My daughter Ella likes to take pictures. She can often be seen jumping out from behind furniture to capture that all important candid shot. Some of them turn out to be fabulous pics but a lot of them are just downright embarrassing! I must admit that she has captured some fabulous memories though!
Anyway, I was looking through her latest album of randoms and I noticed a bit of a theme with the photographs of me. It is a theme that relates to how I cope.
I decided that it was time to come clean on here but first – I need to give you all some history.
Harley and Lucas are loud.
No, I’ll make it clearer than that… Harley and Lucas are REALLY LOUD!!!!
Harley has major sensitivities to noise and Lucas is like a human foghorn.
Now….you would think that with Harley having such strong aversions to loud noises that he wouldn’t make too much of it himself wouldn’t you? Um…..no, sadly that’s not the case! He can often be found screaming at the top of his lungs at his siblings, at me, at the toy that just.won’t.do.what.it’s.told and at all of the screens in the house that don’t give him the result he requires.
He also has a loud monotone talking voice and I gotta tell you that the constant noise in this house DRIVES ME NUTS!!!!!
I also want to add that after I had brain surgery to remove a tumour 5 years ago and am now 100% deaf in my right ear and as a result – I have become extremely protective of the hearing that I do have left. So the boy’s constant noise can start to get to me a lot sooner than it used to because I have trouble filtering sounds nowadays. I never had a problem with crowds in shopping centres or loud music in other people’s cars at the traffic lights or even general kid noise but over the last few years – I really really can’t take it.
I suppose my stress levels being at a constant high wouldn’t help much either – but back to Ella’s penchant for candid photos…
These next 5 photos that Ella took of me feature me “coping with the noise”…..or not! (And for the record…..the horrible black leggings in most photos are my “house pants”….eeeewww I know!)
⬇THIS⬇ is how I cope
And occasionally I drive wearing my trusty headphones because you CAN’T ESCAPE when you’re in a car LOL!
Last night at about 10pm, I was sitting down in front of the TV just relaxing when I heard some little footsteps heading towards me. I looked over and saw Harley making a beeline for me. When he was close enough I looked at him and asked him what the matter was.
“I like Sonic” he replied and turned on his heel to head back to bed.
“Hey….wait a minute” I asked him grabbing his arm to stop him from leaving. “Did you come all the way out here just to tell me that?”
“Yes”, he nodded.
“Um, I know honey – you’ve liked Sonic for a while now” I replied.
“Yes, but that was when I was seven. Now that I am eight, I need to tell you again for this year” he said with conviction and then turned around and walked back to bed!
I’m used to this kind of randomness from my boy. One of the first instances of this was when he was about 3 years old (about 18 months before he was diagnosed with aspergers). We were at church and it was Easter time. The Sunday school teachers had gotten all the kids up on stage so that the parents could ooh and aah over the cuteness of their cherubs.
The leader had a microphone and asked several children “What does Easter mean to you?” and held it up to most of the children’s mouths to wait for their answer.
There were the predictable answers and some really cute ones too but when the microphone was put in front of Harley and the question was asked – he stared at it with a blank face and replied with just three small words.
Everyone exploded into laughter and I distinctly remember it like it was yesterday. My little boy was wearing an expression that I’ve never ever forgotten and one that I see regularly today. It was a mixture of hurt, confusion and fright.
I don’t think that he realised that his thoughts came out loud. I’m pretty sure that he didn’t understand the question and that all the sensory stimulation was overwhelming him so much that he had retreated into his “happy place”. He was having an obsession with Tonka trucks at the time so it stands to reason that this was what he chose to talk about.
Like I said – I have never forgotten this but it has only been recently that I have understood that this was a prime example of what we now know to be his one-track mind. And what an awesome mind he has!
Someone once told me that men have waffle brains and women have spaghetti brains. I forget where I heard it so I can credit anyone with it, but I really really loved this!
The analogy is meant to mean something along the lines of a man’s brain being compartmentalised and that they are only able to do one thing at a time. The several single squares on a waffle represent the boxes that men file useful information in so that they can access it whenever it’s required. The boxes are all separate and individually maintained.
Work is in one box which is totally separate from the home square. That’s why (some) men find it a little easier to find balance between work and family life and women not so much.
The spaghetti however, represents women’s brains and how hundreds of strands are intertwined and crossed over and how every little thing is connected to each other and that a woman can process and achieve many things at once and that doing just one thing can be the launching pad for many other things to occur at exactly the same time.
It also explains why (some) women are unable to simply shut off the emotions of a tumultuous family life once they reach the office or leave the woes of the working day behind when they come home to their families.
(This is all generalised by the way –I know that there are of course a lot of men and women who are exceptions to these rules;))
And then there’s the autistic brain.
I have heard it compared to a huge chest where everything is just thrown in all together.
And when the owner of this chest is required to access a piece of information or remember a previous event – they are able to find it and they manage very well without help, but because there’s so much to sort through, it can take a lot longer than an NT person to find what they’re searching for.
That’s not to say that it’s not an organised chest. It may have tidy compartments in there and they are probably well labelled, but because things that make their way into that chest aren’t thrown in haphazardly, and are placed very carefully where they are for a reason…Only the owner of that chest can find their way around it with any success.
And once again….this by no means applies to ALL people on the spectrum. I am writing about my own son and what I have observed myself).
Often I will ask Harley a question and see his contorted face as he searches for the correct answer. It can take several minutes for the right one to appear but he does usually come up with it in the end.
But…..if I push him and demand a speedy reply – he will usually give me a random statement or an unrelated piece of trivia because he is trying to substitute by using the first thing that his brain has latched on to.
Usually that piece of trivia is somehow related to whatever his special interest topic happens to be at that present time.
Like the comment with the trucks!
And anyway – I personally think it was a fabulous answer because trucks really are pretty cool, he was only stating the obvious. I mean…..all the rest of the children had already given the correct answer. He was just issuing a community announcement that day after all.
