I know this an old photo but it always make me giggle.
It’s not hard to tell who are easily distracted in our family is it?
In keeping with my promise to myself, I’ve just written the first of hopefully MANY posts that aren’t specifically about autism for this year. I’m finding ‘me’ and who I am and what I like.
This is the #yearoftheoxygenmask after all
There are four questions that I absolutely HATE in this house.
1. How much longer?
2. Do I have to do my homework?
3. What’s for dinner?
(Well, actually – this is a family blog so the fourth question that I hate will have to be left to your imaginations)
My answers to the top two questions are usually along the lines of:
1. “As long as a piece of string” (or never if you keep nagging me)
2. “Absolutely” “Hell yeah” or a sarcastic “No, We’ll just hand in a blank book” (which incidentally is NOT a good idea when you have extremely literal aspies!)
But for the third question, I usually fumble with my words and um and ah because I’m not known for being very organised in the whole cooking department. It is partly because I see it as a grand waste of time because my minions refuse to eat almost everything that I cook (therefore making me feel like a pile of manure) and it completely sucks having to think of something new to cook EVERY night knowing full well that it will probably be rejected anyway.
But hoorah! Now I have a plan.
(For those that know me…..don’t fall off your seats in shock- I know that creativity is not my strong point) but when I saw something like this on Pinterest a while ago – I have had it stored in my memory bank ever since and have been determined to try and make one when I got a spare moment.
So I found a small snippet of time (when I was able to hide from the kids and their incessant demands for me to entertain them, feed them garbage or sort out their latest squabble) and I made it and I’m super proud of how it turned out!
I struggle every single day to try and think of what on earth to cook at mealtimes as I have such fussy eaters in my family. There are a few tried and tested recipes that they don’t necessarliy actually eat ALL of but there are elements of every dish that they will have.
I ACTUALLY made this!!!! (shock, horror, gasp!)
The idea is that every Monday, Ella gets to pick a meal, every Tuesday Harley does, Wednesdays Lucas does then the same order on Thursday, Friday and Sunday nights. Mr Patient and I get to chose a special meal for just us for Saturday nights and tonight he cooked me Cajun blackened Chicken with pineapple and shallot rice.
The kids have to choose from the pile of meal cards that I have made up and because they get some say in what we will be eating….they actually enjoy it! And the best part is that being visual learners – they can see at a glance what is for dinner so they can QUIT ASKING ME!
It’s a complete win/win don’t ya think?
Oh …. and another bonus? My grocery bill came down by $50 this week because I only bought the things that were on this week’s meal plan. Seems I’ve been buying a lot that I didn’t really need all this time! Ooops!
To the person who has hurt us,
You do know who you are,
I want to tell you here- right now,
That you have gone too far.
I want to let you know that we,
Still love you just the same,
But it hurts me when you judge our ways,
And give me all the blame
You know my life is not like yours,
And it will never be,
I do the best with what I have,
So please don’t bad mouth me
My children know that they come first,
And have my full attention,
So forgive me now, if you’ve to wait,
And I am not perfection
I feel that you just inward look,
And make it all about you,
But in THIS house, we’re not that way,
You never seem to approve
I’m sorry if you feel that I,
Have been a dreadful pain,
I have no time for childish rants,
It’s puts me off my game
My days are filled with ASDs
And everything that includes,
So give me grace when I am not,
Always in the happiest moods
I’m sorry that I sometimes get,
All tense and non compliant,
But all this stress has turned my woes,
Into a towering giant.
I’ve never claimed to be immune,
To snapping under pressure,
But bringing up the past to us,
Just brings us such displeasure.
So instead of focusing on yourself,
Why not offer to shoulder our burden,
And walk a mile in different shoes,
Before just spurting your poison.
I work so hard but still you want,
To criticize me and complain,
You won’t believe in ASDs
So it’s always just the same…
I’ve tried to tell you all I can,
But you don’t want to listen,
So saying that I am “not right”
Has been your latest mission
If I’m “not right” then why do I,
Do most of this myself?
And manage to raise gorgeous kids,
With barely any help?
The things that you’ve complained about,
Weren’t done to tick you off,
My heart was right, and full of love,
But now….I’ve had enough
I can’t go on pretending that,
Everything is now okay,
I’ve tried my best – but it’s not enough,
I’ve nothing left to say
I truly hope that you get to,
The place where you find peace,
I pray that God will bless you lots,
And that this tension now will cease…..
Go away. Your lease is hereby terminated.
I know that I’m really not using my manners here, but seriously….you have all totally worn out your welcome in my son’s life. It’s time you move on to someone else. We don’t want you here anymore.
You are exhausting and you take up far too much of his time and energy.
We are ready for new exciting adventures and he cannot do that until you get out.
Anxiety, you have been with him the longest. You take the silliest little thing and cause him to perseverate on it for hours and hours until the whole freaking family almost goes around the twist!
You have forced him to take pills to keep you from enveloping him completely. The very mention of certain activities and situations awakens Fear, your partner in crime. And he’s a really sneaky bugger.
