Have yourself a.......

And the festive day rolls around yet again.

I have not been here too much. A mixture of not enough time and not wanting to record the whys and wherefores of our lives. Suffice to say we have been having some difficulty with anxiety. End of year, change looming for big school, endless illnesses, a shit for brains paediatrician, and of course the old abiding Santa phobia.

This year I am asking Santa for a new paediatrician who is competent and knowledgable and respectful about autism. New skills and medication to help Louis enough to manage Kindergarten. An unwavering ability to look at the positives and bright side of life. Oh, boundless energy and enthusiasm would be gratefully accepted too.

You know,all bitching aside.... I am excited. Louis has happily accepted the tree in the house this year. We had a lovely time decorating it - and I only turned into the Tree Nazi when my mother tried to put the tinsel on in a vertical manner (WTF?!). We have avoided having any pictures, labels, wrapping paper, cards or decorations with Santa on them. God bless him, Louis really hates the man. At his preschool concert, I was moved to tears as I watched 12 little boys and girls with Santa hats and one skinny pale kid with reindeer antlers. Damn, he was the cutest thing ever.

Presents are going to be multiple in nature this year (only two last year). I believe that he will be able to cope and if he can't I will whisk a couple into a dark corner for later opening. I don't want to instil a materialistic bent to Louis' fairly zen nature but I really wanted to find something that would make his little face light up with excitement. Last year, when asked what he wanted for Christmas, he asked for "a circle". This year, he has asked for a "gold car". A matchbox car that costs about $2.00. It might be a failing within me, but I just can't bring myself to buy him a two buck car and call it quits. He would be happy, but I would feel like a tight arse jerk. Yeah, I know, my problem. Fuck it, add that one to the list I will bring to therapy when I can afford it.

The old man has three weeks off, which is very exciting. Three weeks of shared parenting, and in holiday season too! Husband is extremely good with Louis. They take long bus trips together, wander museums in quiet hours and float and splash in the pool for days on end.

Speaking of the pool, the weather for this time of year is ridiculous. It has not cracked 25 degrees. Usually we are heading for 40 degrees by Christmas. Unbelievable. I wish it would fine up. There is nothing more calming to Louis sensorily than a good hour or so in the pool.

And so my dear friends, I hope you all get through this festive season unscathed. If I could have you over for a dip in the pool with the kids, I would be delighted. Actually, I know one good reader who should be in the drink within a week. She is dreadfully lovely, but her son......divine!

Well this ramble has come to an end.

Adieu and Happy Christmas everyone xx

Oh dear

Absence seizures. Not sure how many a day.
His severe anxiety needs to be addressed with medications before we consider Epilim.
It isn't affecting his learning and the dangers of developing more severe seizures need to be weighed up against the medicine's side effects.

His anxiety is getting worse and not responding to cognitive therapy or homoeopathics.

I am gutted.

i want a cigarette.

A few Louisms

Just want to make a note of a few new Louisisms.

Daddy has been trying to teach Louis the basics of meditation, in our ongoing quest to ease his anxiety. Louis however, tries to breathe "fast", as fast is better than slow....obviously.

Anyway, he has made up a new game. He asks politely if you want to "play the meditation game" The game is you hold hands and as he says "the first one to let go wins". The kid is a sage.

I asked Louis yesterday if he knew where the "ladies" were...meaning the toilet. we were playing a game of restaurants...it had gotten awfully repetitive and I wanted to mix things up a little. He looked at me blankly and walked away. He came back with his arms around thin air and said "here are the ladies!".

I have mentioned it before, but it kills me.....when he has his hands full, he always triumphantly announces "I have full of hands!".

Neurologist tomorrow.

I am nervous.

He is oblivious.

I prefer it that way.

Cheers....xx

Hold my hand

things have been anxious and tense for the little fella lately. He has dealt beautifully with a birthday (5!!) and new floors in the house and integration days into kindergarten.

however, he has lost his ability to play at his friends house. his little friend had a few noisy tantrums and Louis just could not handle it. He has managed to allow the friend back into our house, on the proviso that he does not have a noisy tantrum, but he just cannot go back into his friends house.

He has started biting his fingers. Not his nails, just the flesh....until it bleeds. He is having trouble feeling when he needs to go to the toilet and so has had a few accidents at home and preschool. He has moved away from dinosaur obsession back to Thomas and Fireman Sam.....all indicators of significant stress and anxiety. Oh and massive trouble with noise aversion again.

Trying to keep things level and calm for him, without trying to wrap him in cotton wool. Thank goodness it is swimming weather, so he is getting lots of calming water propriocepton input. time to find him new chewing necklace. He is doing well with using ear plugs, when he needs to. He beautifully self regulates when we have people over, by going to his room and drawing the curtains, turns on the fan and sucks his dummys.

The kid is fucking champion.

Tonight, he reached for me as he fell asleep and whispered " hold my hand so I don't lose you"

I am never going to leave baby.

Farewell Charlie

I feel like all I write about is feeling crap. Then I figure, maybe I need to investigate new anti-depressants.

Then I remember that my dog died last week. I had to put him down, due to cancer. I have lost 4 animals in the last year. And of course, they were fast following on my darling Henry and my dear friend Cheryl.

I don't like it.

It makes me sad.

It compounds my hyper awareness of my mortality. Then I think of Louis and AARRRRRGGGH!!

I mean come on universe, God, higher power, planets, angels.....whatever. ENOUGH ALREADY!!!!

If there is some goddamn message I am supposed to be getting, fucking post me a letter. I am obviously not GETTING it!!!!!

And then I remember that I am not the centre of the universe. I am not being punished.

With life there is death.

With darkness there is light.

With pain there is joy.

With all the darkness, pain, and death my darling Charlie.....there was you.

Thank you.

Thank you for being a damn good boy. I love you sweetheart.

THE BOOK HAS LANDED

Oh My Goodness.