I LOVE how wonderfully wired these kids of mine are! They’re simply amazing little creations . And in case you’re wondering – the reason that he walked out to tell me that he still liked Sonic at 10 o’clock at night?
Simple – he was looping on that thought . Apparently I’d asked him a question earlier in the evening about his party invitations and wanted to know what character he would like printed on them but at the time he couldn’t quite find the answer he wanted to give so he couldn’t sleep until he got it out.
And remember…..it’s still Sonic in case you were wondering
Amongst all the drama that has been going on around here lately – there have been some really great things happen as well that I really want to write about before I completely forget about them. It’s not all doom and gloom and there is some fabulous progress that has really gotten me excited. It’s all about baby steps. Nothing major but lots of little baby steps in the right direction. They all eventually add up to miles and miles of huge strides and cover a lot of ground in progress. I want to share these few little baby steps with all my autism Mother friends :)
Last Thursday (which was Lucas’ birthday – and the day that everything went pear-shaped), Mum and I took the kids up to a local shopping centre with the idea of buying a special birthday lunch for them all but it was cut short due to Lucas’ constant cries of pain so we rushed him straight to the medical clinic which is part of the centre.
While Mum and I stood in the middle of the food court trying to work out the logistics of who was going with who and what we were going to do with the groceries that we’d just bought that needed to be refrigerated, Harley was quickly reaching the point of no return. We were both oblivious to the crowds of people circling us, the music coming from the stage in centre court, the flashing lights and the singing. Our focus was in the moment.
But Harley’s wasn’t.
I glanced over at him just in time to see him suddenly go stiff and stand still with a look pain on his face. He then clapped his hands over his ears and cried out in a pained voice: “I don’t know what’s wrong Mummy…..but I feel really funny and really scared and I need to get out of here”. He was clearly in sensory overload and really freaking out.
I looked at Mum and we both knew that he had become dangerously close to melting down and that he needed to go outside to escape IMMEDIATELY. No ifs, buts or maybes…..it had to happen or we would pay the price in a big way.
I grabbed Lucas and headed straight for the Doctors and Mum gently led a shaking Harley and Ella outside the centre to a quiet spot where she later told me that she hugged him tightly for about ten minutes until he was able to come down again. Apparently, Ella offered her cardigan to him and he wrapped it tightly around himself shivering and gradually the fear and anxiety subsided enough for Mum to finish the rest of her banking and shopping.
And that right there is a part of autism that I still struggle with even now. The complete bad timing of it all. It has no regard for schedules or whereabouts you happen to be at the time. If Harley becomes this overwhelmed….it’s like a pressure cooker where the valve just HAS to be released. Life is never simple when it’s just so unpredictable.
But here’s where the silver lining lies:- I’m excited that Harley was able to recognise AND verbalise the fact that he was starting to get out of his comfort zone. He still wasn’t able to articulate exactly what was making him feel so out of control but it is a brilliant step up from this time last year!
We had another episode once we stepped into the Paediatrician’s office the very next day when Lucas was called back in. The waiting room was filled with crying babies, there was music on the radio, ringing phones, tapping on the keyboard and it was crammed full of prams, children and adults . I looked down at Harley and the tell-tale signs were there again. He looked at me and said “Mummy, it’s happening again, I need to escape here” so Mum grabbed him and took him for a walk before it hit crisis point. What a champion!!!
And on a side note: I’m so thankful that Mum is here at the moment. I have lost count of the number of times that I have been in situations like this and Harley tips over the edge but I have no choice but to leave him in the place that is the cause of his anxiety and he just has to suffer through it. It’s not easy wrangling 3 kids when one of them is in crisis mode and unable to communicate or cope at all. I simply have to keep him there and try to distract him because there is no-one else to help. These times kill me because I HATE putting him under this kind of pressure and it’s not fair to expect him to conform when it’s literally eating away at his very soul.
And even now that Harley is starting to recognise the signs – I still won’t always be able to allow him the escape he desperately. It’s why I don’t get out much and why I refuse most invitations that I receive. It’s just all too hard you see
But I’m not going to dwell on the negatives today. I’m going to rejoice that finally – I think I may have found the perfect paediatrician through all this drama!
I was SO impressed with him and will definitely be back.
The first thing that he said to me when I walked into his office was: “So Mum, you’ve got Bells Palsy – How long have you had that for and what was the cause?” Once I explained that it was due to a brain tumour I’d had removed – he visibly relaxed and it wasn’t until later that I pieced this all together in my head and understood where he was actually going with that initial question.
I later realised that he was asking me because he needed to rule out MS and other conditions that cause facial palsy in case they might have been related to Lucas’ condition. I call that thorough. I call that observant and I call that intuitive.
I then realised that he was brilliant! Most people tell me that they don’t notice my lopsided face nowadays but this Dr noticed it immediately and didn’t miss a beat. He also didn’t treat me like a neurotic mother which sadly – is a rare occurrence in my experiences with the medical field in Australia.
But the icing on the cake with this wonderful man was when we arrived at the hospital and he had a paediatrician in training with him . She asked Lucas a question that he didn’t respond to and Dr Wonderful turned to his student and said “Could you ask that differently please – he’s autistic”..
Hooray!!!!! He gets it!
I told Dr wonderful at the initial appointment that Lucas’ actual dx is Aspergers but he called it autism! HE CALLED IT AUTISM!
He then proved to me that he is NOT one of the medical professionals who just.don’t.get that although high functioning children are better off in some ways than classically autistic children – he was acknowledging that it is STILL autism and that our kids still need a lot of special allowances made for them.
All is well. Lots of baby steps all in the right direction.
Life is definitely looking up
I’d be willing to bet that they didn’t think I would actually do it I – but I am always up for a challenge and this one is relatively easy for me.
