Someone broke my baby.

There has been a huge shift around here lately. And it’s really thrown me. I’m not sure what exactly to do so I’m gonna write until I can get my head around it and try to make some sense and figure out a game plan.

Feel free to click somewhere else if you’re not interested in my ramblings. I wouldn’t blame you!

~

Oh? So some of you stayed! I’m impressed!

I’ll go back to the start of the story:

Exactly five years, 8 months and 2 weeks ago we welcomed out second little boy Lucas into the world.

He was unplanned but a really beautiful surprise. He was an incredibly good baby and an absolutely treasure. I admit that I was nervous carrying him for several reasons but mostly because I was genuinely scared to have another boy.

You see, Harley was an absolutely impossible baby with more issues than you could poke a stick at and still at almost 9 yrs old doesn’t sleep through the night.  Or cry any less, or eat any more or behave any better than when he was a toddler.

Ugh.

I remember the day clearly. I was at my 20 week ultrasound. And when the sonograper told me that I was carrying a boy, I burst into tears, NOT because I was disappointed and NOT because I didn’t want him but simply because I just didn’t think that I could possibly go through all of that drama again. The very thought of dealing with 2 completely out-of-control little boys just scared the pants off of me! (Harley was still undiagnosed at the time).

I have always said that out of the 2 boys, Lucas is the easy-going and unflappable one and Harley (although an absolute treasure and blessing himself) has been the almighty handful.

I’ve written MANY times that despite both of the boys sharing a diagnosis of Aspergers Disorder, they couldn’t be more different. Lucas has flourished and shone from very early on and Harley has struggled with extreme anxiety issues, massive sensory issues and is way more aggressive by nature.

But that has started to change lately.

These days – Harley is getting up in the mornings, making his own breakfast, eating it and getting dressed in record time. He has finally worked out that once everything is done – he has more time to do the things he enjoys before school. It’s been an absolute joy to see him so compliant and has given me hope for the future after all the years of heartache that he has provided.

And just when I started to count my chickens…. I found plenty more just waiting to hatch.

Because nowadays, Lucas has taken up the baton and has picked up where Harley left off.

We are running the same frustrating marathon that we ran with Harley at the same age and I gotta tell you – it absolutely sucks.

Lucas is now the one lying thrashing on the floor screaming, kicking and flailing his arms every morning. He is refusing to eat breakfast, making his body like a dead weight so he can’t be picked up to be dressed and hiding underneath his bed and refusing to comply with anything. Cleaning his teeth needs 2 adults . One to hold him down and prise his mouth open and the other to block their ears with their spare hand and shoulder to drown out the screaming and try to wrangle a toothbrush into the tightly clamped shut jaw.

Mornings have become quite a drama and it’s taking me almost and hour and a half to get them out of the house these days. He is crying more than I’ve ever seen him cry and is coming home in the afternoons like a bear with a sore head.

It’s like he has had a complete personality change.

I went and spoke to his lovely teacher last week and asked her if she’s noticed anything different in the classroom. And predictably she said that he is doing really well. ( I expected that *sigh*)

In fact, she said that he is on a reading level that is a lot higher than most kids his age and that he excels at reading and writing. I stood there with my mouth hanging open and was shocked to say the least since I’ve watched Harley struggle with every.single.aspect of school since day dot.

I’m not used to hearing things like that. Usually teachers tell me that “I know he’s trying but…..” or “He needs to work on….”.

So to be told that your child is excelling should feel really good right?

Well maybe if we weren’t copping the brunt of his exhaustion and frustration at home.

I think he does actually love school but it is absolutely draining him. I think that it is a case of the typical aspie habit of keeping it together at school and losing the plot in a big way once he’s safe at home again. I’ve seen this all before.

But whatever it is, I want it to stop. For his sake as well as ours. I want him to not only cope but to thrive and flourish. I’m thrilled in the progress we’ve made with  Harley but wishing that I could enjoy it more without this hanging over my head.

I’m too tired to do this all over again for God only knows how long. I feel like I’ve done my time, and I’m stamping my foot and pouting. It’s just not fair.

Lucas used to be my placid side kick. He was my take anywhere child. He was a reminder to me that I wasn’t a crappy parent and that Aspergers was more than out-of-control behaviour and aggression.

But then I sent him to school and he came home all changed.

Someone broke my baby.

I’m being mocked by a list!

So it’s been almost three weeks since I have been a free agent.

Three weeks where I have had six straight hours to myself, five days a week.

A while back, I made a ‘later’ list.

You know….a list of all of those little things that have needed doing but you’ve never had to time to do them? I told myself (and Mr Patient) that once all the kids were at school full-time, that I’d tackle that list with gusto.

So I sat down today with a pen and decided to tick some of them off so that I could feel better about myself, and like I’d actually achieved something worthwhile over this three-week period!

OK.

So, number one was the basket full of sewing repairs.

I have a HUGE basket full of many items of clothing such as dresses with seams to let out, skirts with hems to fix and shirts that need buttons sewn on. Oh – and Hubby’s work pants that need to be altered too.

I peered into it and realised that none of it had been touched. It has been so long that dust has settled on the edges of the basket. It was not looking good!

I sighed and moved onto number two on the list.

2. Clean out the pantry.

I opened the doors and glanced in (which is kinda funny since I look in there everyday and I wasn’t sure what I thought was going to be different this time!) and nope – it was still a massive mess of opened boxes and mismatched Tupperware containers. An upturned cereal box with a trail of nutri-grain spilling out caught my eye and I quickly slammed the doors closed and went back to my list.

“It’s all good” I told myself, “You are exhausted, so you know that you MUST have done a LOT. You’ll see”!

Number 3. Tidy up the games cupboard. 

Now THIS one I knew I could tick off. I walked into the hallway to open what once was a linen press that we had turned into a games cupboard. I flung the doors open proudly so I could check out my awesomeness.

But I was startled to see boxes literally stuffed in and several loose games pieces on the floor.
The higher shelves were still immaculate but the lower ones….not so much!The second bottom shelf had some of Lucas’ dinosaurs gathered in a corner having a “pow wow” and for some strange reason…..there was a sheet stuffed in there? It hasn’t been used as a linen closet for years?

But then I remembered:

<<– See this photo?  See that little bitty screw and screwdriver that are stuck up in the architrave with blu-tack? Well, the cupboard usually has a child lock on it to prevent access by the smaller humans but I took it off a few weeks ago so that Ella could get to it easily when she had a friend stay over. I hadn’t told the boys that they could access it now but they have obviously found out!  And silly me forgot to re-attach it!

I sighed resignedly and glanced down at item number four hoping for a reprieve.

4. Re-organise our walk-in robe.

I laughed out loud when I read this, I KNEW it was a disaster – I got dressed this morning by putting on something straight from the ironing basket (un-ironed of course)!

My list sure wasn’t looking good.

I thought a good alternative would be to write down what I HAD done instead of pointing out to myself what I hadn’t.

Let’s see. Monday: Met a friend for coffee, put petrol in my car, made the lunches for the week at school, re-packed Ella’s bags for camp (don’t even GO there!), came home and slept for 3 hours. Dragged myself up to school to collect the kids, had an impromptu meeting with the teacher. Spent waaaay too long arguing with Harley over doing his homework, over showering, over packing up his toys, over just.about.everything! And fell into bed exhausted at 9pm.