This is bound to be the MOST phenomenal book that you have ever read. I am sure that there is some random Aussie chick that wrote an essay. Can't miss that!
Buy it!!
No seriously!
Buy it!!
Did I mention it is nearly Christmas? Well it is, and you should start getting on top of your present buying.
A book is the best gift, me thinks.

Terribly proud and excited.
Mwah.

Weeeeeeeee

New Louis saying......" Great limping lizards!!"
Heeeeeeeee

Tie me kangaroo down sport.

Not sure why I picked that picture to show you all. I just like it. It is a very typical look for Louis. The rosy pink background and the kangaroo are just an added bonus really.

So....Louis is still cranking out the fevers. Could be virus, could be bacterial. No-one knows. However, it does mean that I am going to have to stay home tomorrow and look after him.

I have started doing some training, working with Louis' therapist, to work with autistic kids. Yeah yeah, I know, live it work it blah blah.

I am feeling terribly guilty that I can't go to 'work' tomorrow. Yes, i know the logic, Louis is sick, he comes first. But I am still battling with the feeling that I am letting people down. I know that this isn't the case, as I am just an extra at this point but still....

This is such an ingrained guilt feeling of mine. I blame my mum entirely..."hi Mum!". Actually, both my parents have an over the top work ethic. I am not putting down being responsible and having a strong sense of duty, but this is the woman that went to work when she had typhoid for God's sake! Yup, you heard me. Typhoid!

As I have gotten older and wiser, I have to be aware that I am actually not that important. The world can get on quite capably without me. I don't have to control everything. I have learned to accept that this awareness is actually sanity. Seeing things as they really are.

Frankly, at the moment, I feel as though I am lacking a bit of sanity. I have totally skewed perspective and am creeping down that old road of seeing every little problem as the end of the world.

I know that there are certain actions that I can take, to prevent this catastrophising and melodrama. Time to start walking the walk. Time to stop controlling and just concentrate on doing the next right thing.

This post has probably been a vague, indecipherable mess to most. Never mind, it helped me to put it down.

Just look at the pretty picture of the cute kid next to the kangaroo. It's all good.

Musings of the Museum

I feel like I have an awful lot to write about but I just don't want to think about it.

Louis had, what I presume was, a pretty big seizure last night. Just when I was ready to ring the neurologist and say no to the Epilim. You see, he has been doing so incredibly great. He has been stimmy, and happy and squeaky and bouncy and...dare I say it....pretty damn social!

But last night he was screaming and terribly upset. He said his leg wouldn't stop kicking and his head was all wobbly. He seems feverish and totally out of it today. He is exhausted and weak and can't be arsed talking.

Guess I will be filling that script in the morning after all.

Well, I don't want to end my first post back on a bad note. So here is a gooey bit.

Louis has finally made it to the museum. We have held back because of his sensory sensitivities. You see, the museum is an hour away, and we were worried that a meltdown would ensue at the door of the museum. When Louis has a meltdown, he needs to get back home ASAP. Safety behind closed doors you know.

Well, he absolutely LOVED the museum. He flapped and giggled over the dinosaurs. Hubby asked him whether he was number one or number two happy (emotion therapy - more on that later) and Louis said "I am 65 million years ago happy".

And he is!! We have been back every week since.

I am back

Oops. That was a whole month wasn't it. Shit.

I could come up with a whole bunch of reasons. But you already know what they are. I mean most of you live them right along with me. That's why I love ya.

I will write a catch up post this afternoon.

Stayed tuned for - seizure updates
- funny comments
- school decisions
- another animal down
- and so much more!!

Damn thrilling huh,

M

Raindrops and storms

My sweet kid is at school today. The kindy farm, a collection of poor benighted lambs and the odd shitstained calf, is coming to visit the preschool. Louis is not altogether happy about this. I left him and Nigel to work out their strategy. This is a happy new occurrance. Nigel seems to help Louis through some tough anxious moments, by being there when Mummy can't. So, Nigel is going to stay at preschool today and "watch Louis". Good old Nigel. According to Louis, Nigel will also give him the nod when it is appropriate to turn into a T-Rex and roar at the farm animals. Another exercise in keeping him safe apparently. Poor bloody animals.

I warned his teachers this morning to keep him back from the pen, just in case he starts roaring madly and frightening the little animals. They know my boy well, those teachers. One just looked at me and laughed and said "I don't think we need to worry about Louis coming too close to the animals". I guess, these are the people that hold him in a death grip to calm him down when the fireman comes to visit the preschool, as my son freaks out about the possibility of the siren being turned on.

On the way to preschool though, something lovely happened. Louis was telling me about his plans to be a T-Rex and I reminded him that he has scheduled times to be a dinosaur and the rest of the time he must be Louis (don't ask - I never thought I was have to comfort my son as he keens and wails because he can't "be a theropod").

So Louis was quiet for a second and said "I am a really good T-Rex". I said "And you are a fantastic Louis". Quiet again and he piped up "I like being Louis". Awwwww. How wonderful is that! and it gets better....he then asked "Do you like being, Mummy?". I nearly crashed into a tree at this point. I made some comment about liking myself when I am not a raging irritable bitch - PG version of course. But I am so thrilled about that kind of progress. To think about asking me that question indicates he is aware that I have thoughts and feelings. Well, I might be reaching a little high there. He didn't listen to my answer, as he was giggling and rocking side to side in his seat, while he fondled a fluffy dinosaur. This is often the way it is with Louis. He starts echoing the appropriate phrases and imitating questions, well before he actually understands the concepts, feeling and intentions behind them. But, it is a damn good start.

