them as well!

From my NT perspective, there is SO much focus on how we can better accommodate these children with AS but not a lot of support for the family unless you actively seek it out yourself.

But just like all parents. Our children are what drive us to be better people and we will continue to put them first even at our own expense

So what…"Am I right or wrong?"

Seriously……so what if my child plays his Nintendo before school after he gets himself completely ready without a fight.

So what if he watches a bit of television in the morning.

Does it make me a bad mother for allowing this? Apparently it does.

I was told that this makes his little brain too overactive before school starts and he has trouble settling in for the day because he is unable to come down from the adrenaline rush that all the bright lights and action cause.

But I’m at a complete loss as to how to motivate him to get ready any other way. This is what has worked for him so far.

It feels like I’m being attacked for somehow contributing to him not handling mornings.

Does anyone have any ideas as to what else might work , do any of you also agree with this notion of his brain being over stimulated before school?

Or should I continue allowing this because so far it’s worked for us?

I wonder why my kids are crazy? Hmmmmm

You know that old  saying…..about being tarred with the same brush?

Well, I’ve been going through some old albums and I came across these

great pictures of me and my late dad.

It seems that I have passed the art of posing stupidly for cameras onto my children.

And I think it’s hilarious

Gosh I miss you Dad xxx

A day to remember

Mum flew home this afternoon. *sigh*

Man that sucks! But I will say that we had an absolutely wonderful time while she was here. AND she cooked up an absolute gluten-free storm for us.

I have over 300 cupcakes and 36 dozen (yes you read that correctly) gluten and diary free choc chip and jam drop biscuits in my deep freeze!  That should keep us busy for a while!

She even let me have a sleep during the day today. She truly is a blessing.

Mum and H.

Meanwhile, I had hubby, and E home yesterday and today with a vomiting bug. That’s never pretty!- And little L is in bed with a runny nose and a cough so H and I are keeping well away just in case! So unfortunately things didn’t all go to plan!

At school, H had a casual teacher today which I had anticipated would create a bit of a drama for him initially but he handled it like a champion! He thrived at school today, he walked out grinning from ear to ear and ran to me and mum and gave us both enormous bear hugs.

He hasn’t stopped talking about this teacher since we picked him up this afternoon. And she really is wonderful. I actually  already know her through a mutual friend we have that grew up with her and she is the absolute nicest person you’ll ever want to meet. She has a son with a cochlear implant so she has an understanding of children with special needs which also helps a lot.

It makes SUCH a difference when your child just “clicks” with someone.

H was SO calm, compliant and happy this afternoon at home and even P (hubby)  commented on how nice it was to see this side of him that sadly is the complete opposite to a lot of afternoons after school which are laced with anxiety, meltdowns and the like.

H told me this afternoon that the teacher sat down next to him while he was working and told him that he was beautiful and they chatted about him and his interests. He obviously appreciated the effort that she made with him. She also came up to me as soon as I arrived and told me that she’d tried to ring me.

I did notice that I had an unanswered call on my mobile from a “private” number and when I picked up the home phone earlier, it dropped out so I missed them both.

She told me that she was ringing to put my mind at ease and let me know that he was very settled and that she thinks he is a treasure.

I almost cried.

Sometimes the smallest comment can mean so much.

Because it means that finally my son’s beauty is being seen by another person who has bothered to look past the confused and anxious brave face that he puts on in public.

God bless her. I need to give her a hug.

A different perspective

I was talking to a lovely friend of mine on Sunday and we were having a conversation about everything that’s been going on in my life this past few weeks.

She asked me what was happening regarding a particular difficult situation that we are facing and I told her the whole sordid story to date. I had expected her to be horrified and lavish sympathy on me but she surprised me when she pointed out that I was only looking at the situation from my perspective and not considering all of the other aspects of this drama and that there really is SO much more going on than just what I could see.

I reluctantly had to admit that I had let this poison me and my attitude had begun to really stink towards the person(s) that are also involved.

I have been feeling sorry for myself and screaming “it’s not fair”and hadn”t stopped to consider the whole big picture.

And I’m discovering that the way that I have been viewing autism is very similar.

I sometimes get caught in the whole unfairness of raising children with AS and don’t realise that I’m only considering my perspective.

I need to stop sometimes and try to see things from son’s perspective and possibly approach difficult situations with that in mind and not just assume that he is seeing things the same way that I do or that he will respond like I would.