No. Can’t write that down. That’s just a normal day. No special achievements there.

Tuesday: Vacuumed and mopped house, washed 4 loads of washing, baked 2 loaves of gluten-free bread and changed sheets on three beds. Not bad….but then I lay down on the lounge and slept for an hour before collecting the kids. Same afternoon routine : argue, be firm, still manage to lose, fall into bed exhausted.

Wednesday: Drove Mr P to the airport for his interstate flight, did the grocery shopping, slept for 2 hours and was woken by a text message from a friend. Met her for a quick coffee before collecting the kids.

After school fights, forcefulness and frustrations.

Rinse and repeat.

And today: 2 more loads of washing, fresh food shopping, cooked two meals and …wait for it…..slept for another hour.

There’s a theme emerging here! I seem to be doing a lot of sleeping. Hmmmm, maybe it’s my body’s way of saying ENOUGH ALREADY!

Or maybe it’s just all too overwhelming and my brain is choosing to shut down! LOL

I seriously take my hat off to mothers who manage to work outside the home as well as keep a house and family. I simply do not know how they do it. They are AMAZING!

I can hardly cope with the everyday stuff let alone my “later list”. And about that later list?

Well, if you’re looking for me – I’ll be curled up on some couch somewhere watching that stupid list BURN on an open fire! I don’t care if it’s summer here! I can handle the heat.

And then?

Well then, I’ll more than likely doze off

The armchair analogy

image from: featherandnestkim.blogspot.com

Yes!

It’s snowing on my blog! Usually it would seem silly being that I live in the Southern Hemisphere and it is Summertime here during Christmas but I thought that it was fitting since it has been SO COLD here this past week!

And sadly, the weather isn’t the only thing that’s been a downer lately. It has been quite difficult for me in that I really have been consumed with feelings of mother guilt and regrets.

And while I know that I am probably being too hard on myself – I have struggled to get past these feelings.

Harley had a particularly rough time last week, which I found really hard to take because things had only just started to look up again. If you remember the post before this one – I was just celebrating how far he has come only to slump back to reality with a thud once again.

He is still being bullied at school and it’s really taking its toll on him. There are 2 kids doing the bulk of the teasing but once of them is the ring-leader and the other one a follower. The main gist of the teasing is about him having aspergers and has now extended to him being gluten-free.

I know.

Stupid things to bully a person over but that’s what’s happening.

And I know that Harley is particularly sensitive – more so than your average 8-year-old boy, but that’s just the way he is made and no amount of coaching is going to change his genetic make-up. He gets it from me I suppose because I’m easily hurt by words and it’s killing me to see my boy so sad.

The hard part is that the bully is known to be a “nice kid” to the teachers so convincing them that there is more than meets the eye is proving to be a tough one.

And as it is with most spectrum kids, Harley hasn’t got the ability to be as cunning as his NT peers and often gets caught retaliating when the instigator gets off scott-free because he is smart enough not to do it in front of the teachers.

But I trust the school to tackle this in the right way.

I have to. It’s all I can do right now.

There are only 4 days left of the school year before they break up for 7 ½ weeks and I considered not saying anything and just hoping that it will all blow over, but I decided that if I mention it now, at least if anything happens next year there will be a history of this recorded.

~

We received both of the older children’s school reports last week too.

Ella did exceptionally well and we are mega proud of her. We believe she could have done even better because she also readily admits that she didn’t give her all.

But she is naturally a very smart kid. She has always been an A and B student and has glided through academically since day one with barely any effort at all.

I haven’t really had to put any time into convincing her to do her homework and she tackles all her work with determination. But it’s important to note that we didn’t do anything to make her that way. That’s just how she is. And we are very proud of her success.

But conversely, we have spent hundreds of dollars on tutoring and therapies on Harley and I personally have dedicated many many hours to helping him and yet he has struggled with every.single.subject this year.

Sigh.

His marks weren’t terrible, he isn’t lagging behind the rest of the class and comments on his report reflected that he tried his very best and that he is really really trying but they also scream out ASPIE ALERT all the way through.

Comments such as: ‘gets distracted easily, needs support to complete fine motor activities and struggles with hand-writing’ were all the way through it. He can’t help that. It’s who he is.

And we are oh-so-proud of him because we know that he gave his all and that’s all we ever expect but he is being hard on himself. (Wonder where he gets THAT from?!)

If anything, he worked HARDER than Ella yet she blitzed him with no real effort at all and that was a bitter pill for him to swallow.

~

There is a beautiful little girl in Harley’s class who also has aspergers and she did remarkably well this year and I am SO proud of her! She deserved the accolades because she did such fabulous work this year.

Her lovely mother (a friend of mine) needs a pat on the back too because she also worked really hard with her and I’m thrilled that their hard work has paid off.

But I am worried….. Because I’m hoping that the teachers aren’t seeing this as her trying really hard and Harley not trying at all. I hope that they don’t expect him to be like her because it’s never gonna happen! He is a completely different person with completely different skills and talents.

All you autism parent friends will know the saying : “If you’ve met one person with autism, then you’ve met one person with autism” and this is so true when it comes to Harley.

I have watched him push himself but I have also watched him crumble. I have seen him strive but also dissolve into tears regularly.

It breaks my heart to see him walk out of school deflated and I know how much of a toll this year has taken on him. And to have it all topped off with bullying is the straw that’s breaking the proverbial camel’s back.

So I sit here and ask myself these questions : What could I have done differently for my boy?

What skills should I have put more hours into teaching him so that he didn’t have to struggle so much?

Should I have encouraged him more?

Would it have been different if I had invested more time into teaching him coping mechanisms rather than insisting that he do it my way?

And then it all starts to do my head in and I start to reconsider home-schooling him again.

Not because I think I could do a better job – actually quite the opposite.

I know that I am NOT cut out to be a teacher at all but I don’t want to keep sending my boy into his idea of hell everyday and keep expecting him to force his square peg butt into the very round holes that is the school environment.

I know that my boy will achieve great things. I KNOW that he will not only survive but he will be sensational and I KNOW that he is destined for great things.

But I just wish it didn’t have to take such a toll on him in the process.

He is an amazing kid. ALL of my kids are, and I’m still yet to find out how Lucas will handle school next year but I refuse to let my head go there just yet!

And its times like this that I am so pleased that I have a close relationship with Jesus.

My Dad taught me to visualise a big stuffed comfortable armchair in a room with a light breeze and all my happy things surrounding me. Then he told me to imagine laying back into it and just resting and relaxing and knowing that I am loved and well cared for.

And he explained that this is what God means when He tells us to “Rest in Him”.

Sounds great right?

Nope…sounds AWESOME!

I’m of to find a comfy place right now and if you’re looking for me, I’ll be asleep in my armchair with my caffeine I.V. drip in my arm and a tray of chocolates that never runs out beside me.

Because THAT my friends,  is my idea of heaven.

The debt collector is a ‘comin.

This was actually more jet-lag than anything but I think it's a hilarious pic!

