An Impossible Situation

Sometimes parenting on the spectrum finds you in situations that are hard to navigate and it’s often impossible to figure out the best strategy for dealing with them when you are in the heat of the moment. Because these moments aren’t always black and white like regular parenting can be at times.

There have been times where I have had to make a choice of which child to comfort when some situations arise.  And that’s an incredible hard thing to have to do!

Like yesterday, we were all driving the 6 hours from my Mum’s house to ours and had stopped for lunch. I had taken the boys with me to the bathroom and was helping Lucas to wash his hands by turning on the tap for him, only I accidentally turned on the hot tap causing him to burn his hands. He let out an ear-piercing scream from the pain and Harley (who was standing next to him) reacted strongly to the sudden loud noise and thumped his little brother HARD on the back.

Lucas was still crying from the burn and now also from being hit and his screams got louder causing Harley to throw his hands over his ears to block the continued screaming.  But, Harley was now kicking Lucas because he was still screaming and it just went around and around in circles.

Lucas kept screaming – Harley kept kicking Lucas because he was screaming – Lucas screamed from being kicked. And repeat.

I was in an impossible situation because I needed to get cold water on Lucas’ hands to help ease the burn (who wouldn’t let me put his hands anywhere near the water because he didn’t want to get burnt again) and trying to calm him from being hit and kicked as well as trying to comfort a distraught Harley who was in full-blown meltdown.

I couldn’t do it and had to make a quick on-the-spot decision to deal with the most important issue; which was focussing on the burnt child. I then had to put myself physically between the boys to take the force of Harley’s kicking to shield Lucas all while trying to get him to stop crying, run the water over his hand and show Harley that I was there for him.

To add to this: at the moment I have a bad leg and knee from a running injury so I also had to ensure that he didn’t kick that leg during his meltdown. It was a challenge I can tell you!

Eventually Lucas’ cries turned into small whimpers and Harley started walking in circles on the spot looking at the floor. (This is part of how he calms himself) and I was able to gather a boy under each arm and hug them closely.

I tried my best to talk to them both about what had just happened but honestly: I didn’t believe that either of them was deliberately upsetting the other. So I asked Harley to apologise for hitting and kicking and I apologised to Lucas for turning on the wrong tap and causing him to scream and hurt Harley’s ears.

It’s been 24 hours now since this happened but I am still unsure if I have handled this properly.  Lucas’ hand is ok, the boys are best buddies again and it seems to be forgotten.

So why am I still upset over the whole episode?
Why is it still haunting me? Why can’t I just get on with it?

Because mothers are harder on themselves than anybody else is.

I’m interested to know if anyone else has any tips on how they might have handled this situation?

Any thoughts?

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.

When I was 13…

This was me when I was in grade 7 and 13 years old.

Back in 1988, I was 12 going on 13 and was in grade 7. It was my first year of high school and I was the exact same age that my daughter is now.

But things were very different for me than it is for her in a LOT of ways. The world was a completely different place.

1988 was the year that the Summer Olympics were held in Seoul and it was also the year that CDs out-sold vinyl records for the first time. Australia had it Bi-centenary that was celebrated with a huge expo in Brisbane and I went twice. It was magnificent!

My sister and I at Expo ’88

*

*

That year was also the first time anyone had heard the phrases: “Just do it”
(Nike) and “I’m not bad – I’m just drawn that way”
(by the now famous fictional Jessica Rabbit).

We were watching films like: ‘Rain Man’ ‘Who Framed Roger Rabbit’ ‘Big’ and ‘Twins’ and listening to ‘The Beach Boys’, ‘Bros’, ‘Gloria Estefan’ and ‘Guns N’ Roses’.

The TV shows that were popular were ‘Cheers’, ‘The Golden Girls’, ‘Growing Pains’ and ‘Who’s the Boss’ and were very tame in comparison to a lot of the crime based shows that are around nowadays.

These were the pre-technology years in most homes. No-one I knew had a home computer, mobile phones weren’t yet invented and the town I lived in only had 2 TV channels available.

Even so, I remember being generally happy with life because people actually got together in person to talk and to “be” together and technology hadn’t yet changed everyone’s perception of friendship.

But then again, when I was 13, I didn’t have little brothers.  And I didn’t have autism in my family. I didn’t know what autism was and I certainly wasn’t expected to do half the things that my daughter does just to help us stay afloat.

I didn’t need to help my Mum cook so that she could be a referee to my siblings, I didn’t sit in boring therapy waiting rooms for hours while one of my brothers had an appointment and I didn’t have to endure hours of screaming, crying, whining and meltdowns at all hours.

I was able to sleep through the night without being woken and our family was able to go out and enjoy being together without an escape plan firmly in place.

I was never expected to put up with being physically attacked and emotionally drained and I wasn’t constantly being put last (un-intentionally) because my brothers had higher needs than me.

I wasn’t living in a house filled with visual schedules, sensory areas and autism-friendly reminders stuck to the walls. I was just your typical teen without a care in the world.

My parents never asked me to bath, dress and feed my brothers and I never once had to think like an adult when I wasn’t cognitively there yet.

I NEVER had to phone my Grandma because I was concerned that my Mum was unresponsive and lying on the kitchen floor sobbing mid-nervous breakdown in a puddle of tears and the hardest thing I’d ever had to deal with was breaking up with a boyfriend who I’d never even had a face-to-face conversation with!

My days consisted of school, homework and then free time to do with whatever I pleased and after school was the time for TV, phone calls with friends and relaxing. NOT avoiding stress by locking myself in my room with my pillow over my head.

I still adore my little sister xx

My own Mum always had time for me. She ‘made’ time for me and I had a sister who was only 14 months younger whom I adored. (And still do). Life really was pretty smooth sailing and I have to admit that I never really appreciated it for what it was.

I guess you could say that I really had no idea of know what hard was.

But my Ella does.

And I absolutely hate that being 12 is so demanding for her.

I would love to allow her to just ‘be’ a pre-teen. I want her to have the fun that I did. I want her to be able to come home to a quiet house where she feels free to unwind from her day without the constant drama that autism has brought into her life.

I want her to be able to have friends over without worrying that they will see one of the boys in action. I saw the look on her face the day that Harley lost it in front of a friend who had slept over. I felt for Harley but I also felt for her. I remember being that age and the torment of feeling ‘different’ and ‘unusual’.

I don’t like that she has to shoulder so much responsibility but I ‘do’ believe that one day she will grow into a stronger woman because of this.

She really is a beautiful child. Sure, we’ve had some interesting times with her lately but I think that this just comes with the age. Most teens push boundaries, have attitude and try their luck at times.

And she is no different. But I am making a point of telling her frequently just how much her Dad and I appreciate and love her. She has been an absolute rock to me and my heart swells with pride every time I see her tenderly reach down and hug one of her brothers. I know they drive her as crazy as they drive me but she never fails to amaze me with the depth of her compassion for them.

Ella now.

She may have it rough now but I can guarantee you that this one is going to grow into and amazingly resilient young woman who is shaped by her youth and her resilience will surprise even her.

And womanhood really isn’t that far away * bites fingernails* The pride that I feel when she exhibits such maturity is what continues to give me peace in those times where I wish that her life could be different.

I really truly do know that I am blessed.  :)

Wordless Wednesday 5/10/11…. Brothers bonding over technology

King David rocks!

