Um yes, that’s MY son :)

 This afternoon my kids have made me laugh on so many occasions that I could almost write an entire post just by writing them all down here.

But I won’t. I have the sneaking suspicion that a lot of them were really only funny to me. You know – mother’s love and all that!

But I will say that my joy and delight in them lately has all been about choice. VERY much so.  This afternoon as I sat on the computer on a Skype call to a close friend in the UK – the boys were tearing around the house screaming and laughing like maniacs.

.

I turned around in my seat and bellowed at them “You boys are so bloody noisy, you can be heard in England at the moment!”

My friend and I giggled and Harley gave me a puzzled look. Maybe he thought I was serious?

Anyway, I’d better get this post back on track because there are a number of different tangents this could take if I don’t pull back on the reigns now! I want to write about the parent/teacher interviews that we had last night.

Mr Patient was going to go alone but I didn’t trust him to ask the right questions in the end we decided to go together and take the kids with us.

Well….it seemed like a good idea at the time!

First we headed over to middle school to meet Ella’s teacher.

We waited for our turn and Harley threw himself on the floor in absolute disgust because he was bored and didn’t make a secret of it which I thought was rather funny but Mr Patient wasn’t impressed!
Ella’s teacher is lovely and she got a fantastic term 2 report . One line in her report said : Ella is very accepting, I never hear any negative comments or actions from her…

THIS made me beam with pride because she lives in a household that is very different to those of her peers and it has obviously taught her to be more tolerant.

We explained to him that she lives with a lot of “action” (I think that’s what we called it) and that if she sometimes appears a bit distant or vague – it’s probably because she is dealing with a lot after hours. He smiled and said that students with “action” at home tend to mature quicker out of necessity and I know that this is definitely the case for Ella. She’s my right hand and my helper a lot of the time and I often have to remind myself that she’s only 11 and realise that the boys are not her responsibility.

He asked us how she is coping “socially” which I thought was an odd question for a male teacher to ask but then it clicked that maybe it’s been mentioned to him that I suspect that Ella is a bit spectrummy herself. I’m not sure but if this IS the case, – I’m thrilled! I answered by telling him that the 3 girls that she has recently bonded with have been an absolute God-send for us and that we haven’t experienced any of the bullying from previous years.

All in all – we didn’t need to stay and chat with him for long because Ella got a glowing report and we couldn’t be more proud of her

Next we walked down to junior school to see Harley’s teacher and the entire interview was absolutely hilarious. She told us little happenings from the classroom which made us both roll our eyes because we could picture them all-too-well! Apparently he’s the little class clown. NO surprises there!  Only I don’t think he actually intends to be funny. He just is!

One of the funniest things she told us was about the day that Harley wrote out a story and handed it in and she was unable to read it so she asked him if he could read it to her. She said he looked at it and then back at her and said: ” I can’t read THIS – whoever wrote this is a TERRIBLE writer,How do you expect me to read it?”

When she told him that it was in fact his story, he shook his head and said “I really need to learn to write better don’t I!”

Yep….that’s my boy! Cute as a button but he makes me CRAZY!!!!!

At least things are settling down here now – only 2 more school days until the kids are on holidays for 3 weeks.

Now….where did I put that Valium?

You know you’re the mother of an aspie when:

• Your son can tell you the name of every Nintendo character but doesn’t know the name of the child he sits next to in the classroom and has done for the last 6 months!
• Every conversation somehow ends up being about whatever it is that they’re interested in and you’ve given up trying to steer it elsewhere because you know you can’t possibly win!
• Instead of tripping over matchbox cars strewn all over the living room floor – you have to step cautiously on your tip toes to avoid messing with any of the perfectly lined up cars that he has made by laying them cars end to end in colour groups.
• You need to start every sentence with their name so that they realise that you’re not just speaking pointlessly into the wind.
• You don’t dare serve two new foods on the one night.
• You usually answer invitations with “Let me get back to you” because you never know…..
• You understand the meaning of “we have to leave now” and never question that request.
• Ever.
• You don’t tell your very literal child to “cut it out” unless you’re prepared for something to be ruined with scissors or a knife.
• You’ve learned not to ask open-ended questions like “Tell me about your day”  because you know they will.

Every.last.bit.Starting with the morning toilet stop. (In all its gory detail!)

• You know the meaning of and often drop into conversation words like: Perseveration, Proprioception  and Prosopagnosia
• You are on a first name basis with the centre management at the local shopping centre because your child has absconded so many times.
• You spend every week attending speech therapy, physiotherapy, occupational therapy, social therapy and spend hours on behavioural therapy and cognitive therapy with your child leaving no time for you to attend the psychological therapy that you need due to the possibility of your head exploding.
• And this is why you blog instead. ….This is FREE therapy
• You can’t remember the last time you ate fish (or insert the food of choice) because your child absolutely positively cannot STAND the smell of it in the house!
• Spontaneous outings are taken at your own peril!
• Your baby slept through the night BEFORE their older aspie sibling!
• You already know what’s for dinner for the next 2 weeks and EVERY LAST THING has been written down to avoid potential freak outs!
• You’ve learned that unless you want to know the ABSOLUTE TRUTH – you don’t ask your aspie if your outfit looks ok!

I’m sure there’s a lot more. But I will save them up for another post
Anyone else got anything to add?

Releasing happy tears

Coming home with your report card,         

You looked at me and said;

“I’ve tried my best but school’s so hard,

It’s doing in my head!”

.

I smiled and then I reassured you,

That I only want,

For your best shot in all you do,

I don’t expect savant!

.

To see you learn the things that are,

An instinct for your peers,

Then do your best and try so hard,         

Just gives me happy tears.

.

It matters not what grade you get,

Or where you have been placed,

Nor if you are the teacher’s pet,

Because it’s not a race.

.

I love to watch you as you work,

And see your furrowed brow,

Your crooked wrist and little quirks,

That epitomise you somehow.

.

I never dreamed that life would be,    

This fast, full on or mad,

And filled with joy and ecstasy,

Though also sometimes sad.

.

Your days seem longer than before,

There’s so much more to do,

It’s why you feel so drained I’m sure,

Keep going son…. because I’m proud of you…….

The Posse on the hill

I’d be willing to bet that they didn’t think I would actually do it I – but I am always up for a challenge and this one is relatively easy for me.

For those of you wondering what on earth I am banging on about – let me explain:

A lovely group of Mums up at the kid’s school were chatting with me this afternoon about my blog. One of them jokingly asked me to write a post about all of them.

I smirked to myself because what they didn’t know was that I had already half written a post in my head after one of the ladies made a comment that had triggered a train of thought for me anyway!

She had said that often they called out “Hi” to me but noted that I rarely responded, but she knew that it was because I am completely deaf in one ear and assumed that I probably didn’t hear her.

And that is true and I’m really grateful that she has been giving me the benefit of the doubt, but it’s actually a lot more than that as well. I actually don’t even notice them either.

You see, most afternoons as I walk into school to collect Harley, my brain is usually caught somewhere between vague and tormented. I rarely look up because my eyes are fixed on Lucas who is known for his absconding and it’s the time of day that I am trying to prepare for the afternoon onslaught of emotional outbursts that are bound to occur.

I guess you could say that I am mentally psyching myself up.

As I walk, I go over the routine in my head so that when we arrive home, things will run as smoothly as possible. I know that Harley needs to wind down from keeping it together all day so I need to make sure everything is ready for his return.

Before I leave for school in the afternoons, I have his crashing corner (complete with cushions, bean bags and pillows) set up so he can get his sensory input so that I don’t become the punching bag, the kicking post and the sounding board.

I have afternoon tea already laid out because another trigger for him is to not know what he will be eating. It exacerbates his anxiety and really is a very easily solved problem.

I have dinner planned and written down on the whiteboard so he knows what to expect and I have his homework all ready to do on his desk.

The things that inevitably throw the order out of whack are little things like sibling rivalry, unexpected phone calls, and rain. He LOVES the rain but it sends him into a trance like state where he is rendered useless when it comes to concentrating or obeying commands!

So, each afternoon as I make my way to the school gate, I mentally tick things off one by one in the checklist in my head and brace myself for my little tornado to be released!

There is another scenario at play here as well.

This one is a little bit harder for me to write about. But you know what?….I think I’m finally ready! It’s more of a personal journey that I have been slogging away at for almost 4 years now and it started way back when Harley began school.

Other autism mother’s will surely agree with me that there is a part of you that is forever changed once that diagnosis is thrust upon your child. It’s like the protective parent gene that we all possess but magnified by about 10,000. It’s kinda hard to explain, but it’s a sense of taking that diagnosis on yourself as well.