Insomnia, because of you, our entire family feels like the walking dead. Sleep deprivation is used as torture in some countries…..did you know that?
Torture…think about that for a minute.
We no longer want you hanging around causing havoc so get your bags, collect your last pay cheque and disappear forever without a trace.
My son has internalized so much more ickyness than should be humanly possible to bear. You have encouraged him to sit out of his own life and miss out on too many fun things.
I simply won’t let him miss out anymore. 8 year olds deserve to be kids and do the things that kids do without the debilitating grief that you cause him.
You need to find a new playmate.
And Fear, what can I say to you? You show up at the most inconvenient times, causing uncontrollable tears and ridiculous panic attacks. You need to develop more manners and common sense like nervousness who only shows up periodically and doesn’t need to be told when to leave.
So, scumbags, it is time for you all to make like a tree and leave.
I’d like to say it’s been fun knowing you all….but it hasn’t.
Since you’ve sneakily slid you way into our lives things have completely and entirely sucked.
So off you scoot, leave your keys under the doormat and don’t let the door hit you in the butt on your way out!
Best of luck to you….not!
Fi. ….Harley’s mother.
P.S. Please tell paranoia that he’s on notice and I’ll be talking to him soon.
Submit yourselves, then, to God. Resist the devil, and he will flee from you.
And that may be right, it’s true. But I think it’s like the old saying: “I’d rather wear out than rust out”… Meaning that I would rather be accused of doing too much for my kids than looking back in ten years time and being hit with the realization that there are still many areas that I could have given my children better life lessons in.
I don’t want to reflect with regrets and wish that I had tried this or attempted that. I want to be able to give my children the absolute best chance that I can.
God gave me these kids and with them came massive responsibilities. It is my job to give them all I’ve got, and if all of this looks like obsession than so be it.
I had a really interesting and eye-opening day today. After dropping Lucas off at pre-school, I was driving through a school zone. In these zones in Australia, the speed limit is reduced to 40kms an hour to protect our children.
As I slowed down for the zone I started thinking about these safety precautions and realised that before I had children – I didn’t really understand the necessity of these zones at all. I still adhered to them because it was the law but I just didn’t “get” them. And because I hadn’t experienced parenthood personally at that point – I didn’t understand the likelihood of a child running out in front of a car and how much worse it could be if the worst did happen and the driver was going faster than 40km. I used to assume that it’s was the parents job to keep their kids safe.
It simply hadn’t occurred to me that ALL kids run away or forget the rules or completely lack common sense sometimes and it was because of this that rules like the 40km zones were put into place. I then thought about how most people obey the road rules EVEN if they don’t fall into the parent category and how no-one really questions it even if it is annoying because everybody wants children to be safe whether you have any of your own or not. And then I started to notice some parallels between this and how society treats the parents of ASD kids and also the children themselves. You see…..Children are everywhere. Everybody either knows someone with kids or has kids of their own. So it makes sense to people to make allowances for children in everyday life.
And because of the rates of autism spectrum disorders rising rapidly – I believe that most people would know or know of at least one family with a child on the spectrum these days. So why aren’t there more services and special allowances put into place to accommodate this ever increasing group of society? I’ll tell you why….because those of us who live with it haven’t been speaking out about it long or loudly enough.
And that’s precisely what spreading awareness is all about. This is another reason why I blog. The more we push for equality, understanding and tolerance – the more society will accept our kids and make allowances for kids like mine with hidden disabilities. THIS is precisely why I preach acceptance and appear obsessed at times.
We need to shout about this until we’re heard and people become so used to our kids receiving the extra help and compassion that they need and deserve, that it’s something that becomes as second nature to society as slowing down for a school zone.
I’ve also been told that I see autism everywhere and that I need to stop seeking it out. But most parents of children on the spectrum will also tell you that it’s near impossible to NOT see it in your everyday life when you continue to learn more and more about it and live with it 24/7. It literally jumps out at you and you no longer HAVE to look for it!
Today I went to the hairdresser to finally cover those ever-increasing grey hairs and I was sitting reading while I waited for the colour to develop and a father walked in with his little boy who I guess was probably between 2 and 3 years old. His Dad sat him down on the chair and the hairdresser started to wrap the cape around the boy’s neck and then the little fella completely flipped out! He started clawing at his neck and trying to remove the offending cape and screamed bloody murder. The Dad cuddled him closely and tried to console him but he was unsuccessful.
The hairdresser started cutting the boy’s hair while he thrashed and screamed and kicked like crazy. He had tears streaming down his little face and he looked frightened out of his wits. He was being held there against his will and I could see that it was breaking the father’s heart to see his son so distraught and he stroked his flailing legs and kept repeating the phrase “It’s ok Xavier, it’s ok, Daddy’s here”.
But the little boy seemed unaware of his Dad’s presence let alone his words. I sat and watched the whole incident for almost 10 minutes and witnessed the hairdresser rolling her eyes at the other staff members on a few occasions when the father wasn’t looking. The hairdresser snapped at him a couple of times and told him that he needed to stop being a silly boy and to sit still or she’d cut him.