 Things have been rough here lately. I won’t bore you with the details but the basics are: Harley has been a NIGHTMARE, some plans that I thought were going to come to pass never eventuated and my children have been at constant loggerheads for WEEKS now!

I sat down in the sunshine this morning with a pen in my hand and my journal so I could write it all out. I just wanted to purge myself of these depressive emotions and helpless thoughts..

I was chatting to my Mum on the phone afterwards and she commented and how similar my words were to that of David’s Psalm 13 in the bible.

I giggled as I told her that I had just finished writing a poem and I read some of it out to her on he phone.

But mine is definitely more of a 2011 version and more specific to my current issues. The main similarity is that I too have been asking God why on earth he is not answering my questions and why he seems to be hiding from me!

…….

Is it meant to be this flippin’ hard ,

I need to catch a break

The constant strife and sibling wars,

Are more than I can take!

.

Poor Ella says she’s had enough,

And really wants to leave,

I know exactly how she feels,

I’d also like a reprieve.

.

Just simple tasks like getting dressed,

Result in big explosions,

Of tears and kicks and hits and cries,

And un-controlled emotions.

.

Each day I swear it’s getting worse,

My patience is wearing thin,

Does it really improve? Or is that just a joke?

Will we EVER start to win?

.

I thought by now we’d start to see,

Improvement NOT back-sliding,

So why do I feel like I need to go,

Retreat back into hiding?

.

We’ve got the cards of visual clues,

Stuck up on every surface,

But still we fight and tempers flare,

Do we honestly deserve this?

.

What will it take for them to see,

They’re tearing me apart?

Every stupid whinge and silly fight,

Stabs right into my heart.

.

I KNOW that God has said he won’t

Forsake or leave my side,

But I cannot seem to find him here,

Maybe he’s hidden beneath my pride?

.

He also promised that there is,

A great plan for my life,

His will isn’t for me to be just another,

Exhausted mother and wife.

.

So even though it hurts so much,

I’ll choose to seek His face,

And look to Him and his guiding light,

Until I complete this race.

.

.

Psalm 13

    For the director of music. A psalm of David.

 ¹ How long, LORD? Will you forget me forever? 
   How long will you hide your face from me? 
² How long must I wrestle with my thoughts 
   and day after day have sorrow in my heart? 
   How long will my enemy triumph over me?

 ³ Look on me and answer, LORD my God. 
   Give light to my eyes, or I will sleep in death, 
⁴ and my enemy will say, “I have overcome him,” 
   and my foes will rejoice when I fall.

 ⁵ But I trust in your unfailing love; 
   my heart rejoices in your salvation. 
⁶ I will sing the LORD’s praise, 
   for he has been good to me.

Angry birds and Happy Children.

Wow!

What a weekend!  

You might remember me writing a few weeks ago about a difficult decision that Mr Patient and I had to make regarding our decision to not attend a close friend’s wedding together as a family of 5.

The basic gist of that post was that we felt that it was too much for the boys to handle so Ella and I flew up together Saturday morning for a girls weekend and Mr Patient stayed home with the boys so that we could avoid possible meltdowns and sensory overload.

This turned out to be a MAGNIFICENT decision I must say!  

Mr Patient had an absolute ball with the boys. They toasted marshmallows on the gas stove top, they watched “Mega Mind” on the big screen tv and he took them shopping and bought them both a plush angry birds toy each.  (Who says bribery doesn’t work!)

He tells me that they spent HOURS throwing them at the stuffed pig perched on top of a laundry basket over and over and over again amidst fits of giggles!

Meanwhile Ella and I spent some really wonderful (and much-needed) mother-daughter quality time together and I honestly didn’t realise how much we desperately needed this until we actually did it.

~

This child puts up with a helluva lot from those brothers of hers.

I’ll go back to Friday night now to set the scene for Ella’s complete turnaround of her emotional state.

I’d had an extremely difficult afternoon with Harley. He was in one of his particularly cantankerous, irrational and brain frazzling moods. NOTHING calmed him, he stomped around, punching all of us and walls and furniture and screaming at anyone who dared to go near him.

(In hindsight I can see that it was probably him not coping with the fast approaching weekend changes) but still – it was very trying on all of us.

I walked up to my bedroom at the other end of the house and found Ella sitting on our window seat with her head in her hands sobbing. I went over and wrapped my arms around her and asked her what was upsetting her.  She said that she was sick of all the yelling. My heart sunk as I realised that me yelling at the boys all afternoon had taken it’s toll on her and I told her how sorry I was.

She replied that she wasn’t upset with me, but that she hated that I got pushed to the point of cracking every single day. She said she understood why I yelled so much because the boys are just so full on and that she wished she could make my life easier.

I honestly hadn’t realised that this all affected her THIS much… and my heart broke for her.

So this weekend was very healing for both of us.

The wedding was absolutely amazing! The bride was stunningly gorgeous, the ceremony in the park was just beautiful and I had such a ball at the reception!

I got to catch up with a lot of friends and had such a brilliantly fantastic time…..SO much fun!

I sat through the ceremony in complete peace but every so often, I would find myself thinking about how different it would have been if the boys were there. 

I tried not to but I couldn’t help my mind from wandering.

The ceremony was in a beautiful park and you couldn’t have asked for a nicer day.  Here we are only days away from winter and we were wearing strapped dresses and trying to shade ourselves from the heat!

About 200 metres away from where the ceremony was held – there was a playground. I could imagine that if the boys were there – we would have had a helluva time keeping them away from that but Ella just sat calmly in her seat enjoying the proceedings.

The reception was in a hall about 30 minutes drive out-of-town. A real bush setting and it was AWESOME!

Mum and I watched Ella dance around the hall having the absolute time of her life! Mum commented on how wonderful it was to see her so carefree and happy and I couldn’t agree more.

There were no tense parents to contend with, no annoying little brothers and no expectations on her to “take the high road”.

But as I sat in that hall smiling from ear to ear, I found myself thinking again about the sensory nightmare that it would have been for my boys.

The chatter of a hundred happy people, the clanging of the dishes and glasses, the smells of the cooking dinners, the bright lights and the constantly swaying balloons on the centrepieces would have all been enough to possibly push Harley into a sensory overload explosion!

The speeches were very entertaining, heartfelt and just the right length but even so – Harley would have been stretched to his limit having to sit still for that long.

Ella had so much fun out on the verandah with her cousins snorting helium from the balloons and playing with them all night. The girls get on so fabulously and I couldn’t stop smiling as I watched her so blissfully happy.

She felt very grown up as she tried her very first cup of sweet tea and declared that she is now addicted to it!

We were amongst the last people to leave that night and Ella didn’t get to bed until almost midnight (she was wide awake thanks to the caffeine in the tea!)

The next morning, we said goodbye to my sister and her family and Mum, Ella and I headed into town for a coffee and some lunch before our 1pm flight back to the city. 

It’s no secret that I would desperately love to move back home. Not only is my Mum there, but so is my best friend and also a lot of other friends too. The lifestyle is a much slower pace and I find peace when I’m surrounded by family and friends.

We cherished our time together and it was so hard to say goodbye again.

The final boarding call was made and as Mum hugged us, I found myself sobbing into her shoulder, clinging to her fighting the urge to run back to her car and refuse to board the plane home.