It’s been written many times that when one member of a family is diagnosed with autism – the whole family is also. Because it isn’t like a broken leg or a case of the chicken pox – both of those things will eventually end, it is a life-long thing that doesn’t just affect one small part of your child’s life.

It affects EVERY part of their lives.

Triad of impairments which simply put are: difficulties with behaviour, socialising and communicating cover every area of a child’s development and is what all the spectrum have in common.

For me personally, Harley’s diagnosis was like I suddenly took on board all of Harley’s issues, emotions and pain like it was actually ME that was diagnosed. I felt every eye staring at me everywhere that I went, I felt incredibly judged and scrutinised and I was afraid to get close to anyone for fear of either myself or a member of my family getting hurt.

I suppose in hindsight that I can admit that I withdrew from people because it was just all.too.hard.

I was jealous of all the mother’s with their “perfect little NT kids” and I felt ostracised, alone and jaded. I kept my distance for a long time because it was like I had forgotten how to socialise. I no longer had anything in common with anybody and I just couldn’t cope with life.

Cue the nervous breakdown that I had last year when things became far too overwhelming and the elephant in the room that everybody refused to speak about just became bigger and bigger.

This should help to explain my seemingly odd, aloof and reclusive behaviour of late!

Then very gradually things started to look up. I joined an online support group for parents of children on the spectrum and I met a whole bunch of parents struggling with the same daily issues, walking on the same narrow and unpopulated trails and they were able to speak wisdom and love into me again. They “got” me!

They didn’t judge, they understood the heartbreak, the gut-wrenching pain and celebrated the small things with me.

Then I started blogging. I met hundreds of people in every corner of the globe who were also fighting the same fights but with different systems, wrestling with the same teeny tiny gripes and able to offer support and friendship to someone who so desperately needed to be accepted.

God met me where I was at and lifted me out of the pit and eventually, I was able to breathe again without my lungs filling up with disappointment, grief and regret.

I still have a lot of really off days, and I know that it will continue to be a challenge, but I guess it’s time to be out and proud: – I AM THE MOTHER OF 2 CHILDREN WITH AUTISM AND I LOVE MY LIFE!!!!!

And as for you gorgeous posse on the hill – I will train myself to look up, smile, wave and call out “Hi” back.

It’s never been anything personal. I just needed to find the sunshine again

BUT I WANT IT NOW!!!!

You know those ladies that stand at the end of the aisles in supermarkets with their little white stands, their aprons, their mini plastic cups and teaspoons and their food samples?

Well…that was me 5 years ago!….Yep! I was a demo dame

I was also a merchandiser and a mystery shopper. I worked for a marketing company so had a different client each week so there was a lot of variety in my job.

I promoted everything from yoghurt to dishwasher tablets to printers to chocolate bars!!

I used to meet several new people every day and it was the absolute perfect job for me. I loved talking to the customers and the other demonstrators and it gave me a real boost being able to enter the adult world even if it was only briefly!

I only ever worked from 10-2 and never on school holidays and it fitted in perfectly with my busy schedule. I worked up until a week before Lucas was born and even heavily pregnant – I LOVED it!

I remember one time when I was about 8 months pregnant, I had a sticky date pudding demo in a supermarket that required me to have a microwave up on my stand and I arrived early to start setting up and waddled over to the freezer section to collect my samples. I turned around and noticed that there was a guy in his early 20s following me.

He stood there and watched me struggle to set up my stand and as I was lifting the microwave BY MYSELF – 8 months pregnant – onto the stand he walked over to me and started to speak.

“Great” I thought….he’s going to offer to help me, so I set the microwave back down again.

I smiled at him and looked at him expectantly and then he said “How long until you’re set up – I’m hungry and those puddings look goooood!”

It hadn’t occurred to him to offer assistance. He was only worried about his stomach!

It’s was so infuriating at the time and I remember almost throwing his pudding at him when I finally got it ready but I quickly forgot about it and got on with the rest of my shift.

For some reason, this memory came back to me last night because I had a very similar incident with my little Harley right after dinner.  

The children had just finished eating and I had started rinsing and stacking their dishes on the sink , wiping down the table and sweeping the floor when Harley comes over to me completely oblivious to the work going on around him and says:

“Mum, it’s time for dessert. Why haven’t you got my dessert? What’s for dessert? Is it ice-cream or is it yoghurt? I think I’d like ice-cream tonight. But can I have both? I can’t decide. MUMMMMMM, Why aren’t you getting my dessert?.We ALWAYS have dessert straight after dinner. I’m HUNGRY! ” and started to get into a real flap.

He then took a breath and stood in front of me with his hands on his hips and an expectant face not knowing why he had made me so angry.

I asked him if he had noticed me clearing and cleaning up and if he thought it was possible for me to get dessert at the same time as doing all of these things and he replied that he didn’t know.  I then told him that he needs to learn a little bit of patience and that he needed to ask more nicely next time and to not just assume that things were going to go his way all the time.

He paused for a moment and then said….“May I have dessert now PLEASE?”

From where he stood – his request was perfectly ok and he couldn’t understand what the fuss was all about.

I looked at him again and said: “In a moment honey, just let me turn the dishwasher on and wipe down the bench, I’ll take care of it soon”

He rolls his eyes at me and muttered: “The things you have to do just to get a bit of sugar around here”.

I was ticked off but I ignored it and chose not to let it penetrate but realised that there is still a lot of social training that is required in that area. And I smarted at the realisation that I would probably have to endure a lot more of these type of situations before he completely “gets” it.

They (whoever they are) say that this is very common in individuals diagnosed with aspergers syndrome. In fact a lot of the diagnostic criteria is obvious in this little scenario.

For example:

1. Socially and emotionally inappropriate behaviour: Demanding what he wanted NOW and not being willing to wait for it, and getting annoyed when it didn’t happen immediately.

2. Limited interests or preoccupation with a subject: Not being able to think about anything other than dessert and going over and over it until it happened.

3. Repetitive behaviors or rituals: His constant chants of : dessert, dessert, dessert, dessert. NOW!

4. Peculiarities in speech and language: Talking out loud about what he was going to be having – asking himself a question and answering it in the same sentence. Repeating his request several times over.

5. Problems with non-verbal communication: Non-verbal communication involves perceiving body language and acting appropriately. He didn’t notice that I was otherwise engaged in cleaning up.

6. Inflexibility or rigid thinking: He couldn’t understand why his needs were not the most important thing in my eyes as well.

7. Fear of changes; sameness in daily routines: He said:  “We ALWAYS” have dessert straight after dinner.

I can now see that Harley was not so much being a pain in the butt as he was just trying to make sense of the whole thing in his head.

Harley was noticeably confused as to why I was annoyed with him and even after I tried to explain it – he still didn’t understand what the big deal was! I guess it’s something that I will have to keep working on with him.

But I have to say that I am thrilled that I am now able to look past my initial annoyance and see that this wasn’t just a case of him being a little brat!

And all day today – I have been wondering about that young man in the supermarket. I have wondered about his short-and-to-the-point speech and his complete lack of awareness to the situation that was obvious to almost everybody else.

I suppose I’ll never know!

Surviving on Fizzy Pop.

image via graphicleftovers.com

I was thinking about the difference between ‘coping’ and ‘surviving’ last night as I sat and chatted with a close friend that came over to visit me. I used that phrase to refer to how I am feeling personally at the moment and I realised that lately I have been a lot more in survival mode rather than actually “coping”.

But this post is not going to be about me.

My friend Valerie was the first place that I’d heard use these terms and she used them to refer to the way that children with autism are in a classroom setting amongst other children, and how they can often ‘appear’ to be doing quite well even though that’s often not always the case.

I wrote on Wonderfully Wired’s Facebook page recently that I always know when it’s going to be a difficult afternoon whenever Harley’s teacher tells me that he has had a great day. In fact, when I hear this – I inwardly cringe because I just KNOW that he’s saving it all up for me. (oh joy). I know that this is quite common in a lot of aspergers children (but by no means ALL of them) and I always thought the reason was that they are intelligent enough to know what’s required of them at school but once they get home again, all bets are off and the pressure cooker valve is finally released.

Well – this is true but my friend (an adult aspie) Lisa explained it to me in a different way. One that had never occurred to me before.

She commented on that observation of mine with these wise words:

A little Aspie nugget here: a good day from a teacher’s perspective means you did your work and behaved yourself. From my memory of this it also meant that I was shutdown, in daydream mode and holding back all day. I’ve been told by an Aunt that I’m like a bottle of fizzy pop. We all know what happens if we shake fizzy pop then take the lid off.

WOW!

I’d never thought of it like that!

