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.

Executive functioning and visual aids.

Temple Grandin once said:

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

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

>> Source <<

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

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

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

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

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

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

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

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

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

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

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

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

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

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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.

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 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!

The helpers

OK….I’ve finally done it.

I have made a commitment to Harley’s teacher that I will now be helping in the classroom every Tuesday morning first thing.

I went along last Tuesday and again this morning and so far – it has been a really positive experience!  I have a lot of reasons why I’ve decided to do this and I will explain them now because I’m sure a lot of you are remembering this post from last year where I vowed and declared that I was NEVER going to set foot in Harley’s class room  EVER again!

But you see: THIS year, he is clicking better with his teacher and THIS year, I am a lot calmer in myself. I no longer come home and cry every.single.afternoon out of sheer frustration and exhaustion. I only do it maybe 2 days a week now

No, seriously……Last year, he was in such an emotionally fragile state that me coming in to his classroom completely threw him out of routine and made the afternoons hell for both him and the other kids who had to endure the meltdowns. The teacher suffered as well I’m sure.

Another reason that I am starting this is so that Lucas can get used to the whole “sitting, listening, working quietly” thing that is a totally foreign concept to him at the moment!

It’s lovely to watch Harley take him under his wing and share his seat with his little brother and guide him gently through the classroom rules He is such a proud big brother and seeing them like this makes it hard to believe that they are the same two boys who are constantly beating the snot out of each other at home!

It has been somewhat of a concern to me that Lucas would manage to conform properly for kindergarten next year but if I can teach him and visually SHOW him what’s expected now….it might help the transition to be easier.

He follows the other children (though not really listening to the instructions) and seems excited to be included.

Harley is always thrilled whenever we are in the classroom. He sidles up to me a lot telling all the kids nearby that I am his Mum…It makes me feel all warm and fuzzy!

The beautiful teacher handed me this today….It was taken last week when we were there helping…….

It brought the biggest smile to my face

.

Why I told my son to stay away from nerds.

Yes that’s right….I have told my child to stay away from nerds.  

Before you start thinking that I’m a horribly judgemental and awful parent – let me explain…

Firstly…my son is a bit of a nerd himself. He regularly spouts out monologues about his current favourite aircraft or favourite Ben 10 alien or something else equally inane.

And I tell Mr Patient all the time that he is also more-than-a-bit of a bit of a nerd himself!

I mean: his ever growing star wars Lego collection, his fascination with car makes and models, his love of all things related to science fiction, computers or technology is only a small snippet of why I think this!

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

But no, these are still not the types of nerds that I am referring to.

I’m talking about these suckers…

⬇

Harley’s teacher made a bee-line for me after school today because she was quite upset that another child had bought Harley a packet of nerds at the school canteen at lunchtime and that he had eaten the whole entire packet.

She wanted me to know how sorry she was for his consequent behaviour issues and that she had spoken to the other child and told them that they are NOT to buy things for other children ever again.

I assured her that I wasn’t upset with her and told her that Harley is getting to the age where he needs to take some responsibility as well! He is almost 8 and he knows that he isn’t allowed to eat something that’s THIS chock full of preservatives and colours!

The teacher was still not convinced that I was ok and then I saw him with my own eyes.

It.was.hilarious!

He had glazed over eyes and alternated between dazed out and hyperactive.

He ran and ran and ran and ran some more!

He yelled out a quick “Hi Mum” as he tore past me for the gazillionth time throwing his school bag in my general direction.

I laughed…I mean…. What else could I do?

Some kids are fine with food colourings in high doses…whereas others (like my boy) are definitely NOT!

And just because I’m a caring, sharing kinda gal…. Here’s a quick video of Harley taken minutes after we walked in the door this afternoon. (Of course Lucas had to copy his brother too…)

…

…

We’ve now been home for almost 2 hours and he’s still running!

Which is flipping FANTASTIC!

Not.

The pain of not knowing.

And so ends another school week.  

It is now only the 3^rd week back since the Easter holidays and Harley has already had enough.

He’s decided that school is not for him and told me that he thinks he might stay home from now on.

So …yeah….great news eh!

I think that the major issue that we’re dealing with (and have been since day dot with him) is anxiety.

I mean…..How many kids actually chew off their knuckles because they’re not coping?

He is also still struggling with impulse control (of lack thereof!) and the ability to predict the consequences of his misguided actions, and has been in trouble EVERY afternoon at home this week just for doing really really silly things.  *sigh*

It does help a little by knowing that the anxiety in him is all part and parcel of having an ASD, but just simply knowing doesn’t make it go away.

No – I now need to find some more effective ways of working with him to overcome these massive hurdles because we’re tripping on every damn one of them this week. Everything that I see him doing at home , all come under the 5 major diagnostic criteria points for aspergers syndrome.

****

Firstly, we have : Communication impairment – Harley is unable to effectively communicate the “whys” of his behaviour to me and is only able to say things like: “Because my body tells me that I HAVE to do it”. (It sounds like a pretty well cooked up excuse but I know that he really DOES have uncontrollable urges and these frighten me).

He KNOWS that he isn’t coping but because I really don’t believe that my boy even understands the reason why himself – he is unable to convey it to me so it all comes out in meltdowns and aggressive behaviours instead.

Another characteristics of AS is : Social impairment – Lately Harley has been blatantly rude and disrespectful to me, and has said some really inappropriate comments to anyone who crosses him. He isn’t suffering fools kindly – if he doesn’t like you – he’ll tell you.