Another car drive moment occurred last weekend. The three of us were heading up the coast to visit my mother-in-law. It had been raining a lot that previous week and Louis was anxious as a result. It is weird. It is not as if he doesn't like rain, he just doesn't like the anticipation of rain. Anyway, hubs and I were fielding multiple, repetitive questions regarding the odds of future precipitation and throwing desperate looks at each other as we mentally calculated the length of the journey and how excruciating it will be if the same questions were asked for its entirety. I know, I know, that we should shut him down by finishing the subject and ignoring- and we often do - when he is in a repetitive question mode but it gets a bit hairy to do that in the car sometime. Anyway, all of a sudden Louis falls into a silent contemplation. His little face gazed out of the window for a good 20 minutes. Then he said "Mummy, does one raindrop make a storm?" What a great fucking question! So deep! So intriguing! So thoughtful! I told him it was a great question and said no it didn't.

Of course at this point Louis said "Mummy, does two raindrops make a storm?, Mummy does three raindrops make a storm? Mummy does four raindrops make a storm?" Oi vey.

Anyway, it was deep and philosophical and I think it should be embroidered on a pillow. ONE RAINDROP DOES NOT MAKE A STORM. Words to live by my friends.

Okay I will leave you with a funny one that occured between my husband and Louis. It was a couple of weekends ago and I was painting (remember? Keep up people! It looks fab by the way). Hubs was trying to rev Louis up to get him to leave the house with him and go to the park, so I could paint. Louis was, as usual, reticent to leave the house. Hubs excitedly said "Louis, we are going to have HEAPS of fun". Louis looked up with concerned eyes and replied "Only a little bit for me, please".

My kid rocks. No two ways about it.

Nigel Marven

See that dude?

He now lives in our house. I feed him. I have to buckle him into the car. I have to SLEEP with him.

He is Louis' imaginary friend.

A new development indeed in our wee household.

Now given the literal bent of autism, it may not surprise you that Louis' imaginary friend actually exists.

I introduce to you.....Nigel Marven - paleontologist. Well, he is in a shitload of dinosaur shows that Louis watches anyway.

I mentioned that Louis lives and breathes dinosaurs right? To the point of absolute saturation.

From the moment he wakes up to the moment he sleeps, all he talks about, cares about, scripts about are dinosaurs. He has a funny little stim he does with his fingers that he looks out of the corners of his eyes at, that apparently are "running velociraptors".

So anyway, Nigel has made a big impression in our household. Louis is often found mumbling away sotto voce to him. I am not privy to these conversations. Given that they are sure to involve scripting one of Nigel's docos, I certainly don't give a shit. In fact, I am pretty thankful that someone else has to listen to this stuff for a while.

However, there is a unforeseen problem. Nigel is driving a wedge between me and husband. If he aint cutting his grass, he is certainly firing up the mower. You see, Louis is insisting that Nigel sleep with me. Sure this may be platonic in a wee four-year-old's mind, but the night's are long my friend. How long am I supposed to resist the temptations of an aging British paleontologist?

Actually, I think you are quite safe hubs.

So Nige may be making a few appearances in this blog. He has been a great source of hilarity for me and husband already.

Talk sooner rather than later. Thanks for the love guys. Feeling it and feeling better xx.

Way to slippery mortal coil

So there was going to be a post about our trip to the mountains.

A cheerful departure from the grey fog of my mood.

But then I had to hold my dear, beautiful, faithful darling 15-year-old cat, as he was put to sleep.

And then I cried.

Will update if status changes. :(

Doldrumish

I have had a bit of a break from blogging. It is not as if life stopped throwing up blogworthy moments, I just have been feeling a bit adrift and I haven't been able to put it into words.

I know I have experienced these feeling before, but as each period of difficulty piles up on the ones before, it feels as if I am knocked around just that little more.

I may not even post this up.

I have ye olde chronic depression. Like in long term. Back from as long as I can remember. I have been on medication for it forever. I don't have many qualms about taking antidepressants because frankly without them I cannot function. I have done and do CBT techniques, meditation, writing etc etc. And yet I can still so easily be flattened by a rolling tsunami of mood swings, that appear out of nowhere.

I guess that is where I have been. Grabbing at the flotsam and holding my breath until I can get my head above water again.

I am not writing this post for sympathy. Please, that gives me the squinks. I just need to acknowledge it every now and then. Because I tend to pretend it isn't happening and I hide behind brittle humour while the core starts crumbling.

Consider it acknowledged. I have a post in the making about a funny little lad, who we took on a day trip to the mountains yesterday. Back soon then....buck up! It's not all so bad!

Intermission

I have lost my writing mojo. It will be back. If there is one thing I know for sure, nothing is permanent in this life. We shift and change. The most peace comes with rolling with life's own rhythm.
Right now I am painting the entire insides of the house. I am enjoying it. I am obsessional and this is a nice way of getting a result from obsession.
Still reading everyone else's blogs. Good work guys!! See you soon.

Patchwork Kitty

And here we are.
Yes, I have photo evidence.
May I proudly present........
My cat's undercarriage -



Her name is Frances. She is a princess. She has a problem. There is no shame in this. It is simply nerves and stress from being so beautiful, refined and glamorous amongst a household of dirty, profane commoners.

Frances is actually married to a strapping chap by the name of Sir Rupert Cossington Bathingswaite VC BSC and Bar. Rupert is often away on missions, to keep our country safe from invading forces and so Frances remains at my house. She often gazes out the window as she tends to her needlepoint, dreaming of those long romantic outings they took together in the two seater. Rupert, is a military man it is true. It is a hard life for a military wife. I often note a tear in her eye, as she gazes heavenward. It is not unusual for the odd biplane to dip its wings, as it soars overhead, in deference to her Lady Frances.

Lady Frances has a dear friend, Lady Amanda Soames. Lady Amanda got herself in a spot of trouble recently, with a wickedly handsome chap from Kenya. Lady Frances has stood firmly by her side throughout the scandal. We raised her this way, and are dreadfully proud.