So what the teacher was interpreting as a ‘good’ day meant that he was behaving ‘like all the other kids’. But what this required for him was to completely shutdown his natural tendencies and conform to be something that he’s not. I can now understand why we always cop the brunt so badly when he gets home. It’s because he just spent the better part of the day being something that he’s not and pushing his real self down and squashing the elements of his personality and nature that make him who he really is.

For him to be able to present a front of ‘coping’ – he was actually just operating in ‘survival’ mode.

And survival mode is hard slog. It is exhausting, it is mentally draining and it is something that no-one can keep up for extended amounts of time.

I was thinking more about the difference between the two and came up with this:

Imagine that your car breaks down in the middle of the desert and you are hundreds of kilometres from the nearest town. You have a trailer on your car that was filled with a months supply of food and water for you and your friend and all the camping gear and necessities that you will need to last you for weeks. Inside your vehicle, it is equipped with a GPS system and a radio.  So you find out your exact location and use the radio to send out an SOS call.

You reach someone in a town 2 days drive away who tells you that they can’t get someone out to you for at least 3 days due to staff shortages.  This situation is a total inconvenience to you and has thrown a spanner into your holiday plans right at the very beginning of your trip but you instinctively KNOW that you’re going to be ok.

You set up camp, boil the billy for a cup of tea and put your feet up with your friend in front of the blazing campfire and wait.

This is an example of ‘coping’ with an unexpected situation. Annoying – yes – but not the end of the world.

Now……

Imagine that your car breaks down in the middle of the desert and you are hundreds of kilometres from the nearest town. You only have enough supplies on board to last you both until you reach the next town. You have a radio (just like in the earlier scenario) but it isn’t working properly and is unreliable.  You can’t read the map that you brought because it’s written in Spanish and you have absolutely no idea where you are so wouldn’t be able to tell anyone even if you could reach them.

You do a mental inventory on the food and water supplies and work out that if you both eat and drink sparingly that you may be able to make it at least 2 more days. But after that- if you’re not found, things will be touch and go.

You rig up a makeshift tent beside your vehicle by tearing up the skirt that you are wearing and you drain the water from the window wipers just in case. Next you take the car seat covers off and use them to make a flag that you tie to your car aerial with the words “help us please” scrawled in lipstick from your bag and cross your fingers and hope , all the while not letting on how frightened you are to your friend so as to not alarm them.

This situation illustrates ‘survival’ mode.  Frightening, unpredictable and, and seemingly inescapable.

***

Miraculously a convoy of tourists drive past only hours later and you are rescued.

***

Now……In which scenario do you think that you’d be more likely to burst into tears of relief and vent all of your pent-up frustrations and fears onto the rescuer?

Certainly not in the first one because in that one – you were fully equipped with what you needed to get through (much like NT children) and whilst you were pleased to be rescued earlier – you were never all that concerned in the first place. You knew that you were going to be fine because you’d already sent for help and had the necessary coping strategies in place.

But in the second scenario (like our precious ASD kids) it was terrifying. There didn’t look like there was any foreseeable way out. Everything looked hopeless, you felt completely useless and you had to keep your brave face on for the sake of your friend. You were running on pure fear and survival instincts and not much else.

***

Your bottle had been shaken vigorously, the effort that you had to put in JUST TO SURVIVE took every last bit of control from you, your anxiety levels were sky-high and something had to give.

BANG!!!!!!

It’s no wonder my little fizzy pop boy explodes!

25 Things that I want my children to know….

*** image credit***  

I’ve been thinking a lot lately about what I really would like my children to learn about life and what I consider to be the most important things that I can teach them in my role as their mother.

I’ve written them all down in the form of a letter that I will print up and give to each of them when they turn 18. I already tell them these things and hope that they will be practising them everyday long before they reach adulthood.

Here goes:

My dear, precious, amazing children,

1. Please know that I love you all so incredibly much. And love is most definitely a verb.

2. There is nothing that any of you could ever do that would cause me to love you less. But this revelation is not permission to break the law, intentionally hurt someone or create havoc. There is also nothing that I wouldn’t do for any of you. But don’t deliberately push me just to find out my limit.

3. There are not enough hours in the day to show you how special you all are to me, and I want you to remember that even when it appears that I am pre-occupied and too busy for you – I’m only ever a hug away. I will drop anything if any of you ever need me. And don’t believe anything or anyone that disputes this because it’s simply not true.

4. I believe that you are all capable of achieving great things and I will support whatever life decision you make.  Even if what you choose to do is non-conventional and low paying. As long as it makes you happy and you do your best.

5. Having an asperger’s diagnosis gives you a reason for anger and resentment but not a right. There is a big difference. Some things will always seem more challenging and harder for you than for others but it’s not an excuse to give up. You are all blessed with many talents and skills and you WILL succeed despite being wired a little differently to your peers. Use this to your advantage instead. Choose to excel.

6. Respect those that are in leadership over you. You may not always agree with them but respect has nothing to do with this. If you learn this – you will go far in life.

7. Treat other people as you would like to be treated yourself and always go the extra mile.  Let people cut in front of you in lines, pay for friend’s meals and be the first one to say “I’m sorry” .

8. Don’t retaliate. It only exacerbates the problem and makes matters much worse. It doesn’t achieve anything but creates more drama and grief.

9. Always take the high road  - The view is much nicer from up there.

10. Don’t argue for argument’s sake and don’t desire to be right at all costs. It’s just not worth it in the end. Agreeing to disagree is a safer and much kinder route.

11. Stay close to one another. One day your father and I will no longer be around and you will all need each other.  Even when you’ve all grown up and have gone your own ways – keep the sibling link alive and nurtured.

You will be pleased that you did.

12. Always do your best. You don’t have to always win, but as long as you gave it your best shot – that’s the most important thing.

13. Know what you want out of life and give it all you’ve got. Don’t worry if your dream is not the same as everyone else around you. We were all created differently for a reason. We don’t all have the same giftings.

14. There is no right or wrong choice when it comes to life plans.  The catch phrase I want you all to memorise and repeat as your life mantra is : Different is NOT wrong.

 15. Be who you are. Be who you were created to be. Don’t mimic other people because you envy their lives. Things are never really as they appear. Everyone has problems – some people are just better at hiding theirs than others.

16. Don’t sit back and expect everything to be handed to you. Work hard and work faithfully. God will see to it that you are rewarded accordingly.

17. Don’t believe everything that people tell you. If it doesn’t line up with the word of God and doesn’t sit right within you – don’t take it on board – it’s not for you. It’s ok to say no.

18. Don’t cheat and don’t be dishonest. You will ALWAYS be found out on both accounts and people will learn that you cannot be trusted.

Keep your integrity in everything.

19. Speak words of life and words of love. Don’t beat people down verbally and don’t always say everything that you are thinking. Once a sentence is out- it’s impossible to take it back again.

Think before you speak.

20. Choose you life partner wisely. Choose someone who you not only love, but someone who you respect. Make sure it’s someone that treats you how you deserve to be treated and treat them well in return.

21. Talk about everything before you decide to marry.

22. Ask the hard questions like:  Are we having children? When? How many? Where will we live?  What is our plan B if things start to go awry? & What is our ultimate escape plan as a family?  If you both know these things up front – most things can be worked out before they occur.

23. Aim high. Don’t settle for mediocre – you deserve the very best in life and don’t let anyone tell you otherwise.

24. Know your limits and learn balance. People pleasing is very taxing on your soul, your emotions, your family and ultimately your life. It’s impossible to serve two masters. Don’t let your work become more important than your family and don’t let anything become more important than your relationship with Christ.

Lastly and most importantly:

25.  Put your trust in God not man. Man will ultimately fail you because we are all only human but God will NEVER fail you or forsake you. He will never let you fall.

Love always Mum xxxxx

Is coffee really the answer?

If you read this blog regularly, you would know that coffee is one incredibly big crutch in my life. It is usually the first thing that I look for upon waking in the morning and something that I crave many MANY times throughout the day.   

Yes….I do believe that I am addicted and I also believe that it’s going to be quite a large hurdle for me to overcome but understanding the “Why” of my excess caffeine consumption may be the key to understanding my somewhat insatiable desire to pump myself full of the toxic liquid daily.

I noticed something very interesting today as I reached for my 5th cup at only 10am.

I realised that there is a very obvious link between emotions and coffee with me.  I guess you could say that it is a similar response to that of emotional eating.

I have been incredibly down for the past few days and spent a couple of hours this morning talking to Mr Patient about it. I sat with him in the sunshine on our front lawn and watched the neighbourhood children riding their scooters and bikes and kicking footballs in the cul-de-sac.

The next-door neighbours were hosting a BBQ (a frequent occurrence that we have NEVER been invited to) and had several cars in their driveway and we could hear the laughter and fun emanating from their backyard.

So….where were our children?

Inside.