I listened and watched vowing to not get involved but I knew that this was going to be hard for me to keep out of. I couldn’t stand the way that she was speaking to an obviously distressed child and when she pulled the clippers out to neaten the back of his hair, he flipped out even more.
Well, she now LEANED on his shoulders and held him down while she shaved his neck and I thought he was going to lose his voice he screamed so loudly. His father was standing back – visibly disturbed with both hands on the top of his head looking helpless and upset and didn’t know what to do. Little Xavier was now rocking back and forth and moaning and humming to himself between the bouts of screaming and as soon as it was all over and the cape came off – he took off out of the shop in a mad panic dash.
His Dad grabbed him on the way past and apologised to me for having to sit next to the screaming and I shook my head and told him that I completely understood. I told him that my 5-year-old used to be exactly the same at the same age. I told him that what worked for my son was reading a made up story about the haircut for a week leading up to it to prepare him and to ask that the clippers not be used ONLY scissors. I also suggested that he bring a towel from home instead of the cape so that he doesn’t feel so restricted and he smiled and thanked me for my understanding and said that he would definitely be using those tips in the future.
He then explained that his wife won’t bring Xavier in anymore for a haircut because it traumatises her too much to see him get so worked up and that he now understands why! After they left – I went back to reading the magazine that was in front of me, and I heard the hairdressers who had cut Xavier’s hair make a loud statement to the other staff.
She declared that: ‘If it were HER child, she would have snapped him out of that ridiculous behaviour pretty damn quickly and that no child of hers would have been allowed to pull that kind of charade on her!’
I sat there clenching my jaw telling myself to stay out of it. I told myself that it was none of my business and that it had absolutely nothing to do with me but when she then added: “And what’s with all that screaming? It’s just a bloody haircut! Sheesh!….. deal with it mate!” Well, I knew that now I simply HAD to say something.
I asked her if she had heard of sensory processing disorder and she replied that no, she hadn’t. I then asked her if she had heard of autism and she nodded and said ‘Yes why?’
“Well”….I started: “I don’t know that family at all, and I could be very wrong but I did notice that the little boy displayed a lot of possible autism or SPD signs. He didn’t listen to you because he was obviously too overwhelmed and anxious to take in anything that anyone said to him”
She rolled her eyes mockingly at me and said: “What the hell would YOU know about autism?”
I smiled and replied: “Well, not as much as I would like to, but probably more than you because I have two sons with autism who both used to respond in exactly the same way whenever we tried to get their hair cut. I just don’t think that’s it’s fair to expect these children to respond to the same “rules” as typical children”.
The cocky smile evaporated from her face but she still snapped: “Don’t be ridiculous, he looked perfectly normal to me”.
I tried not to match her snappy tone as I answered sadly: “And so do my boys. That’s why parents like me struggle so much with society’s opinions and judgements. Because they are judged on outward appearances only”.
With this she walked off in a huff and the other 2 hairdressers that were standing behind her smiled at me and silently clapped their hands together in an air clap! I was originally prepared to keep my mouth shut but there was no way that I was going to let her bad mouth that family. That little boy. That gorgeous, precious little Xavier could be any of our sons. And there is NO WAY that I am going to sit back and allow this kind of mistreatment to continue.
I have put my “Obsessed Mama” cap back on my head and I’m determined to keep spreading the word. Our children deserve nothing less. They deserve to have a zone where they are accepted and nurtured. Society needs to learn to slow down and protect their zone. But this won’t happen if we don’t keep spreading awareness and be loud advocates.
So….whose going to join me?
In just under 2 weeks time – Mr Patient and I are going away overnight to attend my cousin’s wedding. The venue is a couple of hours drive away from here and rather than try to drive back later that night, we have decided to stay in a nearby hotel instead.
I’m actually finding though – that I’m having the exact opposite emotion to guilt (whatever that’s called) whenever we leave the kids with friends or family these days. Instead of feeling guilty that we have left them…..I feel guilty because I’m NOT missing them….How twisted is that!?
But it hasn’t always been that way.
For many years I carried guilt and shame related to leaving my children and it’s only been recently that God has set me free from this burden and I’ve been able to see that in actual fact – in the particular circumstances that I have lost sleep over I didn’t even do anything wrong. It can all be traced back to the different brain wiring of my son and the fact that we didn’t know anything about it.
I clearly remember way back to in late 2003 when Ella was almost 4 and Harley was still a baby.
None of us had slept more than an hour at a time on any night due to Harley’s constant screaming and crying, but my parents knew that we were absolutely exhausted and needed a break.
So they offered to mind the kids for us up at their place (in the country) for 5 days so that we could escape over to the coast to stay in a gorgeous little bungalow on a lagoon that they had booked for us. We were SO excited at this idea and knew that we desperately needed this break and looked forward to it for WEEKS.