A lovely group of Mums up at the kid’s school were chatting with me this afternoon about my blog. One of them jokingly asked me to write a post about all of them.
I smirked to myself because what they didn’t know was that I had already half written a post in my head after one of the ladies made a comment that had triggered a train of thought for me anyway!
She had said that often they called out “Hi” to me but noted that I rarely responded, but she knew that it was because I am completely deaf in one ear and assumed that I probably didn’t hear her.
And that is true and I’m really grateful that she has been giving me the benefit of the doubt, but it’s actually a lot more than that as well. I actually don’t even notice them either.
You see, most afternoons as I walk into school to collect Harley, my brain is usually caught somewhere between vague and tormented. I rarely look up because my eyes are fixed on Lucas who is known for his absconding and it’s the time of day that I am trying to prepare for the afternoon onslaught of emotional outbursts that are bound to occur.
I guess you could say that I am mentally psyching myself up.
As I walk, I go over the routine in my head so that when we arrive home, things will run as smoothly as possible. I know that Harley needs to wind down from keeping it together all day so I need to make sure everything is ready for his return.
Before I leave for school in the afternoons, I have his crashing corner (complete with cushions, bean bags and pillows) set up so he can get his sensory input so that I don’t become the punching bag, the kicking post and the sounding board.
I have afternoon tea already laid out because another trigger for him is to not know what he will be eating. It exacerbates his anxiety and really is a very easily solved problem.
I have dinner planned and written down on the whiteboard so he knows what to expect and I have his homework all ready to do on his desk.
The things that inevitably throw the order out of whack are little things like sibling rivalry, unexpected phone calls, and rain. He LOVES the rain but it sends him into a trance like state where he is rendered useless when it comes to concentrating or obeying commands!
So, each afternoon as I make my way to the school gate, I mentally tick things off one by one in the checklist in my head and brace myself for my little tornado to be released!
There is another scenario at play here as well.
This one is a little bit harder for me to write about. But you know what?….I think I’m finally ready! It’s more of a personal journey that I have been slogging away at for almost 4 years now and it started way back when Harley began school.
Other autism mother’s will surely agree with me that there is a part of you that is forever changed once that diagnosis is thrust upon your child. It’s like the protective parent gene that we all possess but magnified by about 10,000. It’s kinda hard to explain, but it’s a sense of taking that diagnosis on yourself as well.
It’s been written many times that when one member of a family is diagnosed with autism – the whole family is also. Because it isn’t like a broken leg or a case of the chicken pox – both of those things will eventually end, it is a life-long thing that doesn’t just affect one small part of your child’s life.
It affects EVERY part of their lives.
Triad of impairments which simply put are: difficulties with behaviour, socialising and communicating cover every area of a child’s development and is what all the spectrum have in common.
For me personally, Harley’s diagnosis was like I suddenly took on board all of Harley’s issues, emotions and pain like it was actually ME that was diagnosed. I felt every eye staring at me everywhere that I went, I felt incredibly judged and scrutinised and I was afraid to get close to anyone for fear of either myself or a member of my family getting hurt.
I suppose in hindsight that I can admit that I withdrew from people because it was just all.too.hard.
I was jealous of all the mother’s with their “perfect little NT kids” and I felt ostracised, alone and jaded. I kept my distance for a long time because it was like I had forgotten how to socialise. I no longer had anything in common with anybody and I just couldn’t cope with life.
Cue the nervous breakdown that I had last year when things became far too overwhelming and the elephant in the room that everybody refused to speak about just became bigger and bigger.
This should help to explain my seemingly odd, aloof and reclusive behaviour of late!
Then very gradually things started to look up. I joined an online support group for parents of children on the spectrum and I met a whole bunch of parents struggling with the same daily issues, walking on the same narrow and unpopulated trails and they were able to speak wisdom and love into me again. They “got” me!
They didn’t judge, they understood the heartbreak, the gut-wrenching pain and celebrated the small things with me.
Then I started blogging. I met hundreds of people in every corner of the globe who were also fighting the same fights but with different systems, wrestling with the same teeny tiny gripes and able to offer support and friendship to someone who so desperately needed to be accepted.
God met me where I was at and lifted me out of the pit and eventually, I was able to breathe again without my lungs filling up with disappointment, grief and regret.
I still have a lot of really off days, and I know that it will continue to be a challenge, but I guess it’s time to be out and proud: – I AM THE MOTHER OF 2 CHILDREN WITH AUTISM AND I LOVE MY LIFE!!!!!
And as for you gorgeous posse on the hill – I will train myself to look up, smile, wave and call out “Hi” back.
It’s never been anything personal. I just needed to find the sunshine again
If you read this blog regularly, you would know that coffee is one incredibly big crutch in my life. It is usually the first thing that I look for upon waking in the morning and something that I crave many MANY times throughout the day.
Yes….I do believe that I am addicted and I also believe that it’s going to be quite a large hurdle for me to overcome but understanding the “Why” of my excess caffeine consumption may be the key to understanding my somewhat insatiable desire to pump myself full of the toxic liquid daily.
I noticed something very interesting today as I reached for my 5th cup at only 10am.
I realised that there is a very obvious link between emotions and coffee with me. I guess you could say that it is a similar response to that of emotional eating.
I have been incredibly down for the past few days and spent a couple of hours this morning talking to Mr Patient about it. I sat with him in the sunshine on our front lawn and watched the neighbourhood children riding their scooters and bikes and kicking footballs in the cul-de-sac.
The next-door neighbours were hosting a BBQ (a frequent occurrence that we have NEVER been invited to) and had several cars in their driveway and we could hear the laughter and fun emanating from their backyard.
So….where were our children?
With all the blinds closed and the heater on. One was on the laptop. One was on my iPad and the other was on his Nintendo DS. None of them were interested in socialising with the neighbour’s kids and none of them cared to leave the sanctuary of the house.