I have a new blog friend who is brilliant at helping me to see that there are two sides to every coin and  that the AS mind thinks through situations in a much different way.

For example: my son is less likely to let emotions override logic and he would analyse situations before jumping in whereas I would go for it if my emotions felt all soft and gooey.

I’m realising that when I consider that there are several different perspectives on every situation and if I fail to see them all, I miss the bigger picture altogether and get stuck on the same old issues and keep coming up against the same challenges without ever learning how to avoid them in the future.

The other lesson I’ve learnt stems from a comment on my last post.

I was lamenting how much I envy those organised people that have everything planned and structured because I struggle with it but it was pointed out to me that NT people like me can be just as frustrating to these AS individuals because often we don’t stick to the plan and can throw their plans out and generally create chaos!

Food for thought I think!

This certainly wasn't what I signed up for……

When I was a little girl, I always dreamed of getting married and having little babies and playing house. It was all I ever really wanted to do.

Even through high school when other girls my age were planning their careers and looking into universities and choosing their subjects so they could eventually enter their chosen fields….all I dreamed about was wedded bliss and happy families.

That was going to be my career. I had no interest in higher education, I knew what I loved doing and no-one could convince me otherwise. I had it all planned: I would  marry someone tall , dark and handsome and he would be a musician.  I would write songs with him and we would perform at venues all over the world.

We would have 4 children. 2 of each. They would be well behaved, beautiful and brilliant. They would travel with us and life would be just perfect.

Instead…….I married a stable man with an office job. He is not tall, or dark but he certainly is handsome.

He is tone deaf and couldn’t carry a tune in a bucket. He is a wonderful man, not the slightest bit impulsive and basically the exact opposite to what I “thought” I wanted.

We have 3 children though we only planned 2 and they are mostly well behaved, definitely beautiful and brilliant in their own way.

As for the travelling thing- well since a 3 minute drive down the road to school makes me want to jump out of the moving car and into the traffic- suffice to say that overseas travel would never be an option!

I know I married the right person and I have exactly the life that I was meant to have.

So why then is it so damn hard?

I sometimes wonder if it’s normal to feel this utterly exhausted ALL the time?  Do all parents feel like their heads could explode at any given moment and that no amount of caffeine would ever be enough?

Or is it just me that spends all day longing to go back to bed and count down the hours until I can crawl back underneath the covers and be totally self indulgent and drift off into a world that doesn’t require me to be everything to everyone?

I am not naturally a very organised and forward planning type of person. I’m naturally very laid back and the “Typical Aussie”

….you know….. “She’ll be right mate”  and “no worries” were phrases that once commonly came out of my mouth.

Who needs a plan? Where’s the fun in that?

B-O-R-I-N-G!

But…….after having children with ASDs-all of that had to change.

I often wonder to myself, if the complete turnaround that I’ve had to make in my life and the need to become something that I’m really not , has somehow contributed to the massively overwhelming emotional and physical exhaustion that is my current life?

Is it easier for people that thrive on order and perfection. Are they more successful in list making and event planning because they don’t really have to work at it?

Am I living in a reality program with hidden cameras where people are laughing as they watch me undergo a complete personality change and have my brain literally hurt from having to make important decisions on a daily basis?

Because it is SOOOOO not funny anymore!

Well actually…….if you think about it…..it is kinda funny.

I mean- here’s me complaining that I miss my impulsive, whimsical and spontaneous life and how hard being organised , ordered and structured is for me when the reality is that life with ASD really IS  a madhouse.

No-one here knows exactly where or when a meltdown is imminent, what peculiar phrases are going to come out of a child’s mouth at inappropriate times and how you are possibly going to answer the most bizarre question you’ve ever been asked in your life!

So I guess, I DO have impulsiveness, unpredictability and nonsense after all.

God has sure got a great sense of humour

Who do you think you are?

When we first received a formal diagnosis for Harley, it was both a relief as well as a huge blow.

As a mother, I’d known for a very long time that something wasn’t quite right but I felt like no-one would listen.

I was always talking to friends about the issues that I was dealing with day to day from sleeping issues to lack of speech to inconsoleable and unpredictable tantrums.

Most of the people that I spoke to told me that he was no different to their children and that all of this was “normal” toddler behaviour. And it is. But not if it is constant and overrides family life.

I would complain that he was a bad sleeper and other mum’s would say ” yeah, I know what you mean, I was up 3 times to so and so last night.”