Prior to this – I had been having headaches and facial numbness for months but it had gotten a lot worse in the weeks leading up to this escape so I went and saw the seventh Doctor in two years and listed my symptoms for the 7th time expecting to be sent away being told that I was a hypochondriac again. But this time I demanded that the Dr do an MRI because I wanted to put my mind at ease once and for all so that I could enjoy this holiday with nothing to encroach on my peace.
But of course the MRI revealed the brain tumour that I had been accused of inventing symptoms for, and our little couples escape never happened.
On the night before I was due to go in for my surgery – my baby Harley came down with the chicken pox and wasn’t allowed to come and visit me in the ICU or even after I was transferred to the brain injury ward until the spots had disappeared. On the morning of my admission to hospital, my Mum clearly remembers standing on my front porch waving her daughter off to have life-saving brain surgery while her grandchild itched and cried for his Mummy. His little arms reached out to me but I had to turn and walk away. THE hardest thing I’ve ever had to do to date.
When he did finally get the all-clear from the Dr and was allowed to visit me in hospital – he didn’t seem to know who I was. He was only 14 months old and Grandma was the only person he responded to. This was my first introduction to mother’s guilt.
Fast forward almost 2 years and 2 major surgeries later and we finally took that well-deserved holiday on the coast and by then – we were even more in need of a break than 2 years earlier and couldn’t WAIT for the day to arrive.
So we drove the kids up to Mum and Dad’s and jumped back in the car and drove to the coast to r-e-l-a-x!
But do you know what? Once we got there – we didn’t know what to do with ourselves! We didn’t know how to just stop and we were unable to relax much because we continued to be consumed by guilt. After our first swim in the pool, dip in the spa, stroll along the beach and dinner and movie date – we were all outta ideas! And this was all done in the first day!
We weren’t used to having so much time alone together and didn’t how to spend it! We phoned the kids several times a day and actually ended up going back a day early to surprise them! We had clued Mum and Dad in and asked them not to tell the kids.
And to this day – I’ll never forget Harley’s reaction. Even as young as almost 2, he showed signs of being very distressed by changes in plans.
(And recalling all of this now – I can’t believe that we missed the “A” word for so long).
So we pulled up in my parent’s drive way and walked around the side of the house because we could hear them playing in the back yard. We didn’t call out to the kids – we just stood there and waited for them to spot us.
Ella saw us first and immediately came running over exclaiming “Mummy, Daddy! I’ve missed you!” But Harley burst into tears and clung to Grandma’s leg… He was confused and wouldn’t come anywhere near us. Me particularly. I remember how devastated I was by this but I think I did a fairly good job of disguising my hurt. We’d only been gone 4 days and I already felt as though I’d abandoned my child and his reaction to me just magnified my guilt. It took me a very long time to stop blaming myself for going away and leaving him even though deep down I knew that we desperately needed the break.
That afternoon, Harley stayed close to his Grandma for hours and eyed me suspiciously from afar. He lay on Grandma’s knee and drunk his bedtime bottle that night and she was the one who laid him in his cot. Not me. He didn’t want me. I remember how much my heart broke that night. It stayed with me for years but I didn’t know then that this was one of the early signs of his autism causing confusion, and anxiety in him.
I was only thinking about all of this today and for the first time I actually GOT IT!
I finally get that these incidences of Harley’s over the top reactions to change were nothing at all to do with my parenting (or lack of). I can now see that they were both just very early indicators of a little boy who is wired very differently to me. I understand that his response to these events can be attributed to the fright response that is common amongst ASD children when they are confronted with a situation that didn’t go the way that they expected. Harley was simply reacting to change and clung to that which made him feel safe. And in both of those circumstances – It was my Mum that was his safe place.
It has all become crystal clear to me this week exactly WHY Harley has such a closeness with Grandma.
I now understand completely that she was the only constant in his life every single time that things have gone belly –up.
She was not only someone who was there for him when he needed it most. Someone who knew he was special and knew that he was different but chose to love him unconditionally and without judgement.
Thank God for my Mum.
And thank you God for healing my hurt.
This would have to be one of the longest posts I’ve ever written but I gotta tell you - I LOVE it
The words just flowed today so go and grab a cup of coffee or glass of wine depending on what time it is and come and join me on this journey of discovery. I can wait
I woke up this morning and decided that today had to be all about me. I have been so snowed under with responsibilities and demands that it had really started to do my head in. I realised that I needed to take some time out and work through what has been going on in my head lately and I actually permitted myself to take this time without feeling selfish.
(And THAT in itself is a huge step of progress right there!)
Recently, there have been a huge array of emotions that are seemingly unconnected to each other and I needed to stop and try to piece this jigsaw puzzle of confusion together once and for all.
I dropped Lucas at pre-school and jumped into my car and drove until I felt that I had reached the perfect spot. I landed in a small country town roughly and hours drive away. We are very fortunate to live where we do because it really doesn’t take too long before you’re in the countryside enjoying the fresh air and mingling with small town folk who always make you feel welcome.