With all the blinds closed and the heater on. One was on the laptop. One was on my iPad and the other was on his Nintendo DS. None of them were interested in socialising with the neighbour’s kids and none of them cared to leave the sanctuary of the house.

We realised that we were actually enabling them by allowing this to go on so we made a decision to go and turn all of them off and make them do outside to enjoy the beautiful day that God had given. The tears, tantrums and moaning started and we were told repeatedly that we were “horrible parents” and that we are “SO mean”. Harley even chipped in with “When I grow up and have kids – I’m NEVER going to be THIS awful to them!”.

Cue parental eye rolling.

Part of the conversation that I had with Mr Patient earlier included me asking him what he envisioned weekends would be like when we had a family. His response was surprisingly very similar to what mine was. It included: taking the kids to their various sporting activities, maybe going on picnics, spending it with other families or going for drives to sight see or visit friends.

But of course-our reality is VERY different.

Sure – we could do these things. We COULD arrange something fun every other weekend but we both know that whenever we have ventured out of the “norm” that we pay for it severely over the following days.

Our kids HATE socialising, we don’t have any “family friends” (meaning other families that we socialise with) – they’ve all moved away, and we are not involved in anything that could introduce us to new people therefore allowing for invitations. Sporting events usually end in tears because most ASD kids simply don’t possess the ability to handle losing. We have spent countless hours trying to teach this foreign concept to the boys with limited success because to them – failure is a blemish on their incredibly high self-standards and perfectionistic natures.

Going to church on Sundays is such a major melodrama that it hardly seems worth the hassle and the aftermath of taking our children anywhere different is always so explosive and ridiculously hard that it’s easier to just stay in our little autism bubble and keep to ourselves.

Sounds great right? Just stay home and it will all be fine and dandy?

Well – yes it’s easier on the children and causes less dramas but it’s absolutely KILLING me. I get so depressed when I hear other people recount their weekend activities to other friends and hear about the exciting things that have planned for the upcoming one.

The stories about their adventures and social gatherings that were spontaneously organised.

My weekends are always exactly the same.

Housework. Refereeing sibling arguments, housework, figuring out reasons for meltdowns, housework and trying to keep the peace amongst children that can’t seem to co-exist in the same 4 walls, and you guessed it…more housework.

Surely this isn’t as good as it gets?

Is it?

But back to the caffeine/emotions link.

This afternoon, right after we took the electronics off the children and arranged for us all to go for a walk in the sunshine, and the tears flowed and the anger surfaced – I reached for my favourite coffee mug.

As soon as that hot black strong espresso shot was making it’s way down my throat, I instantly felt the rush of adrenaline that it provided and was ready to tackle the meltdown head on.

I carried Lucas to his bedroom and Harley to his and told them both that crying wasn’t going to fix anything and that I wasn’t going to change my mind. The crying eventually subsided and they dressed themselves (well …kinda!) and as a reward for myself, I went and pushed the button on the coffee machine to deliver another shot of emotional comfort.

I was just about to put it to my lips when I suddenly remembered something that I had read years earlier. It came back to me as clear as a bell and it knocked me for six. The phrase that I had remembered related to the link between emotional eating and weight gain,:

“The worst part about emotional eating is it actually causes your problems to multiply. Eventually, instead of avoiding the issues you’re stuffing down with food, you’ve created another one altogether — weight gain, guilt about eating, worsening health … and then it starts all over again.”

I stopped dead in my tracks as I realised that I was self-medicating with caffeine. And the bigger problems that it creates are: headaches, irritability, heart palpitations, mood swings and dehydration to name just a few.

I didn’t particularly “need” that cup of coffee. Sure-I still love the taste and I do believe that I am very much addicted, but the bigger problem is that I usually just drink it to avoid dealing with what is really upsetting me at the time.

It gives me a rush of control that I desperately crave and takes my mind away from whatever drama is unfolding at the time.

I noticed that I rarely drink it when I’m home alone on Lucas’ pre-school days and I drink the most coffee before and after school and on weekends.

And what is usually the thing that upsets me is the perceived loss of “who I am” and “what I think I need to feel happy”.

The sheer stress of the constant tears, meltdowns, fighting, complaining and rigid/frantically obsessive behaviour that the boys exhibit just makes me want to poke my eyeballs out.

But of course it’s much easier to press the espresso button on the coffee machine than it is to endure the excruciating pain that one would experience with the poking out of ones eyeballs! Not to mention the inconvenience of not being able to actually SEE the melodramas unfolding

Ok….Link recognised and understanding established. I just need to figure out the best way to tackle this one.

.

Oh , who am I kidding! – it’s all too hard…. now -where did I leave that damn coffee mug?…….

The letter.

How can something so “good” bring out such heavy emotions in me?

Isn’t this wonderful news? Just what we wanted to hear? Shouldn’t I be dancing on tables and buying the next round of drinks?

Well, maybe once upon a time I would have.

For those that are lost by these random statements- let me explain.

I’m talking about a letter. THE letter.

The letter that we received in the post yesterday that I left sealed sitting on the kitchen bench because I was too afraid to open it. The letter that Mr Patient forced me to open this morning and find out what information it held.

It is the letter holding the results of Lucas’ Kindergarten interview that we attended last week. I slowly opened it with shaky hands and tears at the back of my eyes threatening to spill out.

I read the first line slowly.

Dear Mr and Mrs Patient……

We are very pleased to be able to offer Lucas a place in Kindergarten next year commencing Term 1, 2012.

My heart sank and the tears escaped.  I couldn’t stop them.

I was partly thrilled that my little boy was accepted but a bigger part of me is still battling the disappointment that moving up to my hometown is looking less likely now.

We had discussed the possibility of me moving there and Mr Patient staying here and coming up on the weekends if we were unsuccessful at getting Lucas into the same school as his siblings. But now that he’s in, that’s not really on the cards anymore. There’s no need to go.

Ok, I confess. I got excited at the prospect of moving and I kinda got my heart set on it right from the very first time that the idea was mentioned.  My Mum, my best friend and countless other friends live there and the kids love the place and know it well. The laid back lifestyle that I grew up in and the idea of everything being no more than 5 minutes drive away was so exciting to me.

I had already dreamed up images in my head of where we were going to live, what school they would attend and how much easier life in general would be with help only a simple phone call away. I would no longer have to drag three kids to every Dr appointment, therapy and meeting. I would have people who could help me.

But the wheels started to fall off when we did the maths and added up the costs of Mr Patient flying home every weekend and it was becoming clear that this wasn’t going to happen.

The way things are at the moment – Mr Patient leaves before the children are awake in the mornings and is often home long after they go to bed at night.  He doesn’t have any idea what we do every day , he knows nothing about any of their therapies and interventions and this morning – he was unable to even tell me the names of his children’s teachers at school.

His excessive travelling means that I virtually do it all alone ANYWAY so moving wouldn’t cause the kids to see any less of him……

But now Lucas is accepted, my dreams are shattered AGAIN!

I need to get my head around the fact that we are staying put. I need to accept that short of a miracle, I will continue to do this alone. And I need to learn to rejoice in this.

Three kids.

Two with autism who require more than I can give.

One mother who is throwing herself onto God more than she ever has before.

Either that or have another nervous breakdown.

Head….meet sand. 

Around the loopy twist and back again.

 It’s now been 3 hours, 49 minutes and 93 grey hairs since I first put Harley to bed tonight.

It’s all so stupid really. Well….to me it’s incredibly stupid but to HIM it’s far from that!

And it’s all because of something that I have done. Yep….I started this one. *rolls eyes*

Today when I was out, I bought a little baby blanket each for the boys that they can wrap their teddy bears in. They often play “putting the babies to bed” but most of the time it’s a shirt or a pillow case pulled off their own pillows that they use to cover them with.

(Funnily enough…my daughter NEVER played with dolls, teddies or any sort of parental pretend play!)

I have been doing this with the boys for a while now in an attempt to teach them turn-taking and the art of caring for another person. It is a modelling exercise that they have really taken to!

The blankets only cost me $1 each at a charity shop and were both still brand new in the packet and the boys were thrilled when I handed them to them. Harley gave the one with the cars to Lucas and the chose the rocket and aeroplane one for himself.

I wrapped their teddy and puppy dog up for them like you would a newborn and we had a lovely time this afternoon “burping” them and singing them lullabies. There were giggles, armpit farts and a lot of burping but they (sort-of) learned how to be gentle, kind and thoughtful.

Anyway, bedtime came and I helped them both to tuck their teddies into their beds and kissed them (all) goodnight!

That really should have been the end of it….But no. Not if you’re called Harley and you have developed perseveration into an art form.