But I was up EVERY single night often for an hour or more at a time , several times over and more often than not, I ended up asleep from pure exhaustion on his bedroom floor.

This went on night after night for years until he finally slept through the night.

By now he was almost 4 years old and we had a new baby that slept through before him.

So I soon figured out that “my” version of sleepness nights/crying baby/massive tantrums etc etc were completely different to what other parents were experiencing.

I also had the advantage of Harley being my second child so I knew that was I was going through with him wasn’t normal as I’d had none of that when my firstborn Ella was a baby.

My mum has a very close friend with an aspergerian son who is about 8 years older than Harley and I would talk with her and my mum about my struggles and we all noticed that the similarities between her son and mine were remarkable.

By the time I finally convinced a GP to refer me to a paediatrician, I had already done a lot of researching myself and was fairly sure that if Harely didn’t meet the criteria for a diagnosis of aspergers, he would a least be diagnosed with PDD-NOS.

When I went to see the paediatrician, I went extremely prepared. I wasn’t going to let another Dr tell me that I was a neurotic mother or down play my concerns by telling me that “all” children are like Harely sometimes.

I wanted him to see that Harley wasn’t just like this some of the time. He was like this all of the time!

I took with me some video footage that I had taken on my mobile phone of Harely during some of his more violent meltdowns. One had him screaming and running at me punching me, another had him head banging on the floor and a 3rd one was of him underneath his bed groaning and thrashing.

I also took along a printout of a diary that I had written in over a month detailing the frequency and duration of H’s meltdowns as well as the cause (if it was known).

I had 3 pages of all of the things that I’d noticed about Harely that were issues to me and also wrote down the techniques I had applied so the paediatrician could see that I wasn’t just complaining wihtout at least trying to do something about it.

I had listed all Harley’s obsessions, his sensory issues and anything else that I had observed about him.

Our main reason for seeking a diagnosis in the first place was because of Harley’s behaviour issues. That coupled with his sleeping issues, created huge turmoil for the whole family.

My husband and I fought a lot because we were both so incredibly sleep deprived and felt like NOTHING we did in the discipline area had any effect at  all. H just seemed so out of control and we were at our wits end.

After presenting my concerns to the paediatrician, he ordered a lot of tests for Harely but told us that in the meantime he was more than happy to diagnose him with aspergers so that we could get the wheels rolling with funding because being almost 4 at the time, he had already missed out on a lot of early intervention.

So in terms of receiving a diagnosis , it wasn’t too difficult and I believe that a lot of that had to do with the fact that I went so pre-prepared. But I had already endured 2 years of visits to several different GP’s trying to convince one of them that this wasn’t just me overreacting to what they considered to be “normal child issues”.

I had a lot of “friends” ask me why I felt I needed to label my child. I also had profesionals that my children were in constant interaction with tell me that they couldn’t even see a problem and that they didn’t understand why I even went down the diagnosis track in the first place. These responses were unhelpful and I had to learn not to take them personally.

I learned that these reactions were just other people projecting their own opinions on how they thought “they” would handle my situation that had nothing to do me at all.

I now tell people that I’m not “labelling” my child but using this diagnosis as a tool for accessing the help that he needs.

I really urge anyone reading this that hasn’t yet taken the diagnosis road to think very seriously about pursuing it.

When my youngest child Lucas started exhibiting signs of autism, I was very quick to get him to the paediatrician so as to not delay a diagnosis for him because I saw first hand how much easier Harley’s life has become since realising that he has aspergers and taking the necessary action to help him to function in this crazy world that we live in.

There ARE some good days amongst the bad!

Today we went to my cousin’s wedding.

Me and my wonderful hubby - YES I am pulling a face. I don't look like this!

It was a great day to catch up with family and I was thrilled with my children. They were absolutely beautifully behaved and made us proud.

I believe that we reaped the rewards from all the organising and preparing that I did before hand, it obviously paid off.

Sure we had a few moments which could have easily have gone pear-shaped but I’m learning to read my boys better and mum helped me to step in and remove them from possible triggers before it had the chance to fully escalate.

They were well-mannered, calm and delightful.
I only wish that all our family outings went this well. (I admit though that we did have the nintendos packed in my handbag….Just in case!)

I took my own gluten and casein free food for the children because I wasn’t keen on jeopardising all the hard work that I’ve put in over the last few weeks and H even asked me if the dip was gluten-free before he dipped in one of the crackers that I had brought with me.