I hate this and it goes against every value that I am trying to install into my kids.I desperately want to train them to love one another and to treat people with respect but there’s really no point explaining to him that he’s being rude until he’s in a clearer frame of mind, because otherwise it simply goes in one ear and out the other.   And sadly, those rarely seen calmer moments are few and far between at the moment.

He’s also having his: sensory sensitivities attacked at the moment. This is a major contributing factor to his anxiety and is apparent right now in his aversion to eating anything but plain rice, gluten-free bread gluten-free pasta and crackers. I have had massive dramas by trying to even feed him this week.

This anxiety/sensory aversion merry-go-round is ridiculous and is quite the vicious cycle.

The difficulty with change issue is also a biggie this week because Mr Patient has been away with work for most of it.  Even though travelling with work is something that happens regularly – the unpredictability of it throws Harley into a tailspin every time. Even when we I think I’ve adequately prepared him, he still gets greatly affected by this major change.

And lastly, repetitive and obsessive behaviours. This one sucks. I hate it because it drives me crazy.  I hate watching my son lining things up, counting and re-counting AND recounting things over and over again in a desperate attempt to soothe himself.  The pacing, the rocking, the stimming and the rituals have been kicked up a notch (or twenty) this week.

He is experiencing a lot of physical symptoms too. (Stomach pains, headache, insomnia and big bouts of inattention and irritability).

So….what to do?

I honestly don’t know right now.

I don’t know where to start because I don’t know what’s going on in his little brain.

What I would give for even a small glimpse into his inner workings. *sigh *

I DO know however that I will be spending a LOT of time in prayer and trying to rest in the knowledge that even though *I * don’t know the answers: I serve a God that does know.

And that simply has to be what I’m clinging to right now.

Have a great weekend all…..

♡

Fi x

Confessions of a helicopter parent.

According to Urban Dictionary:  A Helicopter Parent is a parent who hovers over their child, is controlling and extremely over-protective.

Well yes, I guess that term is very fitting when applied to a parent who is unwilling to cut the apron strings from their typically developing child and let them discover life on their own BUT, in my opinion…..this term should not EVER be applied to parents of children with special needs.

For most of us – it is definitely NOT a choice but instead – a necessity.

I would LOVE to be able to just drop my child off at school in the mornings and go about my business but you see….this is a pipe dream for me. I don’t hover because I don’t trust the teaching staff or the school…..I hover for MY SON’S sake…..NOT mine.

And that  my friends, is where I believe the difference lies.

When God blessed the parents of spectrum kids with these children, he also gave us enough grace to deal with the massive responsibilities that come as part of the autism package.

The simple fact is that with autism spectrum disorders- part of the diagnostic criteria is that the child has impairments in socialising, communicating and has restrictive or repetitive behaviours.

 

And in essence, what that means is that throwing your child in the deep end and letting them dog paddle their way through is not only stupid but very very cruel!

***

I have a very emotional story to tell now and I need all of my autism mother friends to wrap their virtual arms around my shoulder as I write because I’m particularly fragile this morning.

Ok?

Thanks..

I sent Harley to school today with both of his hands bandaged up because he has let his anxiety overwhelm him again.

He has licked, sucked and literally chewed his knuckles again until they bled. They are red raw, weeping, bleeding and really majorly gross to look at. He is in dreadful pain and was whimpering as I gently bathed and dressed his wounds this morning and it broke my heart to see him like this.

He looks like a little teddy bear with his paws all wrapped up and as a result, is unable to perform simple tasks like cleaning his teeth and getting dressed unassisted.

I went up to school just before recess to drop off his blazer that he had forgotten and signed in and went down to his classroom to change the dressings on his hands.

The beautiful office ladies would have done this for me but I knew that Harley wouldn’t have responded well to someone else touching his sore hands so I opted to go in myself. (yes, that’s right…..hover, hover, hover).

He was SO excited to see me and Lucas. He ran over to us giving us both HUGE cuddles and announced loudly that his Mummy was here and telling all his friends how much he loves me! (I developed a speck of dust in my eye as you could imagine!)

I hugged him back, took him aside and re-dressed his hands and helped him to get his blazer on. He went back to his desk and sat down and arranged his books in front of himself proudly.

I told him that it was time for me to leave now and that Mummy would see him in a few short hours. He nodded and said his goodbyes to us.

I walked over to the teacher to say goodbye and she started chatting with me about the great progress that she’s noticed in him lately and I beamed with pride.

All the while, Lucas was tugging on my leg so eventually I followed his pointed finger with my eyes and then I saw it.

Harley was leaning forward with his head down, staring at his work. He had his pencil awkwardly grasped in his bandaged hand with tears streaming down his little face. He was TRYING SO DARN HARD to be brave but the tears kept flowing. I watched him wipe some of them away with his little white paw and I could tell how much strength this required on his part.

I walked over to him, crouched down and put my arm around his shoulder and asked him what was wrong.

“I can’t do what everyone else does Mummy” he answered.

“What do you mean honey?” I replied.

“I can’t even hold my pencil, I can’t read and I can’t stinkin write, I’m so stupid” he sobbed.

“YOU ARE NOT STUPID” I practically yelled, LIVID that my boy’s anxiety was consuming him and I started to wonder if coming into the classroom was such a good idea after all.

His gorgeous teacher stepped in and assured me that she would look after him so I thanked her and gradually made my exit once I knew he was ok.