We realised that we were actually enabling them by allowing this to go on so we made a decision to go and turn all of them off and make them do outside to enjoy the beautiful day that God had given. The tears, tantrums and moaning started and we were told repeatedly that we were “horrible parents” and that we are “SO mean”. Harley even chipped in with “When I grow up and have kids – I’m NEVER going to be THIS awful to them!”.
Cue parental eye rolling.
Part of the conversation that I had with Mr Patient earlier included me asking him what he envisioned weekends would be like when we had a family. His response was surprisingly very similar to what mine was. It included: taking the kids to their various sporting activities, maybe going on picnics, spending it with other families or going for drives to sight see or visit friends.
But of course-our reality is VERY different.
Sure – we could do these things. We COULD arrange something fun every other weekend but we both know that whenever we have ventured out of the “norm” that we pay for it severely over the following days.
Our kids HATE socialising, we don’t have any “family friends” (meaning other families that we socialise with) – they’ve all moved away, and we are not involved in anything that could introduce us to new people therefore allowing for invitations. Sporting events usually end in tears because most ASD kids simply don’t possess the ability to handle losing. We have spent countless hours trying to teach this foreign concept to the boys with limited success because to them – failure is a blemish on their incredibly high self-standards and perfectionistic natures.
Going to church on Sundays is such a major melodrama that it hardly seems worth the hassle and the aftermath of taking our children anywhere different is always so explosive and ridiculously hard that it’s easier to just stay in our little autism bubble and keep to ourselves.
Sounds great right? Just stay home and it will all be fine and dandy?
Well – yes it’s easier on the children and causes less dramas but it’s absolutely KILLING me. I get so depressed when I hear other people recount their weekend activities to other friends and hear about the exciting things that have planned for the upcoming one.
The stories about their adventures and social gatherings that were spontaneously organised.
My weekends are always exactly the same.
Housework. Refereeing sibling arguments, housework, figuring out reasons for meltdowns, housework and trying to keep the peace amongst children that can’t seem to co-exist in the same 4 walls, and you guessed it…more housework.
Surely this isn’t as good as it gets?
But back to the caffeine/emotions link.
This afternoon, right after we took the electronics off the children and arranged for us all to go for a walk in the sunshine, and the tears flowed and the anger surfaced – I reached for my favourite coffee mug.
As soon as that hot black strong espresso shot was making it’s way down my throat, I instantly felt the rush of adrenaline that it provided and was ready to tackle the meltdown head on.
I carried Lucas to his bedroom and Harley to his and told them both that crying wasn’t going to fix anything and that I wasn’t going to change my mind. The crying eventually subsided and they dressed themselves (well …kinda!) and as a reward for myself, I went and pushed the button on the coffee machine to deliver another shot of emotional comfort.
I was just about to put it to my lips when I suddenly remembered something that I had read years earlier. It came back to me as clear as a bell and it knocked me for six. The phrase that I had remembered related to the link between emotional eating and weight gain,:
“The worst part about emotional eating is it actually causes your problems to multiply. Eventually, instead of avoiding the issues you’re stuffing down with food, you’ve created another one altogether — weight gain, guilt about eating, worsening health … and then it starts all over again.”
I stopped dead in my tracks as I realised that I was self-medicating with caffeine. And the bigger problems that it creates are: headaches, irritability, heart palpitations, mood swings and dehydration to name just a few.
I didn’t particularly “need” that cup of coffee. Sure-I still love the taste and I do believe that I am very much addicted, but the bigger problem is that I usually just drink it to avoid dealing with what is really upsetting me at the time.
It gives me a rush of control that I desperately crave and takes my mind away from whatever drama is unfolding at the time.
I noticed that I rarely drink it when I’m home alone on Lucas’ pre-school days and I drink the most coffee before and after school and on weekends.
And what is usually the thing that upsets me is the perceived loss of “who I am” and “what I think I need to feel happy”.
The sheer stress of the constant tears, meltdowns, fighting, complaining and rigid/frantically obsessive behaviour that the boys exhibit just makes me want to poke my eyeballs out.
But of course it’s much easier to press the espresso button on the coffee machine than it is to endure the excruciating pain that one would experience with the poking out of ones eyeballs! Not to mention the inconvenience of not being able to actually SEE the melodramas unfolding
Ok….Link recognised and understanding established. I just need to figure out the best way to tackle this one.
Oh , who am I kidding! – it’s all too hard…. now -where did I leave that damn coffee mug?…….
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!
There is chaos and mayhem mixed with a healthy dose of overactivity.
It’s NEVER quiet and they compete to see who can be the loudest and get the most attention. But then it usually turns sour because Harley quickly becomes overwhelmed and covers his ears and starts screaming “STOP TALKING”…..
I know I shouldn’t laugh, but it really is quite funny and it never ceases to amaze me that a child like Harley who is extremely sensitive to noise can make so bloody much of it himself!
This afternoon, Mr Patient came home early from work to help with the busy Thursday rush of running around to various therapies, school pick-ups, pre-school collection and ferrying to and from dance rehearsals. This is a mammoth task that I usually undertake all by myself and it is utterly exhausting! I leave the house at 1:30pm and usually walk back in around 6:45pm. UGH!
But I had a bit of a parental meltdown myself after last Thursday and gave Mr Patient an ultimatum….Either he had to come home earlier on Thursdays or I was going to pull all of the kids out of their groups. I’m happy to report that he came through for me and this week was the first day of this new routine.
How did it go?
Well….you’ll have to ask him! (that’s if you can get him to answer – he’s currently in the corner rocking and sucking his thumb moaning “NO MORE BOYS, NO MORE BOYS!” )
Of course I’m kidding! But he did get a glimpse of the ridiculous noise levels and madness that I’ve become accustomed to and said that he doesn’t know how I manage! (Keep it up darling – that’s the kinda talk that makes me smile).
I remembered a poem that I wrote a while back when I was in another one of my these-boys-are-driving-me-absolutely-stark-raving-nuts moments and showed ti to him tonight.