Our family has a huge debt that keeps increasing day-by-day, week-by-week, month-by-month and year-by-year and I’m sure that we are going to be treading water for a lot longer just to stay afloat.  The debt collectors are sniffing at our door and we are doing our darndest to keep them away.

This stupid debt keeps attracting ridiculous amounts of interest and we never seem to make a dent in it no mater how hard we try.

Sure, we occasionally have a few weeks and sometimes months where we make a few solid payments and cut into the principle but those payments are never enough to actually get us as far in front as we’d like.

Most of the time, we don’t even care about meeting the minimum payment, we would be happy just to pay ANYTHING off.

But don’t worry Mum: We’re not going to have to declare bankruptcy anytime soon because I’m talking about our sleep debt.

I seem to write a lot of posts about sleep on this ‘ere blog which is actually quite amusing considering that it’s something that none of us have very much of!

And during these past few weeks I have noticed some very interesting things relating to sleep.

Since we moved Harley’s bed into Lucas’ room, they have both been sleeping a lot better and that in itself is a miracle. Sure it takes them longer to fall asleep because they lay there and chat for a bit (like I assume some married couples do as they talk about their day – but not us…no, my husband has a patented phrase: “Head on pillow, light out, no talking) but once they fall asleep, Harley is now staying in his own room.

YAY!

But this weekend we have had some very interesting developments.

~Mr Patient has travelled with his job for the entire 14 years that we have been together and the 13 that we have been married and although it’s sometimes tough: It’s not a big deal because we are all so used to it.  Well, 3 of us are, Harley has never been a fan of change whether he has been adequately prepared for it or not.

And this past week, Mr Patient was away for 5 days.

Well….Most nights went like this:

7:30pm: – I put the boys to bed.

7:31 pm – 12am: Harley comes out every ten minutes to check that I’m still here.

12:00am: – I go to bed (yes, it’s late but I usually have so much to that it’s just the way it is).

12:01am – 3 am, Harley comes into my room every 15-20 minutes to check that I haven’t gone anywhere.

3:00am – 6:00am : – I allow Harley into my bed because I’m exhausted and tired of walking him back and reassuring him that I’m not leaving EVERY FREAKING TWENTY MINUTES!

Rinse and repeat for the next 4 nights.

So as you can see: sleep just doesn’t happen when Daddy is away.

Well….you remember me writing that the whole boys sharing a room thing was working out ok??

Do you remember how excited I was because I thought I had found the solution at long last?

Do you?

Huh?

Well….yeah and nope.

It *is* working when Mr Patient is at home and all is routined and well but the second he sets foot out that door again, all bets are off.

And you know what? I’m an adult.

I don’t LIKE having my sleep stolen but I deal with it. It’s all part and parcel of having a special needs kid I’ve told myself , but Lucas?
WOAH hell no.

Prior to him sharing his room with Harley, yes he would get woken up frequently at night but it was always down the other end of the hallway so still managed to sleep through som of it.

But now? …… Now he hears EVERYTHING!!!!!!

Every toss and tumble in bed. Every sigh, grunt or groan. Every whimper and call for Mummy. Every time the door squeaks as Harley tip toes out. EVERY DARN THING!

And has it affected him?

*Gulp*

Yes. Very much thank you.

This entire weekend I could have sworn that the boys swapped bodies. Lucas has been the one whining incessantly. He has been the one with the filthy temper. He has been the one with the violent streak and the one who cries over ev-ery-thing!

He is like a mini Harley. Our mostly passive, agreeable boy has turned into a tantrum throwing, meltdowny emotionally hopeless wreck.

And why has this happened? Well….I’m guessing that he is behaving in a fashion similar to that of his older brother for much the same reason that Harley acts out:

HE IS SO DARN TIRED HE CAN HARDLY STAND IT!

There. I feel better now that I’ve gotten that off my chest.

Harley has gone back to sleeping through now that his Daddy is home again but not only do Mr Patient, Harley and I have this stupid sleep debt. Now Lucas needs to start making payments too.

But for him it is going to much easier: a power nap on the sofa here, a lie in on Saturday morning there, a snooze on the rug in front of the tv and slowly but surely he will pay his debt in full.

We have a massive 8-year debt to pay and it’s not something that can be remedied as easily. But My wonderful husband has recognised this need in me and allows me to stay in bed as long as I need to on Saturday mornings and sometimes Sunday’s too if it’s been a particularly bad week. And more often than not, he will also crash on the couch sometimes over the weekend too.

It’s kind of a 2 steps forward 1 step back thing but we are still moving forward albeit slowly.

And now, we’re left to come up with a payment plan for the next time that Mr Patient travels. And I only have a few days to do so before he’s off again.

And while I’m on this subject: My inbox currently sits at 176 as of an hour ago. 80 of these are notifications of posts on blogs that I am subscribed to and a large chunk of the rest are comments that have been made by all of you on my blog.

So if it seems that I am ignoring you or your blog, please know that I feel very bad about this but it all comes back to only having the funds to pay off one debt at a time and right now….the sleeping one has taken priority.

Whatever works.

  I am learning that our family is very different to most families. We don’t operate in the same ways that other families do and probably never will. Our methods may sometimes seem a little odd to the uninitiated outsider, but that’s ok

I have written before that I literally tossed out all the parenting books that we owned because none of them were covering the issues that we dealt with and as a result, we have had to figure out different ways to communicate with and discipline our children more effectively.

Ways that really work for us.

Years ago, I can remember sitting down watching Super Nanny and being so impressed by her techniques and I often teared up when the family became closer to each other and way more functioning as a unit by the end of the 60 minute episode.  So as soon as the TV was switched off each week, I became determined to implement her strategies starting the very next day. I would make a family rules list on big sheets of paper like she did and stick them on the walls, I prepared a “naughty mat” and I decided that this was finally going to be “our” week.

But what I didn’t know back then was that her methods are tried and tested on neuro-typical children NOT children like mine with an ASD. (In fact Super Nanny did do an episode with a family who had a 3 year old autistic son, and Jo Frost actually admitted that it was out of her league and called in back-up from Dr Lynn Koegel who is a renowned specialist in that field.) Ha! What most of us would give for a one-on-one specialist to work with…but I digress…

The most noteable method of Super Nanny’s that we tried, was the sleep technique. As my regular readers will know, Harley has always been a shocking sleeper and way back in the pre-diagnosis days when we just thought Harley was a difficult child, we had exhausted every method we’d heard of or read about. So when I saw the success on screen that she was having getting children to stay in their rooms and falling asleep – I truly believed that we would have him sleeping through in no time.

HA!

I couldn’t have been MORE wrong!

 Jo’s method worked brilliantly for our daughter and I know many, many other families who have also found it to be fantastic, but all of those kiddos are neuro-typical and (to my knowledge) don’t have the added anxiety issues on top.

The idea is that every time your child comes out of their room looking for comfort, you walk them back the first time and say firmly….”It’s time for bed” and then every other time following that you avoid eye contact and stay silent but you keep walking them back in until they get the message that they need to stay in there.