I DO trust that his teacher can deal with this. I DO trust that she has only his best interests at heart but I want everyone reading this to know:

My kid ALSO needs me.

Call me whatever you want. A helicopter parent, a smother mother, a freak, WHATEVER, but when my child is in this much pain just from a task as simple as “being” in a classroom full of kids who can naturally do all the things that he struggles with….. I will not back down and leave him to his own devices.

It’s not a simple case of parental separation anxiety here.

I am not trying to control the school, the teachers or the environment.

I just want to parent my child responsibly and effectively and for ASD kids – that means hovering, asking questions, making requests and sometimes….being a pain in the butt.

I WON’T apologise for being my child’s biggest and loudest advocate. I do not want to look back in five, ten, fifteen or twenty years time full of regret that I didn’t do more to help him navigate this frightening and overwhelming world that we live in.

And I will ALWAYS be the parent that you see waiting patiently by the classroom door to “have a quick chat” with his teacher.

I don’t want to know if he aced his spelling test, or ate his sandwich or got all his sight words correct….I couldn’t care less about these things…..I just want to know if my little boy managed to simply survive!

So if you’ll now please excuse me ….this helicopter needs to go and re-fuel – tank is getting empty : )

The amazing train journey!

OK , I’m ready to write about one of the most awkward/amazing/un-imaginable days I have had for a long long time!  

image from railpage.com.au

For those who don’t know what I’m rattling on about….let me give some brief history here.

Sunday – Mr Patient drove the children and me up to my mum’s for the Easter school holiday break and had booked a flight to come home that evening so he’d be back home in time for work the next morning.

It was a very kind offer to drive us as he knows how hard it can be to drive that far alone. So you can imagine his annoyance when he logged onto the computer to confirm his flight and realised that he had actually booked it for the day before by mistake!!!

After a few frantic phone calls to the airline, he soon discovered that there were no free seats on a flight for that evening OR for the next morning, the only possible alternative was to turn around and drive all the way back home almost immediately.

Mum and I were concerned about him doing this alone as he was obviously tired from the long drive we’d  just had so made an on-the-spot decision that I would go with him to share the driving and she would mind the children overnight at her house.

We went and booked me a train ticket for the next morning then set off on our way.

And I do need to add how very proud I am of my children that they coped so brilliantly with such a huge and sudden change of plans thrust upon them!

So…fast forward to Monday morning……

I am wandering around alone and slightly lost at Sydney’s Central railway station…..(this place is HUGE and overwhelming) and I spot a familiar face. It was Miss K. She was my English teacher in high school and was known for scaring the pants off her students with phrases such as: “I am neither your friend nor your acquaintance. I am your teacher……do NOT cross that line”

Before I could stop myself, I find myself (obviously delusional with relief at finding someone I recognised), call out “Miss K, It’s Fiona!….Fiona S  from *** High school!”

Her face lit up and she greeted me like a long lost cousin and invited me to join her for breakfast. How could I refuse? It was clear that I was lost and also that we were both catching the same train to my home town.

She asked me to call her by her Christian name but there was NO WAY that I could bring myself to do that!

So over toast and tea we chatted and reminisced. She asked to see photos of my children (which of course I happily obliged) and I received my FIRST grammar lesson of the day!

She commented that the children all had lovely shiny hair and that they weren’t as dark as I am. I said:  “Yes, they are all mousy”.

She tutted me and said:  “One must NEVER reply to a compliment with an insult”.

My face must have given my confusion away because she followed with : “Mousy’ my dear, is how one would describe the drab personality and character of an individual that one no longer wishes to associate themselves with”.

“Err no”, I replied….. “I just meant that their hair is lighter than mine but not really blonde either”!

We filled in about half an hour chatting and noticed that it was time to head towards the platform to board the train. I excused myself to go to the bathroom wishing her well and safe travels.

I had just entered a stall and hung my handbag on the hook when I hear “Fiona…Oh Fiona my dear…..Our train is leaving from a different platform than we originally thought. I shall wait here for you and guide you to the correct one.”

Oh-kay!  I was glad no-one could see my face!

I walked with her over to the correct platform and she asked me what carriage I was in. I looked at my ticket and told her “D”.

“Oh , how lovely”! She replied.  “As am I”!

It was a mostly empty carriage so she asked me to sit in the seat across from her so we could continue chatting and I did until a few towns later  when a couple arrived and I was in their seat.She offered me the one RIGHT NEXT TO HER! So I felt it would be rude to say no so there I sat for the rest of the journey!

At this stage, I had already mentioned to her that 2 of my children were on the autistic spectrum and had explained how life with aspergers looked through my eyes. But over the following  4 or 5 hours – I was able to explain in great depth how diverse it really can be from individual to individual.

The Country Link staff member who checked our tickets and walked through the carriages from time to time taking our rubbish and attending to us was wearing a blue ribbon on his vest, so naturally I asked him what it was in support of and was disappointed to learn that it was in fact only for the recent Victorian flood victims.

I had intended to inform him that it was also autism awareness month but before I could open my mouth – Miss K was saying very matter-of-a-factly : “Young man, are you not aware that April is autism awareness month. This young lady here is the mother of 2 children with autism. Maybe your ribbon should be for BOTH of these worthy causes”.

My mouth dropped to the floor!

I was starting to see another side of this wonderful lady!

We continued chatting about her travels overseas since she retired a few years ago and her history knowledge was remarkable! She could tell me a fact about every small town that the train rolled through!  She cheekily told me which of my past teachers she suspected had aspergers and informed me of who was still teaching, who had retired, who had died and who she wishes had!

