Today, I gave Harley’s room a bit of a spring clean so it’s in order before he starts school for the year tomorrow morning.
I was tidying his shelf of teddy bears and for the first time, I actually realised that I think I know where my kids get their love of plush toys from.
Here in clockwise order we have:
Daddy’s childhood teddy: “Mr T.”
Mummy’s childhood teddy: “Teddy”
Harley’s teddy: “Bo”
Ella’s blue floppy puppy: “Bluey”
And Lucas’ sheep:“Lambie”.
What a lovely family of fluff!
Ok….so you may as well all know.
I actually have 2 blogs, my other one is for my poetry and where I write down anything big that God has shown me in my life and this poem was intended for this other blog but I accidentally posted it on madhouse by mistake!!
I figured that since it would have already gone through to all my subscribers emails that I would just leave it on here anyway .
This is me, love me or don’t 
..
Lord – you are with us, watching as we sleep,
You speak your words of wisdom through our dreams,
You tell us that we’re strong even when we feel so weak,
And that things are often better than they seem.
.
For what has been intended to rip us all apart,
Is just a little scuffle to You Lord,
There’s nothing that can harm us because you’re in our hearts,
And there’s victory’s in the power of your word.
.
You know what’s going to happen next, for you it’s not a shock,
You’ve seen it all before it even was,
I trust in you because I know you are a sturdy rock,
And my hiding place in rough times….just because …
This afternoon after we went to the school to meet Harley’s teacher, we went out for coffee and cake as a family to make the most of the last few days together before school starts and Mr Patient goes back to work.
While we were there, we saw one of the girls in Ella’s grade in the shopping centre hanging around with another couple of girls that Ella also knows.
This girl is nasty.
Let’s call her *Sophie.
Sophie is a bully and is one of the girls that has made Ella’s life hell the past few years.
The group of girls spotted Ella and called her over, and Ella hesitated but then started to walk towards them obediently.
I looked straight at Sophie, eye-balled her and said “No” very firmly while grabbing Ella and pulling her towards me and draped my arm over her shoulder protectively.
Sophie gave me a look of daggers and pulled a face at me and whispered behind her hand to the other girls and they all started giggling and walked away.
Immediately I wondered if I had done the right thing.
Had I been too overprotective?
Had I embarrassed Ella?
Did I overstep the invisible line of what’s acceptable behaviour between a mother and her pre-teen daughter?
It turns out that in Ella’s eyes…No.
Not even close.
She told me later that she didn’t want to go over to them but she was too scared to not go.
In fact she thanked me. But she did say that she was sure that Sophie was going to make a bee line for her on Monday morning with her posse and that she is sure that this wasn’t going to be the end of this.
A little history.
I’ve had Sophie stay in our home on a few occasions over the last 6 years and have gotten a very close view of the “real Sophie”.
Not the sweet Sophie that the teachers see.
Not the Sophie that her own mother boasts about.
Not the Sophie that the principal calls on to show new students around because she is “such a great servant”.
But the Sophie that achieves academic awards and acts all demure and humble around the teachers but then turns around and pokes her tongue out at and taunts the students that didnt win anything behind the teachers back.
In the past, Sophie has been disrespectful and rude to my face and she has been difficult and challenging to have here.
She has teased Ella UNDER MY ROOF about the way she talks, acts and what she chooses to play with.
And once when Sophie’s mother asked me how it all went after we’d had her here for the afternoon, and I told her SOME of what went on – she looked me in the eye and declared that her daughter was an angel and that I must be mistaken because Sophie would NEVER do those things.
She didn’t believe me and didn’t want to know about it.
Unsurprisingly, she stopped calling me and I’m sure that I became the subject of many of their family dinners.
The next week, Ella was pounced on by a group of boys in the playground because Sophie told them to “Go get Ella”.
Ella spent the lunch break hiding in the toilet block crying by herself.
So, Yeah. I think I was justified in saying “No” today.
And I told Ella that if Sophie dares to ‘punish’ her in some way for this on Monday, that she was to go directly to the head teacher and tell them exactly what happened and not to leave out any details.
She turned to me and gave me a kiss on the cheek and a hug and said “I love you Mum”……and I knew then that it was going to be a great year for her…..
To be continued…….
My little boy has his bag packed,
His clothes are all laid out,
He cannot wait til school goes back,
It’s ALL we hear about!
.
He’s busting for this break to end,
He asks us EVERY day,
“How long until I see my friends,
So I can go and play?”.
.
“Just three more sleeps” is what I said,
This evening when he asked,
“You’ll have to wait now GO TO BED,
and dream of your new class”
.
“But Mum!, I can’t sleep – it’s much too hard,
My brain just won’t slow down,
I’m thinking about school and playing in the yard,
With my bey blades and sharing them around”
.