Lady Frances' troubles with....ahem....'self Brazilian obsession and compulsion' started off innocently, as these things usually do. An impressionable beauty, with too much time on her hands. Handsome squire away on secret missions, flying the skies to protect hearth and home. And then mother introduces another into the fold. A human child. Oh yes. A bald squalling brat of little notable worth, who frankly took up too much of the human slave's time. The hairless squirt simply roared, farted and vomited incessantly. And yet, not once did the human let loose with a fistful of claws across its ever open noise-hole. Surely, this would have been the correct reaction to this unwelcome interloper. But never let it be said that the Lady Frances did not TRY. Oh try she did. She sat delicately by its side and drooled lovingly on its head. She joined in the incessant caterwauling - as one knows....misery does indeed love company. She took every opportunity to lie in its cot, pram and rocker...simply to warm it up.

And the gratitude for these esteemable actions.....NOTHING. WORSE THAN NOTHING....she was pushed aside. For THAT hairless, screeching amorphous blob.

And so it began. She only mean't to try it once. Just to see what this hairless business was all about. To satisfy her curiousity about the appeal of pink furless flesh.

And ladies and gentleman the obsession grew. The compulsion to rid herself and bare great swathes of skin is now uncontrollable. Lady Frances must wear full length sleeves and trousers at all times to cover the pink naked flesh. No more skimpy summer dresses for our Lady Frances.

There was a time that we wept. Oh yes, many a tear has fallen. But now? Goddammit, we just accept her in all her patchy glory. If she is addicted to perfecting the full body Brazilian, well so be it. We love her anyway!!

And for the record....Rupert hasn't complained once!!

Mish Mash

I can't hear; my ears are blocked. Louis was sick, ergo I am now sick. I have a blocked head.

Happily, Louis is much better. He is now a velociraptor. A velociraptor who has enormous coughing fits if he runs around too much.

I have nothing to say. Except little mutterings of self pity. So here are a few photos that Louis has taken, that I found on my camera. I know Lynn, totally ripped off post from here. Sue me and I will come around and sneeze on you :)





These two are old. Thank fuck. I hate Thomas and Spencer so much. That obsession ran for a little too long and was way too pervasive. I have that involuntary reaction to the theme song, whereby my bum eats a little bit of my pants.







That last one was my beautiful princess - Frances. She has a bunch of neuroses only rivalled in this household by myself. She actually pulls her hair out by her teeth. She has given herself a complete Brazillian. She has no hair on her forearms either. It's true. I will post some pictures tomorrow. Promise. You just hang in there kids. I know that there is little excitement in this world that compares to pictures of my cat's undercarriage.

Cheers, your welcome.

Can't even see Dawn's crack

Well it is 5am. Have done the folding of washing. Cleaned a bathroom. Emptied the dishwasher. About the scrub the floors. Anyone else get obsessed with cleaning when sleep deprivation is afoot?

Louis up and down all night. He is up right now. Well horizontal on the lounge but UP out of bed. As in, can't be up on his own. He is still feverish. Day Three now.

I am tired. I think that is why I keep moving too. You feel it more when you stop.

Okay, going to clean.
Bye

Fever all through the night

Poor wee chook is sick. Fevers and a barking seal cough. Does anything tug at the heartstrings more than your sick offspring? He has the rosy cheeks that come with fever and the bleary watery eyes. Every time I ask him how he is (why do I do this? Isn't it obvious?) he says "good". Despite the fact he has not moved off the lounge for two days, except to go to bed.

Hubs is home today. Taking a day off due to having had no sleep for a couple of nights. Hacking seals are not soporific. This allowed me to go and search for dinosaur DVDs for the patient. There simply are not enough dinosaur documentaries around. I got the giggles though, embarrassing when one is alone, when I realise that I bypass the children's section altogether and head directly for the section next to the porn, labelled "Special Interest". Aint that the truth!!

And yes, I know about "The Land Before Time" and Diego's and Dora's efforts at including dinosaurs in the scream-fests they call episodes. Louis almost had conniptions over their incorrect naming of prehistoric beasts. When the dinosaurs started talking he simply removed himself from the room in disgust.

Luckily, I found a documentary that he has not seen. Thank you Discovery Channel.

I am off to mop a fevered brow. Bye

A friend indeed

I just left Louis' bedroom after putting him to sleep. He just had his second meltdown of the day about not wanting to go to prechool.
It is impossible for him to explain why he doesn't want to go. I can't really suggest reasons, hoping to act as a catalyst for him to talk, because he just echos what I say.

I am pretty sure the problem is that his little playmate is away this week. This is the only kid that Louis plays with at preschool. He has been nominated as the "friend". I have written before about Louis' firm belief that he can only have one friend at a time.

The thing is, I think Louis being upset has nothing really to do with the actual kid, it is because his entire predictable preschool experience has been disrupted. Louis knew HOW to play with this friend. They have been solely each other's company at preschool since September last year. He NEVER sees this kid outside of school. He NEVER pines for this kid outside of school. He has loads of other kids outside of school that he has playdates with and he loves playing with them. I think that he does that compartmentalising thing. This kid for preschool, this kid for out of school etc etc.

Anyway, it is heartbreaking. I had an inkling that he may have a reaction, so I organised to be parent helper tomorrow. Hey hey!! Autism kid foresight....nice one. Last thing he asked before he sobbed himself to sleep was "could you carry me all day tomorrow?" cue heartbreak right here.
Oh baby, I will carry you every moment until you can walk on your own.

If anyone has any idea on how to help in this situation, I am open to suggestions.

Cheers

School hopefully.

Okey dokey....heads up I have some news.
I THINK I have found a school for Louis!
We had one of two interviews yesterday. It was with the principal of the whole school and the principal of the junior school and the head of Learning Support.
My husband stayed at work for this one. We figured we wouldn't give away the gene pool mystery this early. Ha! Nah, we decided to take along Louis' therapist for this one.

And let me tell you IT WAS BRILLIANT! I couldn't have scripted it better.