So it seems he is learning that  this new diet is actually working for him and really trying to stick to it himself.

Since mum’s been here, even she has been amazed at the difference in the children.

In the bathroom last night as mum was cleaning his teeth, his sister accidentally hit him in the tummy with the corner of the book that she was holding and he screamed and started flapping and jumping, but within minutes he was able to calm himself down enough to actually tell mum why he was upset. This is a HUGE  step forward for him!

If you are reading this blog for the first time- let me tell you that 6 months ago we wouldn’t have even attempted to go out with my boys as they can be extremely unpredictable and volatile in public places when they become overwhelmed so this is a really big deal to us!

I’m also aware that I shouldn’t necessarily put the horse before the cart and that there is still a lot of trials ahead of us as they grow and their challenges change- but for now, I’m excited about today and that’s enough for now. I need to cherish the good days and I’m working towards having a lot more of them!

We actually felt like we were a “normal” family for the first time in a long long time

The best mum in the WORLD!

No, I’m not being egotistical! –  I’m actually talking about my own mum.

My wonderful mum and me.

She arrived late this afternoon by plane and took the train out to my suburb and the kids and I collected her on the way home from my son’s therapy session.

It was SO great to see her happy smiling face as she was waving madly at the children while she waited for me to park the car.

As soon as she sat down, all 3 kids started  the “Grandma, Grandma, Grandma” chant and didn’t stop till we got home.

After “present time” which is a bit of a tradition when she comes here  (and she was thankfully prepared for because my tactless son followed her around asking “What did you buy me Grandma?”)  she immediately started her Mary Poppins routine where  she delights the children with her fun personality while effortlessly cleaning up my poor neglected house!

And all this from a woman that travelled for the better part of the day.

It’s tough having her live so far away but she sure makes up for lost time when she comes.

As soon as she arrives, my whole being just breathes a sigh of relief and I actually start to relax because I must somehow sense that “everything is going to be ok now”.

I know that the autism that is so evident in this house doesn’t phase her at all and she accepts all of us exactly as we are. She hardly bats an eyelid when H has an “episode” and spends literally hours playing with the kids and making them feel special.

I know that these next 5 days will be extremely therapeutic for me and I may not blog as much as I usually do.

I simply won’t need the release as much!

I’ll be too busy being spoiled and cared for to find time.

I consider myself to be  very very very blessed to have such an AMAZING mum.

Building the Bridge…..

AUTISM IS A SEPARATE WORLD: LOVE CAN BUILD A BRIDGE (pinkfreud-ga).

Is this right?………….

Is autism really a separate world?

I personally think that it’s the same world that we all live in but individuals with AS do so in a very different way.

I’m wondering if sometimes as an NT person myself, I somehow contribute to making them feel like they are in a separate world or is this something that they will feel anyway.

And do they know that their world is different? Maybe not as very young children but I have no doubt that as they grow and mature, they are aware of their differences and wonder why they are the way that they are. That’s why I try to talk to my kids about the way they are made as often as I can.

I can only speak from my own personal experiences with autism and that’s only as the wife and mother of autistic individuals so what I perceive may not be the same way that it really is- but it breaks my heart to think that my kids go to school everyday knowing that they are not like everyone else and that they have to try so hard to do what comes naturally to so many other children.

Is it fair to expect them to adapt and fit in “our world” and why is “our world” the right one?

Why do AS individuals need to learn how to be “just like us” anyway. Isn’t that taking away their individuality? Aren’t their quirks part of the way that God made them?

Who decided that society should function “this way” and not “that way”.

Don’t get me wrong, I’m all for interventions for my children to help them learn to cope in today’s society and help them to do this more easily but I don’t want them to lose who they really are and become what society tells them is acceptable just so they “fit in”!

I often search the internet and other literature because it’s interests me to get a feel for how AS is viewed by those who don’t live with it and I’m also really passionate about learning how the world is viewed by those that do have autism. I want to “do” so much more than what I am already doing.

My children will one day be adults in this crazy world and I want them to be comfortable to be exactly who they are.

At first I really loved this quote but the more I think about it- the less it appeals.

It think that AS individuals should be defined by their personalities, not by their autism.

And yes, we need love and acceptance and education but these kids are AMAZING already. They don’t need any more love than any other child. They need to be praised, encouraged and adored.

And my children are all of that!

Anyway……….this is just my thoughts in writing on a cold Thursday morning!