So here I sit holed up in a gorgeous little cafe with a strong coffee, a HUGE piece of gluten-free cake and my iPad, notepad and pen. The warm winter sun is coming through the window onto my back and the fire crackling in the fireplace is completing the ambiance.
Things have been really rough lately in that I have honestly believed that I have been cruising along nicely but it turns out that this has all been surface emotions. I had been fooling myself again.
Because that awful little terror called grief really is a sneaky little bugger. He lies in wait for sometimes quite a sizable amount of time lulling you into a false sense of security and then one day, he creeps up on you and whacks you over the head when you least expect it. It has been so forceful in its attack on me this time, that it has brought me to my knees dramatically screaming in agony and wondering how on earth I didn’t see it coming!
Grief is no respecter of times or places and is not subject to the unspoken rules of political correctness. It operates according to its own schedule.
Most of my grief stems from the loss of my Dad to cancer 3 years ago and I have been remembering a lot of wonderful things about him this week. Strangely enough – thinking about him usually has the reverse effect in that it brings me smiles and laughs and keeps my wonderful memories alive.
It doesn’t weigh me down because I’m choosing to remember the good times and not focus on the loss. It’s really cathartic for me. But with those joyful thoughts – the sad thoughts also inevitably creep in and they are what drag me down and threaten to wipe me out.
My dad was a really gentle soul. He was a hugger, an encourager and a comforter. He was laid back without being lazy, peace-loving without being wimpy and authoritative without being demanding or unreasonable.
I miss his laugh, his silly jokes and his amazing wealth of knowledge. This man knew everything about everything. He was an asset to any trivia team and had a memory to rival any elephant!
He was particularly special in that he would often go out of his way to learn all about something that interested one of his friends so that he had something to talk with them about at his meeting.
When Mr Patient and I got married – he threw himself into learning all about Mr P’s interests and did the same thing with my sister and her hubby. He loved God passionately and because of his earthly example to me of what a father is – I have found it easy to trust in God as my heavenly father.
Dad always joked that he should write a book because “one day I won’t be around anymore and I want you kids to know where you came from and what I consider to be the important lessons in life.”
But as you all know – “one day” came a lot sooner than any of us could have anticipated.
Dad used to be the best storyteller I knew. His facial expressions and mannerisms helped illustrate the tale and brought a real authenticity to it. He often told us stories of his youth and can I just say – he was a ratbag at times!
He would tell us of all the pranks that they used to pull on the girls at school, the numerous times that he was given the cane for mischief and the times that they narrowly escaped the law!
He regularly reflected on his childhood and remembers that his mother often told the tale of her standing in the street talking to friends when Dad climbed down out of his pram and took the wheels off so he could figure out how it worked!
Oh how much my boys are like their Granddad!
Dad ended up working with his hands in his chosen vocation and was also the best handyman around. There was nothing my Dad wouldn’t have a go at and his can-do attitude was contagious.
Dad also wanted to write down all the stories of his childhood and youth so that my sister and I could have a record of where we came from and what life was like back in his day.
When Ella was in grade 2, she did a speech at school that was all about the differences between when her granddad’s generation went to school and now. Ella would ring him up to pick his brain and hung on his every word. Of course Dad got a real kick out of being asked to share his story and was as proud as punch that she wanted to know!
And Ella actually ended up winning that year’s speeches coming first out of her whole entire grade! It completely made his day,
Dad always told me that he wanted me to write, he was always encouraging me and loved the silly little poems that I would often churn out as a child. He told me that I had the gift of the gab like him (no doubting that!) and that I should share my life story with my kids.
So I guess this brings me to the point of this post.
This particular post has been written in honour of my Dad but also because I want to continue the legacy that he never got to see to completion. I want this blog to be that book for MY children that Dad never got to write.
I want MY kids to be able to read back on this in ten years time and see how much I love and adore them and to show them just how far they have come.
And if something were to happen to me and I was to join Dad in heaven prematurely – I want to leave this legacy for my children.
I have told my daughter and husband my blog log in and password and if that day should ever come…..I want them to continue writing this for their children and for their grandchildren and so on.
I want this blog to become a family tradition, a record of highs and lows and successes and failures. I want my descendants to know that they do matter and that their lives are full of purpose and that their dreams are achievable.
I want them to be the best that they can be and I want them to know that above all else – they are loved.
And on that note – I think it’s time to go and get a coffee refill.
I’ll leave you with some photos that I took on my phone of the beautiful Australian countryside.
I truly found peace out there today , I hope you all enjoy your evenings or your days wherever you are in the world.
Today was a particularly hard day with Harley. For the better part of the morning he was an emotional wreck. He was an explosion waiting to happen and I wasn’t about to be the one to light the fuse so I walked on egg shells for all of our sakes.
The only method that worked here at home with the boys was the ole divide and conquer. I sent each of them to their own rooms to play separately.
I really HAD to do this otherwise there would be no point in keeping Harley home for a circuit breaker day. I simply couldn’t afford to ruin it by allowing them to bicker and argue all day, it was the best option of all.