So I turned to my boy and I started to say:
“I know you’re excited son,
But you’ve got to wait until this Monday,
So….try to sleep…Before you know it….it will come .
……………….
We went and met his new teacher today.
All good so far.
We have our fingers, toes and everything else crossed that it stays that way !
I pray that this excitement of Harley’s carries through the hard, anxious and sad times that may come.
There’s one happy Mumma in this here Madhouse!
Things seem to running quite smoothly a for a change. This afternoon I had to go down and register Harley for the therapy that he attends called *Social Group.
This group is run by a wonderful lady called *Miss Lucy who has so many qualifications in autism, special needs and teaching that it’s impossible to remember them all let alone list them.
Suffice to say that she is an ASD legend!
She runs workshops, works NATIONALLY with schools and is well-known throughout autism circles in Australia any we are SO blessed that she lives and runs this group in our own local area
At the group, the children (some with a diagnosis, some without) are taught a whole range of subject such as: reading, writing, social skills, appropriate behaviour, bullying, personal space, understanding emotions and communication.
They are helped “personally” with any difficulties they might be experiencing at home or school and Harley just loved going last year.
As you can imagine…..places fill very quickly and there is a long waiting list to get in.
We feel VERY blessed.
Despite being so in demand , she is so beautiful that she is not above talking to Harley on the phone if he’s having a hard afternoon and doesn’t want to go to Social Group.
WOW!
Just today, she emailed all the families some wonderful resources that we can take to the class teachers at the start of school (which is great timing as we are meeting the teacher tomorrow) and the best bit……she took the time to do a 10 things list for each and every child so that they can also give that to their teacher.
(This 10 things list was inspired by Ellen Nothbohm’s book.)
And I for one – was floored when I read Harley’s.
(crappy scanning job, I'm sorry!)
She knows my boy SO WELL and explained him and his struggles magnificently!
But….here’s the best bit……
This year due to having a larger number of girls- she has decided to start a girls group and she still had 3 vacant spots so I was able to secure a position for Ella!
Ella is ecstatic about this and so are we!
I also asked Miss Lucy if she could please let me know after a few months if she (in her professional opinion) thinks that I need to pursue a diagnosis for Ella as her opinion holds a lot of weight and I know that things would fall into place a lot easier with Miss Lucy on side.
So…the wheels have already started turning on what I am determined to make a fabulous school year.
Let’s see if I’m still this happy once school is back in full swing and the routines and homework and playground struggles start.
Ugh!
Nope…..not going there just yet.
I’m enjoying the “happy place” too much
* Names changed to retain her anonymity.
Happy Australia Day Everyone!
google image
(translation: How are you going? …Are you alright?)
Yep, today is Australia Day and it’s celebrated here in Oz every year on 26th January. You bewdy!
It commemorates the the arrival of the First Fleet at Sydney Cove in 1788.
So therefore, Australia is only 223 years old. Still a baby!
Anyhoo…enough of the boring history lesson, Australia Day is traditionally a LOT of fun
You can expect most families to bung a lamb chop on the barbie, pop the top off a tinny, chuck some more in the esky and kick back on the beach or in the park soaking up the sunshine, wearing their togs and thongs swishing away the blowies (flies) saying “Nah worries mate – she’ll be right!
There’s probably a group of blokes and sheilas bludgeing and getting stuck into meat pies and lamingtons , and a game of backyard or beach cricket going on somewhere!
Bogans are everywhere and those that have had too much booze, walk though city streets singing drunken renditions of “Waltzing Matilda” and children covered in Australian flag temporary tattoos and southern cross hats wave their little Aussie flags at passers by.
Contrary to popular international belief…..we do not all speak like Steve Irwin or Crocodile Dundee! But we do love them and they are national treasures.
The whole nation grieved Steve’s tragic early death in 2006, celebrated when “Our Princess Mary” married Prince Frederick, and the Australian spirit is alive and well as we launch into support mode to assist those families / individuals and businesses that were devastated by the recent catastrophic flooding in Queensland and Victoria.
We are generally known as a laid back, easy-going and friendly nation and from my experiences….that’s mostly true.
Whether you’re from the Outback, Tassie , The Alice, the city or the back’o'Bourke, Aussies are little rippers!
I’m proud to be Ocker. 
True Blue, Fair Dinkum, No Malarky.
(Have a good (day) alright!)
Sometimes, a blog post almost writes itself. 
Well…..not really, but when you include photos of your most recent wonderful adventure with your kiddies…..lots of words really aren’t necessary!
Excited x 3
On Friday just gone, Mr Patient came home early from work and we were going to go down to local park as a family and have a picnic dinner and let the kids burn off some energy on the bike track. But while I was in the kitchen packing the picnic, he had the idea that we should take them to the beach for fish and chips instead…
“YES, YES, YES….Can we pleeeeease Mummy” was the excited cry that the kids gave as they came into the kitchen almost jumping out of their skins with excitement!