They are really on the ball, as far as knowing their autism stuff. They asked the right questions and seemed happy with our answers. Both principals and Learning Support teacher knew all about the quirks of autism. From what I hear they have quite a lot of autistic and other special needs kids in the mainstream classes. It is the only mainstream school I have come across, that have sent ALL their staff to autism specific training. How great is that? They totally understood what I meant, when I described Louis' shut downs. They got quite excited actually, because they have a boy in Year 8 that just disappears and stops hearing and seeing too.

But the best thing, Louis' therapist - a brilliant woman and great friend of mine - used to be the boss of the Learning Support leader. They did the whole OMG hug hug thing. I knew at that point, things were on my side.

Anyway, the Learning Support woman is going to see Louis at preschool next week. I guess the only person that can stuff things up at this point is him. As if that is going to happen, he is too adorable for words these days.

I warned them about his current dinosaur obsession and can only hope that he is a herbivore that day.

Cheers!

Happy Birthday to Me

It is my birthday today! I am 39 years old.

Louis said "happy birthday", with only a little prompting.

That was a pretty damn good present.

He does insist that I am 87 years old though. And that he is 31 years old.

Wanna see something cute?

And finally.....what I found when I went to hang out the washing:

Grumpy Old Troll

My cranky old bitch level is right up there tonight. I feel all prickly and frustrated. I really am the dream wife, you know?

Trying to keep it all in. Pushed down into that tight, seething ball in the pit of my guts.

We got back a little while ago from my brother's place. Unfortunately, Louis was less than pleasant in the social niceties stakes this afternoon. Feeling the way I do right now, I can't really blame him. Thing is, Louis probably tries a lot harder than I do to keep his equilibrium.

He is just having an off day. He has had five accidents of the liquid variety today. He just doesn't seem to have felt the urge - until too late. He was biting his fingers a lot, once we were at his cousin's house and was not able to speak for a while. He wanted to keep his tight beanie on his head for the majority of the visit too.

I organised some outside running around, to ease his stress, which worked well. My family are the greatest, but they do tend to LOOK at Louis a lot, mainly because they desperately want to ease his discomfort and are always watching him for signs of distress. So, outside running around was a pretty good relaxer for a while.

I started to wind things up and we all went back inside. Louis was quite short with his cousin, who wanted to play WITH him. There were a few instances of bellowing "NO, I DON'T WANT TO", "I DON'T WANT TO PLAY" and just plain old "I SAID NO!" Each time he was made to apologise quickly and we all moved on.

However, I was glad to get out of there tonight. Some days autism and social stuff, just aren't going to mix, no matter how we may try.

We drove home listening to a compilation CD of dinosaur songs. It was when my husband pointed out that swearing under my breath repeatedly when they sung about the 'mighty brontosaurus'*, that I realised ONCE AGAIN, that the apple doesn't fall far from the tree.

* It is NOT a brontosaurus. There is NO SUCH THING as a brontosaurus. It is an Apatosaurus.

Anyhoo, I am off. In every which way.

The Good Wife

Who tells men that little blonde frosted tips on their hair looks good? Just can't STAND that look!

And that brushed forward bieber looking do, that young teenage lads have. Shit on toast.

I guess this is part of getting old. Men under the age of 30 just look ridiculous to me. They seem to flounce around a lot more than men used to. As a woman, I appreciate the ability to spell correctly incredibly more sexy than the ability to ponce around the local shopping centre with faux-hawks.

So I have banned my husband from the local mall.

Ha ha ha!

He totally has no hair to mohawk, fauxhawk, foof or flounce. There are a few little baby elephant tufts up top and that is about it.

BUT he can spell.

And so we shall remain married.

So this train of thought came about because I was wondering if my Louis will ever give a crap about looks and style. I have spoken to mothers, who claim that their son's are extremely picky about what they wear. Seriously! They insist on certain styles of clothes, and choose clothes for how they LOOK. I am not talking about needing soft clothes, with no tags etc. I am talking aesthetics! At kindergarten age.

Louis rarely notices if he is dressed or not. He often toddles off out of the house with no shoes on. He gets in the bath with his clothes still on. If I didn't pull him up, I really don't know how long it would be until he noticed.

So, I was just wondering if anyone elses tizzy kids notice what they are wearing. To be honest, I am hoping that he never cares about this stuff. I would hate to have to start putting an effort into what I look like, for fear of embarrassing him!

I will leave you with this morning's Louis antics.

Louis was walking back from the park with Daddy and the dog. A man walked past them with another dog, which barked fiercely at our dog. Louis freaked. Daddy swung around trying to control our equally freaked out dog and inadvertently hit Louis in the head with his back pack. I had been watching from our house and shuffled down the road to meet them.

Louis was sniffling still when I picked him up. He said "Mummy, Daddy hit me in the head". I said "That is no good buddy, it was an accident though". Louis replied "No, he did it on purpose". I grinned and said to Daddy "Well, that was a crappy thing to do, wasn't it!". Daddy tried for a teaching moment "Louis, it was an accident. When you kicked that girl, when you were on the swing, that was an accident wasn't it?". Louis "No it was on purpose".

Nice one!

So anyway, we had a scheduled play date which we rocked up to with Louis wearing a bandage around his head and bandaids plastered in his hair (he insisted on this). Then he got to tell everyone that he looked the way he did because: "Daddy, hits me on the head - ON PURPOSE!!"

Poor Hubs. I am so not a united front. Nope, not for a minute.

Remember me??

Howza kids!

I am nearly back on board. Every Louis free moment has been devoted to essays, assignments and exams. Only one more to go, and I am FREE baby!!

For three weeks anyway.

Just going to give a quick recount of the EEG excitement. I am so proud of my laddio. He sat there like a freaking champ, while they stuck on all the leads and bandages. He lay in that bed for 24 hours and did not complain once. The techs and neurologists were amazed by his good behaviour.