I desperately wanted to stay and the thought of going back to the chaos that is my life made me physically nauseous.

Don’t get me wrong…..I love my boys and I couldn’t wait to see them again, but to experience how other people live if only for a weekend was simply amazing.

To see my daughter flourish and relax was awesome and to be able to enjoy myself without having to always be one step ahead, predict the unpredictable and avoid the unavoidable was out-of-this-world.

If nothing else….Mr Patient and I have agreed that Ella and I need to get away together more often. He saw how much this meant to both of us, and I am going to look forward to our next escape.

Not sure when that will be – but at least I have something to look forward to.

Now…..back to life as I know it….

*sigh*

Mothers….follow your hearts…

Our little Lucas was diagnosed with Aspergers Syndrome just on 14 months ago.  

He was diagnosed by the same paediatrician who diagnosed Harley, and as I have written before, it was virtually an on-the-spot diagnosis. So we as a family took this diagnosis on board and have been catering to this ever since.

He started attending speech therapy, OT and an early intervention group soon after.

Whilst the diagnosis was already given, we still needed to have a CATS assessment.

CATS stands for “childhood assessment team” and yesterday, we drove to the Children’s hospital where they performed the ADOS and the Griffith’s assessment on Lucas.

We entered the room to be met by a multi-disciplinary team containing, the diagnostic paediatrician, an OT, a speech therapist, a physiotherapist and a social worker.

It was a little overwhelming to walk straight into this but we knew it was the final step in discovering exactly how to best help Lucas when he starts school next year.

I know that this sounds terrible but I was actually somewhat annoyed that when Lucas woke up in the morning, he was in a fantastic agreeable mood and his speech was really quite clear because, only the day before, his speech therapist took a video of him and asked me if it was OK if she showed it to some of her colleagues because he is proving to be a mystery to her.

She told me that the inconsistency of his speech bothers her because one week she will understand 90% of his attempts at speech but then only 10% the following week.

So as bad as it sounds – I was concerned that this testing wouldn’t show the “real” Lucas and that it might provide false results.

We spent an hour sitting in that sterile room with all five members of the team answering questions, providing valuable insight and watching Lucas sit W-legged on the floor playing with the trains and dinosaurs completely oblivious to the discussions going on around him.

One of the things that they were particularly interested in was that we already have an older child diagnosed with aspergers. And Mr Patient and I felt ashamed as we admitted that our biggest struggle was not with Lucas – (the child they were assessing)- but with Harley.

The social worker asked us what kind of family support we have, and noticeably were concerned when they heard our answers.

My numerous surgeries and mental health were brought into question and the empathy for our situation in that room was almost tangible!

They were an incredibly supportive and wonderful team.

Next, we were asked to leave Lucas in the room with the Paediatrician and one of the therapists whilst the other 3 accompanied Mr Patient and I to an adjoining room with one-way glass and a TV screen that we could observe the rest of the assessment on.

We giggled as we watched him show the Dr how to tell if you’re alive or dead and squeezed her fingers for her until they turned white and then after releasing the pressure and when he finger returned to it’s normal pink colour – he exclaimed “Yay! You’re alive Dr Jenny”!

She thought it was hilarious too!

We watched this play based assessment with mixed emotions….pride, anticipation and for Mr Patient, a little sadness.

He shed a few tears as the reality set in and he was confronted with the very real possibility that the original Paediatrician was correct.

I need to point out here that I personally am in a very different place to him. I believed this diagnosis right from the start but he has lived in “hope” that his other son would be spared the trials that seem to go hand-in-hand with ASDs.

After the assessment was completed, we were sent off to the hospital cafeteria for half an hour so that the team could meet and compile their results and final diagnosis.

We sat out in the sunny courtyard watching Lucas play happily in the garden and discussed what we expected the outcome to be. I told Mr Patient that I really couldn’t pick it. I honestly had NO idea what they were going to tell us. It was a brilliant day for Lucas….he might have been able to pass for typical because he is so high functioning.

I’ve written many times before that there are days when even I as his mother (and the one that he spends the MOST time with) have doubted the original diagnosis.

These are the days when he is attentive, agreeable, consistent and “typical”. But then soon after he has what I call a “fully autistic day”… These days have him pacing in circles, mumbling to himself and repeating the same phrases over and over to himself like a mantra.

But my concerns were laid to rest as the team re-entered the room and the results were delivered.

Lucas meets the criteria for aspergers syndrome 100%.

We were told that the formal reporting will take a little while to complete but that in the meantime, they can tell us with certainty that the original diagnosis was and is correct.

I beamed when they told me that he has no intellectual delay but conversely he is placed in the 80^th percentile intelligence wise for his age group..

She then went onto explain that the problem lies in his apparent speech delay. The ability is more than there but it’s just not translating to his words. She recommended more intense speech therapy and stressed to us the importance of finding just the right school for him next year.

The Dr must have read my face because she then launched into an in-depth discussion of how differently aspergers can appear in two different children. (Namely my two boys).

Harley is aggressive, emotional, short-tempered and obsessive. But he is also cuddly, affectionate, sensitive and caring.

Lucas is easy-going, level-headed, patient and flexible. But he shuns affection, appears nonchalant and exudes indifference.

She explained to me that personality and sensory profile are major factors in how aspergers looks on the individual and that the family dynamic can also dramatically affect the child’s presentation of aspergers.

For example: Lucas was diagnosed a lot earlier than Harley was so we made the necessary adjustments therefore sparing him the heartache of trying to fit into a family that isn’t catering to your needs.

There were already visuals all around the home left over from Harley and we never expected the same level of compliance that we did of Harley at the same age.

She pointed out that because the boys share the same diagnosis….there are a plethora of variants that affect the way that they present.

The meeting was finished after the social worker asked us what kind of service we as a family needed.

We looked at the floor as we announced again that we needed more help with Harley than with Lucas.

Our information has now been put forward to a number of support providers who deal specifically with behaviour management and supporting the family unit as a whole. I’m thrilled and incredibly grateful.

Throughout this whole exhausting process, I have learned that I need to stop listening to other people because I know my son better than any health professional ever could.

So mothers…..trust your instincts.

It there’s something about your child that’s just not quite right but you can’t put your finger on it…..get it checked.

Follow your heart, the worst that could happen is that your child turns out to be typical albeit a little quirky.

Or…..Congratulations!  You have a remarkable child with an incredible gift who just happens to be on the spectrum.

It’s a win-win as far as I’m concerned.

When the Madhouse family hit the shops!

I thought this morning, that I had nothing to post today.

It turns out that I was wrong again!

We had a VERY eventful day full of laughter, joy and hilarity!

This post is quite long but full of laughs. And there are a few serious bits thrown in for balance!
I just had to share my crazy family with you all

There are a couple of reasons that I’ve decided to blog these events…firstly, because personally, I am more drawn to blogs that tell stories from their own lives than those that are nothing but chock full of facts and statistics.

And a LOT happened in the space of only 2 hours today!

***

Well… we needed to get some things at the shops today so we decided that we would go to the local shopping centre and grab some lunch in the food court while we were there.

We found a table and the boys and I sat down whilst Mr Patient and Ella went to go and purchase the food.

I just happened to be looking at the Subway restaurant in front of us at the exact time that one of the staff accidentally put a plastic bag into one of the ovens.

It blew up! And very dark smoke with a strong chemical smell started billowing out of there at top speed.