And so it was decided.
Yes, I'm wearing a skirt. No-one EVER is allowed to see my thighs. ok!
I don’t like to give my location away but I can safely say that we live in one of the capital cities. They all have a beach of some description as they are all coastal ( or close) so that’s not really saying too much 
Anyway…..
We got the kids dressed in their swimmers (or togs, bathers,costumes depending on where you live) and threw them in the car.
It was a perfect setting and the kids LOVED it.
Mr Patient and I asked ourselves why we don’t do this kind of thing more often?
The ocean was warm, the sand was soft and the tide was perfect. The kids were in sensory HEAVEN!
Harley loved the weight of the sand on his legs
They played in the ocean for about an hour and then we decided it was time to eat.
After our dinner of filthy, greasy, fattening fish and chips and soft drink (soda), we decided to go for a walk along the sand to try and *ahem* digest some of the crap bad food that we had just filled our bodies with!
We ran into a family that we are friends with who has also come down for the day AMAZING! So we got to catch up with them as well.
After we had successfully worn the kids out, we drove home and had NO problem getting anyone to fall asleep that night!
I love my family, I ADORE Australia and we really are SO blessed to live so close to a fabulous beach.
I think this will DEFINITELY be something we make more of an effort to do regularly from now on.
Well as of today, it’s officially one week until the kids go back to school to start their school year. 
Ella is starting year 6 and Harley year 2.
Lucas was going to start Prep but because of the trouble we had toilet training him, we had to hold him back another year.
The good news is….he is now fully trained! (Finally)…YAY!
But he will now do another year of pre-school instead.
This past week has certainly been an eye-opener for me. I’ve discovered a lot about myself and have identified some areas that still need some work.
Like school for example.
It’s been no secret throughout this blog that last year was complete hell for Harley and also the rest of the family as a direct result.
This time last year I was excited about my little boy starting year 1 and he couldn’t wait to see his friends again.
I’d already been in and met his teacher and had a face-to-face meeting with her which I left feeling elated, confident and I was full of a healthy (I thought) anticipation.
But the wheels started to fall off in a big way, only weeks after the school year begun.
The teacher didn’t cope with Harley and he was a complete mystery to her. She was at a loss as to what to do with him he sensed this, and as a result, he quickly spiraled downwards into a sea of uncontrollable emotional outbursts , bad behaviour , mood swings and extreme anxiety.
And that’s a volatile mixture right there!
Home life suffered, I had a breakdown and life sucked enormously.
I went through a very long and damaging period of anger, desperation , blame and I suppose there was some grief thrown in for good measure as well.
(Yes, I am a HIGHLY emotional being ..I’ve been called a drama queen many-a-time!)
Even after the brown stuff hit the fan and Harley ended up being moved into the other yr 1 class away from the daily nightmare that occurred between Harley and this teacher, I still struggled enormously with moving on.
After all – I was the one that had the nightly ritual of calming and placating my terrified little boy.
At the initial meeting with Harley’s teacher at the beginning of the year, I took along with me a small handful of information that loosely related to Harley and how ASD looked on him.
I was sweet, affable, humorous and jovial to the teacher and really wanted her to like ME!
In hindsight, I can see that I was largely unprepared and didn’t give her the tools she needed for helping Harley.
(That said, I’m NOT blaming myself here, because as the year continued on, I got my act together and started to take more and more helpful information in to her and offered a LOT more in the way of advice but she wouldn’t take it on board).
But not this year.
Hell no!
You should SEE what this year’s teacher is going to be given!
I have spent hours, days, weeks and months compiling lists, ideas and hints to make this year run even more smoothly for ALL involved! I have a huge pile of printouts that I still have to decide which ones are the most useful.
I have printed up and laminated another copy of *this* for her and an extra copy for Harley to leave in his bag for any casual teachers that he may have.
I have been reading social stories that are designed for school preparation to him at night and feel like I have done as much as I possibly can to help him transition smoothly this year.
Of course I want this year’s teacher to like me (and it certainly make things easier) but my son and his needs now far outweigh my desire to be accepted.
In reflection, I’ve discovered that my longing to be accepted by the teacher last year stemmed from my own self-doubt and lack of confidence.
I was also still hurting because a lot of the other school mum’s had stopped calling me, stopped inviting me places and basically all fallen away since my misunderstood little boy had become the “naughty kid”.
I was vainly clinging to the possibility of last year’s teacher being “ The One”…
The teacher, who Harley would remember in his adult years as “The One” who believed in him.
“The One” he would tell his own kids about, “The One” who understood him and “The One” who helped him reach his full potential..
But I can now see that I put her on an unachievable pedestal and my expectations were little too high.