Well, I remember one night we counted:- 103 times we walked that child back in there! And that’s NO exaggeration. This went on hour after hour, night after night, week after week, month after month until we finally gave up and slept in there with him until he fell asleep from sheer exhaustion.

But often -as soon as one of us would sneak out…..he would wake and it would start all over again.

Well, I knew this method it was going to take time, I was aware that it is not a quick fix solution and that all kids are different, but after about 9 weeks, we resigned ourselves to the fact that we were really really crappy parents with a child who would probably never sleep!  And the sleeping issues have continued ever since.

But here’s the good news…..he has had blocks of time-often a few months long where the sleep issues have disappeared and he has slept (reasonably well) for a few nights in a row, – they are few and far between but they have happened. And all of those times have been when he is at his calmest and when there is nothing going on in his life to causes the crippling anxiety that he suffers from.

Like our time recently in America. He slept brilliantly every.single.night. But…he knew exactly what was going to be happening EVERY minute of every day and he had no time constraints, no rushing and no stress.

He shared a double bed with his siblings and apart from safety issues – there weren’t a lot of “rules” to follow. He was as relaxed as I’ve ever seen him!

Which was really surprising since I had anticipated him being a nervous wreck being so out of routine!

However…..since we’ve returned home – the sleeping issues have become MAMMOTH!

We have had hysterics at bedtime, night wandering, screaming and tears every night at all hours of the morning. The whole house has been like the walking dead because we were so darn tired!

I tried moving his bed away from the outside wall in his bedroom, I bought him a brighter night light, I bought an iPod dock so he could listen to music to go to sleep and I put a new weighted blanket on his bed.

Nope. Didn’t work.

But 3 days ago, we took a step that I have wanted to take for years but Mr P has been against: We moved Harley’s bed into Lucas’ room.  BEST thing we ever did. (Well….so far at least!)

Both of them have been excited to go to bed,  they both fall asleep almost immediately and for 3 nights in a row now – Harley has slept 11 hours straight!!!!

He tells me that sometimes he wakes up in the night but looks over and sees his brother and feels safe so he goes back to sleep.

Awwwww….

~~~

I asked the question “Should I put my boy’s in the same bedroom” on WW’s Facebook page a while back and there were a lot of mixed opinions about this topic and a lot of pros and cons were presented to me, but I figured that I would never really know if it was going to work if I never tried it.

I’ve also had people ask me why I would do that to them when we are lucky enough to have enough rooms for the kids to all have their own, but this is simply not about that.

This is about doing “whatever works”.

And right now…It does. I’m aware that it may not work forever, but while it IS working….I’m going to accept it with open arms! Our family isn’t ‘typical’ by ANY stretch of the imagination.

So….Whatever works people….. Whatever works.

Wordless Wednesday 21/9/11…You don’t have to be lying down to sleep!

Too good to be true.

Some days I wonder what I did to be blessed with a daughter like mine. She often seems as though she is too good to be true. Like she’s almost not even real.

But she is VERY real, I promise you.

So real that today, her vulnerability was practically tangible.

I walked into the bathroom this morning to hurry her along and found her in a sobbing mess on the floor. She looked up when she noticed me standing there and quickly tried to pull herself together saying: “Oh hi Mum, I’m almost ready” and tried to surreptitiously wipe away her tears. But it didn’t work, I knew that she was a gonner. There was simply no coming back for her.

I pulled her into a hug and then the damn completely burst. She gave up trying to stifle the tears and let them flow freely. She sobbed that she was so tired and that she didn’t know how she was going to get through the day.

I kept her home.

****

She has spent the last several months rehearsing for her school’s production of Annie the musical. Being involved in the play was optional but an opportunity that her and her friends jumped at immediately.

The kids have been working so hard at getting ready for opening night this Friday.

This week, the kids go to school from 8:30 – 2:30 and then rehearsals from 3-10pm.

That’s right: 10pm. Ella is only 11….no where near old enough to handle too many late nights AS WELL AS school work.

Or is she?

I left her sitting in my car this morning in the school car park while I walked Harley in to his class, and 2 of her closest friends came bounding up to me and asked where Ella was.

I explained that she was tired and having the day off school. They nodded knowingly but I noticed that neither of them had the same doe in the headlights look about them.

Sure they were tired, but they appeared to be coping reasonably ok.

Ella came to me after we arrived back home again and asked me why none of her friends are coping as badly as she is.

She couldn’t understand why she had fallen to bits when all her friends are managing to keep on pushing through despite their tiredness.

 “Why am I such a wreck when they’re not Mum?”

 UGH!

I didn’t have an immediate answer for her. I just smiled and squeezed her shoulder and told her to go back to bed for a rest. I knew that she’d eventually want an answer though.

I vowed to discover the reason while she slept.

(On a side note: we just found out that her Nanna kept her up until 11pm to watch a movie with her while we were away on the weekend because she required “company”.  Ella wanted to go to bed but “wasn’t allowed to”.

So poor Ella was already on the back foot before rehearsals even started!)

 The answer to her overload reaction question came to me as I pushed the vacuum cleaner over my rugs. I yawned and switched it off and walked over to the coffee machine to grab another heart starter and it dawned on me that she is probably just as exhausted as we are.

She is also woken up several times a night by Harley.

She lives with two autistic boys too. She shares the same house.

Having brothers on the spectrum with sleep and behavioural issues is definitely going to contribute to her coping mechanisms being severely compromised.

THIS is why Ella is so much more affected than her peers.

She lives with the exact same stress that we do day in day out, of course it’s going to take it’s toll.

Yet……

She is still completely selfless.

Mr Patient is away for another few days and I have lost count of the times that Ella has asked me what I need help with.

She bathed and dressed Lucas in his pyjamas, helped Harley clean his teeth, stacked the dinner dishes in the dishwasher and helped me hang out a load of washing.

See what I mean?

Almost too good to be true!

Like she’s not even real!

And she’s now in bed fast asleep at only 7:30pm.

Sleep tight little princess xxx

Sleep is an enigma here.

 

If only he stayed like this all night *sigh*

Everybody knows that when you have a newborn baby in the house that you’re probably going to have minimal sleep for at least 6 weeks. Actually – scrap that….Most people I know would extend that to maybe 12 months or at least until the worst of the teething months are over.

But what about families like ours where 8 years later there are still no signs of your child ever sleeping through?

~~~

Yep, that’s right, we are still waiting for that to happen with our “newborn” eight-year-old.

Of course there have been days and even weeks where Harley has shown us that it is possible, but sadly, we keep reverting back to nights like last night.  He currently takes mood stabilising and anti-anxiety meds and has done for almost 2 years now and it works really well to help him fall asleep.

But that’s not the problem. Falling asleep and staying asleep are two entirely different things.

I could probably count the number of times on one hand that he has actually gone more than a week without waking us up in the early hours of the morning.  Usually between 2 and 5am he is up at least 10 times. And when he’s awake, he makes sure that EVERYBODY else in the house is also awake.  Harley’s room is at the opposite end of the house to ours and his brother and sister’s rooms are in the middle. Sometimes he will lay in bed crying or calling out (which wakes them up) but most times he walks quietly up to our room and stands beside our bed and calls out “Mum….Dad”..until one of us throws back the covers and marches him back to bed kicking and protesting wildly and loudly so they are woken up ANYWAY!