I knew it wouldn’t be long before the smell and smoke wafted in our direction and from my experience in working in retail, I knew that once smoke got out – the evacuation alarm would soon start to ring.

I grabbed both the boys and headed for the outside doors hoping to make it out in time.

I caught Mr Patient’s attention (who had just started back to the table with a tray of food) and he grabbed Ella and met me outside.

I was right…within seconds, the alarm started sounding VERY LOUDLY over the P.A. system and people flocked toward us in droves.

I settled my family in an open area away from the crowds and looked around at the other people.

Over to my right, there was a little boy who was about 3 with his Mother, covering his ears, rocking his whole body back and forth on his feet and whimpering in a pained tone.

I looked at him and I thought: “Well, hello, this looks familiar! “

But what alarmed me was when I glanced at his mum-she was absolutely bewildered at his behavior (and more than a little embarrassed) and was unable to pacify her little boy at all.

I walked over to them and smiled sympathetically at the Mum and asked her if she wanted me to try talking to him. She nodded thankfully and said: “Sure, but I don’t understand what the problem is, he always freaks out at loud and sudden noises”.

I crouched down to the little boy’s level and looked at his gorgeous face (he couldn’t eye contact me – but I was a stranger to him, so fair enough) and said: “Hi there little tiger, your mummy said you are a little bit frightened” he nodded and looked at me now to check me out before quickly breaking eye contact and looking away again.

I looked at his Mum and she smiled and nodded so I reached over and put my hand gently on his arm and said “That’s ok, I felt a little but frightened too, but then I found out what made the alarm go off and then I wasn’t scared anymore”.

He looked at me questioningly and I continued. “Do you want to know why there is a loud noise”

He nodded, the tears were subsiding now.

“Well, some silly person put a plastic bag in an oven. And ovens don’t like plastic bags, so it started smoking because it was angry!”

He giggled.

“And the loud alarm is ringing because the smoke and alarm are good friends and the alarm rung up the fireman and they will come here soon and turn it off”.

And then – right on cue, a fire engine sped around the corner and pulled up right in front of us and the fireman in their hazmat outfits climbed out one-by-one.

His mother smiled at me and thanked me and I told her that with MY children, their fears are often allayed if they know why things happen.

She said she’d definitely try to remember that next time a noise scares him.

I wonder what will develop from that??

Anyway, onto the fireman – I turned around and started to walk back to my own family and Mr Patient and I exchanged a knowing look. We were both thinking the same thing

* sigh *

Our eyes both filled with tears as the grief that we thought we had dealt with came and punched us both square in the noses! (Grief has a nasty habit of doing that!)

You see… my late father was a fireman.

He wore the same uniform. He drove the same fire truck, he turned off alarms in shopping centres regularly and he walked proudly past the adoring public as they watched in awe.

Ugh!

Miss you Dad xxx

As we headed back inside, Mr Patient went over to buy us both a cup of coffee at our favourite shop.

He returned with an artificial rose wrapped in cellophane and handed it to me saying that it reminded him of our love.

“What ..Fake?” I enquired…

“NO…everlasting, it will never die!” he said exasperated!

The couple over at the next table that witnessed this exchange started giggling and smiled at us. The kids were in hysterics too.

Ah yes… we are both often the centre of attention!

After we’d finished eating and drinking our coffee, Mr Patient took the boys to the toilet. (Restroom or Bathroom if you’re American)

When they returned, Lucas was in tears and howling loudly. I asked what was wrong and Mr Patient explained that he had neglected to “hold it” (I apologise for the crassness) and as a result, it all flowed straight down his leg and onto the floor soaking his undies,feet and shoes!

Oh dear!

Mr Patient threw the saturated undies into the bin and hastily pulled his (miraculously still dry) shorts up.

Lucas didn’t cope with the feeling and bawled loudly that he wanted new undies.

So we set off in search of a shop to buy some more.

He was so excited when we found a pair with a monkey on them that he ran straight to the check-out.

When it was our turn…the girl behind the counter asked him if they were for him.

“Yes,” he replied. “I wee-ed on my other ones and I don’t have any undies on now ..See” as he dropped his shorts to the floor and flashed the poor girl!

She cracked up laughing and I hastily pulled them back up, handed and the money and walked out whilst lecturing him on the do’s and don’ts of public decency!

We left the shop and I walked over to where Mr Patient was waiting with the other 2 kids and started to relay the story to him and Lucas (right on cue) then gave Daddy a demonstration in front of the rest of the shopping centre!

We were so embarrassed but couldn’t stop laughing all the same!

People were walking past us laughing… it WAS kinda funny

And lastly, we were waiting for Mr Patient to pay for the last thing on our shopping list and I was waiting with the kids out the front of the shop: Harley turns to me with a panicked look on his face and says: “Oh no Mum, I can’t find Teddy..I must have lost him” and his face contorted into a worried frown.

I immediately start to play back in my mind the last few places that we had been and started to get prepared to comb the entire centre looking for the damn bear when Mr Patient walks over and asks what all the fuss is about.

Harley turns to him and says:

“Mum, is looking for teddy because I lost him”

And we exchange oh-my-goodness,-life-is-gonna-get-hard-real-quick-if-we-don’t-find-the-damn-bear looks and start planning who was going to check where, when Harley walks over to a pile of boxes and pulls Teddy out saying….”Gotcha!”

And started giggling at his little joke!

I must say – he did an awesome job of convincing us that he was upset!

Whilst I don’t like my kids lying to me, I had to give it to him. He got me hook line and sinker on that one!

Have a great weekend all xxx

He's Harley…..he's complex!

You know that old phrase. “Well, I’ve got some good news and I’ve got some bad news”  

To which the other person usually replies: “Ok, what’s the bad news, let’s get it out-of-the-way first”…. (We’ll, that’s what I would say anyway) …

So……This morning, I went to get Lucas out of the car once we arrived home after dropping the older two kids at school and realised that he had done the old switcheroo with his DS game and Harley’s.

No big deal you say?

Well it is if you’re 7, have aspergers and obsess over the game in question.

Harley has spent weeks moving up level after level until he reached the one he was at as of this morning.

It is one of those levels where you can “buy” things at the virtual shop where you earn tokens with which to purchase things.

Anyway, Lucas somehow got into the settings and deleted all the high scores and reset the game.

I admit that at first I panicked because I’m well aware of the fact that Harley has lost it over things far less than this in the past. So I told Lucas off and told him that Harley would be very angry with him and he needs to say sorry when he sees him.

Lucas spent the whole day frightened and kept saying to me: “Harley’s going to punch me “ And I kept reassuring him that I wouldn’t let that happen. (And secretly crossing my fingers that it DIDN’T!)

But I knew that if I didn’t step in first, Harley most probably WOULD hurt his mischievous little brother whether physically or with words because this game meant so much to him.

So back to the opening phrase….Good news and Bad news…..

If I tried to Harley the bad news first, he would more than likely fixate on it and be unable to hear anything I said past that.

So I decided that I was going to greet him after school with some good news that would fill his mind instead.

So I went with :

“Hey mate, How are you?, Did you have a good day?”

Then “Guess what, Mummy brought her iPad in the car with her and you can play it ALL the way home……in fact, I just bought a new game for it, do you want to work it out for me?” (All said in the most effervescent voice I could muster!)