I argued in my head that because Harley “deserved” the best that he would automatically receive it.
Not so, Life is just not that simple.
God has recently reminded me that I often fail to come through with the goods but that He forgives me and extends me undeserved grace.
He loves me for who I am – faults and all and knows that because I am human that I will continue to miss the boat and stuff things up! But that won’t affect his forgiveness.
I still have some raw emotion rise in me when I think about the events of last year but I am no longer consumed by guilt, anger, bitterness and grief.
I have been able to get past it and chalked it all up to a learning experience.
And THIS year…I’m going in expecting GREAT things but being a little more realistic.
7 more sleeps….bring it on!
The lady of the House has an opening for a full-time live in understudy mother.
All applicants will be subjected to a “working with small and whiney animals” background check.
The successful applicant will also be housed in the prestigious Madhouse, located at the end of a cul-de-sac in a quiet suburb.
However – even though it is part of a “quiet family orientated” neighbourhood, it is guaranteed to be the noisiest house on the street . Therefore an iPod with soothing music already downloaded onto it will be provided to the successful applicant on appointment to help maintain sanity for the duration of their employment.
The successful applicant will be required to;
* Have a current drivers license as the position requires great amounts of driving which will be expected by the Juniors in the Madhouse and you will never receive any thanks for it.
* Be able to tune out whinging, crying, screaming and fighting in the car.
* Wear a referee whistle and be able to correctly identify the child who started the argument and deal with it appropriately.
* Speak 4 year old gabble fluently and interpret it to the Man of the House on demand.
* Be willing to listen to monologues about Ben 10, Stealth Bombers, aircraft in general and Thomas the Tank Engine that could potentially bore you to death and go on for hours without poking yourself in the eye.
* Be schooled in what’s an acceptable fabric for clothing and what’s not.
Please note: This is changeable from child to child and day to day so qualifications in this field need to be current.
* Be willing to argue with teachers/therapists/Doctors and advocate loudly for the children even when you’re being belittled for it.
* Learn to cope with minimal sleep. (2am is considered an early night here.)
* Have an ability to interpret grunts, moans and whining and then provide what was requested before an anger explosion follows.
* Not react to being called “fat”, “horrible”, “mean” or “the worst mother in the world” when Madhouse Juniors are not coping.
* Know the difference between a tantrum and a meltdown and act appropriately each time.
* Learn NOT to phrase things literally. If you tell a Madhouse junior that it’s raining cats and dogs – be prepared for them to go outside and look up at the sky expectantly.
* Be able to deflect stranger’s comments in public tactfully whenever a meltdown occurs and have a thick skin to endure the judgements that inevitably follow.
* Cooking is not a big requirement….there are only two meals served in the Madhouse.
* Realise that you’ll never be able to do anything impulsively ever again.
* Throw our ALL parenting books except those pertaining to SPD or autism. They are all useless here.
* Know that the madhouse juniors do not follow the same “rules” as what is described in these books.
And the “rules” to change frequently. (One day it’s ok to hug, chase or joke with madhouse juniors – the next day it’s a trigger for a catastrophic fit!)
The applicant will also be required to:
* Run a hot bath for the lady of the house every night and have a glass of champagne chilled , scented candles burning and Michael Buble in the CD player.
* Clean the madhouse from top to bottom every day. All washing and ironing needs to be up-to-date and bathrooms must be cleaned daily…. Vacuuming and mopping needs to be done every 2nd day.
* Wages will be (yeah right! – cue eye rolling and raucous laughter!) The satisfaction of knowing that the children are safe, fed and sheltered.
And lastly…..this is the best job in the world. If you’re not willing to sacrifice everything for these precious Madhouse juniors….you are not suited to this role .
Applications should be addressed to
The lady of the Madhouse,
Unit 3
21 Dream-on lane.
YEAH-RIGHT TOWN
246810
Endless caffeine will be provided to the successful applicant as well.
Well, although I have a drafts folder full of half written really deep and meaningful blog posts, I couldn’t really be bothered putting any time or effort into finishing any of them at the moment!
So…..I present you with this instead
Yes…..it’s exactly what it looks like!
These pics were taken up at Mum’s in her courtyard when she was pruning her ferns.
And of course EVERYBODY knows that the best thing to do with discarded fern branches (Thanks to Ro, I now know that they are called “fronds” not branches ) is…..stick them down your pants and pretend they’re tails???!!!!!
Naturally!
The boys spent the rest of the afternoon walking around shaking their tooshies to make the “tails” swoosh.
They even had a “tail fight” (which ended rather badly…tail up the nose anyone?)
We had to eventually put a stop to the frivolity as the conversation descended quickly into “Your tail is bigger than mine”. But it was a cracker way to spend an afternoon don’t you think?
Life is good in the Madhouse lately.