The conversation flowed beautifully until she asked me what I did in my spare time.

Of course I gave my usual answer of: “Spare time? What’s THAT?” to which she tutted again and rephrased the question to ask me what I enjoyed doing. What brought me the most pleasure in life and what would I most like to do if ever I had more free time.

I didn’t have to think about it because I’ve realised lately that I really, really love writing.

Not necessarily blogging, but I have a couple of notebooks and journals that I jot down my thoughts and poetry into. These are my safe places. The places that I can write whatever i want. Whenever I like.

None of it is open to public scrutiny and none of it has to be grammatically or punctually correct. I write it for me and me only.

She asked me if I’d ever had anything published. I told her no.

But then I remembered that I contributed to a new just released book called ” The Autism Experience”.

You can click on the book image on the top right of this page to order your own copy if you haven’t already.

This wonderful book is the brainchild of my friend Valerie Foley who compiled and edited and marketed this book brilliantly! It is full of parent’s stories from all over the world and how they live their lives with autism as a part of it.

You can also visit Valerie’s amazing blog Jump on the rollercoaster but make sure you promise to come back here afterwards. I’m not a professional writer like she is!…….and of course Miss K asked me how I became involved with this.

So I had to tell her about my blog.

I said it quickly hoping she’d not pry and I was even smart enough to get out my iPad and show her tha
t I was unable to connect to a wireless connection so therefore couldn’t open my blog.

 But she was smarter and more switched on than I had given her credit for!

“Why don’t you show me on your iPhone dear…..I saw you fiddling with your emails earlier so you must be able to access the internet through that!”

Then she winked at me and I knew I was beaten.

After much fiddling and sweating, stressing and panicking, I finally settled on *this* post.

It was one of the first posts that I ever wrote and it is specifically about my son Harley and how autism looks on him.

As she read it, I could feel my heart throbbing, my hands sweating and my mouth drying up. As much as I told myself that her opinion didn’t matter to me- I knew deep down that really…it  did.

She finished reading and turned to me and said: “Wow, that was beautifully written. You know your child so well.”

Finally I exhaled.

She then completely surprised me by adding….: “You know what Fi (and I nearly collapsed after hearing her shorten my name!)…..“If I had have been shown something like this when I was teaching, it would  have made me a better teacher!”

And with that…..we sat side by side like old friends smiling as the train continued its gentle clickety clack, rocking motions until we eventually rolled into town.

She spotted my children waiting on the platform before I did. I helped her disembark from the train and I turned around after hugging my kids only to see her red cape-style jacket disappearing into the crowd Mary Poppins style!

I don’t know if we’ll ever meet again, but I really hope we do

 

My plan is working! …(so far)!

As I’ve written about before….One of the areas that Harley REALLY struggles with is handwriting….

It is a common problem for children on the autistic spectrum and Harley’s fine motor skills are also greatly lacking.

* This is a page from one of his most recent homework efforts:

That took him almost 2 hours every night because of the mammoth effort I had to put in just getting him to even SIT at the table!

And as for getting him to follow the instructions and write in coloured gel pen, texta or coloured pencil on Wednesdays…..FORGET ABOUT IT!

I have enough trouble already. I absolutely hate afternoons because it’s never fun fighting and fighting and fighting with your child to do something that I personally couldn’t care less whether he does it or not *sigh*.

We have the tears, the head banging on the table, the sobbing out loud, the “I cant’s” and ultimately…..a meltdown.

EVERY FREAKIN’ DAY!

So I eventually reached my limit, I cracked and decided that I had to come up with a plan because this simply couldn’t go on another minute.

I went and saw his teacher and told her that Harley has to do writing at his OT once a week and also at Social Group and I stressed that he was definitely getting enough practise and help with his handwriting. (Even though to look at it, it is hard to believe).

I got her to clarify that it was mainly the reading and spelling that they were supposed to be working on with their lists and she confirmed that yes it was.

I then asked her if it would be ok if I could try out a little something that I came up with instead as long as he learnt his words and could read and spell them.

She agreed wholeheartedly and this is the result…..

I simply attach the photographs of him making his words to his homework book and he hands that in along with his maths sheets and home reading record book.

I gotta tell you…it’s a win-win here!

It’s so wonderful when you find teachers that actually care enough to work with you and your child!

And the Madhouse has returned to (our version) of peace!

**Our version still contains random yelling, jumping, running, punching and fighting, but a lot less tears and hysteria!!

I love you Ms Larkey!

This morning at Lucas’ early intervention group, we watched a DVD of one of Sue Larkey’s seminars.

image from suelarkey.com.au

I was the only egghead who took notes during the DVD this morning because I crave ASD info like chocolate at the moment. I believe information is POWER!

For those that aren’t familiar with Sue….you can read about this amazing woman here.

And I’m not sure if this link will work , but you can visit her on facebook here.

I have written down here the main points that resonated with me and although this is longer than my usual posts – I hope you take the time to read it because Sue is a fountain of wonderful information!

What I find fascinating about autism, is that you can never know everything there is to know about it.

There will always be new information just around the corner and often things that you’ve heard before but forgotten about are brought back to your memory when it’s triggered by another point.

And lets face it: Parenting a child on the spectrum will continue to be a learning curve forever!

In this DVD, Sue said that back in the days when we as parents went to school- the teacher would start Monday mornings by writing the date and the day on the board and asked everyone to copy it into their notebooks.