His eyes gleamed and he nodded frantically.

“Thank you , You’re the BEST Mummy” he raved (Meanwhile, I felt like a total cad for keeping quiet about the news that I knew would devastate him).

I decided to wait until we got home and practised several scenarios for telling him.

Unfortunately, Lucas being SO frightened about Harley “hurting” him fessed up and spilled the beans about the game almost instantly…..

I saw Harley in the rearview mirror and braced myself for World War 3 that I had imagined would occur in the backseat any minute now.

I waited, and I waited and I gritted my teeth ready for the screaming match.

And nothing!

Harley was so engrossed in the game he was playing on the iPad that he barely looked up and said:  “Well, as long as you don’t touch it again Lucas unless you ask me first”……

Huh? I was in shock….What the heck just happened there?

I wasn’t sure that Harley had heard correctly or ingested the information properly (based on his low-key reaction) so after we arrived home, I sat him down at the dining table and asked him if he understood that all of his information on his game was deleted and that he would have to start over.

He nodded and said “Yes Mummy, I know, but you shared your iPad with me so I thought that I should share my game with Lucas more often and then he wouldn’t feel like he needs to steal it from me when I’m at school”…

With tears in my eyes (I’m so emotional!) I hugged my little man and told him that I was SO super proud of him.

I simply couldn’t believe that a child of only 7 and one with a complex neurological disorder that wires his brain to focus on only his own needs so much of the time, was coming out with something so thoughtful and mature!

Even before Harley was diagnosed, Mr Patient would often say to me in complete bewilderment  “What is WITH that boy?”

And I would always shrug my shoulders and reply in exactly the same way:

“I’m not sure honey, but he’s Harley, he’s complex”.

And yes he surely is

Brothers in arms…(and by that I mean cuddles)

Firstly……yes, I changed my blog theme……WordPress have a new theme called “Spectrum”.

And with a name like that,  I simply HAD to try it

***

I don’t know what it’s like for other bloggers: But I know that for me, almost everything that happens in our lives can be somehow turned into a blog if I let it.

And our lives flip-flop between…good thing, bad thing….good thing, bad thing…….

I wonder how to keep the balance between celebrating the great achievements that my children make or writing about the issues that we face daily and the trials that constantly present themselves to us.

Most of the time, I am able to find good in all situations, though sometimes….I do struggle.

Today, I only have good things to write.

I feel so very blessed in my life at the moment.

Sure, there are still a lot of not-so-pleasant things going on and it will always be that way but I’ve made a promise to myself that I will try my best to tip the *good thing bad things* scale in favour of the good things.

It’s the only way for me to be.

***

Last night, Harley had a shocking night sleep, he was in our room several times complaining that he was having nightmares and couldn’t get back to sleep.

The first few times, I calmly walked him back and prayed with him and laid down on his bed next to him for a few minutes before leaving again.

Then Lucas woke up crying with a shocking cough. So I went in and gave him his asthma puffer and then when he started to get a fever, I gave him some medicine to bring it down again.

(Yes, Lucas is sick AGAIN! A nasty cough, a runny nose, a fever….the works *sigh*).

So, I went back to my own bed and ten minutes later – Harley walked in AGAIN!

I knew that Mr Patient had a long drive ahead of him in the morning and by now, I was completely over it and sent Harley back crying and sobbing to his own bedroom.

Lucas wakes again and I ended up asleep in his bed therefore over-sleeping and being half an hour behind schedule for the next morning! Ugh!

Solution……keep Harley home from school.

Well, he is coughing (I justify it to myself) and having had little sleep – he’s not exactly going to be a prize student today is he?

So I threw the boys into the car still in their pyjamas and dropped Ella off at the school gate in plenty of time.

Her head teacher walked over to my car impressed that I managed drop-off this morning (knowing that with Harley’s issues this is rare!) and then she spotted Harley in the backseat .

I felt the urge to start explaining why I was keeping him home and then his little voice pipes up “Mummy is keeping me home today because I’m tired because I had to sleep on Ella’s floor last night”…….

WHAT??!!! I swivel around and look at him aghast at this revelation and smile that ‘I’m gonna get you for this’ smile that mother’s save up for times like these……

**

As we turned out of the school car park – I pulled the car over and undid my seatbelt so I could face him.

I asked him: “What’s this about you sleeping on your sister’s floor last night?”

“Well, you and Daddy didn’t want me in your room, and I know Ella loves me , so I asked her if I could sleep in her room”…..”She gave me her pink blanket and I had my own pillow and teddy” he told me matter-of-factly!

Ugh!

Instantly, I’m gutted….So this is what he thinks?????

I tried to explain to him that it’s not that we don’t want him or love him but that grown ups REALLY need their sleep.

He then looks me STRAIGHT IN THE EYE and says “It’s alright Mummy, Lucas needed you more than I did,he was coughing and wheezing last night.  I understand”……

Tears filled my eyes as I’d witnessed this amazing show of empathy in my little boy and the waves of pride that were washing over me  threatened to drown me!

Not only did he manage to articulate his feelings, but he was able to consider his little brother’s needs and put his own after that

WOAH – that’s REAL progress right there!

And my noisy boys……?

Well, presently, they are both in the lounge room snuggled up together watching Lunar Jim…..I just don’t get them sometimes?

Ella on living in the Madhouse – 20 questions……

Ella and I both love to talk and we often have really interesting conversations.

I asked her if she was interested in writing something for my blog and her eyes lit up.

 But then she started to get worried, she wasn’t sure that she would be able to write a whole blog post on her own so I suggested that we do it in a 20 questions format.

So here goes….an insight into the mind of a 10 year old girl in 2010.

1.What is your favourite colour?….Purple.It’s not as babyish as pink and its also Grandma’s favourite colour.

2. What is your favourite song?….Fireflies by Owl City

3. What is your favourite book?…..The secret diary of a wimpy kid

4. And your favourite TV show?…...Victorious

5. So, what movie do you love the most?…….Runaway Vacation.

6. What do you think Aspergers is?……That their brains are wired differently and they get confused a lot. I think it makes people with aspergers feel like they are different to other people and that makes them sad.

7. Do you think that you have aspergers?…..Sometimes yes I do.

Me: “Like when honey?”…….“Well, when I read books and stuff that you have on aspergers and it feels like I’m reading a book about me.”

“Also mum, you know *Jessica from school” ( a girl in yr 12 that’s been mentoring Ella who is diagnosed with aspergers)

Me: “Yes”

“Well….I’m like her too.”

Me: “How do you mean?”

“I don’t know how to make people like me and I don’t understand what they talk about. And sometimes they pull faces that confuse me.”

8.” How does it feel to have 2 brothers with aspergers?”……..”Well, sometimes it really sucks.”

Me: “Can you explain why?”  ”Harley is always so loud and embarrassing, especially when he has a meltdown at school or the shops.”

Me: “Yeah, that’s hard for me too”

“And it gets really annoying when he won’t shut-up about Sonic or Stealth bombers *rolls her eyes*

9. Do your brothers sometimes do strange things?…..“YES”!  (giggling at the thought),

“Sometimes they cover their ears and cry when it’s noisy but then other times they are the ones making all the noise. It’s like…..make up your mind boys, do you like noise or hate it?” (grins).

Me: “Thats because sometimes they are more anxious than others and react more, that’s all.”