My lovely flowers
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!
After my little emotional outburst this morning, I thought that it would be much nicer if I cleared the air by posting something lighthearted.
I’ve popped on over to see Jen @ The King and Eye and have taken part in her fortnightly blog hop Blog gems.
So follow the link and head on over to check out some other funny posts. (after reading mine of course)!
This weeks prompt is “An event in your life”.
I started blogging because I struggle daily with raising these beautiful children that God has entrusted me with, and I wanted somewhere that I could journal my thoughts and experiences and have something that I can refer back to occasionally so that I can see just how far we have all come!
But…
I have been very saddened lately and have become quite disillusioned with blogging altogether.
Maybe I take things too personally, maybe I’m reading things into situations that aren’t really there?
Who knows?
I also know that the people that have upset me are unlikely to read this blog post, because (to my knowledge), they don’t even visit my blog but I feel like I have to get this out anyways.
PLEASE NOTE: the wonderful bloggers on my blogroll to the right of this page are NOT part of this, these bloggers are wonderful and helpful and have been nothing short of fantastic to me
***
There are a huge number of blogs written by adults who are on the spectrum whose blogs I read regularly and I really enjoy reading them.
These blogs give me such wonderful and different perspectives, and provide insights into aspergers that I otherwise wouldn’t be able to have-and they might help me to be a better mother to my children.
I comment regularly on a number of these blogs and thank them for their guidance and for providing such a marvellous window into their lives.
Most of my comments either don’t get published by the blog author, get jumped on immediately by other readers who take pleasure in pointing out my mistakes or they come and leave nasty comments on my blog which of course I don’t publish
I simply don’t understand.
What’s with this NT versus aspie mentality that’s so evident in bloggy land?
WHY does it even exist?
I have noticed on a lot of aspie blogs that the commentors are quite often outright nasty to NTs. We are all grouped together in one big pile of “useless” and I don’t get how it’s ok to NT bash so brazenly.
Well….here’s my take on it….
Let’s imagine that I moved alone to a foreign non-English-speaking country (let’s invent one…..Coffeetopia!) with a culture that I didn’t understand at all!
I had no clue about the language that was being spoken, didn’t understand ANY phrases or words, no-one bothered to explain it to me and I felt lost and like I didn’t fit in.
I didn’t understand why people had the rules and regulations that they did over what I considered to be pointless endeavours.
Every morning , I woke up wondering when this was going to get better and when (if ever) I would find someone who I could relate to.
Then one day- an Australian family moves in next door.
They have other Australian friends and relatives in the same town that they happily introduce me to and before I know it……I suddenly feel like I fit in for the first time. I feel accepted.
My new Australian friends help me to feel at peace again.
Suddenly Coffeetopia isn’t so scary anymore, and I have somewhere to escape to, people who “get” me and I can truly be myself.
Of course I’m going to feel an instant attachment to these fellow Aussies and stick close to them.
Now,
Let’s imagine that a native Coffeetopian adopted a child from an English speaking country and although they loved and accepted this child for who they were, they were still completely unable to relate to them and turned to me for help or advice.
Wouldn’t it be not only rude but strange if I turned them away or ridiculed them because “they aren’t one of us” even though they were just trying their absolute hardest to do the best that they could for their child?
Sure…..I’d have a natural preference for the Australians…they are people like me that were the same as me and understood my struggles living in this foreign country…but that shouldn’t mean that when an outsider comes in trying to start a friendship, that I instantly disregard them because they were born Coffeetopian.
***
Through my close friendship with Lisa (the alien hippy) , I have discovered that sometimes, adults with aspergers are carrying around a lot of hurt from their pasts and have more than likely been hurt by other neuro-typicals their entire lives.
I HATE that and my heart breaks for them.
But we are not ALL like that. I promise.
Yes….I know that I am not even close to having it all together. I’m sure that on many occasions, I have written something (innocently) that may have been misunderstood and sometimes, I may have attributed a certain trait to aspergers that is in fact- just a personality trait and not indicative of aspergers at all.
Please know that my intentions are always pure. I’m never poking fun at aspergers.
But you have to remember, that I am an NT island in a sea of aspies here in this house and it’s difficult for me to work out which is which at times.
The “judgemental and ridiculing mother” is such a stereotype that genuine NT mother’s like me are battling to overcome.
I have never claimed to be an authority on aspergers or autism and I have no formal qualifications in this field , but I do try 100% to do what’s best for my children and family.
I’m sorry if I have offended anyone, that is certainly not my intention but I needed to get this out.
It has crossed my mind a number of times recently that my own family may one day take a similar attitude to me and treat me with contempt because I am “one of them”.
I’m believing that God will step in this will not happen as I continue to nurture my family the best way that I know how.
How many of you play the comparison game?