He smiled and nodded knowingly so I thought I’d re-blog it here tonight.
Don’t get the wrong idea here: I love them to bits but they DRIVE ME BATTY!!!!!!
Raising boys can be quite rough,
And challenging at times,
Sometimes I think I’ve had enough,
And they cross too many lines…
They seem to think that no means yes,
And push me til I break,
When it stops is anyone’s guess,
So what’s it going to take?!
The constant noise is over the top,
They run and flap and jump,
My days are full and I don’t stop,
Meanwhile….my house becomes a dump!
I wonder if it is just me,
That struggles with my lads?
Do other mums of boys agree,
Are you also going mad?
Some people say that they will grow,
Into some fine young men,
But there’s still one thing I want to know,
Can someone tell me when?
If I had to choose the thing I love,
The most about my boys,
It wouldn’t be the fighting or
The ever-present noise,
It would just plain and simply be,
The way they make me melt
When they hug me tight and then kiss me,
And I’m thankful for the hand I’ve been dealt.
This is definitely not what I signed up for but having said that – It’s just where I need to be. I have accepted that this is not all about me nor is it all about dashed hopes and dreams. It is my reality and it’s also my destiny.
I am choosing to seek out the silver linings and be the best that I can be. Sometimes that’s easier said than done but I’m trying and that’s what really matters.
When autism moved in – it wasn’t exactly a welcome house guest but is IS a permanent one. So I have to make the choice to embrace it or fight it every day for the rest of my life.
I lay awake in bed last night for hours. At 3am I decided to get up and write my thoughts down in my journal so I could calm my racing mind and make some sense of what I was churning through.
This is what I came up with:
Autism has taught me how to look past my child’s more obvious struggles until I can see nothing but glorious potential and Amazing Achievements.
It has also taught me that I need to fiercely guard myself from judgmental people and realise that not everything is personal.
It has taught me to accept what I cannot change and make the most of the here and now.
Autism has shown me the true definition of Unconditional love.
It has made me realise the sad truth that I cannot trust everyone who has been previously or is currently in our lives but that I can Trust God and His plans for me. Those friends that I hold dear have earned my trust and I love them for it. It has allowed me to cherish the seemingly insignificant moments and to celebrate the baby steps forward.
I now have been given the gift of being able to view life through a very different, sometimes foggy and opaque but always truthful lens. I see things as they really are not as they are always portrayed.
Autism has enabled me to connect with some of the most amazing and Inspiring people. I have forged powerful friendships based on respect,understanding and passion that I would never have found had it not been for autism entering our world.
Autism has been the driving force behind me realising my own destiny and purpose in life. I now KNOW that I was never meant to be anything but a Mum who is driven by getting what her children deserve at any cost.
I believe that I am doing exactly what God has planned for me to do and that is raising my autistic children to the best of my ability and to journal my inner most thoughts, my ups and my downs along this journey so that I can look back over past entires and be proud of progress and success. I no longer have to be overwhelmed by the suffocating sense of failure that creeps in whenever I start to compare myself with others.
When I compare the several University degrees that friends have and the screaming lack of qualifications that I possess, I can thank autism. Because of it, I was awarded a God-given grace that I need daily to raise these sometimes trying, always exhausting and incredibly rewarding blessings.
Without autism, I probably wouldn’t have ever started blogging and therefore wouldn’t experience this amazing release and fulfilment that I get to experience as I work through emotions publicly. Completely exposed and preserved for eternity but they are heartfelt, honest and cathartic.
Autism has shown me a different but not necessarily wrong way to view our crazy mixed up world. It has encouraged me to seek out answers for questions that I can’t quite form and that which I don’t truly understand.
Things that I may have never noticed before or even thought to question before autism moved in. These things now cause me to wonder about and strive for solutions rather than just accepting things at face value.
It has rewarded me with new perspectives and fresh beginnings.
I am now granted the ability to dream without limit, to decide that anything is possible and to follow my heart wherever it leads me.
Since autism thrust itself onto us, I have been stripped bare, exposed, stomped upon, beaten mercilessly, devastated, hurt and very broken….BUT I have ALSO ( and more importantly ) been softened, Strengthened, moulded, shaped, inspired and filled with a new hope.
Autism has changed me forever, I see my children exuding Magnificence, potential and life.
So…….tell me, how has autism changed you?
There’s really not much that I can write about Mother’s Day today that wasn’t already explained in yesterday’s post “The Invisible Mother”.
So I thought I’d give a glimpse into my life by showing you all my all-time favourite photographs that adorn our walls.
THESE are the reasons that make me a mother.
And what beautiful reasons they are (If I may say so myself!)
I can’t believe how very writer-ish this sounds but it has occurred to me lately that I often get an inspiration for a blog post in the strangest of places at the most inopportune times, so I have started keeping a notepad and pen in my handbag for when inspiration hits or so I can jot down any thoughts that I’m thinking through. Because I’ve noticed how much quicker and more easily I can work through stuff after it’s down in print and not making my head hurt!
Some of you have probably already been doing this for years, but I am not an organised or scheduled person by nature so this never occurred to me before!
I was thinking a lot this morning about perception versus reality in relation to my children (and their friendships in particular).
This morning when I took Harley to school, Lucas walked him in with me and was approached by someone else’s little brother and he asked Lucas: “Do you want to be my friend?”
This is a question that wouldn’t have been responded to verbally in the past so imagine my surprise and delight when he responded with: “Yes, let’s go over to that tree”…and they walked off hand in hand!
My heart leapt for joy to hear this and I couldn’t stop smiling as I watched them play chasies around the bushes.
Lucas has never really been an “aloof” child so much as just not knowing “how” to be or have a friend.
Most children who are 4 going on 5 are already having play dates and spend a lot of time together either playing make believe games or starting to show major signs of understanding “sharing” toys and interests.