Harley has always been in his very own category and tonight was no exception. He is looping a lot. His brain is playing tricks on him and it’s obviously driving him crazy. He is stuck on a thought and can’t seem to move past it. The worst part is that I can’t really do anything to help.

He has been calling out a lot and when I went in the first time, he was hysterical because teddy had fallen out of his wrap and he couldn’t re-wrap him. I quickly swaddled the bear and laid it down next to him on his pillow, kissed my boy on the forehead and walked out.

Ten minutes later he is calling out again but when I went in there to comfort him, he was unaware that I was even present.

*sigh*

I went in there about half an hour ago and he was sitting up in bed rocking back and forth moaning: “I don’t know how to wrap him” over and over and over again.

But even though he was sitting up, he was still asleep.

At one point, I actually came out to the study and wrote a reminder note on a post-it-note and stuck it to his bed post. The note says: Show Harley how to wrap Teddy in the morning. So that he could see it as a visual reminder and so he could present it to me in the morning.

So far that’s working.

But I might be back……

The thankful mother.

She sat at the back of the room so as to not draw attention to herself and listened intently as the classroom teacher marked off the class roll. One by one the children answered: “Good morning Miss…God bless you” as was customary in this Christian School setting.  

All the while, her eyes were fixed on her little boy as she watched him kneeling and rocking from knee to knee back and forth in a steady rhythm.  He was still facing the front of the room and his eyes were looking at the teacher – but she could tell that his mind was elsewhere. He was daydreaming. He was smiling to himself so she knew that he was at least happy.

She desperately wanted to be given a peek into his world. To see what it was that he saw, to hear the sounds that he was hearing and to understand the connections that his brain was making.

His name was called and he didn’t respond. It was called a second and third time before a student sitting near him nudged him causing his trance to be momentarily broken and allowing him to confirm his attendance. Her son absolutely fascinated her. She wondered what he was thinking about that had made him appear so vacant?

She listened as the class teacher continued to give instructions for the first activity of the day and watched all of the children stand up and head for their desks ready to start their work.

All of the children except for her son of course.

He was still kneeling and rocking and staring into space completely unaware that all of the other children had moved on. He was happy but he wasn’t present.

Then she heard the teacher call his name and issue the instructions again. THIS time he jolted out of his trance and suddenly realised that the instruction was also intended for him. He stood up and walked over to his desk noticing for the first time that everybody else had already done so.

The mother was thrilled. She had taught this trick to the teacher herself!  She told her that a general class direction is often not even heard by her child and that his name needed to be put in front of the instruction so that he understood that it was also intended for him.

She continued to watch him slowly arrange his desk until it was perfect. He still hadn’t picked up a pencil to even start writing and knew that this was because it frightened him. She desperately wanted him to at least have a go but she knew better than to push it. So she hung back watching, waiting and willing him to give it a go.

The teacher had also noticed at this point that he was very slow off the mark. She bent down beside him and asked him to tell her what he wanted to say and told him that she would write it for him. She made a deal with him that she would write one word and he would write the next and her agreed readily to this arrangement.

This teacher knew what her child needed and was prepared to step into the role of “aide” for just a few moments even though she had another 19 students also to care for.

The mother smiled with tears in her eyes and gratitude in her heart for this wonderful teacher. The teacher who has a history of going above and beyond the call of duty for her students.

She knew that it would have been so easy to black list her little boy based on first impressions. She is fully aware that he is often restless and slow to follow instructions. He is physically unable to sit still and concentrate and he simply doesn’t understand the way that the other children interact and behave.

The teacher could have very easily have crushed his spirit by becoming frustrated with him or by constantly telling him that he was wrong or naughty. She could have yelled at him for his lack of compliance and became annoyed with his endless monologues and ridiculous questions but she doesn’t. She actually understands that he is very different.

She doesn’t judge him on what he can’t do but instead she rejoices in his achievements no matter how small or insignificant they may appear. She excitedly passes on these milestones to the mother who shares in her delight.

And for all of this and so much more: …the mother gets down on her knees every night and thanks God for sending this angel to her son.

She is peaceful and thankful and wonders how she will ever thank her enough but realises that the downside to having such an amazing teacher for her son this year is that she has left rather big shoes for subsequent teachers to fill!

What was your first clue?

 I’m often asked what first alerted us to the fact that Harley could possibly be on the autistic spectrum.

 I remember sitting down and just watching Harley when he was a toddler as he gazed at things that most people hadn’t even noticed: The lights in the ceiling, the very tiny crumb on the floor that had been missed by the broom, the ticking of the clock on the wall, the dog howling 20 streets away and didn’t really think anything of it.

 He would sit for hours transfixed by the wheels on his little trucks and cars and spun them around and around never tiring of always getting the same result – they would spin until the momentum stopped them and he would then spin them once again.

 But on the flip side – he was agitated by seemingly EVERYTHING! And his attention span was (and still partly is) absolutely shocking! I had never known a child to be so whiney, so noisy, so discontented and so frustrating!

I was unable to sit him in front of the television whilst I showered because he would scream until he vomited. I couldn’t settle him in his cot and hope for any longer than 10 minutes break and I would spend hours nursing him to sleep in the upright position just to try and catch a few minutes shut-eye myself.

He reacted to every noise, every change of temperature and apart from crawling and walking – he reached every other milestone a long time after the books had told me was “normal”.

It really felt like life in general was completely incompatible with him but I still had no clue that I was dealing with something much bigger than me. I wondered where I’d gone wrong. I rang several parent help lines hoping for some advice I could use and was told the same thing over and over again…..”He sounds like a normal baby & by the sounds of it, your daughter was just a particularly angelic child. Stop comparing them and realise that babies cry- deal with it!”

I was convinced that I’d somehow failed him. All my friends were coping wonderfully with their second borns (or so it seemed) and one by one, they all drifted away.

I had resigned myself to the fact that sleeping in ten minute increments was as good as I was ever likely to get and believed that all of this was just a “boy” thing.

We had decided that we were only ever having two children regardless of the sex and when I fell pregnant with Lucas un-expectantly and found out that I was carrying another boy – I cried.

 No, actually. I sobbed, I howled and I grieved.

I simply could not face the prospect of having to do this all over again. I was caught between being thankful for this miracle child and peeved that I was never going to sleep again.

But then something really interesting happened. My Mum gave my phone number to a beautiful lady that she had met at work years ago and had become close to.

Her name was *Michelle and she had a (then 6-yr-old) son who was diagnosed with Aspergers Syndrome.

 She rang me up and I bawled and bawled on the phone to a complete stranger.

 Her son had also had silent reflux as a baby and had major sleep issues as well.

 HE made HER feel the same way that I was feeling!

 I met up with her the very next time that I went home to see my parents and we see each other most times that I visit now as well.

 On that very first phone call – she told me about the time that she had considered putting a wanted ad up in the supermarket “child for free” and that she didn’t even care about adding “to a good home” because she was just.that.over the constant crying,screaming and hard work.

 I nodded in recognition and told her some of the thoughts that had gone through my own head at desperate moments.

 She made me feel like it was all going to be ok. Something that I hadn’t felt in a very long time.

Over time, she started telling my mum some of the things that her son had done at the age that Harley was at and Mum filed them in her brain as something that she knew she needed to relay to me when the time was right.

Did anyone pick up what happened here?

Yes. *Michelle had her autism goggles on.

She was slowly training my Mum to look for possible indicators and had told her to ease me gently into it as she knew from personal experience just.how.hard.it.is to hear that your child is “different” for the first time.

 As Harley grew from toddlerhood into a school aged child, Mum relayed his speech difficulties to her …and the sensory issues….and the lack of attention span….and the fact that he rarely responded to his name and pieced them all together.

 She told *Michelle of the enormous sleep issues, the spectacular tantrums and the rocking,flapping and repetitive behaviours.

Mum was oh-so amazing in her approach to telling me but even then at first – I shrugged it off.

 My child was NOT special. Well….not in “THAT” way.

 I wasn’t going to have it. I got annoyed occasionally that she would compare Harley’s OTT behaviours to that of *Michelle’s son. But deep down in my heart of hearts – I knew she was right.

I KNEW there was a lot more going on that what I could see.

 I eventually had to admit that this wasn’t a simple case of “uncontrollable child” versus“hopelessly inadequate mother”.

 In hindsight – you’d think I’d have jumped at the chance to “clear my name” so to speak.

 The saying that if you’ve met one child with autism, you’ve met one child with autism rings loud and true here.

There are not two cases that will ever be the same.

 Each individual child on the spectrum presents SO differently and will never ever be like any other child.

 Each of them has unique talents, sensory profiles, special interests, likes, dislikes and personalities.

But one thing remains the same. Mother’s instincts are RARELY wrong.

 Even I knew that there was something not-quite-right about Harley even if it did take me a long time to admit and discover it.