You know the one I mean….the game where you always-without-fail come out the other end feeling second best?
Well….I have indulged in that a lot in months gone by. Even though, I know it’s just plain stupid!
I people watch a LOT!
Every time I go to a coffee shop, a supermarket, a bank, a post office…I see other parents and their perfect kids.
(That is of course if I get a moment to take my eyes off my absconding little rat bags! My boys are notorious escape artists and I am known by the centre management at our local shopping centre as they have done this so often…
Ugh!)
As I was saying….it’s easy to see other people’s lives as better than your own when you’re looking for it.
This school holidays, Mum and I took the kids ten-pin bowling. We went prepared with ear phones for the boys, a social story before-hand and a plan for a quick escape route if it was needed.
We talked to them about the flashing lights, the loud music, the heavy bowling balls and the special shoes so they would know what to expect.
The first time we went, Harley got himself into a bit of a flap when he found that he couldn’t bowl as well as he wanted to. He expected it to be as easy as the Wii bowling and was quite mad when it wasn’t.
His shoes were irritating him, his socks kept falling down and his ear phones were tight on his ears.
In the midst of all this discomfort, and sensory overload, he forgot how to use his words. He had a mini meltdown and made it clear that he wasn’t at all happy!
I noticed the family beside us watching our boys with their bright green earphones and their little quirks and wondered what they were thinking.
I saw their kids staring at Harley in disbelief when he lost it and I also saw the parents try to distract their children’s attention away from this obvious display of “bad behaviour”.
~
The next time that we went, it was SO much better. Lucas took his earphones off almost straight away and Harley followed suit about 20 minutes later as they knew what to expect this time.
They had more of a technique worked out as far as bowling went and as they were a lot more familiar with the noises, lights and action, they self regulated a lot more.
But THIS time, the family next to us weren’t a nuclear family at all.
No, in fact Mum and I looked knowingly at each other as we realised that this family was special.
It was made up of 2 women in matching polo neck t-shirts and jeans, and 4 kids who all had special needs of varying severity.
One of the children would jump up and down on the spot clapping furiously with obvious joy whenever another of her team mates knocked over pins and she spun in circles at intervals humming happily.
There was another girl who wore coke-bottled lens glasses and gripped her carer’s hand tightly as she limped up towards the bowling lane with her carer carrying the ball for her.
There was a young boy who looked about 10 who was adorable. He sat almost right on top of his team mates talking their ears off totally oblivious to the fact that he was being ignored.
And lastly, there was a large boy who was in his early teens who I think must have been slightly mentally challenged as he didn’t have any speech or motor control at all.
He covered his ears and rocked and screamed for most of the time and he moaned unintelligibly and drooled a lot.
I went over and offered a set of our ear phones to the carers as he obviously had issues with the loud music and they thanked me but said that they doubted that he would handle anything touching his ears.
Turns out they were right!
I got talking to one of the carers for a while and she told me that these children were on a respite excursion for the day to give their families a break.
It broke my heart.
Yes, my boys have issues, they struggle with pretty much every aspect of daily life but I learned a very vital lesson this day.
I learned that it’s dangerous to make comparisons between your life and other peoples.
Especially when you haven’t walked in their shoes.
Because other peoples shoes don’t fit my feet just like Grandma’s shoes don’t fit Lucas
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.
One of the few times in my life that I've actually dressed up!
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…
So…We’ve all heard that old quote “don’t judge a book by it’s cover” at least once, if not dozens of times right?
I know that for me, it’s always been one of those cute little ditties that never really meant anything much to me.
In fact, growing up, I always used to take it literally.
As in, I wouldn’t necessarily NOT read a book because the front cover was un-interesting and boring but as I got older and (hopefully) wiser, I learnt that it can be applied to many different aspects of life.
Like for example……men!
I think my husband is spunky. (And to be honest, he thinks he’s pretty darn good too……can you say ‘conceited’ girls and boys?) LOL!
But I understand that men definitely ARE like onions! They have MANY layers!
Now……men are known for not being the most *ahem*….shall we say… “open” beings!
At times, I have had to peel off a helluva lot of layers of ‘macho’ to discover something even slightly resembling emotion in Mr Patient!
But here’s the great part….. I know it’s there now.
This past week where the two of us have been alone together whilst the kids have been having the time of their lives up at Grandma’s – has been wonderfully healing for both of us.
*********
I ummed and ahhed whether or not to blog about this next bit, but I eventually concluded that I made a promise to myself that I was always going to be upfront and honest to my readers whenever possible.
I owe you all at least that…….So here goes…
Late last year, I had decided that Mr Patient and I were over…I was leaving.
I’d made plans, enough was enough………we were finished, kaput, separating, done.
I hated his job that took him away from us so often.
I hated the fact that I was left alone to raise “challenging” kids a lot of the time.