“And also, they always play the same stupid games over and over again, its SO annoying. Like stupid Sonic…”  *another eye roll*.

Me: (laughing) “Yep, sometimes I agree” .

10. So what do you LOVE about Harley?……”He is really smart and REALLY funny! – He tells the dumbest jokes that don’t even make sense!

11. “And what about Lucas, what’s do you love about him?”……”I think he looks up to me and that’s so cute – and he is always smiling and he runs everywhere! He never sits still and it’s so funny!”

12. “Is there anything about your brothers that you don’t like?”…….“Yes, Harley’s meltdowns. They are embarrassing and he always butts into conversations. He talks about Sonic too much and he always makes you sad and takes all your time.”

Me: (wiping a tear from my eye)…”Well honey, he is still learning how to deal with things in a less angry way, we need to help him by trying to understand when he isn’t coping.

And he butts in because he hasn’t learnt yet that he needs to wait his turn. He thinks that he’s the only one with something worthwhile to say. I’m working with him on this one ok?”

(understanding creeping onto her face) “Ah….ok Mum” (smiles).

13. “So, I’m guessing that there are times when you feel sad being in this family?”……“Yes, I wish that the boys didn’t take so much of your time and make you so sad.”

Me: (nodding)”Yeah, me too sweetheart. Me too.”

14. “So what can we do to help make it better for you?…..”  ”Well, I like it when we have those Mummy / daughter days….Can we have another one?”

Me:” Absolutely! Let’s plan the next one.”

15.” So how do you cope when things get hard for you?”…… “Usually I go to my room and pray and read or draw. Sometimes I hide under my sheets until I feel better.”

(There’s a typical flight response if ever I heard one!)

16. “What’s something good that you hope for Harley’s future?” …..”That he makes some good friends and that he learns how to cope better.”

17. “And what about Lucas. What do you hope for him?”…..That he learns to talk and sit still!

(I giggle).

Me: “Well Ella, I hope all of those wonderful things for you too, I know that you will be successful because you are so smart and kind”

(Ella blushes)” Thanks Mum ” (smiles)

18. “What do you want to be when you grow up?”……”A cartoonist or a graphic designer. Actually, a chef would be cool too!”

19. “What are your favourite things to do?”…..”Play my guitar, read, draw, cook, listen to music”

20. “Do you know that I love you to the moon and back?”……”Yes, and I love you more Mum…”

( I sniff and dry my eyes).

Isn’t she a gem? Or am I just TOTALLY biased?

 LOL

My ratbag boys!

I wrote this a few weeks ago when my 2 mischevious little boys decided to climb over our front gate.

The fence is about 2 metres high (about 6.5 feet) and they had to climb onto the wheelie bin (outdoor trash can that’s about 4 feet high) to reach it.

Pretty impressive for a 4 year old I think. But like most boys – they will do anything of another boy dares them to!

 

 

Oh me Oh my,

Oh please! Oh why?

I’m feeling rather tense

.

My boys were found

Not making a sound while

Climbing over our front fence.

.

They jumped the gate,

I was too late,

To stop them falling down

.

On the other side,

They tried to hide

From the neighbour’s angry hound.

.

They’ve never learned

That awkward squirms,

Could promptly seal their fate

.

So across the road

To our humble abode,

They ran towards our gate!

.

Their mischief thwarted,

Their mission aborted,

And scared out of their heads

.

They came inside

All hyped and wired

Claiming they were “almost dead”

.

So they went and played,

Being LOTS more staid

They fiddled with their toys

.

I smiled instead,

I knew in my head

That boys will ALWAYS be boys

*****

 

I doubt that they will attempt that fence climbing escapade again anytime soon!

 

google image

 

 

And yes…….they DID escape the dog but only to taunt him again from the safe side of the fence!!!

Monologues

You know it’s gonna be a GREAT day when you’re lying in bed and you hear……”If you don’t shut-up about Sonic the damn hedgehog, I’ll dump this entire bowl of cocoa bombs over your fat little head”…

Hmmmm, hormonal  much?

Look, I understand where she was coming from……the monologues CAN be a bit trying and the attention to detail, whilst cute at first also gets extremely annoying after say…..ten minutes straight!

But none of that excuses speaking to your little brother like that!

So out I went and stepped straight into the line of fire.

“Harley, we know that you love Sonic, and we appreciate that you know EVERYTHING about him…..it’s just a little bit hard for Ella when she’s trying to eat her breakfast and you are yabbering away in her ear”

Harley looks at me and says (genuinely surprised)  ”Oh, ok – I’ll stop talking about Sonic then”.

I collapse on the chair impressed at myself for nipping this one in the bud.

Until he follows with “So Mum, did you know that the Northropp Grunman B-2 Stealth bomber can drop a bomb and then fly off at subsonic speeds”?

“What does subsonic mean Harley?”

“Ummmm,”

“Exactly…….now eat your toast, there’s a good boy…..

Erm, that's not QUITE what we meant son…..

I suppose I should be grateful that the tutoring that we pay for every week is bringing results.

Google Image

And the writing technique practise that Harley does with the OT is also yielding great work.

I guess I should even be happy that he is learning to spell very well and putting it to good use.

But as hard as I try – I simply CANNOT condone the fact that he filled his sister’s school issued homework diary with the words “poo poo” and “wee wee” over and over again in a vast array of different colours and styles.

Hmmm………..how do I tackle THIS one?

Helping your child to fit in.

In a very interesting turn of events……the lady that I had a “discussion” with in this post, came up to me yesterday at Lucas’ E.I. group and handed me a book that she thought I might like.

It is  a book written by aspergian John Elder Robison called: Look me in the eye.

So far I have been virtually unable to put it down. It is SO interesting and gives a wonderful insight into how his mind works.

The fact that this lady handed it to me was (I think) her way of apologising for attacking me previously.

Never mind the fact that when she handed it to me she said “I think you really should read this so you can learn what  aspergers really is”.

Then she followed with : “But make sure you bring it back to me next week, I’m only allowing you to have it for 7 days , if you don’t finish it in that time, that’s too bad ok”

I smiled politely and thanked her although I was laughing hysterically on the inside at her own apparent lack of tact or social skills. But not laughing at her ,but in recognition of her mannerisms and tone

I have only read the first few chapters, but so far – the thing that stuck out the most to me was when he explained HOW he figured out social rules and what’s required to have a two way conversation.

He interestingly enough pointed out that the adults in his life had kept him from figuring this out sooner. Because whatever he was thinking about at the time would be what the answer was that he gave. And it was usually nothing to do with what the other child was talking about at the time.

Children would respond to his seemingly selfish answer by either walking away from him or saying something nasty or getting angry with him, whereas the adults in his life. wouldn’t tell him if his response made no sense- they would simply play along and keep the conversation going regardless.

He wrote that because the grown ups in his life just simply adapted to his ways and didn’t get mad or frustrated with him (like kids would) he didn’t realise that he needed to change.

He also noticed that normal kids learnt all of these unwritten rules by intuitively reading the others children’s facial cues and body language. He only noticed these things when they were in extremes and often by then it was too late.

W-O-W!

Just from that one small paragraph, I learnt that I am actually not doing my kids any favours by being “polite” and keeping the conversation going smoothly.

And when I by-pass their obvious errors or nonsensical answers, I am not teaching them the skills that they require to function in today’s society!

