MY kid is spectacular!

Today was a good day.

It wasn’t the best day but it wasn’t the worst day either. It was the day of the swimming carnival at my kid’s school and this year was the very first time that Harley has attended. It’s been the 3^rd year that he has been old enough to go but I had no success in even getting him there in past years, so his attendance alone was a cause for celebration.

He announced to me on Monday morning that he would like to catch the bus with his sister (Ella) and so I reluctantly signed the permission slip. I was proud of him but I admit that I was also a little uneasy. Don’t get me wrong – I’m all for helping him to stretch his comfort zone a little and I think it’s good for him to try new things but if I was to be completely honest, I was a little nervous having him experience so many new things at one time.

• Attending the carnival for the first time.
• Catching a bus with lots of other children.
• Surviving a crowded, noisy smelly environment for 6 hours straight with no escapes or safe corners.

But I prepared him the best that I could. And yesterday afternoon I had a chat to Ella and asked her if she would please text me at intervals throughout the day to let me know how her little brother was doing because *I* needed to know that he was surviving.

She promised she would and true to her word, she updated me every hour with messages like this:

God bless her - she is such a gem of a child.

So after receiving Ella’s second text, I decided to go for a long drive and I blasted my favourite music in the car singing along loudly at the top of my voice. Simply: because I could and it’s something that I LOVE doing!

Playing any music at ALL is a luxury that I don’t get to indulge in when Harley is in the car, so today I made the most of it and rocked it out big time.

And I may or may not have belted out some Kelly Clarkson, Alanis Morisette and just a bit of Katy Perry – you know – power songs and all that, but I digress….

But today was just what I needed. I had a great day doing whatever the hell I felt like and managed to refuel myself enough to be able to tackle any surprises that the afternoon may or may not have in store for me.

And thank goodness that I did.

Because when I watched Harley alight from the bus and walk towards me hand-in-hand with his big sister, my heart lunged into my shoes. I knew the face that he was wearing all too well. I could read the anxiety, fear and fright in his eyes and knew that he was trying so hard to hold it together. Bless him. I also knew that we only had limited time before the cork was released from the bottle so-to-speak and that I had to act fast. The rumblings of an explosion were there…. He was moaning quietly and pushing his head into my side. He was flailing his arms around floppily so I grabbed his little hand and headed for the office to sign him out early.

But Lucas wouldn’t leave. He wanted to change out of his swimming gear into his clothes and was refusing to come to the car with me. He started to pitch a fit and I didn’t want another upset child on my hands so I sent him to the bathroom with Ella to change.  But they weren’t fast enough and Harley couldn’t hold it in any longer.

So mother and son sat on a step together away from prying eyes while my little boy broke his heart. Tears ran down his cheeks as he alternated between cuddling into me and thrashing uncontrollably. He WANTED to be close to me but he just COULDN’T. His body was fighting him and his entire sensory system was out-of-control. I did what I could but knew I had to ride it out. Eventually he calmed enough for me to carry him out to the car and take him home to his safe place.

**

It was hard on me to drive home watching him wipe away his silent tears out of the corner or my eyes, but I still couldn’t get over the immense sense of pride that I had at that very moment seeing how far he had come.

My boy achieved so much more than I would have ever thought possible today.

• He pushed past his own discomfort to display great sportsmanship by going along and cheering on his friends and classmates even though he himself is a non-swimmer.
• He dealt with a different format for the day and with not always knowing what was coming next or where his teacher would be at any given time.
• He caught the bus like the rest of the kids and went to a pool that he had NEVER been to before and did all this KNOWING that there would be loud noises, lots of kids and strong smells to contend with.

He has gone from a child who refused point-blank to even consider attending the swimming carnival only 12 months ago to a child who achieved SO MUCH personal growth today. And this Mama is so SO proud of him.

And for the record; I am not trying to teach my son to conform, to be like all the other kids or continually expose himself to situations that cause him so much pain and displeasure. Nor am I trying to change him into a ‘normal’ child. I am encouraging him to recognise what I have always known about him and that is that not only will he succeed in life but he will excel.

He can do anything that he puts his hand and mind to and he is amazing, strong and courageous.

And that’s no different to what ANY parent wants for their child is it?

This is my favourite part of today. Watching him decompress and reset his vestibular system by indulging in an old-fashioned game of upside-down TV watching

Wordpower

When I was growing up, I only had one sibling. My sister is 14 months younger than I am and was in the grade below me. With us being so close in age, it was common for people to compare us. (But not our parents, they treated us as individuals.)

My sister was always is smart.

She did really well at school and went on to study graphic design at university and more recently floristry.  She is incredibly talented in all areas of design and her home regularly looks like something out of a magazine.

I on the other hand completely suck at every aspect of design and couldn’t colour match anything to save my life. And I don’t particularly care for it either.

For me school was difficult, frustrating and mind-numbingly boring. I used to turn up every morning in grades 11 and 12, get my name marked off and then walk to town to go shopping for the day. (And oh-wow did my grade 12 marks reflect this! )

Academics wasn’t and still isn’t my thing. All I ever wanted out of life was to get married and have a family, she always had a career in

This is me in grade 12. Complete with a chip on my shoulder…

mind.

I remember my grade 10 math teacher standing me up in front of the class and humiliating me by pointing out that my younger sister was able to do the maths problem that I couldn’t and asked me what was wrong with me. The whole class laughed at me and from that day onwards I never turned up to his math class ever again.

And he wasn’t the only teacher who I had trouble with. My geography teacher hated me and went out of his way to make my life hell for years. It all started because of a class discussion on evolution and he asked me what I thought …… so I told him.  He opposed the creation beliefs that I have and disagreed with me about absolutely everything from that day onwards. Publicly.

Then 4 years after leaving school I returned home to live for 3 months while I moved from one capital city to another. I moved in with Mum and Dad to save money and worked as a waitress in a local café. One day this teacher came in for lunch and gleefully jibed me in front of his friends saying: “Well, well well….I knew you’d never make anything of yourself, and look at you now. Serving ME coffee!”

Those comments have now stayed with me for over 21 years and although I’ve forgiven them both, I have seen them down the street a few times over the years when I go home to see Mum.  I still smart when I lay eyes on them and the reason I still get a reaction is because words have power.

And words spoken over or to a child can have either a devastating or uplifting effect.

(The tongue has the power to bring with it life or death – Proverbs 18:21)

I spent my school years feeling like a massive failure because my sister did so well. I felt like I was an embarrassment to my parents so I clowned around instead. But I can honestly say that I was ALWAYS proud of my sister whenever she did well. I was excited for her and thrilled when her university offer came in. By then I had realised that higher education wasn’t for me because I HATED the thought of studying anything. I made my peace with being the loud and proud goofy sister instead.