And I hated that he didn’t seem to notice how exhausted I was becoming spiritually, emotionally, mentally and physically and that he really didn’t seem to care that he was adding to this.
I really felt like I hated him.
I was frequently caught up in damaging thought patterns such as:
“How dare he chose work over family”
“How dare he expect me to do this all alone”
“How dare he step down from his position as man-of-the-house.”
I teetered on the edge of mental breakdown every single damn day and was treading water for so long that I can’t remember even getting in the damn pool in the first place.
I was so angry. I was feeling hurt, deserted and over-stretched.
Then one day, I made a decision that autism had stolen ENOUGH from this family and I’d be damned if I was going to let it have my marriage as well.
It’s been written about numerous times over the years, that couples who parent a child with autism have a significantly higher divorce rate than those raising typical children.
I haven’t researched it fully myself but I can see why this would be the case.
Ok.
So there is evidence out there that a strain is placed on relationships that deal daily with the ups and downs of parenting an autistic child, but what about when one of the adults is also on the spectrum?
What then?
There is a part of me that realised that because of this fact….. Mr Patient was unable himself to cope with the constant drain of these noisy, unpredictable and extremely high maintenance kids.
But a louder and more aggressive part of me didn’t care and wasn’t prepared to give him the same grace that I happily give my kids in the same situations.
After all….he’s an adult now. I don’t need 4 kids.. he should just man-up and get over himself right?
Well….right AND wrong.
Yes, he should have pulled his weight (being that he is the other half of the parenting team), but no, because he was completely ill-equipped to recognise let alone cater to mine and the children’s individual needs at that time.
He opened up to me and told me that he has struggled with the boy’s diagnoses from day one.
He chose to go into a state of complete denial because he didn’t know what else to do.
Men aren’t allowed to cry whenever the urge takes them, or have deep and meaningful conversations with their mates.
They rarely hug each other, they won’t admit when it’s tough and God-forbid they actually admit that they are feeling lost and hopeless – lest they have to hang up their crown jewels and be forever labelled a sissy.
This week, he told me that he had no idea that I was as close to leaping over the cliff as I was.
He acknowledged that he had in fact contributed to this in a very big way.
He said that he would watch me as I scoured the internet, books and papers researching autism constantly and regularly, he noticed that I was (seemingly tirelessly) running the kids between this therapy and that therapy and thought that I had it all under control.
I would often give him non-verbal clues that I wasn’t coping by huffing, sighing loudly, slamming down the receiver of the phone mid-way through a phone conversations with him, rolling my eyes at him or just dissolving into endless tears at in-opportune moments.
Turns out…..he didn’t read the cues at all.
His words when I exclaimed my exasperation with him one day were:
“Well Fi, did you ever actually SAY that you weren’t coping?”
Um……No, not really, I guess not.
This was the start of the next chapter of our lives…HEALING.
*********
We just had the best week together since we were married way back in 1998 and I know that better days are coming.
It’s amazing how much better the human body copes with life when it’s rested, at peace and relaxed.
I am now able to focus more clearly on issues that need to be dealt with, without being so overcome with emotion that I can’t see sense, and I am a lot more able to “not sweat the small stuff” and take things one step at a time.
We were designed this way. To function healthily and calmly…NOT to live in a constant state of anxiety and emotional upheaval.
I know that this is all part of life and that we really DO have to go through a lot of hard, trying and testing times.
But the key word is “through“.
Not around the mountain, not over it, not under it, not beside it but through it.
Only then are we fully able to say that we made it through our trials.
And remember……It takes a lot of manure to grow a beautiful garden.
Happy 2011 everyone x
***********WARNING….THIS POST HAS HIGH SARCASM CONTENT************
.
So.
The calm before the storm.
The eye of the hurricane.
Call it what you want but I believe that this is what my Mum is experiencing right now.
Ok. So maybe I’m being a little melodramatic and negative but seriously…..
I rung my children tonight as I have done every night this week and they were beautifully well spoken and behaved.
Mum told me how Ella has gotten up in the mornings and made her bed, tidied her belongings and gotten dressed.
I took a deep breath and said:
“I’m sorry…WHAT?”
” I KNOW”
Mum replied understanding my surprise.
This child and I have arguments almost daily over the disastrous state that she insists on leaving her bedroom in.
Most of the time, it resembles a dis-organised garage sale.
Everything thrown in messy heaps….the clean clothes indiscernible from the dirty ones, books, paper and stationery items seems to breed and if you’re REALLY lucky…you might even be able to find her bed!
Mum made a point of telling me because she and I KNOW what this really is……
And Harley, well….Mum told me that he has started to “lose” it a couple of times and pulled himself back immediately remembering where he was.
She said that the 3 kids haven’t really had a verbal or physical fight at all, the entire time I’ve been here.