I was too eager to listen to all the fair-weather friends and know-all do gooders in my life saying things like “He can’t POSSIBLY have autism – he looked me in the eyes and plays with other children”. They said what they thought I wanted to hear or even what they themselves truly believed….but even paediatricians rarely diagnose a child immediately.

 These people in my life didn’t have any expertise in the autism field but poo-pooed me for admitting that something was awry with my child.

And it was because of this that I blindly retreated into ignorance and denial.

So please……. If you have a child that you are unsure about-You can’t quite put your finger on exactly “why” you feel this way- sure, talk to trusted friends, talk to family but if you still feel uneasy after all this….I urge you to demand a referral to a paediatrician.

 Even well-meaning GPs dismiss mother’s concerns as paranoia or neuroticism. (is that even a word?)

 Do it not for yourself, but do it for you child.

Please. I implore you.

 They will thank you one day.

One ship – one captain – echolalic style!

Delayed echolalia: –  a phenomenon, commonly seen in autism spectrum disorders, involving the meaningless automatic repetition of overheard words and phrases. It occurs hours, days, or even weeks after the original stimulus.

*****

There’s something to be said for backseat drivers. They can be really irritating. There is nothing worse than someone pointing out every little thing that you do wrong, always knowing a better way to go and never keeping their mouth closed!

Thankfully, Mr Patient NEVER does it to me and I never feel the need to do it to him either because he is a brilliant driver. He drives around the state for a living so has had a LOT of practise!

But sadly, this is not the case with my boys! They can be so frustrating to drive with but they really make me laugh some days!

This afternoon after I’d collected Lucas from pre-school, we were driving to pick Ella up from a dance rehearsal, and from the minute I’d turned off the freeway they both started harassing me.

“Go faster Mum”, “get into the other lane”, “don’t let him in front of you” “why are you still in this lane, you know the exit is coming up” and “MUM – Watch out!!!!!”  

It was so.damn.annoying!

Once I’d turned off the freeway and onto the main road and they seemed to lessen their nagging for a bit so I settled in to enjoy the rest of the trip in relative peace.

But as I neared the turnoff to the dance studio, there was a line of cars up ahead and not wanting to have to sit in it, I decided to take a left turn and go down some back streets to try and avoid it. Right as I turned a corner and moved into the right lane Lucas called out “What are you doing Mum?….This is the wrong way…..We’re lost…..go baaaaaack……”!

I smiled at him in the rearview mirror and said: “It’s ok,  I know what I’m doing. But just remember my boy – there’s only one ship, and one captain”.

“What does that mean Mum?” he asked innocently.

I started to answer him and then Harley cut over the top with: “It means matey, that if you don’t shut up and stop telling Mum how to drive, she will make you scrub the poop decks or throw your sorry ar*e overboard to swim with the fishes”  He also threw in an “Aaarrrrrr” at the end for good measure.

I really shouldn’t have laughed.

But I made a mental note to go through all his DVDs and figure out which one is the culprit for teaching him THIS!

Love me every one day.

I had written a post yesterday afternoon after having a dreadful morning with Lucas.   

It was an absolute shocker of a day! It was meltdown central and SO draining!

I wrote it all out but then I received a phone call from a close friend.

She had some really crappy news and my whole mood just sunk. Everything that I’d just been through seemed really insignificant and tiny compared to her news.

None of it really mattered anymore.

My friend has been given the nickname of “Warrior Princess” amongst us all and it is very fitting!

She is always one of the first to step up and advocate for our kids and puts herself in the front line every time there is a battle going on concerning a child. We all look up to her and she has inspired me to fight until I see results.

She was  the friend that was on the phone to me immediately when she heard about the struggles that Harley was having at school last year and she kept pushing me to be a stronger, louder, more passionate voice for my child.

And I can’t thank her enough for that!

So when I read back over yesterday’s blog post, I realised that it shows a good example of what she has taught me!  I stood up for my child, I didn’t shy away from speaking the truth out and I believe that I would have done her proud!

It is because of this that I have decided that I am going to post yesterday’s post after all.

It’s dedicated to my friend who is in my prayers and who I will be pulling for ALL THE WAY!!!!

Love ya mate!

************************************************************************************************************************************

So today was very interesting! I needed to buy some groceries because our cupboards and the fridge were both looking a bit bare. I knew that I also needed to do a few other little errands so decided to go to a larger shopping centre than I usually do so I could do it all in the one place.

The commotion all started because I usually do the grocery shopping at a little centre that only has a supermarket and a few other small shops like a butcher etc, and I didn’t pre-warn Lucas of this change of plans because he’s not usually the kind of child to react to this kind of change.  But today, he completely lost it in a BIG way!

He screamed and screamed and kicked and attacked me. He was SO LOUD that many people stared , tutted and shook their heads.

I couldn’t carry him because he would go all floppy every time I attempted to pick him up so I had to literally drag him by his collar over to a seat so I could at least hold him tightly and try to calm him.

I had an older man come over and actually said to Lucas: “You’re being a naughty boy for Mummy”…..

I told him that he was NOT being rude but that he is autistic and not coping very well.

He rolled his eyes at me and said: “Oh these stupid fancy names – they’re all excuses,  he’s just a typical naughty boy, they’re all over these days because Mum’s are too soft”

So I raised my voice over Lucas; screams and said: “You sir, are a very rude and outspoken man and I don’t appreciate your opinion being thrust onto me. Especially since you don’t even know what I am dealing with here.”

 

And yes, other people heard me but I SO didn’t care!

 

Another lady came up and started saying: “What’s wrong mate, that’s a big noise for a little fella ” in Lucas’ face as he thrashed and screamed and I smiled politely, told her that he didn’t understand her so she said it LOUDER!

I politely explained that he doesn’t have a hearing problem but that he is autistic and is currently unable to process anything that she is saying..

She walked off  - miffed – without even so much as a goodbye.

Then over to my right, two ladies sat at a coffee shop whispering to each other and staring at us. Then as they were leaving, they walked past us, and then one of them said loudly enough for me to hear:  “Why on earth won’t she just take that child home?” and this time I knew that I had had enough of people judging me and my child.

I stood up, followed her and tapped her on the shoulder and said in my finest sarcastic voice:

 

 “Do you really want to know why I won’t take him home?…..I’ll tell you why. It’s because families with autistic children still have to buy groceries and eat too. Sorry that we are interrupting your morning and inconveniencing you”.  Then I flicked my hair triumphantly and walked back over to my now- moaning little boy.

 

Her face went pale and she shuffled off without even so much as an apology.

I didn’t care.

I simply couldn’t understand how so many people could just watch a mother struggling with her incoherent, thrashing child and see that she is staying calm, stroking his hair, saying “It’s ok sweetheart, it’s ok” over and over again but still think that it’s just a case of a child being a brat?!

The facts were: I had no food in the house, today was my only opportunity to do it and leaving it until another day simply wasn’t an option due to appointments and the like taking up the rest of the week.

I managed to get Lucas into a trolley and started whizzing around the store quickly grabbing the bare essentials and ignored the stares and scrutiny of my fellow shoppers.

I got into the cereal aisle and Lucas turned it up a notch. I caved and lifted him out of the trolley and crouched down beside him on the floor to his level and just hugged him tightly. He buried his head in my shoulder and just sobbed and sobbed and sobbed.

It was then that a wonderful young Mum with 2 little toddlers in her trolley came over and asked if she could help me in any way. I smiled and thanked her but explained that he is just having a bad day.

She said: “Does he have autism ?”

Surprised I looked at her and said: “YES! But how did you know?”

“Because I watched you wrapping him in your jacket and squeezing him and the fact that you didn’t treat it like a tantrum. Also because my best friend has an autistic child and he flaps and rocks in much the same way as your son is”.

“WOW”. I replied. And then I thanked her profusely for stopping to help and for not judging me. I told her that she is a rarity these days and that I wished more people would just come up and ask me questions rather than just assuming the worst.

Eventually he calmed and I got him into the seat in the trolley with my jacket pulled down firmly over his head playing my iphone.

And then of course someone stopped me and asked“Why are you suffocating your child under there”.

 

“He’s just hiding from rude people,  that’s all” . I answered and kept walking smiling to myself and thinking that I have definitely done the Warrior Princess proud!

***************************************

When we got home that afternoon and Lucas was in a much better frame of mind, he came up to me and said in his fragmented speech;-

“Thankyou Mum for love me always every one day. Always love forever…..you to me, that’s all.”

This was HIS way of saying: “Thank you for loving me even when I’m hard to understand”.

I mel-ted!!!

*****************************************

How to lose 3 days of your life…..