This afternoon though, I did have to take Lucas to the paediatrician for a basic follow-up appointment after his formal aspergers diagnosis back in March, so Harley had to join us for that. I went prepared with the boy’s DS’s the iPad and some pens and paper. They both behaved brilliantly in the waiting room and I was SO proud of my boys.
Not long after we arrived another mother walked in with two little boys of her own and sat down beside us to wait. She smiled at me but she looked absolutely exhausted. Her eyes were almost hanging out of her head and she looked like she had the weight of the entire world on her shoulders.
I recognised that pain. All too well.
Her youngest son (who was 4) asked her in fragmented speech if she would help him to do the puzzle that he was holding and she sighed in resignation and lowered herself to the floor to join her son.
But he jumped up and waved his arms about frantically shouting “No Mama, I seat on your knee I will, no you on the floor”.
She looked up at me and rolled her eyes saying “The things we do hey!” as she climbed back up onto the chair drawing her little boy onto her lap.
I nodded in agreement and smiled back at her.
The little boy (his name was Steven) glanced at me shyly, frowned and then buried his head into his Mum’s shoulder whimpering. “That scary lady look-ded at me”
The mother smiled at me apologetically and offered me an explanation to her son’s behaviour : “I’m so sorry about that – my son is still learning how to be around other people” she sighed sadly and took a deep breath….“He has autism”
“I know he does” I answered. “It’s ok….really”.
“You do…..I mean….How did you….what did…I mean, I KNEW you looked familiar, but….can you remind me how I know you though, I’m so sorry but my memory is letting me down lately”…..she trailed off sadly.
“No, we’ve never met” I giggled gently, “Well to my knowledge anyway, it’s just that…..I recognised the signs” I ventured hesitantly.
“Wow…..How?” she asked amazed.
At that point I gestured to Lucas and Harley who were sitting in the corner with their heads down focussing intently on their Ds games. Harley was also rocking back on forth on the spot and Lucas was humming to himself.
“What do you see” I asked her….
She studied them for a bit and then she almost shouted:
“Oh my goodness! …. Are your boys….. I mean, have they….Um, do they also have autism?” She asked shyly.
“Yep, sure do” I answered. “Both of ‘em”.
“Wow…..I would have never have picked that” she said and then stopped herself abruptly……“Oh my God, I just did that EXACT same thing that I HATE other people doing to me”
“I HATE it when people tell me that my son doesn’t LOOK autistic and now I’ve gone and done it myself! It’s SUCH an insult when they say it to me….like I’m lying or something!”
I laughed again and assured her that it wasn’t a huge deal. And then a few minutes later it was our turn to go in. I said goodbye to her and waved at Steven who had now warmed up to me and walked into the Doctor’s office.
The appointment went brilliantly!
He did the usual weight, height, blood pressure checks and then we started to chat about Lucas’ therapies.
He asked me about his early intervention group and I told him that it’s working out wonderfully.
He asked how he was going at Pre-school with his aide…..and I answered: brilliant again.
Next the Dr wanted to know if we’d finalised a school for next year and I answered that yes, that was taken care of too.
He also wrote down the names and numbers of the best speech pathologists that he could think of and sympathized greatly with our dilemma after the last one fell through.
We were just about to pack up and leave when he started to tell me about a social therapy group run by a wonderful lady that he described as a miracle worker for children with an ASD.
And yep….it’s the same awesome lady that I wrote about *HERE* and Harley has been attending for almost 2 years now.
The Dr looked at me intently and made a remark that has put him in my top 5 all-time favourite people in my children’s medical life….he said:
“Fiona, can I just commend you on how much you do for your children. It really is so wonderful to see a parent like you that has taken your son’s diagnoses and run with them and given it your all. I have no doubt in my mind that your boys will be functioning so well once they reach adulthood that they you will barely remember the harder years that you are in the midst of now. It is only up from here on.”
Well, you could hardly wipe that grin off of my face after that!
I can finally tell all those people in my life who criticise me and my efforts – that it doesn’t matter what they think because my children’s Dr thinks I’m awesome!
I wrote a poem for my post tonight but after publishing it I decided that I hated it so it got deleted. But this left me in the awkward position of having no post at all for tonight!
And I seem to have lost my writing Mojo .
Mr Patient left today for a week up North with work and it’s crazy around here right now. My head is full and my kids are nuts. Harley is going off his head about something to do with his dressing gown, Lucas is tearing madly up and down the hallway at top speeds and all I can say is: Thank God for companies that make gluten-free pizzas! They literally saved my bacon tonight!
So instead of trying to write something mildly interesting and coherent when my head is clearly full of play-dough – I thought it would be better to recycle one of my most read posts from last year. For some reason it still gets several hits a week so it must be doing the rounds of cyber land??
Anyhoo….here goes: – It’s called….I AM THE MOTHER….
I am the mother who sent her child to school sans his jacket on a cool spring morning and watched him shiver as he bravely walked in to school.
I am the mother who forgot to put her daughter’s school hat back in the car thus causing her to receive a uniform infringement.