Up until recently, Lucas has seemed unaware of other kids altogether and has just floated around in his own little world!
After morning line up had finished and the kids all went to class, Lucas went up and gave his new friend a hug goodbye! I was floored!
I drove him to pre-school and when I pulled up in the carpark, a little boy came running over yelling: ”Lucas, Lucas” excitedly, “I’m SO happy you’re here!”
I smiled at him and asked Lucas to say hello to his friend. So he turned the opposite direction …towards ME and waved!
I spun him around to look at his little friend and asked him again to say hello and he waved again saying “Hello”.
Then the little boy grabbed his Mum’s hand and trotted off happily to the gate.
I grabbed Lucas’ backpack out of the boot and asked him what his little friend’s name was?
He said he didn’t know……And this is a VERY common occurrence with him.
He is STILL not sure of any of his teacher’s names and although they have made him a social story with all of their names and photos in it- as of yet he hasn’t connected the two.
I have often wondered about Prosopagnosia (facial blindness) and if it applies to him?
He recognises those in his immediate family (Mum, Dad, Harley, Ella, Grandma, Nanna) and a handful of close friends that we see regularly but no-one else?
The pre-school teachers tell me that he is very sociable and friendly and that the kids all seem to love him – which of course is great – but I wonder will it still be so cute when he is 10 and unable to call his friends by name?
My other son Harley often tells me that he has no friends at all but his teachers have told me that everyone in his class adores him!!
She said that he is always one of the first kids chosen when they are asked to find a partner and that the kids crowd around him asking what they can do for him!
And that the kids are now starting to realise that he has some different needs to them, they are helping him by doing things like: bringing him his weighted vest when it’s floor time- making sure that no-one sits in “his spot” on the rug (Hello Sheldon! ) and grabbing the class teddy to comfort him when he’s not coping.
Yet Harley continues to tell me that he has no friends???
So far…we have been really fortunate regarding the boys because I know that A LOT of ASD kids are targets for bullying.
I’ve been thinking this through and something big dawned on me!
I really am starting to see that a major factor in this is not necessarily brought on by our kids themselves because of their sometimes obvious differences that they display- nor the fact that younger kids aren’t usually as mean as older kids, but it’s actually a direct result of the way that the kids that they are around have been brought up and how or if they are taught about tolerance.
I came to this conclusion after my daughter Ella was bullied for 6 years straight ever since she was 4 years old and only in Prep.
Now…she is an undiagnosed (I believe) 11 year old aspie who is so high functioning that she has become brilliant at hiding all her stims and aspie traits and has learned to mimick the other girls and (most of the time) fit in.
But…..she was still bullied even as a 4 year old.
Wheras Lucas is noticeably “odd” and very different in his approach to other kids-yet he is accepted by the kids at his mainstream pre-school.
And Harley (who is by far the most “autistic” child) is way more “out there” than the other 2 put together but the kids LOVE him!
My theory is this: The bullying is NEVER our children’s faults. And it is not always because they are noticeably different.
It is just the kids that they end up going to school with.
Or maybe it’s just simply about girls being more bitchy then boys?
All I know is that we have been incredibly blessed when it comes to our boys and friendships but with Ella…..not so much.
She comes home tonight from a 2 day excursion to Canberra so this weekend, we will have a tired, emotional, irrational pre-teen so it could go either way!
Fingers crossed….watch this space
This morning at Lucas’ early intervention group, we watched a DVD of one of Sue Larkey’s seminars.
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.
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.
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.
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!
I decided to dedicate a few posts this week to my other 2 kiddies Ella and Lucas as the main focus of this blog has been on Harley lately.
I have mentioned before that we did start the process of seeking a diagnosis for Ella but stopped because she asked us to. At the moment she appears to be coping wonderfully both academically and socially at school but if in the future we notice a massive change in either of these areas….we will re-evaluate again then and start to explore our options.
We do however still see a LOT of aspieness in her daily (and she agrees), and I’m comforted by the likes of Lisa , Laura and many others by seeing what wonderful and inspirational adults they have grown into despite growing up not knowing why they were they way they were.
I take GREAT delight in reading these ladies blogs and know that my Ella will definitely grow into another fine adult because diagnosis or not – I will do my darndest to see to it that she is equipped with all the necessary tools to get through life.
I wrote this poem for her whilst i was *supposed* to be listening to the sermon today in church! :O Um-Ah!
My girl, I’ve watched you standing back,
Observing all the rules,
And learning how to talk and act,
So you’d fit in at school.
You copy words, expressions too,
But they are not your own,
‘Cos everything I see you do,
Are diff-er-ent at home.
Are you afraid that you won’t be.
Accepted for who you are?
Your wonderful self and personality,
Outshines your peers by far!
I’m just so proud to be your Mum,
I love your gentle heart,
I love your quirks and sense of fun,
I have right from the start!
So please just know that I am here,
Whenever you need hugs,
I’l comfort you through ALL your fears,
Just because I am in love xxx
Well….My Mum left about lunch time today
Harley cried at school this morning knowing that he wouldn’t be seeing her this afternoon and Lucas was miserable as well. All 3 kids were fighting and just generally being difficult on the way to school and it didn’t occur to us until later that they were just sad about Grandma leaving.
I even “punished” Ella for being a smart mouth to me in the car by making her hold my hand as I walked her into middle school and made her hug and kiss me goodbye in front of all her friends!
( HOW EMBARRASSING! I know….What a mean mother! But - it worked, She was super nice to me this afternoon!
It’s been a tough afternoon with all of us moping around the house dragging our feet and lacking in motivation!
It’s time like this that it really sucks that she doesn’t live closer :( But we did have a very enjoyable morning together all the same.
I have always been a fan of “cheap entertainment”.
No. Not that kind!
But the kiddy kind
Mum and I went to a local second hand bookstore and they were selling children’s books for only $5 a crate! So we bought two and ended up with 124 books in total!