You know, I would like to pretend that it has something to do with my parenting. But it doesn't. Louis is just one of those autistic kids that LOVE a good rule. When he is told what is going to happen, and then it happens, he is okay. It is when things happen unexpectedly that he falls apart. Also, he totally loses the power to speak or move when he is stressed. So he looks well behaved, when really he is going into shut down. NEAT huh!!!

Joking, it is pretty sad to watch, when you know what is going on. Luckily the neurologist has spent time with Louis before and knew to start making random statements about dinosaurs to relax him. Before long, Louis could talk again and was off on the endless dinosaur monologue that took up most of the next 24 hours.

So Louis was great. Handled the whole event with grace and style.

If anyone cares, I didn't sleep a fucking wink. I had a lovely fold out chair to sleep on. But one really shitty thing about the children's hospital, is all the sick children. Sick children are understandably pissed off. And pissed off sick kids can be damn loud! All night! Poor mites. But still, no sleep for me!!

End result of the 24 hour video EEG.......

SAME AS LAST TIME!!!!

bilateral epileptiform discharges happening often in both day and night. Not quite seizures but possibly precursors, maybe just a stangely wired autistic brain. No MRI (thank you!) and no medication at this point. All good, just need to keep an eye on him.

So that is that.

I will be back soon, blogging regularly again.

Before I go, this is a conversation I had with Louis this morning.

Louis: almost in tears "I wish I could be a super hero"
Me: "Like superman?"
Louis: "No! Like SuperLouis"
Me: "You can be SuperLouis today, if you like"
Louis: "No thank you"
Me: ??

Bridge over Troubled Water.

Louis just pulled me up to tell me this:

Louis: "Mummy, if I cross a bloody old bridge and fall in, there will be carnivores in the water and they will eat me. Then Daddy will sit in the back and you will have to drive HIM to preschool. Or maybe you could be eaten too and Daddy can FINALLY drive the car !!"

What am I supposed to get from this information?

I am bogarting the car?
Louis doesn't want to go to preschool anymore and would rather be eaten alive by meat eating dinosaurs?

How am I going to stop him saying "bloody old bridge". He got it off Dora. He misheard the grumpy old troll talking about his bridge and refers to any overpass as a "bloody old bridge".

Kindergarten is going to be fun,right. Hmmmm. Apparently today at preschool he kept announcing that dinosaurs "stink". Finally they cottoned on that he mean't "extinct".

Raise a glass to Big Daddy.

Howdy folks. I am back again. Maybe only sporadically for the next couple of weeks though. Big time assignments and exams coming up.

I wanted to make good my threat however, to review Big Daddy's book.

I read the book in two sittings. I was really impressed. You see, I own at least forty memoirs, biographies, compilations relating to autism. Yes, obsession is a hobby of mine.

Big Daddy has written the ONLY book that I have read, that has the perfect balance of gritty honesty, outrageous humour and touching poignancy. And outrageous humour....did I mention that?

I have read all of Big Daddy's posts. Each day, I feel as though I walk through the door of his house and sit down to enjoy the show. I have a deep respect for his wife, I simply adore his autistic son Griffin and I am proud of the young lady that Lil Sis is becoming. Big Daddy, seems kinda cool too. Bit obsessed with his own moobs, but hey different strokes and all.

I wouldn't know these people, if I passed them on the street; which is unlikely considering the oppositie hemispheric locations we reside in. And yet, I really care about them. I look forward to hearing what is going on in their lives. I relate to them and when I read Big Daddy's blog, I feel part of a community. Something bigger than myself. That is a nice place to be able to go, when my own life raising and child with autism gets difficult.

Big Daddy's book, is all this and more. I can only liken it to how my son felt when, after watching months worth of Thomas episodes, he discovered there was a feature length movie. Yeah, that good.

He has written a book, that like his blog, celebrates the hysterically funny and often surreal moments that living with a child with autism brings. I respect his ability to appeal to such a vast array of us residing in the autism community. He has been able to do this, without buying into any politics that surrounds autism. He has shown through example that acceptance and respect is a destination that we all should reach for, no matter which side of the autism debate we are on.
The essays interspersed throughout the book are written by some brilliant online writers of autism. It was delightful to recognise each 'voice' and be taken by the hand to experience a little more deeply their experiences with autism.

My husband is currently reading Big Daddy's book. I can hear him laughing out loud, from rooms away.


Oh and Lynn, you start the book with a comment about squirting your pants and bookend it with a statment comparing Italy to a sleazy slut. Girl, you are a legend!

You done good Big Daddy.

Sleepless saga post eleventy million

Things are pretty rough round these parts with the ongoing and worsening lack of sleep.

Most days, just getting through on survival mode. That is okay. Surviving is better than not surviving.

However, blogging not up there in priorities.

I will be back on scintillating form soon.

I HAVE finished Big Daddy's book. It is fucking fantastic. I will be reviewing it, as previously threatened. I just want to do it justice and so will wait until I have a night's sleep under my belt.

So a big hello from under the fog.

No more miles to go before I sleep.

Howdy folks

I have been MIA. Madness, stress, lack of sleep and madness. Did I mention madness?

I am taking the advice of a dear friend, who has suggested that I shut the fuck up and go to sleep. Apparently, the vaccuuming, essay reworking and shopping can wait. So that is what I have been trying to do.

I imagine I would feel a lot better, if I didn't feel so goddamn guilty.

Anyhoo.....

Big Daddy's book arrived today. Very excited. I will read it and review it. Right here, on this blog. Stay tuned.

Mother's Day

Happy Mother's Day to my mum.

My mum could probably get herself a diagnosis of PTSD, for what I put her through. I was a difficult child, a nightmare of a teenager and a loose cannon in early adulthood.

Mum was the one person, who stuck through it all and kept wanting to hear from me. She wasn't blind to my faults. Good grief, she let me have it on occasion. But despite it all, she loved me anyway.