(Mum and I had to break up on average of 7-8 a day during the 4 weeks that I was there).
Lucas – well….. He’s been 100% himself.
But when you’re 4 and a half, you don’t have much control over your emotions and it kinda just….comes out!
But like I wrote….Mum suspects that this is more than 3 children who are finally relaxed, calm and placid.
I admit that it’s certainly plausible that they have somehow magically transformed into compliant, well balanced children but it’s unlikely that this is anything other than high-functioning aspergers at.it’s.very.best.
You see, Mum’s best friend *Mrs M is staying with her this week while I am away.
And heaven forbid the kids show their true colours to her.
No…they need to be angelic and obedient and make Mummy look like a big.fat.liar!
*Mrs M (thankfully) is a close family friend and just happens to be a specially trained special needs teacher ,who was also the mother of a special needs child herself so there’s no fooling her anyway.
But the kids don’t know that!
Every day on the phone, Harley asks me the same question:
” Have you remembered to buy me a bey blade to bring with you on Sunday?”
And I always answer him the same way:
“Yes mate, just keep being good for Grandma and *Mrs M”.
And so he is.
So I guess, I kinda asked for it?
Well, I flew back home on Sunday so it has now been 3 days since I have seen my children face to face.
We have Skyped them everyday but it’s not the same as being able to feel their arms around you or their little sloppy kisses on your cheek.
Saying goodbye at the airport was tricky because Harley climbed up onto my lap with tears literally spurting out of his eyes telling me that he didn’t want me to go.
Lucas was lying on the floor cuddling his ragged but beloved “puppy” and Ella was sitting quietly saying nothing but there was sadness written all over her face.
I do miss them sure.
But what’s really bothering me is that I am not a blubbering mess nor am I particularly pining for them.
It’s been a whole mixed bag of emotions here but angst has not been one of them.
So of course, I am consumed with mothers guilt by this realisation!
The sad thing is that I believe it’s because I really really REALLY needed this break.
And Mr Patient and I needed time together as well. We were talking about it this morning and figured out that it is one of only a few times where we have actually had some time without the kids.
I fell pregnant with Ella only months after we were married and we spent our first wedding anniversary with me being almost 6 months pregnant.
She was certainly a big surprise and came a lot sooner than we had “planned” to start a family.
Add to that the fact that we had only known each other just over 10 months when we wed.
So we got to know each other as a threesome instead of as a couple.
Although I wouldn’t change a thing, because ALL of my children are an absolute blessing from God – I certainly wouldn’t recommend having children so soon after getting married to anyone.
Our honeymoon was AWFUL!
We flew up to an island on the Great Barrier Reef, but I got so sick that I had to fly ALONE (we could only secure 1 plane ticket) back to the closest capital city (which was Brisbane) and I ended up in hospital where I was eventually put on a morphine drip hallucinating about ants crawling all over me!
Meanwhile, Mr Patient was still up on the island trying desperately to avoid the island nurse who had a bit of a crush on him and was not very good at hiding it!
It’s all so funny now, but for years…it was the longest time that we had spent together without kids….and it ended miserably!
(We now look back and see that a lot of the signs of my brain tumour growing started around this time….the Doctors say that the tumour was so big that it probably grew over 5 years or so. We were married in 1998 and the tumour was found in 2004….so it adds up).
There was a time way back in 2004 that my Mum and Dad offered to take Ella and Harley for a week so Mr Patient and I could go away together but it all fell in a heap when I was diagnosed only days before we were due to leave.
So now you can see why we are embracing this childless week that was so generously offered to us.
I’m enjoying the little things.
I’m loving sleeping in….something that I can’t usually do….my kids don’t always necessarily come in and wake me up but their fighting and yelling does!
I’m loving the easygoing pace.
Whilst I know that this is mostly due to the fact that Mr Patient is also on holidays and we have nowhere in particular to go and no set timeframe to do things in….it is still very relaxing and therapeutic to take each moment as it comes and enjoy it for what it is.
I’m thrilled that I can tidy the house at night and get up the next morning and …IT’S STILL TIDY!
And only having to look after yourself is so….refreshing. But it makes me feel selfish all the same.
I’m now so used to thinking about the children FIRST and making sure that their needs are met, that it’s weird only having to consider number 1.
Mr Patient and I went out last night. Just because we could.
I can’t remember the last time that we spontaneously did ANYTHING like that!
When you have children…..life is less instant and more thought out.
…..But when you have children on the autism spectrum…..don’t even THINK about making a quick decision and acting on it! (Unless of course….you’re willing to pay the price later!)
So….I am spending this week relaxing, reviving my tired body and finding out who I am when I’m not Mum, taxi driver, chef, therapist, teacher, counsellor and riot negotiator.
I have discovered that I am loved and that’s good enough for me.
...Young love....