Now I just need to hide them from Mr Patient until I have a chance to ease him into it gently! LOL
Last week I went through all of their bookshelves and removed the ones that they no longer read & gave them to charity but after today..I think our local second hand book store will be receiving a lot more of our unwanted books!
There were Ben 10 books, Thomas the Tank Engine books, Aircraft books, Dinosaur books, Space books, Atlases, Kid’s dictionaries and lots lots more!
I divided them into the age appropriate groups for the kids and into their own individual box and as you can see: They were in HEAVEN!
And yes…..they did empty the recycling bin ALL OVER THE FLOOR!
But look how happy they are!
Who needs expensive toys eh?
THIS mother makes her kids play with the garbage instead! :lol:
Oh, and now that Mum’s gone…..Expect LOTS more blogs from me. I have much to tell
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.
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.
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.
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!
Ave a good weekend peoples,
Luv yous all!
Is there life after raising young children? What have I got to look forward to?
My sister knew for years before she even finished school what she wanted to do with her life.
She wanted to be a graphic designer. So she went to Uni, got her degree and has been working in that field ever since.
(And can I just say….She’s absolutely amazing)!
But as for me…..I still have no idea what I want to be or do when I grow up!
I try not to waste too much time worrying about things like this, but lately, I have been thinking about what my life will become next year when my baby Lucas starts full-time school.
Most of my friends have some kind of degree that will enable them to re-enter the workforce a little more easily, or a career that they have put on hold to return to, and some can even work from home, but not me.
As for vocational dreams, they didn’t and still really don’t exist in my head!
I left home at 18 and moved to the big city. I waitressed in a couple of different places, and worked on checkouts in supermarkets and I was so poor that I survived on bread and water!
I moved back home briefly when I was 21 and then hit the road again only months later- this time heading for a different capital city.
I had another couple of simple jobs , I worked in a catering place, and was a receptionist. It was in this role that I met Mr Patient.
(Yes, it was a workplace romance!)
But I realised recently that I really have had a dream all these years…
For as long as I can remember…..I wanted to be …………..a mother.
Yup, that’s right. So I guess I’m living the dream *rolls eyes*
But that’s my point here.
This is certainly not the dream that I had imagined in my head all these years!
In fact, reality couldn’t be more different!
Because I certainly hadn’t factored in autism!
Back as a clueless teenager, I had pictured myself sitting down cross legged on the floor playing barbie dolls with my daughter and having monster truck rallies with my son while we all chatted and joked with each other.
*Not sitting back and watching the trucks and barbie dolls get arranged and re-arranged and lined up and categorised*
I imagined myself playing make believe with my children and having tea parties and playing pirates.
*Not having to explain to them how to “pretend” to drink the invisible liquid or that it’s not ok to stick the sword down your pants because it feels nice!*
I had ideas about joining the local playgroup and sitting back sipping coffee with the other mothers whilst my child played and interacted peacefully with the other children.
*I hadn’t thought that I would be the mother of the child who played alone in the quietest corner of the centre with all the blocks lined up*
I thought that I would send my kids to the local school and kiss them goodbye every morning as they climbed aboard the school bus , much the same as my mother did with us.
* I didn’t factor in the IEPs, the SN teams I would have to liase with, the volumes of literature that I would need to read so that I could “teach the teachers” about my child.*
I imagined family outings in great detail down to the colour of the picnic rug and the fillings on the sandwiches I would make.
* It didn’t occur that I would live in an autism bubble and decide more often than not that it’s actually easier to stay home than attempt to survive in public with angst ridden kids!*
I dreamt up the perfect husband. Tall dark, handsome, outgoing and musical.
(I actually did marry a handsome man, but he is average height, fair, a little introverted (in public) and tone -deaf!) LOL
So…..basically, my dream and my reality are polar opposites!
But what I’m trying to say is: I now think that life is always going to be full of surprises.
Just like Forest Gump’s mother told him: Life IS like a box of chocolates, You never know what you’re gonna get!
The more time I spend learning about my children, and the more progress I see in them as a result of putting in the hard yards, the more excited I get for their futures and the more fulfilled I feel as their Mum.
But please don’t get me wrong – I think it’s wonderful for those women that are career driven and long to return to the workforce with gusto, those dreams are wonderful for the people that they belong to.
But those dreams were planted in them. Not in me.
I truly believe that it takes ALL types to make a world.
And I think for me personally, I couldn’t care less if I end up working on a checkout in a supermarket again or waiting tables, or cleaning dishes because whatever I end up doing , it won’t feel like a step backwards because I’ll always be a Mum no matter what else I try my hand at.
I now see the true measure of success to be following MY dream, and throwing myself head first into it and giving it everything I’ve got!
And I’m finally at peace with myself now.
I know that I don’t have to prove my worth to anyone.
I have only been given the grace for MY life and no-one else’s.
And that’s AOK with me
Tonight we had “meet the teachers” night at the kids school.
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….
Life is good in the Madhouse lately.
No, in fact it’s better than good, it’s fabulous!
I’m not entirely sure if this is due to the fact that I am now well rested and therefore having a much clearer outlook on life or whether it actually just IS good, but I don’t care!
The kids have all been playing snakes and ladders together for almost an hour (which is usually unheard of here!) and Ella got the boys some breakfast and let me sleep in!
They don’t start the new school year until the 31st Jan so we have a couple of weeks together at home.
On Saturday, we drove home from Mum’s and as soon as we walked into the house, Harley ran quickly from room to room looking to see if anything had changed.
He ran into his bedroom and threw himself face first onto his bed exclaiming “Oh sweet rockets, I’ve missed you SO much” .
(He has rocket ships on his quilt cover for all those wondering what on earth this meant!)
He then walked out into the family room area and spun around several times on the spot in pure happiness and then ran over to the kitchen bench and planted a big kiss on it!