My Lucas is a textbook aspie. He has the high intelligence, the amazing vocabulary and the hyper-verbal speech. He is excelling in all areas of his schoolwork and is amazing us with what he is achieving. He’s like a mini Sheldon and what most people think of when they hear the word: Aspergers.

I can’t tell you the number of times that people have reminded me that Einstein, Isaac Newton and Beethoven are all suspected to have had aspergers traits and then follow up their observation with “See, your child is going to be brilliant one day”. (Like they need to convince me that my child is going to succeed DESPITE their diagnosis).

But then I have Harley. He is not the classic aspie. He struggles with almost every aspect of schooling from reading and writing through to socialising with other kids.

He puts so much incredible effort into just BEING in school that there’s not much energy left for learning. Add to that his difficulty coping with noise, crowds and variations in temperatures and you have a child who is constantly being subjected to pain and discomfort. His sensory processing issues are through the roof most days.

It’s like forcing ME to go cold turkey on caffeine and then sticking me in a room full of children for 6 hours because being a teacher is MY idea of hell)……I would NOT do well under those circumstances yet Harley faces this kind of discomfort AND MORE every.single.day and he does it with grace.

Harley doesn’t fit the mould of “typical aspie” that is so often assumed on him and the label does more damage to his personal opinions and expectations of himself than anything else.

And I know that comparing my boys and their abilities is not only stupid but incredibly dangerous. And  I am no longer hurt or angry at my high school teachers because I truly have forgiven them but I still remember both instances very clearly. That’s why words have to be so carefully chosen before uttering them.

My boys both have wonderful teachers who speak only the very best over my boys and because of that, I know that they will do well later in life. And that brings me great hope.

But it’s not all bad. My own high school experiences have made me a better mother. I know the effects of negative comments and off-the-cuff remarks so I am super careful to watch what I say to them lest they carry around baggage like I did.

And now that I am an adult , I realise that although my sister is so much better me academically, and in design – I also know that I am much better than her in other areas.

And this is what I am trying to teach my children.  Everyone has different and unique abilities. We are not all made the same way and no-one is good at everything.

Last night was the junior school presentation night. I had suspected that Lucas might do well because of the glowing reports we have been receiving all year whereas conversely, I also knew that Harley has struggled a lot.

And I was thrilled when Lucas earned the medal for Excellence in Mathematics. He stood up on that stage proudly smiling from ear to ear while everyone clapped. And I was sad for Harley when I watched his disappointment at not receiving an award but I knew that as rough as it seemed – it is a necessary part of learning about life.

Paul and I rock-paper-scissored each other to decide who was collecting which child at the conclusion of the night because we could tell Harley was borderline and knew it would be hard work. He won the match so I headed over to the row Harley was sitting in and he ran towards me and punched me in the stomach. He then head-butted my arm and kicked me before throwing himself down on the chair beside him. He wasn’t happy at all.

He didn’t do a very good job of hiding his disappointment so I sat quietly beside him to let him get it out of his system. Finally he looked up at me with tears in his eyes and said: “I’ll never be as smart as Lucas, I’m such a dumb head”.

I stiffened and knew that I had a defining moment in front of me. I reassured him that he wasn’t dumb at all and that there were so many children that not everyone could possibly win an award. I listed all the things that he is great at and reminded him of his strengths. I pointed out that he wasn’t the only child in his class not to receive an award and assured him that I was incredibly proud of him because I knew how hard he had been working. I asked him to try to remember to be happy for his classmates who did win awards because that’s what good sportmanship is about.

At that moment I saw Lucas running toward me with Paul and Ella following closely behind.  I looked at Harley and said: “I know you’re sad right now and I do care very much but I have to tell Lucas that I’m proud of him because he deserves to be praised for his efforts.”

Lucas threw himself into my arms and I hugged him telling him that I was very proud of him. I glanced over his shoulder at Harley and was amazed and touched when he reached out and patted his little brother on his back saying: “Well done Lucas”.

My eyes filled up as I realised how huge this was for a child who is not only in the depths of disappointment but supposedly (according to some of the ridiculous literature out there) not possessing empathy.

Well, if that’s not progress and a perfect example of empathy I don’t know what it was!

It’s a hard thing to have to deal with sadness in one child whilst not taking away from or downplaying the achievements of another but I came home last night with a big grin across my face.

BOTH my boys did me proud. And it was an incredible night.

The thing about anger….

We have many folders and files of therapy reports and all things pertaining to autism in this house. They are everywhere. Literally.

The thing about anger is that it can have a profound effect on your day.

It changes how you view situations and people, how you act and how you think.

It can be a very dangerous emotion if it’s not handled correctly and today; I almost became a victim of my own undoing by indulging in allowing bitterness to overwhelm me.

***

I’ll go back to give you all some context:

***

Today, I turned the house inside out looking for the report for Harley’s psychological and behavioural assessments that we had done through the university almost 6 months ago now.

I had deliberately put these results aside when I received them in the mail because I simply wasn’t ready to deal with them at the time.

 Well, ok, I did briefly skim through them when they first arrived but I have to admit that I didn’t really absorb any of it at all because I didn’t want to.

But the thing is: the psychologist that Harley has started seeing recently has requested a copy because it would be helpful for her to be able to see the best ways that she can communicate with him and help him. So I had no choice but to search for it.

And I found it. I read it and re-read it and read it again. But I couldn’t escape the fact that it was right there in print in front of me. It was very real.

The words: ‘low average range’, ‘below average’, ‘well below average’ and 8^th percentile jumped out at me making me squirm. And from what I’ve seen at home, I believe that this particular report was very accurate.

But our school doesn’t necessarily agree.

Here is an excerpt from the report:

H’s pattern of performance across tasks indicates that he is experiencing difficulty across a range of cognitive domains including verbal reasoning and knowledge, working memory and his processing speed ability. He has particular difficulties in reading comprehension, spelling and numerical operations which supports Fiona’s initial reports… (Loved that bit).

Then it goes on to deliver further results and recommendations for more classroom aide, more learning support and more specialist attention in the school setting.

And this is the part where I burst into tears. I have literally gone around in circles tonight trying to ‘tidy up’ my initial post about my own personal reactions to the subject of aid (or lack there-of) in our school. What I wrote was very true, more than a bit controversial and very heartfelt but it was verging on venomous.

I hovered my mouse over the publish button several times but I wasn’t able to go ahead with it because I knew I had to calm down first and there was a part of me that just wasn’t comfortable with publishing such vitriol. That’s not – and never has been – my intention for this blog. I want to advocate not obliterate and I know too well that words spoken in anger can cause irreparable damage. So I trashed the whole post and I started again.

And no. I don’t think that I am taking the easy way out.