Nowadays it is a lot different.

Because nowadays the teacher will often start Monday mornings by asking the children to write a short story outlining what they did on the weekend.

Sounds easy enough right? Well, no…..not if you’re a spectrummy kid. This is a task akin to climbing Everest!

Sue said that the biggest problem in education today is that it has become too problem solving based .

She then said that these children are unable to problem solve without asking for help which most of them don’t do. (Don’t know HOW to do).

So they either become disruptive, get up and move about or sit there holding their pencil in mid air and have nothing to hand in as a result. (That’s Harley right there!)

The solution is for parents to take photos of what the children did on the weekend and send a few of them to school with them to use as visual prompts.

For example: They look at the photo of the soccer field and they are then able to write about their recent soccer game.

Or they see the photo of the park and they are then able to write a short story on the scooter riding they did on the weekend.

(This is all wonderful but I have to admit that it overwhelms me a little….there’s a lot of organisation and planning ahead that needs to be done on my part until it becomes habit!)

Sue then went onto further illustrate the importance of teaching our kids to find other ways to communicate by using the “French Patisserie” analogy.

In this analogy, she asked us to imagine that we had boarded a flight to Paris, and after we had touched down at the airport , we caught a cab into the very heart of this famous city in search of one of their much desired patisseries. But upon arriving at a patisserie, it occurred to you that you had left your purse in the taxi which was now long gone.

You didn’t speak ANY French and had absolutely NO other means of getting any Euros.

None whatsoever.

You didn’t know a single soul in Paris and you had no access to an interpreter at all. Add to that the fact that you were starving and hadn’t eaten in a couple of days.

(She also told us that we were to imagine that we were NOT allowed to use ANY gestures or facial expressions) to convey our message to the baker that you wanted one of his mouth-watering delights.

So what would you do?

* Would you try the “snatch and run” technique?

* Would you start yelling at them loudly in English HOPING that they would understand what it was that you wanted?

* Would you begin pacing up and down the shop “hoping” that someone notices and steps in on your behalf and offers you assistance.

* Or would you throw a fit because you were SO hungry and SO frustrated at the circumstances surrounding and overwhelming you that you didn’t know how else to respond?”

Wow….you can see where she was going with this!

And it’s true….I was then able to put myself in my child’s shoes and imagine how hellish and difficult their lives must be at times!

I have noticed my boys respond in all four of these ways at times and it all made me even more determined to equip my kids with all the necessary tools they need to survive!

Sue also pointed out the absolute importance of how we use our words to speak to our children.

For example: Imagine an autistic child lining up all their Thomas engines.

Now….Where is the child?

They are sitting in front of or behind the engines looking at them. They are NOT a part of this line up.

So when a teacher asks a spectrum kid to “line up” and they don’t …it’s because there was no reference made to the fact that they were supposed to be a part of this line up.  It’s rarely disobedience.

They usually stand back and watch the other kids…line up! Just as they would with the Thomas trains!

The next point was: Processing and hearing are different things.

Often our ASD kids simply cannot put high and low frequencies together.

Ie: they hear BEST when things are said in simple language with a monotone voice.

And she’s right…often when I’m frustrated with their behaviours or a situation, I will raise my voice and shriek something like: “FaroutIcan’tbelieveyouhavegoneanddoneit againwhenareyougoingtolearnit’sdisgustingandIhateit!”

And I’m met with blank stares.

But when I walk up and physically touch one of them on the arm to get their attention and say in a calm, steady monotone voice:

“Would you please stop blowing bubbles in your drink. Thank you”. I get instant results.

Interesting hey!

Another tip is to make sure that you use their name in the sentence because often our kids won’t realise that the request is for them as well if it’s said in a generalised form.

ie : In a classroom setting, if the teacher was to say:

“Alright everyone, after lunch it’s library time so make sure you have your library bags ready to go as soon as we come back after the bell” our kids would likely not hear the request or know it was also intended for them and end up in trouble because they appear to be disobeying the command or not complying.

Instead, the request should go something like this:

“Alright everyone, after lunch it’s library time so make sure you have your library bags ready to go as soon as we come back after the bell”.

“Harley (waits for him to look up) please get your library bag ready now”.

And it wouldn’t matter if the general request went over his head because he would be receiving the small part of information that he required to complete the task.

Is anyone else having light bulb moments here too?

There are three more quick points that really stuck out at me so I’m sorry if this post is too long but I really lapped this up and I wanted to share it!

Firstly: If your child needs to wait, then this causes anxiety more often than not.

Solution…..give them something to hold. This object then becomes their focus NOT the fact that they are waiting.  And try to keep waiting periods to a minimum because anxiety increases the longer they need to wait.

Secondly: These kids communicate better during movement.

We all know by now that asking your child to “look you in the eye” causes them to shut down their processing as looking in the eyes renders them unable to listen at the same time, so allow them to look “in your direction” but not at you. And MOVEMENT is the key:

Walking and talking at the same time is brilliant for these kids.

The sensory input they are gaining opens up a part of their brains that then allow them to  process what you are actually saying.

If you make them stand still and look at you, you will only get stock standard answers…..ie : “I forget”, “I didn’t do it” and “ I don’t know”.

And lastly: The myth that we shouldn’t still be providing visuals for our kids when they reach high school.

Not true.

She explains this brilliantly by asking us to imagine a child in a wheelchair….

Now…when that child starts kindergarten, what will they need to access the school grounds? A ramp.