I couldn’t be bothered writing a whole post today so I am re-posting this one from this time last year…..I needed a laugh today and this provided it  :D

My husband makes me laugh.  
Sometimes the ‘roll-my-eyes-and-giggle’ kind of laugh, but mostly the ‘laugh-out-loud-I-can’t-believe-you-just-said-that’ laugh!

He is all about “time management” and is constantly showing me ways that I can “improve” and “better achieve my goals” and as a result of this: he is also very familiar with my response of “pfft” and “whatever”.

He likes to run our house like a business meeting and expects me to take minutes. He tells me that there will be a test later so I’d better listen up. He tries to tell me that he is joking (of course) but I believe that a LOT of truth is said in jest

The “business plan” gets run past me every couple of months and I’m expected to present my own personal goal plans and expected outcomes for the children for that quarter so we can compare notes. (I am yet to provide one!)

His ‘plan’ is usually complete with graphs, timelines and records. EVERYTHING has to be kept on record for future reference.

But what I find so amusing about all of this is the fact that he married me!

He could not have chosen a less organised, lackadaisical, fly by the seat of her pants wife if he tried!

Maybe that’s where the secret of our success lies? - I would be driven crazy by someone as slap happy as me and he wouldn’t cope if he had to share control!

His outlook on simple everyday run-of-the-mill tasks is really quite unique.

For example:

He has informed me that I will waste the total of three days of my life if I tear the sachets of sugar that I put in my coffee individually. But if I tear them both together , then the world will be at peace for another day because the extra three days I have then saved, can be put to good use by doing something more economical??.

And , there was a time recently when I moved our kitchen bin from beside the bench to beside the fridge because it looked much neater and was hidden from sight.

The next morning I found it moved back with this note attached as an explanation :

Dear Fiona,

Thank you for your attempt at making the kitchen more aesthetically pleasing to the eye, however, I calculated that with the bin being moved to that location, it would take me an extra five paces to utilise the bin as it is further from where it used to abide beside the kitchen bench.

This is completely unacceptable for the following reasons:

1. There is too greater possibility of garbage seepage and spillage finding it’s way onto the floor during the extra five paces whilst in transit from the bench to the bin.

Bin juice is no-one’s friend.

2. I will waste an hour and half of every year by completing five extra paces every time I wish to use the bin if I use it on average of four times per day.

Those extra twenty paces multiplied by thirty years, equals approximately a day and a half of the rest of my life being wasted  every time I wish to deposit wasteful products into said garbage receptacle.

3. It is a known fact that garbage bins do no belong beside refrigerators.

4.The bin has ALWAYS been beside the bench for the last seven years, nine months and sixteen days that we have resided in this house and I simply cannot allow this atrocity to continue another day.

5. It doesn’t look right.

Thanking you in advance for your assistance in this matter.

Mr Patient……..

Yes, he is serious.

If I didn’t laugh, I’d cry!

No rules day.

This weekend, Mr Patient took Ella on a 4wding weekend escape with his work.    Our entire family had the option of going too but the thought of spending two full days in a car with two children who HATE travelling made me shudder!

So the solution was for me to stay home with the boys.

It turned out to be a fantastic decision too. We have had SO much fun together.

When we all arose yesterday morning, I told the boys that it was a “no rules” day. BUT before you all start rolling your eyes and telling me what a fool I was let me explain…..   I am WELL aware of how literal my boys can be so I made sure that I emphasised that house rules STILL applied. ie: No hitting, punching, kicking or name calling and that when Mummy asks you to do something – you still need to do it!

The “no rules” part referred to the fact that there were no set in stone rules over what they were allowed to play with and for how long.

They chose Lego and baking of all things - I had to stop myself from reacting every time that I looked out and saw the Lego strewn from one end of the living room to the other but it was wonderful to see them having so much fun!

Anyone who knows me would know how hard it was for me to see this!!!

They created a lot of new and exciting Lego spaceships and I got an awesome video of Harley talking me through the way that his mega ship worked. Unfortunately, his real name and Lucas’  real name are all through the video so I  can’t put it on here but there was one  part where I asked him what his craft  was called and he said:

“I don’t know but I’m going to build it  one day when I grow up”….“PROUD  MUM MOMENT ALERT!

But here is a photo of him with his creation instead

Check out the pride on his face!

And Lucas with his duplo spaceship!

After lunch, we headed into the kitchen  and made some white chocolate  biscuits. (cookies for all my Northern Hemisphere friends).

The boys were so excited to be helping  me in the kitchen. I’m ashamed to say that I don’t allow them to as often as I probably should because I HATE the mess that they make, but because I’d promised “no rules day” I had to let them have a go!

Harley can't resist the urge to play in the spilt sugar

This is serious work!

The best part!

 I just love the concentration on their faces as they measure and stir the ingredients!

That night, Harley asked me if Lucas could sleep in his room for a “slumber party” and he helped me move the folding bed into his room and make it up for Lucas.

They were SO excited and begged me to join them too!

I made us all some hot chocolates with marshmallows and we ate our biscuits in bed and they giggled because normally, this kind of thing is a big no-no and they felt SO NAUGHTY!!!! It was divine to see their delighted little faces at something that really is such a little thing!

We laid on the bed together taking silly photos on my phone and I stayed until they fell asleep before creeping out again.

   

Later on, I snuck back in to take these photos of my little sleeping babies with their teddy and puppy snuggle toys and vowed that we absolutely HAVE to do this again.

I desperately wanted my boys to remember this weekend and how much their mother loves them. I want them to realise that they are perfect just as they are and that I would move mountains for them. I know it’s been rough on them lately with my emotional turmoil being so tangible  so it’s moments like these that overshadow the difficult days and make them so much easier to endure when they do come.

It’s just a shame that life can’t always be this sweet.

The “G” word…

Sometimes, answers can come from the strangest of places. And by strange, I mean from somewhere that you least expected it to.   

Somewhere you’d never have imagined and from someone who you barely even know.

BUT – God works in mysterious ways!

If you click here you will read that this blog was always intended to be a place where I could write about whatever I needed to at any given time NOT just about parenting children with autism.

Of course- it all ties together in the end because autism is so intricately woven into every single part of our lives. But this is not a specifically autism related post per se.

I will start this post off with somewhat of a “warning”.

This post is going to be a deep one. It’s going to be a little long and probably a bit confronting for some people.

It is full of my life story and if you don’t read through until the end, it may seem like a bunch of annoying complaining, but if you do choose to read, you’ll see the awesome self discovery that I’ve made and you might even see your own life in a new light.

Who knows?

Right. That said – I’m going to do a quick flash back to my last post where I admitted that I have been struggling a lot with depression lately.

I ended that post with words to the effect of: Autism is the root issue of everything that’s difficult about my life.

A few hours after I’d published it, a very close friend wrote to me and said that she had just finished reading it and that she didn’t feel that autism really was the reason for all my sadness and pain. She said that she believed that autism was just a small part of the bigger picture but that she didn’t quite know what “the thing” was.

I actually completely agreed with her – but because I was still unable to figure out why on earth I seem to struggle SO much more than other autism mothers (maybe it was just my own skewed perception), I assumed that autism was to blame.   It was something that bothered me endlessly and I needed an answer and that one was the most obvious choice.

Anyway, one of my regular readers and commenters, a lovely woman whom I have never met (but hope to one day) wrote that she thinks that I am still in a period of grief. And as soon as I read that something inside of me shouted YES! That’s it!

I KNEW that there was something in that!

And I don’t believe that it’s all related to my father passing away a couple of short years ago. I found this wonderful passage in a psychology book (of all places) and it was spot on as far as I’m concerned.

“Many assume that grief is associated only with the loss of a loved one.
Psychology shows us that this is very often not the case, but those suffering grief from things other than the death of someone are often told to “snap out of it.”
Grief is, quite simply put, a response to loss.
The loss can be of something tangible or intangible. It helps to recognize that disappointments, abuse, recognizing one’s limitations, illness, losing a job, or so many other things can elicit a grief response.
People suffering a loss need time to grieve, and such time depends upon how important the loss was.”

W-O-W!

YES! That’s me!

Let’s see: In 2 short years, I had 5 major surgeries. Check.

The brain surgery being the biggest at a whopping 13.5 hours long – complete with a collapsed lung and the recommended recovery period from this is 2 YEARS!

I had an undiagnosed/ aggressive/ insomniac autistic 18-month-old child on my hands at home so recovery wasn’t really an option.

9 months after that, I had my corneal transplant then found out I was pregnant with our unplanned “high-risk” baby Lucas. Check.

Consequently, I had a general anaesthetic c-section followed by a tubal ligation and ALL of these took place in the time that I was “supposed” to be recovering from brain surgery.