I am still extremely bothered that my child is desperately in need of extra aid and assistance that he’ll possibly never receive, but I have realised that I would achieve nothing good by giving in to angry tirades.

I need to go about this the right way; I just haven’t figured exactly what that is yet.

I am still in major doubt that the school really sees the big issues here. Don’t get me wrong: It is a great school and my children all have wonderful teachers but when you’re dealing with autism and all that it encompasses whilst in a mainstream setting:  it will never be enough.In fact: not even close to enough. And that’s just the way it is.

So who is at fault here?

Well, I don’t think it’s either the school or us.  The school offers what they can according to their funding allocations, and we enrolled our kids there because we believe in the school. Harley had no diagnosis when he started Prep. We were still viewing him as our ‘impossible child’ with shocking social skills and speech delays. We could not have predicted how things would eventuate 4 years down the track and could not have foreseen the extra needs that his disability brings with it.

The most pressing issue at the moment is that what the school sees, and what we live with are two polar opposites. School continues to tell me that Harley is a pleasure to teach, that he is doing wonderfully and that he is settling in well, meanwhile I’m still waiting for the last lot of my Harley-inflicted bruises to disappear and my own medication to kick in.

I hold no grudges because the school can only report on what they see and I can only report on my own reality. The fact that they don’t line up is what needs to be addressed here.

I have no choice right now but to give this all to God and truly believe that He is going to bring good out of this whole situation.

I simply cannot handle any more stress. I’m at my limit, so Jesus: PLEASE take the wheel.

Making a difference…

My Facebook status today read: 

 I just got a care package in the mail with a beautiful letter from my best friend’s Mum…….it’s so wonderful to be randomly blessed like that! Made my day

 And it DID totally make my day.

But you know what? The package wasn’t filled with chocolates, flowers or expensive gifts because Mrs M knows that this is not what I cherish the most, but instead it was filled with something much MUCH better than that!

It was filled with words, and it was filled with love….Lots and lots of both of my two favourite things

She has taken the time over many months to cut out articles from various magazines and newspapers and she has saved them up to send to me.

But these aren’t just random articles; they were all chosen with the specific purpose of encouraging me. Some are about ASD, some aren’t but each of them has a message of triumph through trials and average people achieving extraordinary things.

It really is so humbling to read this stuff and realise what a blessing my children really are.

Mrs M is ‘officially’ retired but still teaches primary school on a casual basis and in her letter she wrote of an incident that happened at school recently with a little boy the same age as Harley who is also on the autistic spectrum. My eyes welled up with tears as I read about how this little fella had a big meltdown and started kicking, punching, biting and screaming at her because he wasn’t coping. And this all occurred because he ‘thought’ he had lost at a game.

She wrote that she remembered reading in my blog that the best thing to do in situations like this is to stay calm, speak quietly and remove the child gently from the scene so that they can gather themselves and calm down. She remembered that trying to punish or discipline a child in circumstances like this is not only futile but so so wrong because the child is not being ‘naughty’.

She then wrote that later on when he came to apologise to her that she was able to convey to him that she understood that he wasn’t angry with her but that he aimed it at her because he didn’t know what else to do and she just happened to be there. She told him that she understood that his anger overwhelmed him and he lost control in the moment.

(On a side note: I hear of situations like this happening time and time again to children on the spectrum and it breaks my heart to hear them spoken of as “bratty”, “spoiled”, “naughty” or “badly parented” kids, ESPECIALLY when I hear it from teachers or professionals in the educational system who have clearly no personal understanding of ASD. I can’t help but wonder if these people actually lived with a family affected by the many manifestations of ASD for even a day, would it cause them to maybe change their opinions?)

But thankfully, that is not the case here.

I read the quote below on a Facebook page called Single mothers who have children with autism and  it’s attributed to Laura Tisoncik.

And it says:

‘The difference between high-functioning and low-functioning autism is that in high-functioning: your deficits are ignored and in low-functioning, your assets are ignored.’

Think about that: To put that quote in the context of the above story…..I’ll dissect it for you all.

ALL disorders on the autism spectrum both high functioning and low functioning share the exact same core deficits . It’s called the Triad Of Impairments and it is made up of:

• Social and Emotional Interaction
• Social communication and Language
• Imagination and flexible thinking

 Now Because the little boy in Mrs M’s story has Aspergers (which is high-functioning autism)….his deficits are ignored.

Put simply – people could look at him and see that he LOOKS normal and wrongly assume that he must therefore BE normal and place unfair expectations on him forgetting (or being unaware) that he has impairments in all 3 major areas of social interaction. So his deficits are ignored because they aren’t obvious.

And because I don’t have a low-functioning child – it wouldn’t be fair for me to write anything about perceptions or realities here because I will never understand it like a parent of one of these beautiful kids so I won’t even try.

So back to Mrs M….

I was so incredibly touched by her story. What a remarkable teacher she is and how excited I was that someone read the words of a simple stay-at-home Mum and didn’t disregard my advice because I am not university educated or professionally qualified in autism. I’ve always said that I may not hold any degrees or have any medical knowledge per say but I know my child more than anyone else on this planet and this THIS is why I continue to write about my family on the world-wide-web.

THIS is why I put us out there for all to judge in the small hope that even one person would learn that individuals on the autistic spectrum are worthy of the extra time and effort that it takes to learn more about how to best parent, live with and befriend them. 

Kids like mine are amazing but all too often they are misjudged, misunderstood and grossly underestimated.

There needs to be more Teachers, Doctors, Health Professionals and Community Workers out there like Mrs M who are teachable and willing to listen to parents. And I for one am not going to stop writing until I’m satisfied that I’m being heard

I seriously love this kid…..how could anyone not want to learn to understand more about autism.

Confessions of a grumpy mother.

Just a little warning between friends: don’t read today’s post if you want to read something happy and upbeat…you won’t find that here.

I’m waaaay over tired and frustrated and more than a little bit peeved today. I probably shouldn’t even be anywhere near a keyboard in my current state of mind but ….meh…

Today is part 2 of Harley’s cognitive and behavioural assessment at the psych clinic at the university.  I am sitting in the waiting room feeling sick, angry and agitated. There is a little girl beside me snorting every 2 minutes while her father sits by saying nothing. If that were my kid, I’d be whipping out a tissue and telling her to blow, not allowing her to make that insidious noise.

Told you I was cranky.

It’s partly due to lack of sleep and partly due to nerves.

I’m not nervous about the results of the assessment but more the toll that it’s going to take on my already massively sleep deprived child and the crap that I am going to have to wade through to bring some semblance of peace back into the household afterwards.

Last night was an absolutely shocker. He was awake pacing the hallway and crying and intermittently screaming for HOURS on end.   At 2am I eventually stuffed an earplug in my ear and a pillow over my head in a desperate attempt to get SOME sleep but that was short-lived too.