Rinse and repeat several times per night until you reach our point of utter exhaustion.

How very considerate of him….

Today I had downed 4 coffees, a Berocca multi-vitamin drink and a diet coke by 10 am just so that I could function well enough to survive Lucas’ early Intervention Group. And that’s not only incredibly unhealthy but pretty ridiculous and desperate measures to be taking.

This morning when I walked out to the kitchen to prepare breakfast – I was presented with 3 tired, irritable and sleep deprived kids and a husband who looked like death warmed up who had opted to go into the office later than usual just to catch another hour or so of much-needed sleep.

I have been to the paediatrician about this a few times now and each time he keeps handing me a prescription for Melatonin.

So why haven’t I filled it already?

Well – because it’s expensive for one and secondly because with Melatonin you can’t give it every single night because if you don’t alternate it and have days where you DON’T give it, the child builds up a resistance and it stops working.

It’s those in between days that scare me.

What are we going to do on those days?

At least now he is falling asleep. I shudder to think what he will be like on the days after a melatonin-free night.

I have thrown the question out there on Wonderfully Wired’s Facebook Page and many parents have written their personal experiences to me and I must say that it’s been very encouraging to read.

It help to know that there are several other families out there that have a child like ours and reaffirms that it’s nothing we have or haven’t done to make him like this.

It’s got nothing to do with us not establishing solid sleep routines when he was a baby (Thanks for nothing anonymous mothering helplines).  And it is not because we aren’t strict enough with him. (Thank you too well-intentioned mothers at playgroups).

And I know this because EVERY night at 5:30pm he eats his dinner.

At 6pm he has a bath or shower,

At 7pm he has his tablet and cleans his teeth and is in bed by 7:30pm for a story without fail. And it’s always been this way for as long as I can remember.

Is it just me …or does that look like a pretty solid routine?

And 99 nights out of 100 I stick to it.

From speaking with other mothers of ASD kiddos, most spectrum children have sleeping issues of one type or another. And I have only ever read and heard positives relating to Melatonin.

So tomorrow I am pulling out that dusty script and I am marching down to our local compounding chemist and purchasing what seems to be our very last glimmer of hope.

Fingers Crossed…..

Just five more minutes…..

It’s approaching midnight. I’m sitting up in bed waiting for sleep to hurry up and come to me. It is being elusive tonight so I’m trying to pass the time writing in my journal instead.
I can hear the clock ticking and can see Mr Patients’s chest rise and fall with every breath that he takes. I am jealous of his ability to succumb to the enticing call of sleep.

I am not usually one to suffer with insomnia, but at the moment, my tired eyes and weary body are fighting me with all of their might.

I think that subconsciously, I am just trying to delay the inevitable because in just 8 short hours, my wonderful Mum will be leaving to go back home again and Mr Patient leaves on another one of his interstate trips for several days.

The boys will have to re-adjust again.

Having 3 adults in the home alleviates a lot of pressure to achieve everything and the workload is shared almost evenly, but tomorrow it goes back to just one.

Just me.

NO, not ‘just’ me but me ‘alone’.

The child-minding,cooking,cleaning,organising stuff doesn’t bother me so much because it’s all a part of the parenting package. It’s more the emotional workload that I’d rather share than the physical one.

Tomorrow I have to wave goodbye to the awesome Grandma who plays board games with the kids so I can cook dinner in peace. And the Daddy who uses funny voices when he reads bedtime stories.

I’m farewelling the greatest sibling referee that ever lived and I have to tackle the after school emotional blowouts all be myself.

It’s funny because deep down, I KNOW that these things are all do-able and I will be ok. I KNOW that I am strong enough, but still…. I really don’t want tomorrow to come.

I’m like the child hiding under their bed covers early in the morning not wanting to get up and get ready for school. I’m not ready to go back to my life.

Just five more minutes pleeeeeeease?

It IS the same thing…..a Doctor told me (So it MUST be true…wink…wink)

I spent most of last night sitting up in bed cradling little Lucas who had very laboured breathing and was extremely miserable. HE managed to catch a bit of sleep but I only dozed a little bit here and there so have woken up in a zombie-like state today!

After dropping the older kids at school this morning, I drove him straight to the emergency department at the hospital because NONE of his asthma medications were easing his breathing or helping the coughing to subside.  They took us straight in to the paediatric unit and started a range of tests on him…Thankfully they ruled out pneumonia and told me that his lungs were clear enough for pleurisy not to be a possibility either.  So the verdict was severe asthma.

The nurse that took his stats asked him what his name was and how old he was and he looked at the wall before grunting “No thanks, I want to go home”  at her !

She looked at me and raised her eyebrows so I hastily explained that he has autistic disorder and wasn’t in the mood for chatting. She smiled and said “Ok, that explains a lot” and patted him on the head and left to move on to the next patient.

The Doctor came over next and asked Lucas some questions too but he still wasn’t in the mood for talking so I explained AGAIN that he has autistic disorder and the Doctor asked whether he was high or low functioning and if he was verbal or non-verbal.

I replied that his actual diagnosis is Aspergers Syndrome and went on to explain that I’m so tired of the blank looks that I get when I use that term , so I now find it easier to just use the term “autistic disorder”. Then I clarified that I supposed the answer to his question is “neither”.

He then said something that surprised me.

I just want to point out here that the following sentences are transcripts of what the Dr said to me….these are not necessarily MY opinion!…

So don’t shoot the messenger……Just sayin!

He said “You do realise that there is an extremely fine line between the terms aspergers and high functioning autism and that the medical profession disagree on what the actual definition means”.

And then followed with: ” The term ‘aspergers’ is generally given to a child who displays high functioning autistic traits. The point at which speech is acquired has been debated for years as a deciding factor in differentiating between the two terms. It’s basically the same thing but parents deal better with the word ‘Aspergers’ than they do with the umbrella term ‘autistic disorder’. A lot of parents of Aspergian children are in denial that this is even a spectrum disorder. You are in the minority by admitting it.

Really?

I was a bit thrown by this because ALL of the parents of aspergian children that I know personally KNOW that it is an autism spectrum disorder.

NONE of my friends are in denial?

And seriously……the fact that the same child could essentially be diagnosed with PDD-NOS, Aspergers, High functioning autism or Autistic Disorder depending on which practice, which paediatrician and which country you live in…..is ridiculous!

Bring on the DSM-V I say…..I’m over it!

Anywho…..five and a half hours later Lucas was discharged with a fistful of prescriptions, an intensive asthma plan, and a letter for my incompetent  misguided GP stating that there was NO fluid of concern on his lungs and that it WAS severe asthma (as his concerned mother pointed out).

A very eventful day with a good ending.

And now I’m off to grab some Fiona time before Mr Patient arrives home from Melbourne tonight so it’s Cheerio from me

Pay it forward…..

I hated today.

Well, not all of it, but a huge part of it.

The day started badly with the kids fighting before I even made breakfast and this ALWAYS starts Harley off in the wrong frame of mind.

I seriously can’t believe the things that my kids sometimes choose to fight over. Does it really matter who gets the blue bowl? (That was a rhetorical question…….of COURSE it matters!)