And when they start secondary school will they still need a ramp?

And yes definitely for college or university.

The circumstances change ie: In kindergarten, the mother would most likely push the wheelchair into school for them and pack their school bag and hang it on the back of the chair.

In Secondary school, they would probably be then able to wheel themselves up the ramp having packed their own bag and by college, they would now be possibly even able to manage a few small stairs.

But the fact remains that they will ALWAYS need a wheelchair and that won’t change.

Just like our kids…..they will learn coping techniques, survival strategies and self regulatory inconspicuous movements but they will STILL HAVE AN ASD!!!!

So for a high school teacher to look at one of our kids and say “He looks fine to me, he won’t need visual reminders or verbal instructions” is like telling the child in the wheelchair to stop being an attention seeker and forcing them to get up out of the wheelchair and walk!

(the room was filled with gasps then!)

Please let me know if this helped anyone. We will be watching the rest of the DVD another day and I’m happy to be the little dork and take notes again!

Busy and tired!

So, it’s been a wild week in the Madhouse.

I’ve been crazy busy and waiting for this ride to stop so I can step off!

 If you write a blog and I’m subscribed to it…..please know that I probably haven’t read it yet but I will hopefully get around to it soon.

Erm….sorry!

 I’ve also got 142 unread emails in my inbox. Yes… 142!!!

It’s due to my computer developing a problem with syncing my emails to my iPad and iPhone, so if you’ve written to me and I haven’t responded…..I’m not ignoring you. I just have had to wait until we can fix this glitch.

 Ugh!

 As a result of this : I have so much to write about, it’s hard to know where to start so instead of trying to write about it all, I will just list a few things in point form!

•  The school that Ella and Harley go to, have asked me to get a cognitive and educational assessment for Harley.

 Basically…..we need to discover his potential and ability and get his results to match that!

Now all of you long time readers will attest that  I’ve whinged before about the OT that he had last year and what a complete waste of time and money that she was.

Well guess what? I have finally gotten rid of her! And on Wednesday, Harley started with a brand new OT who specialises in Functioning OT.     So far, I’m really impressed!  She did a motor assessment on Harley and has told me that she has observed a LOT that she needs to work on with him.

I’m not surprised by this because the previous OT was hell-bent on the sensory stuff (which is also important) but she rarely did anything to help him with his writing and fine motor skills.

As a result, his writing is now at a 4year old child’s level and he is turning 8 in a few months.

Ho Hum.

 She also told me that she is going to enjoy working with ‘ME’. (My humour – or rather my ‘sarcasm’ must have appealed to her!)

•   Lucas’ early intervention pre-school has just called me to advise me that there is a place for him to start OT with one of their therapists (who is awesome) so I’m VERY excited about that too!

He is coming in leaps and bounds with his speech but he really struggles with motor skills and has huge sensory needs.

•  The kid’s school has also asked me to get an assessment for Lucas before they will even consider interviewing us for enrolment for next year. I partly understand where they are coming from, but I am also annoyed because I (naively) assumed that he would be instantly accepted because the older two kids go there! Not so….. But he has his assessment on the 29th of this month so I will have to wait and see how that pans out.

 

• Ella turned 11 on Thursday! I can hardly believe that my girl no longer looks like this:

 

•  My mum is down at the moment and she helped us celebrate Ella’s birthday.

Last night – We took Ella and 5 friends to a Pizza place for dinner and then to the movies. It was a fabulous night and I was thrilled to see her so happy! School has been shocking for her up until last year as she has been mercilessly bullied by a group of girls that thankfully are no longer part of the crowd she associates with. So for me – it’s exciting that she is finally fitting in!

•  Today we had a “family” party for her with Mr Patient’s Mum coming over and with my Mum still being here we all went to play Mini golf. Ella’s BFF *Emma came with us too as she slept over after the movies last night.

Golf was wonderful! And we were pleased with how well the boys coped with it all, so we all decided to go out and have morning tea at a local coffee shop afterwards.

Wel….it seemed like a good idea at the time!  We hadn’t taken into consideration all the sensory overload that the golf centre had provided and the many different people that he had to come into contact with.

Unfortunately it didn’t take long after we sat down for Harley to start to lose his composure and the wheels started to fall off in a BIG way

Thankfully – I keep a black pashmina in my handbag most of the time so I quickly wrapped it around his shoulders and draped it down over his head, gave him my phone to play with, and he sat in his little blackened cocoon and we were able to get him down reasonably quickly.

Afterwards when we got home for lunch and fired up the BBQ,  I patted myself on the back, SO PROUD of myself for being such a great mother and handling the situation so well. However……Harley sat down on the rug to play with one of his Sonic toys and when the leg broke off……ALL-HELL-BROKE-LOOSE!!!!

 The poor child screamed, thrashed, cried and rocked for almost 45 minutes.

And the ONLY thing we could do was wait it out. NOTHING was working. All the things that usually work weren’t working either.  We tried wrapping him, giving him his teddy, carrying him to a quiet room, and holding him tight whispering “shhhh” but they were all useless!

 None of us knew what to do as it took all of us by surprise because we didn’t recognise the warning signs (which in hindsight was the mini meltdown in the coffee shop) and we had wrongly assumed that by the time we got home again, the worst of it was over!

It hadn’t occured to me that it was only a bandaid solution and that there was a LOT more to come.

It absolutely broke my heart to see him so emotionally distraught and completely non-verbal except for the grunting, yelling and sobbing, and I think Ella’s friend *Emma got a bit of a rude shock seeing him in full swing.