He told me that his brain wouldn’t switch off and that nothing he tried was working. We prayed together, we did the quiet radio in the background, the soft music, the deep pressure massages, the weighted blanket, the brushing and the writing and drawing your thoughts down on paper before sleep.   Heck….I even sung to him! And all of this combined with sleeping tablets…..didn’t make a scrap of difference.

Finally I gave in and took him into my bed with me and even then he constantly reached over to check my face and see if I was asleep. Because EVERYONE loves a slap on the cheek every ten minutes…sigh….It was clear that I wasn’t going to get any sleep either. He had decided that if he was awake – I had to be awake too. That’s obviously the stupid unspoken rule here.

And of course Mr Patient was interstate…..that always adds another level to the anxiety that he experiences and of course I have a big day ahead of me today.

Anyway….once we arrived at the clinic today, I spoke to the psychologist privately before Harley went in. I told her that he had barely slept a wink last night and she replied that lack of sleep would greatly affect the results of the assessment and suggested that we postpone AGAIN! (this is the third time).

I actually laughed in her face.

Does she think I can control this? That I should have maybe done something MORE to avoid another sleepless night before an assessment like this?

Seriously?

Do people think that I exaggerate the seriousness of the sleep issues? That I am trying to extract some sort of sympathy? Because honestly – I  don’t know anyone who would wish this upon their worst enemy. I didn’t choose this life and I’m doing the absolute best that I can with what I have got. If I could fix it, I would have done so years ago. NO-ONE is that stupid.

And surely the fact that every single time we have come here – anxiety has been at play and THAT is the very thing that should be going in her notes. The teachers need to know this stuff. They need to know just how greatly changes affect this child. They need to be given some insight into just what goes on in that head of his and see that his potential is greatly masked by the crippling anxiety that engulfs him frequently.

I don’t want to give my kid more drugs, I don’t want more ‘advice’ I want the results to show that he does not cope under pressure and I want allowances made for him so that he CAN reach his full potential. Is that really too much to ask?

Besides: Isn’t that half the point of doing this assessment in the first place?

Sorry loyal readers. You got me on a grumpy day, I promise to be more upbeat and thankful tomorrow but I KNOW that there are a lot of you also throwing your hands up in the air screaming “Aaargghh…WHAT NOW”  when autism throws you another curve ball as it has done to us this week.

And if nothing else…..at least now you know that you’re not alone.  We are all in this together. Every step of the exhausting frustrating way.

~~~

I’m ever so grateful that tomorrow is a new day with new mercies and greater expectations.    Thank God that His mercies are new every morning. Without that promise – I don’t know what I’d have to cling to.

Hope you all have a wonderful weekend. Check back here next week for the cheerier, more relaxed and less bitter Fiona X

Someone broke my baby.

There has been a huge shift around here lately. And it’s really thrown me. I’m not sure what exactly to do so I’m gonna write until I can get my head around it and try to make some sense and figure out a game plan.

Feel free to click somewhere else if you’re not interested in my ramblings. I wouldn’t blame you!

~

Oh? So some of you stayed! I’m impressed!

I’ll go back to the start of the story:

Exactly five years, 8 months and 2 weeks ago we welcomed out second little boy Lucas into the world.

He was unplanned but a really beautiful surprise. He was an incredibly good baby and an absolutely treasure. I admit that I was nervous carrying him for several reasons but mostly because I was genuinely scared to have another boy.

You see, Harley was an absolutely impossible baby with more issues than you could poke a stick at and still at almost 9 yrs old doesn’t sleep through the night.  Or cry any less, or eat any more or behave any better than when he was a toddler.

Ugh.

I remember the day clearly. I was at my 20 week ultrasound. And when the sonograper told me that I was carrying a boy, I burst into tears, NOT because I was disappointed and NOT because I didn’t want him but simply because I just didn’t think that I could possibly go through all of that drama again. The very thought of dealing with 2 completely out-of-control little boys just scared the pants off of me! (Harley was still undiagnosed at the time).

I have always said that out of the 2 boys, Lucas is the easy-going and unflappable one and Harley (although an absolute treasure and blessing himself) has been the almighty handful.

I’ve written MANY times that despite both of the boys sharing a diagnosis of Aspergers Disorder, they couldn’t be more different. Lucas has flourished and shone from very early on and Harley has struggled with extreme anxiety issues, massive sensory issues and is way more aggressive by nature.

But that has started to change lately.

These days – Harley is getting up in the mornings, making his own breakfast, eating it and getting dressed in record time. He has finally worked out that once everything is done – he has more time to do the things he enjoys before school. It’s been an absolute joy to see him so compliant and has given me hope for the future after all the years of heartache that he has provided.

And just when I started to count my chickens…. I found plenty more just waiting to hatch.

Because nowadays, Lucas has taken up the baton and has picked up where Harley left off.

We are running the same frustrating marathon that we ran with Harley at the same age and I gotta tell you – it absolutely sucks.

Lucas is now the one lying thrashing on the floor screaming, kicking and flailing his arms every morning. He is refusing to eat breakfast, making his body like a dead weight so he can’t be picked up to be dressed and hiding underneath his bed and refusing to comply with anything. Cleaning his teeth needs 2 adults . One to hold him down and prise his mouth open and the other to block their ears with their spare hand and shoulder to drown out the screaming and try to wrangle a toothbrush into the tightly clamped shut jaw.

Mornings have become quite a drama and it’s taking me almost and hour and a half to get them out of the house these days. He is crying more than I’ve ever seen him cry and is coming home in the afternoons like a bear with a sore head.

It’s like he has had a complete personality change.

I went and spoke to his lovely teacher last week and asked her if she’s noticed anything different in the classroom. And predictably she said that he is doing really well. ( I expected that *sigh*)

In fact, she said that he is on a reading level that is a lot higher than most kids his age and that he excels at reading and writing. I stood there with my mouth hanging open and was shocked to say the least since I’ve watched Harley struggle with every.single.aspect of school since day dot.

I’m not used to hearing things like that. Usually teachers tell me that “I know he’s trying but…..” or “He needs to work on….”.

So to be told that your child is excelling should feel really good right?

Well maybe if we weren’t copping the brunt of his exhaustion and frustration at home.

I think he does actually love school but it is absolutely draining him. I think that it is a case of the typical aspie habit of keeping it together at school and losing the plot in a big way once he’s safe at home again. I’ve seen this all before.

But whatever it is, I want it to stop. For his sake as well as ours. I want him to not only cope but to thrive and flourish. I’m thrilled in the progress we’ve made with  Harley but wishing that I could enjoy it more without this hanging over my head.

I’m too tired to do this all over again for God only knows how long. I feel like I’ve done my time, and I’m stamping my foot and pouting. It’s just not fair.

Lucas used to be my placid side kick. He was my take anywhere child. He was a reminder to me that I wasn’t a crappy parent and that Aspergers was more than out-of-control behaviour and aggression.

But then I sent him to school and he came home all changed.

Someone broke my baby.

As the clock ticks…

I’m sitting here in the waiting room at the university  psychology clinic. It is stuffy and the ticking of the clock above me is annoying me to say the least. The woman sitting cross from me is chewing gum with her mouth open and there are 2 more women beside me showing each other photos of their pets on their phones. They are all making me crazy. I’m feeling my tension levels rise with every tick.

Yes , my senses are on high alert because today is the day that Harley is undergoing a cognitive and behavioural assessment. And there is a lot riding on today.

The special needs department at school asked me to get this done over 12 months ago but to do it privately would have cost us over $900. So we opted to go on the waiting list at the university where it is done for free.

And today, our turn arrived.

I am nervous and I am excited and I am very anxious. I know that it’s for his own benefit but I also know what it is going to take out of him.

I’m expecting a mentally and physically drained kiddo when he walks back out those doors and I hope that I am enough. He is going to need patience, understanding and space….a lot of space. I’m not sure that I am up for it to be honest.

 The rain pouring down on the roof outside isn’t helping to calm me as it usually does- it only makes more aware of the fact that letting him run it off in a park later isn’t a viable option.

I wonder if he will perform wonderfully or terribly. I’m kinda hoping for a bit of both to be honest.

Because if he performs well..I can be proud of him and know that I have done a great job preparing him, but if  he does badly – the results will show that he needs more work therefore (possibly) more funding and aide.

Talk about a catch 22.

 I know my boy is super smart. I know he is more than capable and that he really really wants to do the right thing. But I also know that even BEING in the classroom sometimes drains him of all of his coping mechanisms and there’s no brain power left to focus on school work.

And that’s really tough for him. He KNOWS what he needs to do but he can’t make his body and brain follow suit.

His communication difficulties make it a struggle for him to put words to his anxieties. He can’t explain why picking up that pencil hurts his fingers, he doesn’t think to tell the teacher that his ears are hurting from the marker writing on the whiteboard and it doesn’t occur to even himself that maybe the buzzing from the fluorescent lighting overhead is causing him physical discomfort to the point where he can no longer focus.

So his brain tells him to act out.

He might slam his pencil down on the table, or kick his chair out from under the desk or collapse in a heap with his head in his hands because it’s all.too.damn.hard.

Or maybe he will take flight. He may stare out the window, allow his eyes to glaze over or become engrossed in the fibres of the carpet on the rug.

This behaviour in a spectrummy child is not a sign of naughtiness or defiance. It is not because they are bored and it’s rarely because they want attention. Most of the time it is because they are overloaded and anxious and unable to express any of this to anyone.

And I get that. The ticking clock above me is driving me bonkers, I’m ready to throw something at that woman with the gum and I’m not nearly as far on the spectrum as Harley is….if at all.

One of the purposes of this testing is to determine his strengths and his weaknesses. It is to use as a tool to cater teaching styles that are tailored to help him reach his full potential.

But first his potential needs to be discovered because often with children on the autistic spectrum – their behaviour masks their potential.

And this boy is going to go a long way in life. I just KNOW it