She is just the kind of woman that I want to be. She doesn't suffer fools gladly. Unlike me though, she is polite and mostly keeps her feelings to herself. She loves all animals unreservedly. Seriously, the most hopeless fool for an animal I have ever known. I reckon I come in at a close second. She raised two fine boys and me.

She taught me how to be strong through example. She taught me how to knuckle down, and do what needs to be done. She gave me the love of books and poetry. She is still trying to teach me how to keep an organised house, but really it is probably time to let that one go to the keeper.

She loves my boy with all her heart. She is a champion for his rights. She has played endless hours of repetitive games. She has cheered him on every step of the way. She is so proud of him, for who he is. She worries about him, like she worried about me. But she needn't. Louis feels safe and comfortable and strong when he is around Nanna. The same gifts that she gave me.

Mum was with me when I gave birth to Henry. She held my hand through the painful labour. She cried as she held him, knowing he was going to die. She cried for the little life that was never going to be. She cried for the painful journey of loss she knew that I was just beginning.

Without the twin anchors of my mother and my husband, I wonder if I would have sailed off with that grief. Its pull was so strong.

Today, the pain is bittersweet. I am so grateful for the son I have. I ache for the son I will never truly know. It has been a day of reflection. Of joy and grief.
I love you Mum.

Thank you Mum, for the strength and unending love you give me.
Thank you Louis, my precious funny boy.
Thank you Henry, I will hold you in my dreams, sweet one.

Insanity is a hooting dinosaur

AAAAARRRRRRRGGGHHHHHH

That was me tearing my hair out in frustration.

I am seriously doubting my sanity at the moment. As I have spoken about before, I am studying to become a special education teacher. I specifically want to work with autistic kids. Because they rock.

Anyway, I have this 3000 word essay to do on law and ethics and it is totally doing my head in. I have never experienced anything like this in my whole schooling, tertiary or otherwise.

I simply cannot write this essay. I can't organise my thoughts. I can't stop them from jumping from subject to subject, long enough to get anything written down.

I have, I shit you not, a 20 cm pile of reference papers and journals. I have read them all.

I have simply no ability to slow my brain down long enough to get this fucking essay written.

I know this is going to sound pathetic, coming off the back of my hypochondria post but I think I know what the problem is........I HAVE ATTENTION DEFICIT DISORDER.
For some reason it has just struck me down at 38 years of age. Some of you may scoff and put it down to the ongoing sleep deprivation, stress and general depression, but my money is on adult onset ADD.

In other news, Louis spent the majority of the day making odd hooting noises instead of speaking. It was astonishingly annoying.

Late this afternoon, he filled me in that he is actually being a Stygimoloch. A herbivorous dinosaur from the cretaceous period, with a bony head. I am not kidding. He told me all these facts. This from a boy who cannot for the life of him, recall the letters of the alphabet.

I just looked up Stygimoloch on the net, to make sure I spelled it correctly. Apparently, they use their hard skulls to fight each other. I guess that explains why he was headbutting my thighs all day long.

This is Louis, hooting at the cat.

Nanna Nap

That is my head. That is my head sans makeup. Under flourescent lights. With nearly three months straight of sleepless nights under my belt. So be kind.

I wanted to show you how racoon-like my eyes have become. I know I have recently compared the bags under my eyes to the scrotums of meercats, but I have changed my mind. I definitely look like a racoon. If I had just brushed my teeth - a racoon with rabies.

Now, I have never been a fashion plate. Never had the kind of looks that stop people in the street. Frankly, I am grateful. I just don't like that kind of attention. However, people are now commenting on how tired I look - a lot.

"Wow, still not sleeping huh" and
"You look EXHAUSTED".

Well duh.

So, this brings me to my next point. Sleep deprivation not only ramps up the irritability and crazy in me. Apparently, it also turns me into a raving hypochondriac.

I had totally convinced myself, that I had either diabetes or Ross River virus. Both are pretty debilitating and I have been feeling much stress because, let's be honest, I don't have the time or energy to be sick. I have been anxious and stressed over my imagined prognosis. I have consulted Dr Google and caused myself great alarm.

Last night, I slept upstairs and husband was on Louis duty. I slept for 6 hours straight.

With six hours sleep comes renewed clarity.

It wasn't hypoglycaemic issues causing lethargy. Not getting sleep was causing me to fall asleep with my eyes open at 1pm each day.

This seems really bloody obvious now, on the back of a nights sleep. But, when you are living in a fog of exhaustion, it is like being depressed. It becomes your new normal and you can't remember what life was like before.

I have decided today, while Louis is at school, to NOT do any uni work. To do the bare minimum of housework and to have a nap. I am going to ignore the voice in my head that is jumping up and down, shouting about all the work that needs to be done. I need to function with a clearer head. I don't want my neuroses getting the better of me, the way they seem to when I don't get enough sleep.

So off to a nanna nap. Night all.

He says

Things Louis has said in the last 48 hours.

On seeing Daddy shave: "Mummy, Daddy has a dirty head and needs to comb it off".

On seeing a teenager with acne get off the bus: "It's head is spots? He has itchy fleas. It has spots like your feet, Daddy".

On seeing a woman on the bus with a pink flower in her hair: "It has a flower on his head". "It has a pink flower". "But my favourite colour is blue!!"

After seeing me yell out after stubbing my toe: "What?"
Me: "I hurt my toe, Louis"
Louis: "No you didn't, I am fine"

I don't love you

Louis has this 'thing' with relationships. I know huh! News Break: Autistic boy has trouble with relationships!!

For example, he says he can only have ONE friend. This was fine for a while, because frankly, I was simply thrilled that he wanted to have ANY friends. However, this became a problem when Louis decided it was time to change friends. And so, he did.

He marched up to this kid at his preschool and said "you not friend now, Jay is friend". And walked off.