Also, Mr Patient had a late start for work and was still here all morning. He told the kids he was going to take them to school as a surprise!

Sounds nice right? Like a real treat for them?

Well, yeah, if your kids are typical and can cope with change…

Usually, he’s well and truly gone before the rest of us are even awake so just having him still here threw them from the get-go let alone the new transport plans!

**

I did however have a day to myself because it was one of Lucas’ pre-school days, and I got a lot of things done.

**

This afternoon when I picked Harley up from school, I only had to look at him and I knew what was coming.  He was absolutely riddled with anxiety…..The telltale vacant scared eyes, the drooping head, the downturned lips, the deliberate shoulder hunch and his toes kicking the ground forcefully.

Once we were away from his teacher and most of the other kids, he threw himself down on the grassed area out the front and rocked and cried and moaned hugging his knees to his chest.

My baby was broken and I still have no idea what happened.

I sat down beside him on the grass and put my hand his leg to let him know that I was there.  I knew that I couldn’t talk to him.

He wasn’t present anyway.I felt so helpless and useless.

It was almost like he was in a mixed state of flight AND fright if that’s even possible!

After sitting next to him for a while watching the tears gradually lessen and his contorted frown ease, I convinced him to come over to the car with me.

He only got 3 steps closer before collapsing to the ground again in a blob of tears so I picked up my 21 kilo child and carried him instead.

It took me several attempts to leave because every time I would do up his seatbelt, he would quickly undo it and climb out of the car and run away and it took me almost half an hour to finally leave the school today.

Afterwards, I was so drained, so emotionally exhausted and so frustrated that I got home and actually shut down myself.  I settled Harley on the sofa with his teddy and a DVD then locked myself in my bedroom and cried for nearly an hour.

I HATED not being able to get through to my child. I felt like a failure and completely fragile!

THIS is the part of autism that I really really hate. I can’t stand seeing him robbed of the basic ability to function and communicate. It sucks.

Homework was left undone, dinner was full of more tears and getting him to bed tonight was a nightmare!

He’s only been in his room for a few minutes when he walked out and said to me “Mummy, my brain is going too fast and my eyes won’t close”.

Ugh!

But then…..tonight as I was cleaning up and doing a last minute check in bags that I’ve packed everything I’ll need for tomorrow, I noticed that there was a new message flashing on my mobile phone.

It was from another mother at the kids school. We don’t have kids in the same grades but we have become great friends and her lovely 3 kids are all typical and thriving. We have nothing in common as she’s still in the baby stage but we get on fantastically!

Her message was this:    

Fi, you’re a lovely mum, I watched you this afternoon with Harley.

You were so calm, I’d flip out not knowing what to do if that were my child.

Well done, love *Julie xx

And instantly my spirits were lifted.

I’ll make a point of telling Julie tomorrow what an amazing gift she gave me tonight by sending that. Because of her little gesture, I am now able to face tomorrow with a renewed energy and a heart full of thankfulness and joy.

So pay it forward people……. If you see a Mum struggling, tell her how wonderful you think she is.

You never know….might be instrumental in enabling her to keep on putting one foot in front of the other!

* Not her real name…..

Alright, fasten your seatbelts : I'm going out on a limb!

Right. 

I’m stepping out onto a very risky limb here, but it’s something that’s been playing on my mind quite a lot lately, and I really feel the need to write this down.

I really hope I don’t scare you all off and you come back after this…..?

Anyone who has been reading this blog for a while will have already have picked up that there are two main themes running throughout my life.

1. I’m a God believing Christian.

2. Autism. It’s all around me, and it’s such a part of my everyday life that it’s sometimes all consuming. So it’s stand to reason that often these 2 major parts of my life are bound to meet and cross over at some point.

And they do exactly that every.single.day!

Now…..before you click away from here – I’ll first point out that the sole purpose of my blog is a personal journal and learning space that I use as therapy and to help me to work through my own life experiences living with autistic children.

It’s not and never will be intended to be used as a preaching platform.   Whilst I don’t hide behind my beliefs – I have another blog that I use specifically for my “Christian stuff”.

This is my “autism blog” (for lack of a better description) and what I’m writing about next, is all about what I’ve learned and discovered since my boys were first diagnosed with autism. I have learnt a LOT about myself and my own personal beliefs along this journey too.

***

There is a group of well-meaning Christians that have the views and attitude that AUTISM MUST BE HEALED!

And you know what?…… I’ll let you in on a little secret……I was once one of them.

(Shock , horror, gasp!)

Yes. I took Harley to a number of healing ministries and prayer groups to get him “healed of autism”. I desperately wanted him to be like “everyone else”.

I believed what people told me that he was “afflicted” and “broken” and “in need of deliverance”.

Frankly….I’m now disgusted in myself that I was so narrow minded and naive!

Yes, I do believe that God CAN heal autism…..but I am no longer subscribing to that school of thought. I now see that trying to remove autism from a person is like trying to remove freckles.

They are part of what makes that person unique, and special and “who they really are”. To remove autism, you are essentially removing the very essence of what makes them “them”.

I no longer believe autism to be a sickness, a disease, a defect or a design fault.

It’s just “different”.  Not wrong. Different.

God doesn’t need to heal my boys of autism, *I* need to learn how to be their mother and cherish them for who they are and accept that autism is part of WHO THEY ARE!

Don’t get me wrong though……if I could snap my fingers and only remove the parts that make their lives so.darn.hard….I would.

But it’s just not that simple.

Because to remove autism….you would also be removing their character, personality, adorable quirks and nuances that make them unique and wonderful.

You all know that autism is not a learnt behaviour. It is intricate wiring, programming and a marvellous design that is so darn special so why would I want to take that away?

As soon as I shifted my focus onto celebrating their uniqueness and individuality and stopped focusing on all the “woe-is-me-my-life-is-so-darn-hard” rubbish, I was then able to move on to a much better place of peace, contentment , and developed a much deeper and compassionate love for them than I had ever thought was possible!

Today, I remembered a post that I wrote not long after I first started blogging called “What-if?” and after re-reading it, I realised that God was already preparing me for changing my way of thinking even way back then.

Here it is……

What if…….. one morning, I was to wake up and find my children had been completely “cured” of autism?

What if……..all the special little idiosyncrasies that defined them disappeared as well?

What if……..they were suddenly able to start and continue meaningful conversations with people?

What if……..they realised that they could read my facial expressions?

What if……..they were now able to self regulate and no longer had the urge to stim?

What if……..school work suddenly became manageable and they could understand it easily?

What if………I never had to draw cartoons on a whiteboard again?

What if……..a trip to the shops was as simple as in – pay – leave?

What if……..you could go to any noisy place without earphones and a quick escape plan?

What if……..a crowded cinema with bright lights wasn’t something you needed to be tentative about?

What if……I was able to throw away all the sensory toys that are used to calm or stimulate my child?

What if……..they were able to control themselves in difficult situations and deal with their emotions without becoming overwhelmed?

I’m not sure that if that was offered to me , I’d take it…………..

You see…….

I love that my children are special.

I love that they are unique.