~~~~~~~

An open letter from a frustrated mother to an over-paid Bureacrat.

If you’ve clicked on my blog hoping to see a cheerful upbeat encouraging blog post today – you will be disappointed. Today’s post is something that I need to get of my chest, things have been very trying here lately and I’m using this platform to voice a frustration that I have with the current government and those in positions of influence.

But as you read this: Please know that I haven’t lost faith in God or his miracle-working power – I know He is working in our lives and that He will make it all turn out for good , but the light at the end of the tunnel is quite dim right now and I’m writing this out as a form of therapy for me.

Feel free to click elsewhere and read a happier, cheerier post that someone else wrote if you think you can’t handle this. I won’t hold it against you….I promise

~~~

Bureaucrat : an official who works by fixed routine without exercising intelligent judgment.

Dear Mr Bureaucrat,

I don’t even know your name. You hide behind unnecessary paperwork and ridiculous rules and regulations making it impossible for the average parent to even gain access to you. You’ve been sent numerous files from several sources on our family and therefore should already know our situation.

But rather than make you sift though more paperwork and waste MORE of my precious time, let me refresh you:

We have 3 children, 2 of them are diagnosed on the autistic spectrum and we have no family living nearby at all. My husband works away from home a lot and travels interstate regularly. Most of the child rearing falls onto me and I have requested help more times than I can remember. I have had social workers submit requests on our behalf, but still you guys continue to push all of those facts to the side as you reject us time and time again for respite. I just don’t understand at all and I am getting desperate to be heard.

Do you know that our family is held together by duct tape? And do you know that this tape is getting dangerously thin?  It is fraying at the edges and it won’t be long until everything falls apart at this rate.

I seriously have begun to doubt that you and all your bureaucrat friends with your stupid bourgeois rules even care.

Are you aware that we spend an absolute fortune on sleeping, anti-anxiety and anti-depressant medications each month just so we can cope?

I’ve been told to go and talk to a psychologist in conjunction with my meds for my own well-being, but frankly: I don’t see the point. Because just talking never changes anything, I want actual physical help. I want someone to come and take my son on a regular basis and GIVE ME A BREAK.  Words are absolutely useless to me right now and mostly serve no real purpose other than to annoy me further.

Recently I have had my own medication increased. Doubled in dosage actually so that I can ‘cope’ with my load. But I’m not interested in just simply coping. I want to thrive, I want to succeed and I want to bloom. I want to be the mother that my kids deserve not the mother that they are stuck with.

Because ‘coping’ means barely scraping by and that’s just not enough. It will never be enough.

Surely with the ever-increasing rate of autism in this country SOMETHING has got to shift. MORE services need to be put in place and funded and more families need to be able to access them.

And I am not the only one screaming out for help here. There are many others who are also being crippled by the weight of carrying so much responsibility on their own. This is not just child rearing: This is parenting extreme style. And a lot of the time it is so extreme that it would frighten the pants off most ordinary folk.

Most days I feel like I am gripping onto the edge of a cliff with my fingertips while the rest of me is dangling over a bottomless chasm. We ASD parents deal with all the same issues as parents of typical children do, but then we have all the other added ASD stuff on top. We deal with major sleeping issues, toileting issues, communication issues, issues with motor skills both fine and gross, sensory issues, learning difficulties, and a host of other things. Most of our kids have a variety of letters to add to their autism diagnosis because autism rarely travels alone. Our kids also carry diagnoses like: SPD,ADD,ADHD,ODD,OCD to name but a few.

Right now, our entire family dynamic is malfunctioning and no-one in the higher places wants to touch us for whatever reason we are given THIS week as an excuse.

Seriously: This is Australia…..The “lucky” country. Well…apparently it is. I’m have to say that I’m not feeling the lucky part right now.

Mr Bureaucrat: We are tired of living in the too-hard-basket and we want out because this is just ridiculous.

No actually: it’s a big fat joke.

And while I’m on it, What are you doing about funding for autism in schools? Because last time I checked – Aussie kids don’t get anywhere near the aide that they need or deserve. It’s embarrassing to read stories from all over the world and see just how far behind we are as a country. Do you guys in your expensive suits in your leather swivel chairs with your water views and free lunches and frequent overseas trips on our tax money even care?

“Frustrated” is the word that frequently comes to mind whenever I’m asked how I am these days. So damn frustrated.

Does it have to get to the point where a child is in danger or a parent loses their mind and gets sectioned before you’ll step in? Where exactly is the line between desperate and worthy?

I’m frustrated at the system and at the exhaustion and at the lengths that we are made to go to just to survive these days.

Something’s gotta change Mr Bureaucrat , I don’t know how and I don’t know when, but it HAS to change.

Signed,

An extremely frustrated mother.

A brand new ending.

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

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

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

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

It’s like an annoying case of déjà vu.

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

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

Sigh!

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

Weren’t they?

But I didn’t tell anyone this.

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

So why didn’t I admit it?

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

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

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

It seems not.

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

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

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

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

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

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

Not if I had anything to do with it.

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

The alpha and Omega. The beginning and the end.

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

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

Ok. So that’s settled.

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

Dear Teacher…

At the beginning of each new school year, parents are required to walk a very fine line.

And that line is the line between advocating for our children’s needs whilst not undermining the teaching staff. Because these are the people who are trained to be teaching our precious children for approximately 40 weeks of the year so keeping a working and healthy relationship with them is absolutely vital.

But when you have a child (or children in my case) with extra needs, that line becomes even finer. Because, like ALL parents, we want our children to reach their full potential, but we also realise that it’s going to take a LOT more guidance and assistance for them to reach it than it will for a typically developing child. And we need to know that the teacher fully understands this.

In this instance – I am assured that Harley’s teacher for this year DOES in fact “get” it.

I was so impressed and grateful when we collected the mail earlier this week and received a letter addressed to Harley. It was a letter from this teacher outlining anything that’s changed in the classroom along with a few photos so he knows what to expect.

Top points for her!