We had the added stress of our finances being incredibly stretched due to all of the medical bills I’d racked up (You’d think having brain surgery to remove a 5cm tumour would be covered under Medicare wouldn’t you?) And not to mention the exorbitant costs related to the corneal transplant too. Check.

And just after Lucas was born, I had to undergo surgery for the 5th time to get my gall bladder removed. (There were 90 something peppercorn sized stones in my sterile jar if I remember correctly!) Check.

Then my dear Dad was diagnosed with cancer and shortly after I contracted glandular fever and due to not being able to recover properly– my Doctor told me I was borderline chronic fatigue. Lovely!    This possibility scared the wits out of me so emergency procedures were put into place and Mr Patient was forced to take time off work until I was well enough to carry on. Check.

A few months after that, I received a phone call from my Mum asking my sister and me to go home immediately because the Doctors had told her that Dad was on his deathbed.

We rushed home and he died a few short days later. Check.

6 months after losing Dad, we were slugged with Harley’s autism diagnosis and it was about then that I started blaming autism for everything that I hated about my life. Check.

And while we’re talking about grief – there is definitely a grieving process related to the discovery that your child is “different”, (though I do believe that my kids can do whatever it is that they choose to do and that they will do it well!)

I went to a counsellor and she ordered that I be medicated before she’d even attempt to talk to me again. She diagnosed me with “acute clinical depression” (Whatever that means!)

I didn’t see her for very long because it got far too expensive and she was difficult to get appointments with plus I had no-one able to mind 3 small children for me. I did however find another counsellor that I was able to see during school hours and had a wonderful baby sitter for Lucas – but that was also short-lived due to the time constraints and travel involved.

It’s times like THIS that I find having no family to help out really tough. You can only ask friends to help out so many times before you wear out your welcome no matter how many times they say they’re happy to help.

The simple fact here is: I haven’t had time to grieve ANY of these things that have gone on in my life because they have all happened so closely to each other and they have kept compounding and building up and it TOTALLY explains why there always seems to be a pressure cooker ready to explode in my brain!

Now that I know that it is grief that’s holding me back , I can finally stop blaming myself for not coping as well as everybody else.

I can stop wondering “WHY” I suck at things that other people seem to just drift through and I can now actually believe it when my Mum tells me that I’m NOT a basket case & I’m NOT a crappy, disorganized, useless mother – I just have a lot on my plate and I have a lot of grief to work through!

It’s the keeping it real factor that I have been struggling the most with.

I have always found it REALLY difficult to “put on a happy face” when I feel like screaming.

I’ve struggled to “appear” normal for fear of turning people away.

And I honestly physically hurt whenever I tried to be something I’m not. I know my intensity can be scary and my emotional rollercoasters are annoying – but I’m still a work in progress here.

I’m living, learning and growing.

I’m still grieving, but the thing that excites me the most is that I have discovered that I am up to step 4 in the 5 part grieving process of:

Denial

Anger

Bargaining

Depression

and

Acceptance!

 

So guess what?……… I’m almost there!

See you on the other side!

 

And thank GOD that I have God on my side

Write til it’s right.

“Are you a writer?” enquired the elderly lady sitting at the table in the food court beside me today.

image via ... rehendhi.wordpress.com

I giggled “No, not in the professional sense but if you’re asking do I write – then the answer would be yes. I write everyday” I answered.

 “What is it you’re pouring your heart into at the moment if you don’t mind me asking dear” she went on.

“Err, well” I stumbled over my words “Just a whole lot of emotional poetry, a bit of ranting and raving and the odd bit of sense” I said as I smiled at her.

 “Well you certainly look engrossed and that’s the third page you’ve ripped out and screwed up dear so something is obviously bothering you” she said gently.

 “Nothing I can’t handle” I replied and noticed the wheelchair that she sat in for the first time and wondered what her life story was.

“Are you a mother?” she asked.

“Yes, I have three children” I replied wondering what it was that alerted her to this. Lucas was at pre-school today so I was out all alone and I didn’t think I was giving out a “mother” vibe.

“I thought so” she answered. “I can see that you are churned up about something and I know that nothing can break you as much as when one of your children are going through something big”

I was amazed at her perception and smiled and waved as she turned her wheelchair around and bid me farewell and left with the parting words “One day you’ll be able to remember today and marvel at how different life became” and with that, she waved again and drove off into the crowds to continue her shopping.

I sat there for a few minutes trying to process the conversation that I’d just had and wondered what it was that this lady had seen!

***

This morning after school and pre-school drop off, I went up to a local shopping centre and grabbed a coffee to start my day. I walked over to a table and sat down to enjoy it and right at that moment, my brain went into overdrive and I knew that I wasn’t likely to get a break from my swirling thoughts until I wrote them down.

I looked in my handbag and grabbed the pen and notepad that I keep in there and started to write.

It became clear very quickly that the small pocket sized pad wasn’t going to be anywhere near big enough to jot down the tornado that was circling in my head so I went to the dollar shop and grabbed a jumbo pad and started again.

I wrote and wrote and wrote until I started to feel more like me and less like the angry, damaged, hurting soul that seems to have taken up residence in me lately.

I wrote a poem today entitled “The stupid black dog” which was all about the cloud of depression that I have struggled with for years, but after reading it back to myself, I saw that it was WAY too dark to ever put on here!

I don’t want to scare off the 3 of you that actually read my dribble so it’s been filed under “darker days” to never see the light of day again!

And in case you’re wondering…..yes – it helped. A LOT!

Once it was out, my brain could then shift into a different gear and I was once again able to process the little things that threatened to drown me only hours before.

I realised again (and I hate to say it) – but everything comes back to flippin’ autism again.

Everything that I struggle with in my life at the moment, everything that stops our family from doing what we’d like to do, everything that’s changed our hopes and plans for our children  – all comes back to autism.

Everything that prevents my child from being accepted easily, everything that’s related to schoolwork struggles, everything that’s got anything to do with social graces, and everything that keeps me awake at night?

Yep. Autism.

It really is a bugger of a thing.

Sure – there are worse things in life. But this is OUR reality. This is what we live with day in day out and this is what I keep pushing through until I get the same results that “regular” families can achieve without even trying.

And yes – my children WILL achieve great things, they WILL succeed and they WILL be awesome at whatever they choose to do but it’s not gonna come easily for them! That’s just part of the deal.
I know that I am blessed. I know that I have amazing friends and family and I know that I WILL BE OK!

But sometimes……life really majorly stinks.

Oh…and something I’ve learnt lately – get a journal……seriously…..it’s fantastic and the cheapest therapist I’ve found yet!

This is it…….

Ok, it’s decided.  

After many phone calls, assessments, interventions and much planning we have finally secured an interview with the Principal for Lucas’ possible kindergarten enrolment for next year. It is next Wednesday and Mr Patient has already taken the time off work to attend.

Right now my stomach is in knots.

There is just so much emotion attached to this small event that even I who is rarely lost for words am finding it difficult to describe what it feels like.

There are so many unanswered questions.

Some many things that I need to ask but don’t know how to start putting it into words.

Will the school be able to provide what he needs or will it be another Harley nightmare all over again?

Is it going to be another case of “He’s totally fine Mrs C” at school but waterworks, fireworks and nuclear explosions once we get home again?

Will I spend hours in tears because every.damn.thing related to school makes my head hurt.

Is Lucas’ easy-going nature and amiability going to mask his struggles and cause him to fly under the radar therefore not allowing him to access the help that he so desperately needs and deserves.

Am I going to have to kick my mother advocacy role up a notch? Or it the ranting and raving that I’ve had to do for Harley enough already to get my point across?

Do I have to give up my dream to move up to my Mum’s? Because I want this more than anything right now. I have wanted this for years but it never seems to eventuate. There is always something stopping it from happening.

I want to be near family and friends and I want this nightmare over. I am tired of pushing elephants up hill and continuing to do what isn’t working in the hope that we will get a different result.

***

Dear God,

Does this interview mean that we are supposed to stay here now?

Is this what you want for us ?

Did I miss the signals? Did I not hear you correctly?  Is this the answer you promised me?

I know I said I’d go wherever you lead and that I wanted to stay in your will but I’ve gotta tell you – I’m really struggling with this right now.

You know my heart’s desires and I’m past exhausted.

This whole “11th hour” thing has got bells on it quite frankly. I wish I knew what to do.

Just sayin’.

***

It’s easier to blank out and refuse to process any of it for fear of the wheels falling off in a big way.

Retreating into my shell and taking it one step at a time seems like the only way forward at the moment.

Seriously.

I’d say “wish us luck” but that would be ridiculous.

*************I’ve disabled comments on this post. I don’t want sympathy or advice. I just needed to vent in order to ease the tension in the pressure cooker that is my head right now……:)