I love that they are quirky.

I love that they are kind, compassionate and gentle beings,

And I love that they are individuals.

To take autism away, you’d also take away the essential parts of them that make them who they are.

They were perfectly formed by a perfect God.

They are a blessing and a joy.

They are just the way they are meant to be and I am just the
mother they need.

***

So….is anyone brave enough to comment or have I crossed too many lines?  LOL

How much longer?

My little boy has his bag packed,
His clothes are all laid out,
He cannot wait til school goes back,
It’s ALL we hear about!
.
He’s busting for this break to end,
He asks us EVERY day,
“How long until I see my friends, 
So I can go and play?”.
.
“Just three more sleeps” is what I said,
This evening when he asked,
“You’ll have to wait now GO TO BED,
and dream of your new class”
.
“But Mum!, I can’t sleep – it’s much too hard,
My brain just won’t slow down,
I’m thinking about school and playing in the yard,
With my bey blades and sharing them around”
.
So I turned to my boy and I started to say:
“I know you’re excited son,
But you’ve got to wait until this Monday,
So….try to sleep…Before you know it….it will come .

……………….

We went and met his new teacher today.
All good so far.
We have our fingers, toes and everything else crossed that it stays that way !
I pray that this excitement of Harley’s carries through the hard, anxious and sad times that may come.

While they were sleeping…..

I had one of those “AHA” moments this week.

I’ll set the scene by explaining that here at Mum’s -she still lives in the large family home that I spent my teenage years living in.

It has 4 bedrooms which means that Ella gets her own room, I get my own and the boys share another room.

Only it doesn’t really work out that way…..

You see, BOTH of the boys have sleeping “issues” that range from sleep walking , night terrors and difference of opinion on whether there should be a night-light or not!

So the best solution was to separate them.

We did this by putting Harley’s bed in my room with me and leaving Lucas in the other one.

Sounds good right?

Well, yeah…..if you like to lay awake listening to snuffles, sleep talking, sleep -groaning and the tossing and turning of a little boy who can never get comfortable!

This is one instance where I consider being completely deaf in one ear an advantage!

I can put my hearing ear onto the pillow and sleep in total silence!

But this is the start of my complete turnaround in perception.

This week, I was given the book Choosing to see which was written by Mary Beth Chapman who is the wife of a well-known American Christian artist: Steven Curtis Chapman.

It is a mother’s story of loss, pain and adversity following the untimely and tragic death of her youngest of 6 children Maria who was only 5 years old.

The accident occurred in their own driveway when her 17-year-old son didn’t see his sister run out to greet him and he ran her over and fatally wounded her so Mary Beth is dealing with a double whammy of emotional heartache.

The book was one that I couldn’t put down. It shook me and made me realise just how precious life really is.

Mary Beth wrote chapter after chapter describing her grief and the pleas she would make with God to give her just one more day or to be able to hear her daughter’s sweet voice once again.

She watched the balloons being released in Maria’s memory and wished that she too could float up to the heavens with them and escape the dreadful pain she was experiencing every day.

What really grabbed me was the countless times that she would describe Maria and use phrases such as “her sweaty, stinky body”, her “sticky maple syrupy kisses” and “mischievous smile” as she ran ,climbed and jumped from place to place.

She described the daughter who loved to swim in the pool completely naked except for her goggles and the child who loved to jump on the trampoline (also naked) and the child who was almost always dressed in a fairy costume or Tinkerbell outfit wherever they went.

I cried when I read this as I have lost count of the times that I have told my own children off for stripping down (in our own house) and snapped at them to “take that stupid costume off and go put some proper clothes on”

I would have a fit at them if they refused to wear the outfit that I chose out ( I know…..I should pick my battles right?)  and I’d go mental at them if their hands were anything close to sticky and as for the sweaty bodies……eeeww!  I would yell at them to go and hop in the bath THIS INSTANT!

All in case my precious furniture might get dirty!

And here is this gorgeous mother missing all the little things that defined her precious daughter.

What she would give for just one more day with Maria.

That night, I slept with my good ear up, not on the pillow as it usually is.

I wanted to hear EVERY murmur.

Every sniffle , and every soft moan.

I got up a few times and crept into Ella and Lucas’ rooms and just sat on the end of their beds thanking God for them and kissed their little foreheads.

I came back to my room and climbed into Harley’s bed with him and snuggled in …….until he woke up and looked at me groggily and announced “Get out!”

But I didn’t care. At least he was alive and talking to me.

I really am SO blessed. I mustn’t forget again.

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

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

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

***

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

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

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

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

Today, I only have good things to write.

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

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

It’s the only way for me to be.

***

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

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

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

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

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

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

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

Solution……keep Harley home from school.

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

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

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

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

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

**

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

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

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

Ugh!

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

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

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

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

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

WOAH – that’s REAL progress right there!

And my noisy boys……?

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

Shhh my little one close your eyes

The kids have been in bed for a couple of hours now and I just went into check on them like I always do.

 

google image

 

Lucas is notoriously noisy at bedtime.

He talks to himself, he sings little songs out loud and generally winds himself down verbally.

This isn’t a problem at home where he has his own room and it’s not near Harley’s but here at Mum’s where they share a room, it’s no good at all for Harley.

He surprised me tonight by asking to go to my bed and begging to make Lucas be quiet so he could go to sleep.

It’s surprising because Harley is generally the child that we have struggled with sleep issues for 7 years straight.

He is the one who comes out dozens of times a night. He is the one who has night terrors and the child who simply will . not . go . to . sleep.

Or stay asleep.

Often he’s in our room at all hours of the night unable to settle himself.

But tonight, he is exhausted. Probably a mixture of sickness, tiredness and too many days of being out of routine.

As I started out saying: I went in and sat on the edge of the bed and watched Harley sleep for a while.

With every rise and fall of his little chest as he breathed, I could almost reach out and touch the peace myself.

It was almost tangible.

Every night I pray with him. I as God to give him sweet dreams, to give him rest , peace and to revive him for the next day.

It occurred to me that these children – who are ironically some of the worst sleepers that exist – are the children that desperately NEED sleep so that they can get a break from their ever racing, constantly thinking, analysing and obsessive thinking.

And as I watched him sleep – I decided that I needed to write about it.

And so this was born:

 

I walk into your room at night,

I see your eyelids flutter,

Your resting face is a delight,

My heart just melts like butter

~

When you’re asleep you are at peace,

Your mind has quit it’s racing,

You lie so still, so calm, released,

There are NO trials for facing

~

I’m pleased to know you can escape,

The rushing of your thoughts,

The constant playing of the tape,

of worries of all sorts.

~

I wish that when you’re on the go,

Your brain would just slow down,

But now my child, just slumber so,

Just rest , Shhhh, not a sound.

Here's a perfectly good reason to drink coffee…..

Because it smiled at me!

Yes, I have fallen off the wagon so to speak.

I have given in to the vice that I should still be avoiding……I tell myself that I will try quitting again.

But not until my kids are older…….Or when I get more sleep…… Or when I have less to do……..Or when I go back to work…..etc etc etc you get the picture.

Summer is on it’s way and I often can’t stand to drink hot drinks then. I may be more successful then.