As I read the letter, there was however one point in particular which leapt of the page at me and my heart started pounding: ‘In our class, we get to choose where we would like to sit each day. You may choose to sit in the same spot every day or move about some days’….

I think it’s a great idea but I will be chatting to her about the possibility of implementing an idea that a friend gave me…..to slip a pillowcase over the back of HIS chair so that no matter whereabouts in the room he sits….he will still have at least one thing that remains “safe” and “constant” and “predictable”.

I’ll keep you all posted on how that goes.

Because children with an ASD come in all shapes and sizes, even two children with the exact same diagnosis can be polar opposites (as is the case with my boys).

So, for a teacher to apply the same techniques that worked on one child with AS one year might not necessarily work for my child this year. (As I am finding out myself my parenting two little AS boys with very little other than their genes and diagnoses in common!)

Like I wrote earlier: I have no intention of marching into school claiming to have all the answers. Because, I don’t. And I also have absolutely no teaching training, no special needs training and no professional qualifications in working with children whatsoever.

But what I do have is inside knowledge on my child and how autism looks on him – as well as an insight into how he may respond in certain situations. So it would be remiss of me to not offer up all this information that I have accumulated over his short life if it may help both of them to succeed

Anything that will help him to settle and learn will be in the best interest of everyone.

And this is the reason that I have spent the past week updating Harley’s one page point form “About me” sheet and writing one especially for Lucas so that I can hand them to their teachers on day 1 of a the new school year. They are laminated and ready to go tomorrow

~

You can read them both by clicking on the links here –> for  Harley’s teacher letter and here –> for Lucas’ teacher letter.

~

All ready for big school!

I also ALWAYS include a copy (for the teacher to read at their own leisure) : a copy of MOM-NOS’ BRILLIANT presentation that she gave to her son Bud’s class buddies to help explain why he says and does the things that he does.

The series is called: a hairdryer-brained kid in a toaster-brained world. Once you’ve read this first post…..click on the link at the bottom to read the whole series of posts. I promise that you won’t regret it.

And on that note…..I’m off to iron uniforms, make lunches and make the most of the last few hours that I have left at home with my 5-year-old who will be a big grown-up school kid JUST like his siblings as of tomorrow!

Wow…..where did all those years go?

How do you prepare yourself, your child and your child’s teachers for a new school year? I’d love to read all of your answers.

The armchair analogy

image from: featherandnestkim.blogspot.com

Yes!

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

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

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

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

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

I know.

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

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

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

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

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

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

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

~

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

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

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

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

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

Sigh.

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

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

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

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

~

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

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

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

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

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

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

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

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

Should I have encouraged him more?

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

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

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

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

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

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

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

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

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

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

Sounds great right?

Nope…sounds AWESOME!

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

Because THAT my friends,  is my idea of heaven.

The Assembly Conundrum…..

Darling I can see you, rocking and in pain,

Oh how I wish it wasn’t real,

I want to help you get back to some comfort once again,

So you can know the peace you need to feel.

~

So hard was school today my child, I see it in your face,

It’s written in contorted twisted frowns,

I hear in your moans and see you staring into space,

Cos sitting through assembly brought you down.

~

I know you tried your very best, to sit still and behave,

I know that listening was another test,

For what it’s worth: I think that you are oh-so-very brave,

When all you really needed was some rest.

~

The teachers watched me walk you out; they heard your piercing screams,

They wondered why you were so discontent,

I reached for you, you grabbed my hand, your grip was quite extreme,

I knew that you were well and truly spent.

~

I brought you home and let you go and lie down on your bed,

You stayed there HOURS and quietly hugged your bear,

Then finally you noticed me, you smiled and simply said:

Thank you Mum, I’m glad that you were there

Hooray in the name of progress!

Woohoo!
I’m so excited. My boys are both showing incredible progress!

Yesterday was a really grand day.

I went to help in Harley’s classroom as I usually do on Tuesdays and while I was taking one of the groups of children outside to listen to them read – The teacher was grading some of the kids to see if they were able to move up a level or two  in their reading.

Well…during this grading – one of the kids that she did was Harley and he moved up FOUR LEVELS!!!! I am SO proud of him!

This is huge from a boy who wouldn’t even pick up a book to look at 12 months ago!……Way to go mate!!

Since the boys have been sharing a room, Harley has read a book to his little brother every night….it is so cute to walk past afterwards and see them both engrossed in conversations over frogs and pirate ships!!!

They are not only enjoying time together reading but also DISCUSSING it later!

How cool is THAT!?

And yesterday marked another milestone for us. Yesterday was Lucas’ Kindergarten orientation and it went swimmingly!

He walked out of that building with a smile from ear to ear and he told me that he can’t WAIT to go back next week!

Now…to just try to keep that enthusiasm once he realises that he will be going to school for the next 13 years

I’ll leave you with a cute photo that I took in the classroom of Lucas and Harley sharing a chair and doing news together in Harry’s class.

SO CUTE!!

A no-brainer.

I’ve kept Harley home from school today.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And this afternoon?….

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

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

Definitely, no doubt about it.

I am the mother…

On a good day

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

And I seem to have lost my writing Mojo .

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

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

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