 She knows he has autism but I think that this is the first real dose of our reality that she has experienced.

 I HATED feeling so disconnected from Harley and unable to soothe him at all. It was a dreadful and heart -wrenching feeling of faliure for this mother, but at least I have now made a mental note to observe him closer and recognise the signs sooner so that it doesn’t reach that level of explosiveness again!

Another lessoned learned!

Anyway, my main goals for this week are to catch up on my emails and blog reading- but I have to be honest: I’m really not liking my chances of that happening because my Mum is still here for another few days and I would choose spending time with her over ANYTHING else in my life right now!

Haha!

Ave a good weekend peoples,

 Luv yous all!

We hit the jackpot!

Well, I don’t really have a full blog post in me, but I just really wanted to shout out some more great news!

I mentioned in my last post that Harley has a wonderful new teacher in Mrs D.

I also wrote that he only has her for some of the week. The other part of the week he has Mrs P.

Imagine how excited I was when yesterday I went to have a chat to her after school and she was telling me that she is also reading The out-of-sync child and that she herself has a son with sensory processing disorder!

And then she told me that she understand Harley’s need to move a lot more.

We definitely hit the jackpot here!

One teacher has a special needs child and the other one has a child with SPD!

Now……who says that prayer doesn’t work huh?

A smile from ear to ear …

Tonight we had “meet the teachers” night at the kids school.

It.was.awesome.

There have been a change of plans and Harley now has a new teacher.
(Actually….he has TWO new teachers )

The teacher that he has had all this past week is going to have the class for some of the week ….she is fantastic. (Harley LOVES her) and for the bigger part of the week he is going to have an amazing woman that he had for only ONE day last year as a casual and she was so fabulous, she inspired me to write this post..

That’s right….I love her so much that I simply HAD to thank her via my blog

I mentioned in that post that I met her for the first time through a mutual friend before I even knew she taught at the school and I knew I loved her the first time I met her.

She is ALWAYS smiling and compassionate and loving to all children.

After the announcement was made and the parents were ‘dismissed’ , she came and gave me a hug and told me that she was concerned how all this was going to affect Harley and promised to make this an unforgettable year for him.

I had tears!

I came home and told Harley and he threw himself all over the house whooping and hollering and happy dancing

And here’s the kicker ……  She has a child with a special need herself

I can’t believe how blessed we are. Things are looking up in the Madhouse….

Today

I was woken up this morning with a wet sloppy kiss on the cheek and I opened my eyes and saw a very excited Harley standing in front of me beaming!

Herald sun image

I sat up and looked at the clock on the bedside table.

5:50am.

I blinked and rubbed my eyes then checked it again. Yep – definitely too early to be happy about getting up!

It was then that I noticed that he was completely dressed in his uniform so I dragged myself up and followed him out to the kitchen. He didn’t walk – he  skipped and flapped his hands happily.

He spent the rest of the morning telling me about which bey blades he was taking to school and I have to admit, I kinda switched off after a few minutes of his boring monologue but still nodded and Uh-huh’d in all the right places 

Ella was very quiet and got dressed and ate breakfast quickly but she was very reserved. I could tell that something was bothering her but she flinched when I asked her so I decided to wait until she was ready to talk.

I guessed that it probably had something to do with Sophie but it turns out that I was wrong.

Long story short….Ella’s apprehension was due to the fact that she didn’t know what to expect, she didn’t know who her teacher would be, where her classroom was, who would be in her class with her and how she was going to cope.

She told me this afternoon that she felt sick all the way to school from worry but didn’t tell me in case it made things harder for Harley.

Hmmm…makes more points for chasing her a diagnosis me thinks…

Fortunately, Ella got exactly the teacher that she desperately wanted and her BFF * Emma is in her class and……*drumroll please*…..Sophie is in the other grade six class.

Woohoo!

As they left the assembly hall, Ella and Emma were very noticeably thrilled and couldn’t get the silly grins off their faces!

****

In the car this afternoon on the way home, Ella told me that she had a bit of a confrontation with Sophie.

I asked her what happened and she said that Sophie folded her arms across her chest and walked up to her and asked in a mean voice what her Mum’s problem was on Friday?

I was now on the edge of my seat wondering how my little girl handled this and I was as proud as punch when she said:

“I didn’t say anything Mum.  I just turned and flicked my hair at her and walked away”.

THAT’S MY GIRL!!!!!

See peoples…..I have taught her well….when *I* was her age, I would’ve probably said something sarcastic and cutting and ended up letting my tongue get me in trouble again!

At least I’ve done SOMETHING right!

The lovely Miss Lucy

There’s one happy Mumma in this here Madhouse!

Things seem to running quite smoothly a for a change. This afternoon I had to go down and register Harley for the therapy that he attends called *Social Group.

This group is run by a wonderful lady called *Miss Lucy who has so many qualifications in autism, special needs and teaching that it’s impossible to remember them all let alone list them.

Suffice to say that she is an ASD legend!

She runs workshops, works NATIONALLY with schools and is well-known throughout autism circles in Australia any we are SO blessed that she lives and runs this group in our own local area

At the group, the children (some with a diagnosis, some without) are taught a whole range of subject such as:  reading, writing, social skills, appropriate behaviour, bullying, personal space, understanding emotions and communication.

They are helped “personally” with any difficulties they might be experiencing at home or school and Harley just loved going last year.