(And the mother who can’t work out why a 10-year-old is not capable of doing this herself *ahem*)
I am the mother who fed her children cake for breakfast because she forgot to buy bread.
I am the mother of the 4-year-old boy who threw the tantrum of the century in the school car park this morning.
I am also the mother who glared at the other parents who were rubbernecking and tut-tutting at her child as she picked him up and threw him over her shoulder to keep him safe from the oncoming traffic…
and the mother who would do it again in a heartbeat.
I am the mother who survives on very little sleep and a lot of caffeine.
I am the mother who tries to do too much sometimes.
I am also the mother who sees what everyone else does for their children and fights the feelings of inadequacy that wash over her in tidal waves.
Alas, I am the mother who answered the phone this morning only to discover that it was the school administrator informing her that her son’s class were having a make-your-own-pizza-day, and that the pizza bases that were supplied to the rest of the class, actually contain gluten and asked where was the gluten-free one that she was supposed to be supplying.
I am the mother who told said administrator that she knew nothing of this pizza day as her son was absent last week on the day the notes must have been handed out.
I am the mother who met her son at the gate this afternoon with some Ben 10 tattoo stickers as a “please-forgive-me-for-making-you-miss-out-on-pizza” token gift.
I am the mother who often pulls her hair out in sheer frustration because she is unable to remember a lot of important things that need to be done, due to the stress levels that are constantly rising at this time of the year.
I am the mother who finds more grey hairs every time she looks in the mirror.
I am the mother who keeps chewing gum in her glove box at all times so that she can hand them to kids who “forgot” to clean their teeth on the way to school.
I am the mother who rarely sorts her washing *Gasp*
I am also the mother who would move heaven and earth just to make her children smile.
I am the mother who often spends her own birthday money on her children because she wants to bless them as they bless her by just being themselves.
I am the mother who cannot for the life of her understand what makes her children tick but would give anything to be granted a free pass into their thought processes so she could make sure that their every need is met 100%
I am the mother who wants to learn to appreciate the little things.
I am the mother who wants to learn NOT to stress on other little things!
I am the mother who would take a bullet for her children.
Yes this mother is fiercely loyal.
I am the mother who often lays awake at night thinking of fun things that she can do with her children on the weekend and willing the hours to tick by so that the weekend can start.
I am the mother who wants to join her kids by dancing in the puddles in the rain and skip through supermarket aisles singing but is too afraid of what other people might think.
I am the mother who desperately craves understanding and tolerance for her children.
I am the mother who worries that she is not doing enough for her children, but also the mother who realises that she only has 2 hands and 24 hours in a day.
I am the mother who is learning to love herself just the way God loves her and the one who believes that life is good.
Yes. I am THAT mother
What kind of mother are you?
Four years ago, our daughter Ella had a wonderful teacher when she was in grade 2. Ella clicked with her and learned some really valuable life lessons that she still carries with her. Every day this teacher would encourage the children to engage one another with an exercise called “Butterflies and Cockroaches”.
The idea behind it was that every member of the class would go around in a circle and ask one another to talk about their butterfly (good thing that happened that day) and their cockroach (yucky thing that happened).
The rule was that they were to tell their cockroach first so that they could finish on a positive note.
When Ella came home and told us about this – we decided that we liked it so much that we started to use the idea at our family meal table every evening. It was a great way for us to have quality conversation together and to involve the kids in a socialising activity without them realising that they were actually learning. It also had the added bonus of taking their minds off their food and onto the game so they would eat without complaint!
It was funny at first because Lucas didn’t understand the concept and would just rattle off any thing that came into his head and they were rarely “good things” or “bad things” they were statements like : “Elmo has a fish called Dorothy” or “Bust my boilers” (thanks Thomas and friends!)
We would all giggle and try to explain the rules to him again but he just couldn’t grasp it.
There were nights where Harley would say that he had no butterflies because his life completely sucked but that he had 100′s of cockroaches – so we had to put a limit on them because he was turning it into a whinge and whine session! But because we were allowing the kids to talk about their “cockroaches”, we weren’t teaching them that they have to bottle up all their sadness and struggles and that’s it’s ok to talk about them – we just had to reiterate that it’s not good to zoom in on them and let them cloud everything else. They soon learned that it’s far more beneficial to focus on the positive in the long run.
The kids also gradually learned about turn taking, about enquiring after another person’s day and about listening to other people talking even if it was boring to them. They learned patience, self-control and empathy.
It taught me (the eternal pessimist) to take my eyes off my complaints and to focus on the good things in my life and to learn to be grateful for what I DO have instead of focussing on what I don’t. I personally got a lot out of this simple exercise and can’t really remember when we stopped doing this or even why we did?
But guess what?…. We started it again last night and the table was filled with laughter, with joy, with love and with understanding. Harley was able to articulate what it was that had been upsetting him all afternoon and had caused him to have a meltdown after school.