~~~~

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

However:

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

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

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

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

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

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

Yes this mother is fiercely loyal.

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

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

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

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

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

Yes. I am THAT mother

What kind of mother are you?

So what does fair mean?

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

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

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

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

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

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

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

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

She said:

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

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

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

How great was that teacher!

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

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

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

Exactly. They shouldn’t.

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

Don’t all kids deserve the very best?

Just a little food for thought……

Um yes, that’s MY son :)

 This afternoon my kids have made me laugh on so many occasions that I could almost write an entire post just by writing them all down here.

But I won’t. I have the sneaking suspicion that a lot of them were really only funny to me. You know – mother’s love and all that!

But I will say that my joy and delight in them lately has all been about choice. VERY much so.  This afternoon as I sat on the computer on a Skype call to a close friend in the UK – the boys were tearing around the house screaming and laughing like maniacs.

.

I turned around in my seat and bellowed at them “You boys are so bloody noisy, you can be heard in England at the moment!”

My friend and I giggled and Harley gave me a puzzled look. Maybe he thought I was serious?

Anyway, I’d better get this post back on track because there are a number of different tangents this could take if I don’t pull back on the reigns now! I want to write about the parent/teacher interviews that we had last night.

Mr Patient was going to go alone but I didn’t trust him to ask the right questions in the end we decided to go together and take the kids with us.

Well….it seemed like a good idea at the time!

First we headed over to middle school to meet Ella’s teacher.

We waited for our turn and Harley threw himself on the floor in absolute disgust because he was bored and didn’t make a secret of it which I thought was rather funny but Mr Patient wasn’t impressed!
Ella’s teacher is lovely and she got a fantastic term 2 report . One line in her report said : Ella is very accepting, I never hear any negative comments or actions from her…

THIS made me beam with pride because she lives in a household that is very different to those of her peers and it has obviously taught her to be more tolerant.

We explained to him that she lives with a lot of “action” (I think that’s what we called it) and that if she sometimes appears a bit distant or vague – it’s probably because she is dealing with a lot after hours. He smiled and said that students with “action” at home tend to mature quicker out of necessity and I know that this is definitely the case for Ella. She’s my right hand and my helper a lot of the time and I often have to remind myself that she’s only 11 and realise that the boys are not her responsibility.

He asked us how she is coping “socially” which I thought was an odd question for a male teacher to ask but then it clicked that maybe it’s been mentioned to him that I suspect that Ella is a bit spectrummy herself. I’m not sure but if this IS the case, – I’m thrilled! I answered by telling him that the 3 girls that she has recently bonded with have been an absolute God-send for us and that we haven’t experienced any of the bullying from previous years.

All in all – we didn’t need to stay and chat with him for long because Ella got a glowing report and we couldn’t be more proud of her

Next we walked down to junior school to see Harley’s teacher and the entire interview was absolutely hilarious. She told us little happenings from the classroom which made us both roll our eyes because we could picture them all-too-well! Apparently he’s the little class clown. NO surprises there!  Only I don’t think he actually intends to be funny. He just is!

One of the funniest things she told us was about the day that Harley wrote out a story and handed it in and she was unable to read it so she asked him if he could read it to her. She said he looked at it and then back at her and said: ” I can’t read THIS – whoever wrote this is a TERRIBLE writer,How do you expect me to read it?”

When she told him that it was in fact his story, he shook his head and said “I really need to learn to write better don’t I!”

Yep….that’s my boy! Cute as a button but he makes me CRAZY!!!!!

At least things are settling down here now – only 2 more school days until the kids are on holidays for 3 weeks.

Now….where did I put that Valium?

Releasing happy tears

Coming home with your report card,         

You looked at me and said;

“I’ve tried my best but school’s so hard,

It’s doing in my head!”

.

I smiled and then I reassured you,

That I only want,

For your best shot in all you do,

I don’t expect savant!

.

To see you learn the things that are,

An instinct for your peers,

Then do your best and try so hard,         

Just gives me happy tears.

.

It matters not what grade you get,

Or where you have been placed,

Nor if you are the teacher’s pet,

Because it’s not a race.

.

I love to watch you as you work,

And see your furrowed brow,

Your crooked wrist and little quirks,

That epitomise you somehow.

.

I never dreamed that life would be,    

This fast, full on or mad,

And filled with joy and ecstasy,

Though also sometimes sad.

.

Your days seem longer than before,

There’s so much more to do,

It’s why you feel so drained I’m sure,

Keep going son…. because I’m proud of you…….

The Posse on the hill

I’d be willing to bet that they didn’t think I would actually do it I – but I am always up for a challenge and this one is relatively easy for me.

For those of you wondering what on earth I am banging on about – let me explain:

A lovely group of Mums up at the kid’s school were chatting with me this afternoon about my blog. One of them jokingly asked me to write a post about all of them.

I smirked to myself because what they didn’t know was that I had already half written a post in my head after one of the ladies made a comment that had triggered a train of thought for me anyway!

She had said that often they called out “Hi” to me but noted that I rarely responded, but she knew that it was because I am completely deaf in one ear and assumed that I probably didn’t hear her.

And that is true and I’m really grateful that she has been giving me the benefit of the doubt, but it’s actually a lot more than that as well. I actually don’t even notice them either.

You see, most afternoons as I walk into school to collect Harley, my brain is usually caught somewhere between vague and tormented. I rarely look up because my eyes are fixed on Lucas who is known for his absconding and it’s the time of day that I am trying to prepare for the afternoon onslaught of emotional outbursts that are bound to occur.

I guess you could say that I am mentally psyching myself up.

As I walk, I go over the routine in my head so that when we arrive home, things will run as smoothly as possible. I know that Harley needs to wind down from keeping it together all day so I need to make sure everything is ready for his return.