But for now it’s definitely not the right time.

Yes, I managed to go almost a month without it , but when you have a child that doesn’t sleep, it’d difficult to stay awake during the day without it.

Harley was in our room 5 times last night.

Needless to say : he wasn’t very popular with either of us.

We had a big day yesterday, I think we made too many changes to Harley’s  routine and paid the price that night.

Better days are coming…..

Celebrities, autism and humour.

If you enter the words “celebrity” and “autism” and “images” into a search engine- you will be greeted with happy family snaps of famous people living with autistic children all smiling for the camera portraying their perfect little worlds.

Take for example ⬇

Holly Robinson and her eldest son RJ who has autism

AND ⬇

John Travolta and Kelly Preston and their son Jett

DON’T FORGET ⬇

Toni Braxton with her autistic youngest son Diezel

AND YOU’VE HAD TO BE LIVING UNDER A ROCK

TO NOT KNOW ABOUT ⬇

Jenny McCarthy and her autistic son Evan

IN AUSTRALIA WE HAVE FOOTBALLER #1 ⬇

Matt Rogers with his model wife Chloe Maxwell and their autistic son Max

AND FOOTBALLER #2 ⬇

Luke Priddis with his son with autism called Cooper

All of this paints SUCH a pretty picture of families coping really well with the hand that they were dealt. And yes, I know that these are all posed shots and may have taken hours or even days to get the perfect shot but I can’t help wondering where the REAL photos of autism are.

You know…..the ones that could have (and some have) been taken here in MY autie house!

LIKE THIS ⬇

AND THIS ⬇

AND WE HAVE HAD A LOT

OF THESE  MOMENTS ⬇

IS ANYONE CATCHING MY DRIFT?

WHAT ABOUT THIS? ⬇

CAN ANYONE RELATE?

OR THIS? ⬇

I KNOW I’VE BEEN THERE!

HOW ABOUT,

THIS ⬇

AND DEFINITELY⬇

I’M TIRED OF DEALING WITH ⬇

AND ⬇

DON’T YOU JUST LOVE THIS!

AND ⬇

AND MY PERSONAL FAVOURITE ⬇

IT ALL LEADS TO ⬇

THEN ULTIMATELY ⬇

AND DELIVERED ME STRAIGHT BACK

INTO THE SAFE ARMS OF ⬇

I’M JUST SAYING…………………..

Sleep tight little boy

Last night, Harley had a terrible sleep.

He went to bed at 7:30 but came out every ten minutes crying and refusing to go back to bed.

By 11pm, we finally gave in and Mr Patient went and slept in Harley’s bed and he came into our bed with me for the rest of the night. He still was very restless and woke up a lot during the night to check that I was still there.

I didn’t care about our bedtime rules.  I just wanted sleep so I just put up with it.

I have the prescription for Melatonin from his paediatrician in my purse, but he’s been sleeping ok lately so I haven’t had to resort to it just yet.

He often goes in cycles though. He is a great sleeper for a couple of months then back to being a shocker again.

I have had a niggling concern for most of today that we might have the same issues again tonight.  Especially due  to the fact that Mr Patient is away , that always seems to upset him a lot.

As I was tucking him in to his bed tonight, we had a very unusual conversation. It went like this:

Harley: ” Mum, can you take off your shirt?”

Me: (shocked)” Um……No!”

Harley: “Pleeease!” (puppy dog eyes)

Me: “That’s a strange request mate…Can I ask why?”

Harley:” So I can put it on Bo” (teddy).

Me: ” Huh? Why do you want to put it on Bo?”

Harley: “Because the shirt smells like you and I can cuddle Bo and it feels like I’m cuddling you and then I can sleep better”

**I go into the bathroom and remove my shirt and wrap a towel around myself and wipe the happy tear off my cheek before it trickles down and gives me away.**

Me: (handing him my shirt and helping him to put it on his teddy) “I love you mate, you are very special”

Harley: “Yeah, I know. You always tell me”

Me: “Goodnight Darling, sleep tight.

Harley: (closing his eyes). “I will mum,thankyou.”

(calling out as I leave the room ) “Make sure you get a new shirt on so you don’t get cold Mummy”.

***  Oh my goodness- did my child just display empathy??? ***

Sleep tight precious

Mid year Marvels

Well, my lovely children let me sleep in until 10:15 this morning *gasp*.

While I’m grateful to not be woken by a sharp slap to the face, I am SO far behind the 8 ball today, I feel like I am hours behind schedule (whatever THAT means)!

But never mind…….the ironing will still be there this afternoon, as will the vacuuming, mopping and bed making

I announced to the children that today was a “do whatever you like, stay at home day” and it was met with delighted cheers and clapping and happy jumping on the spot. So I think that was the right decision!

Currently, I have one watching TV, one playing Thomas engines in his room ( well, more like arranging engines into colour groups) and one reading a book so I grabbed the opportunity to catch up on reading my friends blogs (and updating mine!)

As my good friend Livian over at “Our Crazy Life” pointed out to me, it seems that when one of us in ASD parents land have a bad day (or week) it seems that a whole lot of us also do.

I wondered about that and my theory is that it’s the middle of the year – we’ve reached the halfway point in schooling, the emotions and stress of the first half of the year are catching up as we prepare for the 2nd half of the year and wonder what’s in store for our families.

And also as we pump ourselves up and self motivate with the “come – on, you can do it!” monologues that we all know SO well.

I know personally that I have been a lot more stressed than I realised as I looked down at the fingernails that I had done recently, and discovered that I had unknowingly chewed off the acrylic nails and then bitten my own nails underneath right down to the cuticles.

Hmmmmm, not good. I spent last night attaching new false nails to cover my sins!

For me, these end of term 2 July holidays have always been about allowing my kids to “wind down” and regroup for terms 3 and 4 and whatever the rest of the year has in store for them.

It’s also an important time for me to relax and sit back and revel in the progress and achievements that the kids have made so far.

And I forced myself to actually think about and focus on the “good” and “positive” advances thus far.

I’m calling it : TEN MID -YEAR  REASONS TO CELEBRATE

1. The remarkable effects of removing gluten and dairy from the children’s diets, and the new found ability for Harley to verbalise his feelings even in the heart of meltdowns
2. Harley FINALLY being moved into the class that he should have been in from the start even though it took a LOT of work for this to eventuate!
3. The massive change in Harley’s attitude to learning, and to school in general since the class move. And also the peace and contentment that is SO evident in him now
4. Harley’s new teacher being caring, and actually wanting to help him, and having a compassionate heart towards children with ASDs
5. The new friendship that has formed with Ella and her new BFF *Emma
6. Finally getting a health professional to actually listen to and believe me and help me to start the process to getting Ella diagnosed
7. Ella’s breakthrough in getting her emotions OUT and not bottling them all up until she implodes!
8. The fact that 70% of the time, I can actually understand what Lucas is actually saying to me
9. Lucas finally being accepted into an early intervention program
10. Getting all 3 children to eat new foods and try new things without gagging!

So , when I sit back and look at the list, I can clearly see that even though there have been some REALLY tough times of late – I need to make myself remember the small steps forward that we have made.