I also learned that I need to model for them what is expected of them in social situations.

I realised that I can actually help them to fit in and avoid some rejections!

Awesome!

Not so special after all!

Does anyone else read back over some of their old blog posts or remember conversations they may have had with someone recently and think: “Well, I’m nothing but a big fat hypocrite”!

I had one of those moments this morning.

Before school today, I published a post that I had in my drafts folder about living in the moment and cherishing  your children ‘right now’.

Well, let me tell you about MY DAY!

I found myself wanting to do anything BUT cherish my kids!

We were actually ON TIME getting ready for school this morning and I hadn’t had the need to yell at the kids or hurry them in any way like I usually have to.

Ella and Harley made their own beds without being asked, Lucas tried to dress himself and they all packed their lunches into their respective bags.

I witnessed Ella doing up Harley’s shoelaces for him and saw Harley turn the bathroom tap on for Lucas to wash his hands. (awwww)

I was smiling to myself and feeling all warm and gooey and told myself that this was all because I am such an awesome-ly organised and routine-d Mum.

I decided that this was one of those moments when you just want to shout it out to the world how happy you are and how far you have all come so I published the damn post!

I then took myself off to have my shower and bask in the smugness of success that I was experiencing.

Of course I hadn’t even turned on the tap before I heard screaming. I grabbed my robe and went to investigate.

The sight in front of me almost brought me to tears and totally shattered all my illusions of happy, helpful children!

Ella was standing there with the front of her hair soaking wet, her school blouse completely saturated and the hem of her kilt (that I had spent AGES ironing the pleats into last night) was dripping all over the carpet.

I marched into the bathroom to confront Harley and was immediately overwhelmed by the floral perfume-y overpowering scent that met me.

He was sobbing and rocking in the corner.

Hmmmmmm. I have to admit that it took me a few minutes to get my head around the whole situation before I could even start asking questions. We were due to leave in only ten minutes.

The story that I finally got was that Harley had used the toothpaste before Ella and had left a bit of it around the spout of the tube and then closed it again causing a nice toothpaste-y mess that Ella didn’t like……..so she sprayed him ALL OVER with Impulse (which is a teenager type body spray/deodorant). And it stinks. BAD.

Harley already has sensory issues and even I who am not particularly sensitive wasn’t coping with the overpowering stench.

So how did Harley retaliate?

First he filled his mouth with water and spat whale-style all over her face. Then after realising that it didn’t make too much of an impact – he decided to fill the cup up again and dump the entire thing over her head and chest.

This was when the screaming started.

So……I didn’t get a shower before school. I had to pull on some clothes quickly, attack Ella’s clothes with a hairdryer (BIGGEST waste of time let me tell you!)

Then I had to throw Lucas in the car still in his pyjamas and lecture the kids all the way to school about being kind to each other. Meanwhile Harley is still howling because he “smells like a girl” and Lucas went into no-cope mode because he had nothing on his feet.

I thought about the “Enjoying the moment” post I’d uploaded this morning and laughed to myself.

Because laughing was pretty much the only thing I could do. There was absolutely no way I wanted to bask in and enjoy THIS moment!!!

I’ll start making the most of the moment TOMORROW…..I promise!

See how long ago this started? Ella is carefully 'placing' her un-eaten spaghetti all over her sleeping brother's head. Hmmmm.

It all started with 6.

I remember sitting down roughly 18 months ago in a particularly self pitying and introverted moment and saying out loud to Mr Patient that the total number of people that I felt I could actually turn to in a crisis was somewhere around the amount of fingers I had on one hand. (Excluding immediate family of course).

And out of that 6, only 3 of them actually lived near enough to us to actually be able to physically help me if ever I needed to call on them.

And I knew I never would. They had families of their own after all.

The other 3 families all live great distances away ranging from 600 km to 4,000 km. (375 – 2,485 miles).

I know that this 6 is a lot more than some people could ever wish for and true friends are really hard to come by these days so I was very fortunate to have them in my life.

I was also lamenting that as far as “family friends” go, we didn’t have any living near us at all.

By the term “family friends”…..I am referring to the ones where I am friends with the woman and Mr Patient is mates with the man and our kids don’t hate each other!!!

We have only ever had 3 families like this in our lives and every single one of them has moved away.

What does that say about us?! :O

Then fast forward to last night.

My best friend in the whole entire world * Hannah and her husband *Kieran were in town overnight to attend an AFL match. (If you don’t know what AFL is- don’t bother googling it. It stands for Australian Rules Football and in my opinion, it is the stupidest,waste of time sport EVER!)  hehe- that’ll put the cat among the pigeons!

Anyway, they came over and we all had pizza and we let the kids stay up a bit later than usual and it was great catching up even if it was only for a few short hours. They are sadly unable to have children of their own but my kids absolutely adore them!

There were no “moments” with Harley but I know that even if there were – we would not be judged. And we REALLY need people like that in our lives!

Here is an example :

We have now got an outdoor setting in the dining room while we wait for our new table to arrive and yesterday afternoon we were put to the “parenting test”.

I was discussing it with my *Kieran and telling him that as parents- we were presented with somewhat of a dilemma earlier that day.

The outdoor table is a rectangular shape whereas the old one was a square. And for Harley to sit in the same position that he used to- he would have to sit at the head of the table.

We just assumed that this was going to be the case but were thrown when Ella announced that she wanted to sit there. I explained to her that it was important for Harley to keep as much routine as possible and she immediately started sulking.

“But I called it first mum- it’s not fair. Why does he get it?”

I saw her point. Yes- she got in first, she “called it” and didn’t understand why it was an issue. So I explained to her that Harley wouldn’t have even thought to “call it” as he assumed that it was where he would be sitting.

I was relaying this conversation to *Kieran and he agreed that it really was a no-win situation and agreed that parenting is the hardest job in the world!

We eventually got around it by telling Ella that for now, Harley could sit there but we would ease him into other seats so that she could sit there eventually. THANKFULLY she was happy with that!

Afterward our friends left – Mr Patient and I spent some time chatting about the people that have come and gone in our lives and compared where we are now to where we were then.

I realised that life is full of seasons, this is our “autism season” but the difference between this season and other seasons is that this “autism season” is not one that will ever end.

It’s for life.

It’s not like flu season . It’s not something you can stay inside and avoid until summer returns!

I guess it’s stupid to even refer to it a a season?

The more I thought about it, the more I started to understand that even though autism is always hovering, hiding and waiting to manifest itself at the most inopportune moment, I don’t need to be afraid anymore. It’s not so scary now. I don’t feel as uncertain about “people” and their opinions. (Though I’d be lying if I said I never did).

I believe that my children will achieve great things despite autism. It’s because of their  awesome uniqueness that they will add fresh flavours to situations they find themselves in.

They are certainly not destined for the rubbish heap.

And I truly believe that the people that are in our lives now – including my new and incredibly encouraging cyber friends – are far more valuable than gold.

Because these friends have committed to being in it for the long haul!

They don’t all walk the same walk- but they are willing to hold my hand and walk beside me offering their shoulder to help carry the load.

These friends have either stuck with us through the horrible stuff right through to diagnosis and didn’t run away scared. Or they met me post diagnosis and didn’t let it deter them from pursuing friendship.