Before I leave for school in the afternoons, I have his crashing corner (complete with cushions, bean bags and pillows) set up so he can get his sensory input so that I don’t become the punching bag, the kicking post and the sounding board.

I have afternoon tea already laid out because another trigger for him is to not know what he will be eating. It exacerbates his anxiety and really is a very easily solved problem.

I have dinner planned and written down on the whiteboard so he knows what to expect and I have his homework all ready to do on his desk.

The things that inevitably throw the order out of whack are little things like sibling rivalry, unexpected phone calls, and rain. He LOVES the rain but it sends him into a trance like state where he is rendered useless when it comes to concentrating or obeying commands!

So, each afternoon as I make my way to the school gate, I mentally tick things off one by one in the checklist in my head and brace myself for my little tornado to be released!

There is another scenario at play here as well.

This one is a little bit harder for me to write about. But you know what?….I think I’m finally ready! It’s more of a personal journey that I have been slogging away at for almost 4 years now and it started way back when Harley began school.

Other autism mother’s will surely agree with me that there is a part of you that is forever changed once that diagnosis is thrust upon your child. It’s like the protective parent gene that we all possess but magnified by about 10,000. It’s kinda hard to explain, but it’s a sense of taking that diagnosis on yourself as well.

It’s been written many times that when one member of a family is diagnosed with autism – the whole family is also. Because it isn’t like a broken leg or a case of the chicken pox – both of those things will eventually end, it is a life-long thing that doesn’t just affect one small part of your child’s life.

It affects EVERY part of their lives.

Triad of impairments which simply put are: difficulties with behaviour, socialising and communicating cover every area of a child’s development and is what all the spectrum have in common.

For me personally, Harley’s diagnosis was like I suddenly took on board all of Harley’s issues, emotions and pain like it was actually ME that was diagnosed. I felt every eye staring at me everywhere that I went, I felt incredibly judged and scrutinised and I was afraid to get close to anyone for fear of either myself or a member of my family getting hurt.

I suppose in hindsight that I can admit that I withdrew from people because it was just all.too.hard.

I was jealous of all the mother’s with their “perfect little NT kids” and I felt ostracised, alone and jaded. I kept my distance for a long time because it was like I had forgotten how to socialise. I no longer had anything in common with anybody and I just couldn’t cope with life.

Cue the nervous breakdown that I had last year when things became far too overwhelming and the elephant in the room that everybody refused to speak about just became bigger and bigger.

This should help to explain my seemingly odd, aloof and reclusive behaviour of late!

Then very gradually things started to look up. I joined an online support group for parents of children on the spectrum and I met a whole bunch of parents struggling with the same daily issues, walking on the same narrow and unpopulated trails and they were able to speak wisdom and love into me again. They “got” me!

They didn’t judge, they understood the heartbreak, the gut-wrenching pain and celebrated the small things with me.

Then I started blogging. I met hundreds of people in every corner of the globe who were also fighting the same fights but with different systems, wrestling with the same teeny tiny gripes and able to offer support and friendship to someone who so desperately needed to be accepted.

God met me where I was at and lifted me out of the pit and eventually, I was able to breathe again without my lungs filling up with disappointment, grief and regret.

I still have a lot of really off days, and I know that it will continue to be a challenge, but I guess it’s time to be out and proud: – I AM THE MOTHER OF 2 CHILDREN WITH AUTISM AND I LOVE MY LIFE!!!!!

And as for you gorgeous posse on the hill – I will train myself to look up, smile, wave and call out “Hi” back.

It’s never been anything personal. I just needed to find the sunshine again

The thankful mother.

She sat at the back of the room so as to not draw attention to herself and listened intently as the classroom teacher marked off the class roll. One by one the children answered: “Good morning Miss…God bless you” as was customary in this Christian School setting.  

All the while, her eyes were fixed on her little boy as she watched him kneeling and rocking from knee to knee back and forth in a steady rhythm.  He was still facing the front of the room and his eyes were looking at the teacher – but she could tell that his mind was elsewhere. He was daydreaming. He was smiling to himself so she knew that he was at least happy.

She desperately wanted to be given a peek into his world. To see what it was that he saw, to hear the sounds that he was hearing and to understand the connections that his brain was making.

His name was called and he didn’t respond. It was called a second and third time before a student sitting near him nudged him causing his trance to be momentarily broken and allowing him to confirm his attendance. Her son absolutely fascinated her. She wondered what he was thinking about that had made him appear so vacant?

She listened as the class teacher continued to give instructions for the first activity of the day and watched all of the children stand up and head for their desks ready to start their work.

All of the children except for her son of course.

He was still kneeling and rocking and staring into space completely unaware that all of the other children had moved on. He was happy but he wasn’t present.

Then she heard the teacher call his name and issue the instructions again. THIS time he jolted out of his trance and suddenly realised that the instruction was also intended for him. He stood up and walked over to his desk noticing for the first time that everybody else had already done so.

The mother was thrilled. She had taught this trick to the teacher herself!  She told her that a general class direction is often not even heard by her child and that his name needed to be put in front of the instruction so that he understood that it was also intended for him.

She continued to watch him slowly arrange his desk until it was perfect. He still hadn’t picked up a pencil to even start writing and knew that this was because it frightened him. She desperately wanted him to at least have a go but she knew better than to push it. So she hung back watching, waiting and willing him to give it a go.

The teacher had also noticed at this point that he was very slow off the mark. She bent down beside him and asked him to tell her what he wanted to say and told him that she would write it for him. She made a deal with him that she would write one word and he would write the next and her agreed readily to this arrangement.

This teacher knew what her child needed and was prepared to step into the role of “aide” for just a few moments even though she had another 19 students also to care for.

The mother smiled with tears in her eyes and gratitude in her heart for this wonderful teacher. The teacher who has a history of going above and beyond the call of duty for her students.

She knew that it would have been so easy to black list her little boy based on first impressions. She is fully aware that he is often restless and slow to follow instructions. He is physically unable to sit still and concentrate and he simply doesn’t understand the way that the other children interact and behave.

The teacher could have very easily have crushed his spirit by becoming frustrated with him or by constantly telling him that he was wrong or naughty. She could have yelled at him for his lack of compliance and became annoyed with his endless monologues and ridiculous questions but she doesn’t. She actually understands that he is very different.

She doesn’t judge him on what he can’t do but instead she rejoices in his achievements no matter how small or insignificant they may appear. She excitedly passes on these milestones to the mother who shares in her delight.

And for all of this and so much more: …the mother gets down on her knees every night and thanks God for sending this angel to her son.

She is peaceful and thankful and wonders how she will ever thank her enough but realises that the downside to having such an amazing teacher for her son this year is that she has left rather big shoes for subsequent teachers to fill!