As you can imagine…..places fill very quickly and there is a long waiting list to get in.

We feel VERY blessed.

Despite being so in demand , she is so beautiful that she is not above talking to Harley on the phone if he’s having a hard afternoon and doesn’t want to go to Social Group.

WOW!

Just today, she emailed all the families some wonderful resources that we can take to the class teachers at the start of school (which is great timing as we are meeting the teacher tomorrow) and the best bit……she took the time to do a 10 things list for each and every child so that they can also give that to their teacher.

(This 10 things list was inspired by  Ellen Nothbohm’s book.)

And I for one – was floored when I read Harley’s.

(crappy scanning job, I'm sorry!)

She knows my boy SO WELL and explained him and his struggles magnificently!

But….here’s the best bit……

This year due to having a larger number of girls- she has decided to start a girls group and she still had 3 vacant spots so I was able to secure a position for Ella!

Ella is ecstatic about this and so are we!

I also asked Miss Lucy if she could please let me know after a few months if she (in her professional opinion) thinks that I need to pursue a diagnosis for Ella as her opinion holds a lot of weight and I know that things would fall into place a lot easier with Miss Lucy on side.

So…the wheels have already started turning on what I am determined to make a fabulous school year.

Let’s see if I’m still this happy once school is back in full swing and the routines and homework and playground struggles start.

Ugh!

Nope…..not going there just yet.

I’m enjoying the “happy place” too much

* Names changed to retain her anonymity.

Live and learn

Well as of today, it’s officially one week until the kids go back to school to start their school year.  

Ella is starting year 6 and Harley year 2.

Lucas was going to start Prep but because of the trouble we had toilet training him, we had to hold him back another year.

The good news is….he is now fully trained! (Finally)…YAY!

But he will now do another year of pre-school instead.

This past week has certainly been an eye-opener for me. I’ve discovered a lot about myself and have identified some areas that still need some work.

Like school for example.

It’s been no secret throughout this blog that last year was complete hell for Harley and also the rest of the family as a direct result.

This time last year I was excited about my little boy starting year 1 and he couldn’t wait to see his friends again.

I’d already been in and met his teacher and had a face-to-face meeting with her which I left feeling elated, confident and I was full of a healthy (I thought) anticipation.

But the wheels started to fall off in a big way, only weeks after the school year begun.

The teacher didn’t cope with Harley and he was a complete mystery to her. She was at a loss as to what to do with him he sensed this, and as a result, he quickly spiraled downwards into a sea of uncontrollable emotional outbursts , bad behaviour , mood swings and extreme anxiety.

And that’s a volatile mixture right there!

Home life suffered, I had a breakdown and life sucked enormously.

I went through a very long and damaging period of anger, desperation , blame and I suppose there was some grief thrown in for good measure as well.

(Yes, I am a HIGHLY emotional being ..I’ve been called a drama queen many-a-time!)

Even after the brown stuff hit the fan and Harley ended up being moved into the other yr 1 class away from the daily nightmare that occurred between Harley and this teacher, I still struggled enormously with moving on.

After all – I was the one that had the nightly ritual of calming and placating my terrified little boy.

At the initial meeting with Harley’s teacher at the beginning of the year, I took along with me a small handful of information that loosely related to Harley and how ASD looked on him.

I was sweet, affable, humorous and jovial to the teacher and really wanted her to like ME!

In hindsight, I can see that I was largely unprepared and didn’t give her the tools she needed for helping Harley.

(That said, I’m NOT blaming myself here, because as the year continued on, I got my act together and started to take more and more helpful information in to her and offered a LOT more in the way of advice but she wouldn’t take it on board).

But not this year.

Hell no!

You should SEE what this year’s teacher is going to be given!

I have spent hours, days, weeks and months compiling lists, ideas and hints to make this year run even more smoothly for ALL involved! I have a huge pile of printouts that I still have to decide which ones are the most useful.

I have printed up and laminated another copy of *this* for her and an extra copy for Harley to leave in his bag for any casual teachers that he may have.

I have been reading social stories that are designed for school preparation to him at night and feel like I have done as much as I possibly can to help him transition smoothly this year.

Of course I want this year’s teacher to like me (and it certainly make things easier) but my son and his needs now far outweigh my desire to be accepted.

In reflection, I’ve discovered that my longing to be accepted by the teacher last year stemmed from my own self-doubt and lack of confidence.

I was also still hurting because a lot of the other school mum’s had stopped calling me, stopped inviting me places and basically all fallen away since my misunderstood little boy had become the “naughty kid”.

I was vainly clinging to the possibility of last year’s teacher being “ The One”…

The teacher, who Harley would remember in his adult years as “The One” who believed in him.

“The One” he would tell his own kids about, “The One” who understood him and “The One” who helped him reach his full potential..

But I can now see that I put her on an unachievable pedestal and my expectations were little too high.

I argued in my head that because Harley “deserved” the best that he would automatically receive it.

Not so, Life is just not that simple.

God has recently reminded me that I often fail to come through with the goods but that He forgives me and extends me undeserved grace.

He loves me for who I am – faults and all and knows that because I am human that I will continue to miss the boat and stuff things up! But that won’t affect his forgiveness.

I still have some raw emotion rise in me when I think about the events of last year but I am no longer consumed by guilt, anger, bitterness and grief.

I have been able to get past it and chalked it all up to a learning experience.

And THIS year…I’m going in expecting GREAT things but being a little more realistic.

7 more sleeps….bring it on!