Lucas blew us away when he correctly identified his butterfly and cockroach and made us giggle when he announced dramatically that my cooking was his cockroach that night! But I have been simply amazed at the peace that this brought to our family last night. The love, understanding and family unity was fantastic. And just from something as small as taking the time to be with and cherish each other.
I have spent today trying to come up with the best answer for the butterfly question that I can. I want it to be a good one.
So….What is your butterfly and cockroach today?
But it’s not just any old singing. Oh no…..because that wouldn’t bother me so much.
Regular singing would be cute and bearable and maybe even catchy, but his is the repetitive nonsense type of singing that makes you want to poke yourself in the eye.
Until it bleeds.
Because that would be less painful.
And it’s not that he is terribly off-key, in fact – he seems to be the only child of mine that picked up any of my musical abilities but it’s more the type of songs that he chooses to sing that do my head in.
For example: Does anyone remember the Traffic light song by the Monty Python guys?
Well for the uninitiated: here is the worst song you could possibly imagine.
Now try to imagine it being sung to you over and over and over again…..
Do you feel sorry for me yet?
Oh….and a huge thankyou to my lovely husband for showing it to the boys in the first place
Lucas regularly sings this insidious song in the car, but that wasn’t what he chose to sing this morning.
No, this morning’s song was a made up song that stemmed from an episode that we had a few weeks ago where he completely pushed my buttons and got the desired reaction from me and therefore obviously never forgot about it.
It also happened in the car on the way to school one morning.
Harley had whispered to Lucas that it would be funny if he told me that he’d peed his pants. Which was just lovely as you could imagine.
So…. he did and he acted the part so well that I totally took the bait and completely freaked out. I pulled over to the side of the road and got out of the car whilst going off my head ranting at him: “Why didn’t you tell me you needed to go?”.
I opened his car door and reached in and put my hand on his legs to check the relative humidity and at that exact moment they both started giggling hysterically saying: “We tricked you Mummy! We were just joking!”
I failed to see the humourous side and they knew it but they couldn’t stop laughing for the rest of the way nonetheless.
So anyway….back to the song.
After I’d dropped the older kids at school this morning, I started to drive Lucas to pre-school. I turned onto the freeway and a little voice from the backseat piped up singing a song to the tune of “The Farmer In The Dell”.
Here’s the tune:
Lucas’ version went like this:
“I think I peed my pants,
I think I peed my pants,
I think I peed my pants”.
Ok….So I laughed at his cleverness the first time and maybe even smiled the second but by the 93rd time in 15 minutes ….I was ready to commando roll outta that car going at high speeds and make a run for it!
And I’m more than a little suspicious that he had some help coming up with the lyrics for this….Hmmmmmm?
So…what do your kids like to sing in the car and does it drive you completely batty too?
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!
So….what’s my one thing?…………Easy: back talking.
Call it backchat, sassing, giving lip, arguing, smart mouthing, answering back……whatever you like….I absolutely hate it.
It’s always bugged me and I can honestly say that it is the one thing that will send me over the edge every.single.time. It’s like waving a red-flag to a bull (which incidentally was proven to be false according to Mythbusters) but I digress
I can handle crying, whining, hitting, kicking, punching and most forms of parental abuse but if you really want to see me go off like a firecracker – be a fly on the wall when one of my kids answers back in a disrespectful tone. ***
So….this leads me to today.
Today is Lucas’ pre-school day so we dropped the kids off at school and then made our way there. It is roughly a 20 minute drive depending on traffic and …..Oh…My…Goodness…..!
I simply cannot believe this child! He has speech difficulties and is sometimes very hard for other people to understand but today….he jabbered on and on and on and on and on and on and ….…(you get the picture) like nobody’s business!
He could not
would not be quiet.
First it was about Gnomeo and Juliet. Then it was Lego, then it was all about his pre-school and how he was planning to refuse to go to sleep during nap time, then it was all about what he hoped was in his lunch box, then it was what he was going to do after school and when he started to randomly call out animal names and made up numbers such as ‘a thousand super billion mega trillion’ I flipped…
Driving along at 120km/h on a freeway with no escape from your overly chatty pre-schooler with nowhere to escape to is….Um, well…..HELL!!!!
So after I turn off on our exit and slow down towards the traffic lights I turned back to him and said: “Wow Lucas…..you sure have had a lot to talk about this morning, you haven’t yet taken a breath” and he looks at me RIGHT IN THE EYES with a haughty grin on his little face and said:
“You shut–up Mum…. don’t you tell that to me. I is the boss and is not you”….. Well…..I flicked on my indicator and pulled over to the side of the road and……………….……..let’s just say that he won’t be pushing THAT boundary again in a hurry!!!
*** I do have to add that this really is NOT a regular occurrence for Lucas. He is generally a very respectful, polite little boy but obviously today he wanted to test me out!
And I also want to add that I’m not trying to upset the parent’s of non-verbal children…..I know that you guys would LOVE to hear your children’s voices even in this context xx
So……What’s the worst thing that YOUR child has said to you in the car when they THINK you can’t get to them?