These friends don’t judge us what they “see” but by what they “know” to be true. They haven’t allowed the nitty gritty to get in the way of true friendship.

Gradually and very slowly, I have forgiven and forgotten those that hurt us so badly.

Those who told us that we needed parenting classes to learn how to control Harley.

Those that scrutinised our family and questioned our motives when we decided to seek out a diagnosis for him.

And it wasn’t just people. We were hurt by “groups” and “institutions”. We were shunned by those that should have helped.

However now – most days , I can’t believe just how blessed we are now to have just the right balance of true friends in our lives.

And that’s one of the best parts of having children with special needs. It causes all the people in your life that are potentially damaging, hurtful and judgemental to be weeded out and exposed.

And afterwards, it leaves a perfect platform for your true, most loyal and compassionate friends to shine from.

It’s hard for me to believe that I started only being able to count just 6 – but now, we have so many supportive friends that it’s completely overwhelming.

******

So much for taking a break from autism!

HA!

Caught out- Oh the shame!

This morning Lucas’ Speechie *Melissa was due at 10:30 am.

So imagine my surprise when the doorbell rung at 9:30 and there she was smiling on my doorstep – and all of the kids and I still in our pyjamas!

We laughed it off and I made some lighthearted jokes about school holidays making me lazy and feebly apologised for the state of my disgustingly untidy , completely neglected and totally unkept slightly messy house.

I wanted the ground to swallow me up.

I had planned to spend 9:30 – 10:30 going around like a rocket hiding toys under beds, stacking the dishwasher (with EVERYTHING on the kitchen bench whether it belonged in there or not).

My reasoning was that I could always fix it later after she left but the bench would at least look tidy - and hiding things in the oven (another quick fix method of mine) then hanging a tea towel over the front so guests are none the wiser.

I’d also planned to close the kid’s bedroom doors, hide all the dirty clothes on the laundry floor in the washing machine and wipe down the bathroom basin with a few baby wipes and finishing the whole thing of with a few sprays of lavender room air mist through the whole house, lighting my “strawberry fields” aromatherapy candle and generally giving that “display home” look and smell that she’s used to seeing when she’s here

But Oh, crap. She totally caught me out.

I was standing in the living room in my old ratty pyjamas, bed hair, coffee breath, feral children running around sockless (freezing tiled floors) and every toy they ever owned strewn throughout the house.

I can’t forget to mention the breakfast cereal bowls and glasses still on the table and the cocoa bombs that had fallen to the floor under careless children’s chairs that had been walked on and crunched into the grout on the tiles.

Lovely.

I think poor *Melissa was quite shocked at my dishevelled appearance and I mumbled something about needing more caffeine, a shower and less children!

To make matters worse- she then told me what she had planned for today’s session.

Wait for it………

She wanted to include all of the children, and wanted them each (and also me) to think of 3 things that we all enjoy doing on our own and something that we all like to do together……and then she was going to take photos of us all doing our special things and she was going to print them up and make a poster.

Urrrggghhhh! I looked down at my stained pjs and over at the kids in the mismatched old hand-me-downs and cringed.

I then had to run around like a fire chief evacuating a burning building and throw some outfits at the kids and go and have a “deodorant and perfume” shower myself .

I did it in record time and even managed to shut the kid’s bedroom doors before *Melissa went any where near them!

We all chose our “favourite” activities.

Lucas chose : bubble blowing, cuddling his puppy toy, and riding his Thomas engine.

Harley chose: drawing, Lego, and playing chicken invaders on the PC

Ella chose: playing her guitar,drawing and cooking.

I chose (well the kids chose it for me) Drinking coffee!, playing the piano and sewing.

We took photos of us all doing these activities,printed them up and made posters that we stuck on the big glass sliding doors.

There was one last photo at the bottom that was of all 3 of them playing the Wii and that was because it is something that they all like to do together.

The purpose of the exercise was to teach the children that “We are all different” but there are some things that we like to all do.

Because my kids have very little idea of how to play together, it needs to be taught.

I think it turned out to be a huge success. Thanks *Melissa!

Now……..housework is screaming at calling me.

Divide and conquer? Or bite the bullet and co-exist?

We are discovering (albeit slowly) that the BEST way to manage our children is by separating them.

But to do that, Mr Patient and I don’t get time together which REALLY sucks.  Take for example today.

Mr Patient took the boys for a drive over to his mother’s 45 minutes away and Ella stayed home and helped me cook and shop.

Sure, it was some good girly time together and the report that came back from Mr Patient was positive as well. He said that the boys were fine on the car trip because they could be separated in the back seat – (which you can’t do with 3 kids) and they stayed out of trouble for the better part of the afternoon.

But we were apart as a family for 7 hours. And it has been the same for the last few weekends.

How exactly do you find balance in your family when a lot of the time , your children simply can’t be around each other and there is a big fat chunk of autism and the accompanying lack of  intuitive social skills thrown in?

I would love nothing more than to be able to put time into each child individually and be able to be more of a help with their “autism”, but how the heck do I do that?

I remember back when we only had the 2 older kids and I honestly don’t ever remember feeling this overwhelmed.  It was SO MUCH easier back then.

Mr Patient took one child and I took the other.

We were able to give the child we had the attention they required and swap children to “mix it up a little” when the going got tough with the one you had.

Outings were simpler too.

In the same way, whether it be a trip to the shops, or a family day out in a Capital city – you only ever had one child to watch out for.

But NOW………there’s always one left over.

And sadly, it’s usually Ella.  You see, she is the eldest, she is extremely  low maintenance and doesn’t have the sensory and absconding issues that the boys do.

Yes, she is often vague and I have lost her at the shops when she stops to read a sign or gazes off in a trance but at least she doesn’t throw a public fit and attract unwanted attention.

And until yesterday, I thought I was doing pretty well juggling all 3 balls.

But no……her and I had a very teary and emotional “discussion” where it seems I have have failed her as a mother AGAIN.

First there was the “kite day” at school on Thursday just gone where a note was sent home suggesting that parents might like to “make” a kite with their child so they could fly it at school.

She never gave us the note. I found it on Wednesday night when I was getting her lunch box out of her bag and asked her why she hadn’t given it to me and explained that it was too late to even BUY a kite at this time of night.

She put her head down and said that she didn’t think I’d have time to do something stupid like that for or with her because the boys take all my time and patience so she just kept quiet.

HOW CRAPPY DID I FEEL THEN!

This poor child has been suffering in silence for only God knows how long because she feels “unworthy” of my attention or time.

FAR OUT – I’m doing the best I can but I still fall short. There has GOT to be a better way?!

I’m not sure what my next move is. But I do know that this can’t go on like this. I can’t bear to see her so forlorn and withdrawn. Especially when I know I am inadvertently responsible.

I can’t “make” the boys any easier and I can’t clone myself either. Something’s gotta give!

I don’t want to have to continue to break the family into two just so no-one kills each other but this is getting ridiculous.

I’m now left wondering……do I continue to “divide and conquer” or bite the bullet and “teach” ( inferring that it can actually be taught) my children to co-exist in harmony?

Love thy sibling.

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

Image from "Blog and Opinion"

And not just because autism lives here.

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

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

I had all 3 children home “sick” today.

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

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

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

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

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

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

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

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

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

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

But  the whole thing really really shook me!

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

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

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

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

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

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

Are boys really THAT mean to girls?

Thoughts please……