I have NO idea why he did this but we all giggled at him anyway.
Lucas walked into his room and yelled out “THOMAS…….WOW, thanks Mum!”
I cracked up laughing at this one because he has had his Thomas the tank engine quilt cover for about 8 or 9 weeks now but because we were away for 5, I think he may have forgotten about it!
Mr Patient is making a concerted effort to come home earlier from work so he can spend time with the kids and I burst into tears yesterday when he arrived home and turned the key in the door and the boys ran up to him screaming “Daddy, Daddy, Daddy!”
Their excitement was almost tangible!
He walked up to me and pulled a bunch of flowers out from behind his back and kissed me on the cheek!!
Of course I was suspicious as to why he was buying me flowers… but didn’t allow myself to vocalise this in case he was hurt by my assumption.
But it turned out that he had stopped to buy some shaving cream and deodorant on the way home and had to walk past a florist. He told that he bought them because I deserve them awww…..
After dinner, we sat down and did floor puzzles and played board games as a family. The he wrestled the boys to help get their energy out and I thought my face was going to crack from doing so much smiling!
This year, Mr Patient and I have made a new pact.
Every night at 8pm, we are going to switch off all computers, televisions and phones and we are going to spend half an hour just talking to each other. This will be the time that we discuss any concerns we have, share any ideas and make any necessary plans to deal with any ugly situations that might arise.
We talked last night about the new school year that is fast approaching and later this week, we are going to sit down together and write out a plan for how to handle Harley and his new teacher. I am still undecided about whether or not I should give Miss O this blog url or not.
Part of me wants to so I’m kept accountable and it will stop me from getting ugly with words when I’m not happy about something. And it would also be a good tool for her to access ideas about handling him and give her some insight into “home Harley” as opposed to “school Harley” but there is a small niggling part of me that wants to keep my safe place a secret.
Besides…..his teacher from last year has read the blog anyway, so there’s still a possibility of her finding it anyway.
But I’m certainly not going to lose sleep over this decision.
Onwards and Upwards I say!
So….Come on twenty eleven…..give me your best shot!
Last week when I flew back home to spend the week with Mr Patient, I was expecting to walk into a complete disaster zone.
Our house was less than tidy when the kids and I left for Mum’s all those 5 weeks ago
At that time, I was exhausted, over it and really couldn’t bothered doing anything about it. I just wanted a break.
So imagine my surprise (and delight) when I walked from room to room in our home, only to discover that Mr Patient had worked his tail off remedying all this!
The baskets of un-folded clothing were now folded and sitting neatly on the children’s beds that were now made!
The carpets were vacuumed, the bathrooms sparkled and the tiles in the rest of the house shone from the cloudy ammonia scrub that he had given them!
I was so impressed!
And when he told me that he cleaned out the fridge and freezer as well – I simply couldn’t wait to see it.
I opened the fridge door and just about split my sides laughing!
It was the epitome of a man who has been living the bachelor lifestyle for 5 weeks…..all the “necessities ” were there.
Ham, butter, eggs, a tin of pineapple pieces and beer.
And that was it!
The freezer only contained 4 microwave TV dinners and ICE cubes LOL!
The next morning, he walked into the bedroom with a boyish smile covering his face and excitedly took me by the hand to show me his creation that he was SO proud of.
He made a “sun” out of gluten-free crepes and strawberries for me with freshly squeezed orange juice….jealous anyone?
After breakfast, he told me to go and relax while he did the dishes.
So I did!
We spent the next few days window shopping, having “real” coffees together at coffee shops and going to movies.
On the Wednesday, we travelled to Sydney to stay at the Hilton Hotel….which was quite a treat for this country chick!
It was an amazing the view from our window on the 29th floor….thankfully I’m not afraid of heights!
That night, we went out to a posh restaurant on Sydney Harbour overlooking the Opera house.
We had a gorgeous waiter with a French accent who kept re-filling my wine glass..eeeek!
I had to ask him to stop as I was quickly losing track of how much I’d consumed…..Mr Patient thought it was hilarious!
The dinner conversation was a reall hoot too~It centered around waitressing stories from my past.
Mr Patient knew that I’d worked in hospitality for years, but it was all before we met so we never really had a need to talk about it before.
I worked in restaurants in various roles for quite a few years, doing everything from waitressing to managing , to being a coffee Barista to a hostess.
One time, when I was employed as a door hostess at an exclusive restaurant in Brisbane, I got a warning “red card” from my employer after being caught asking patrons if they wanted to sit in smoking or “passive” smoking?
Another time, I got a severe talking to after throwing a fork back at a customer’s head after he threw it at me to get my attention after I continually ignored his finger clicking.
I remember haughtily telling the customer to “use his words”.
I never expected that years later I would be using those same words in a completely different context with my own children!
(For all you Northern Americans and Europeans reading this who are wondering how on earth I managed to get a decent paycheck being such a feisty young thing, let me explain that here in Oz, we don’t rely on tips to survive!)
Tips are rare here and waitresses get a decent enough wage already.
…..Well….not decent but when you’re 18….at least its money!
On the Thursday, Mr Patient and I went to the Powerhouse Museum in Sydney which was fantastic.
They had an ABBA exhibit and an amazing… 1980′s one as well!
I giggled to myself as I played “spot the aspie” all over the museum!
My favourite was a young man who was probably only about 16 years old, with the tell-tale awkward stance, deadpan facial expressions and quirky dress sense who came up to us in the 80′s exhibit while we were answering questions to a music quiz on one of the interactive displays.
We got caught up in his long monologue about Duran Duran and the Australian music scene from the 60′s throught to today , and Mr Patient and I gave each other a knowing look and smiled and nodded in all the appropriate places.
Gosh he was adorable!
It truly was an amazing week.
Therapeutic, relaxing, teaching, enjoying and most of all….healing.
Thank you Mr Patient….. I know that we are going to be A.O.K…