Now, I do not expect to be able to explain to Louis how this affected the other child. He believes that everyone is 'happy' all the time. He doesn't understand point of view, or anything much about emotions.

As I was picturing the other boy to be devastated, I asked Louis to just keep his mouth shut about who was his friend. I mean, honestly, you would never know if you were Louis' 'friend'. He pretty much only parallel plays at this point, with some random body slamming thrown in.

Louis responded "No, I NEED to tell".

And that is all he would say on the subject. We have some work to do on this boy's social skills.

Anyway, all that pales in signficance as I describe how this affects ME.

Louis repeatedly tells me that he doesn't love me. That he can't love me, because he loves Nanna.

I only feel hurt when I am hormonal. I mean, I know it is part of the autism deal with him, but fucking hell.....I AM HIS MOTHER!!!!

Tonight, as I put him to bed (note I said ME, not bloody Nanna), I scooted close to him (not touching of course, as that is verboten). I whispered into the darkness "I love you, Louis".

He rolled away from me like I was on fire and shouted "NOOOOOOOOOOOOOOOOOOO, I love NANNNNNAAAAAA!". I got pissy and said "you know, you can love me too. Just a little bit. I AM your MOTHER". He rolled back and looked at me. His large, beautiful eyes gazed at mine and he whispered:

"I don't love you. I love Nanna. I want you to marry a big, red bus"

With that, he rolled away from me and drifted off to sleep.

Bedtime Buddies

Louis has a new bed mate. Well, until I go to bed and then I steal her back.
Shiva Thundermittens is such a lovely girl. She has made all of us, barring my older cats, very very happy.

Every night, she curls up with Louis and purrs like crazy until she drops off to sleep. I still have to lie with Louis until he is asleep.

I don't think I have written about that before. The deal is, I lie next to Louis pretending that I am asleep until he goes to sleep. Then I steathily crawl from the room.

Yeah, yeah, I know. Bad habits. We actually had him falling asleep on his own. But then Henry died and I needed to be with Louis until he fell asleep. So really, the autistic kid is the functional one in this scenario. So, my grief stricken need became his routine and now there is no getting around it.

It isn't so bad. I had visions once upon a time that we would share special moments about our day, maybe talk about our dreams or our fears. In reality, we talk a lot about windscreen wipers and orcas.

I do love to watch his body relax into sleep. Of course, then the crazy twitching and jerking starts. As I have written before, I am worried that these are seizures. I stay until he is more peaceful and then shuffle off the bed.

A lot of the time these days, I find myself falling asleep next to him and the kitten. I am still so sleep deprived. I always wake myself though, as I have much to do each evening, with study and housework and all that crap. I hate how groggy I feel as stumble back out to the loungeroom. And writing an essay under such conditions is less than ideal. But what can you do?

These last couple of years I have learned that I am stronger than I thought. I can endure more than I realised. I have learned that sometimes you just have to keep the forward momentum going and focus solely on doing the next right thing.

And so it is with the sleep deprivation at the moment.

But I reserve the right to bitch and complain at will.

Back to school

Preschool started up again yesterday.

I think both Louis and I heaved a huge sigh of relief when he entered the doors.

He really does get bored of me. Hard to believe I know. I am a scinitillating conversationalist, and yet strangely he doesn't want to engage in witty repartee.

All jokes aside, it was a relief to get some time to myself again. I desperately need to catch up on uni work, housework, and the ever elusive sleep.

Louis had a good day. He hasn't done any major regressing these holidays. I guess because they are only a couple of weeks in duration. There has been more babbling, shrieking, lack of receptive language stuff, but not like there was in the Christmas break.

However, on returning to school yesterday, he wet his pants FOUR times. That seems an awful lot for a boy who didn't wet his pants for the entirety of the holidays.

Judging by the fact that he realises he needs to go AFTER he has peed, I think he is not feeling the urge. This seems to be the case when he is sensorily overloaded. I think his brain is processing so much of a sensory nature, that it doesn't recognise the sensation of needing to pee.

I imagine that he will have a couple of more accidents this week, and then he should be back up to optimum processing speed and be able to recognise the urge sensation again.

In the meantime, Mummy has lots of washing to do. So I am off to scrub.

By the way, a big thanks to Lynn for giving me a sparkling new phrase for my repertoire...."chapped anus" anyone?

Easter

I think I caught the moment that the sugar hit the bloodstream.

Louis doesn't like that much in the way of food but a little chocolate is always a hit. I completely understand, except for the bit about 'a little'.

We had a lovely enough Easter break. We had to be very careful not to mention the blasted bunny. The Easter bunny has the same terror inducing properties as Santa apparently. I believe it is because he is terrified of strangers coming into his house while he sleeps. And fair enough I say!

I told him that I went and took the eggs from a house down the street. That we have an arrangement for them to collect our stash from the bunny and pass it on in the morning.

I am not ready to 'kill off' Santa or the bunny. I am still hoping one day that Louis will get over his fear and embrace the whole fantasy. He is tolerant of the idea of them, as long as they don't come anywhere near him.

Good times my friends, good times.

New baby

Please welcome the newest member of our family.

Ms Shiva Thundermittens.

Stimmy speak

I drive my husband nuts. Not in a good way either, most of the time.

I have a tendency to babble crap - ALL THE TIME. I ramble about numbers, bits of phrases, rhetorical questions.....that kind of thing. It is always repetitive. Over and over I say this stuff and I admit, I would beat me around the head with an iron bar, if it wasn't me doing it. It must be so incredibly annoying for my husband.

It is compulsive, but mostly mindless. I certainly don't do it in public - well not aloud anyway, so it is something that I can control. It is just something I do. I like it. It gathers it's own momentum.
It only occurred to me recently, that this is a verbal stim. Another little spectrummy trait that I have.

I announced triumphantly to my husband that I believe another piece of the genetic puzzle has fallen in place.

He didn't even look up from the paper.....I just heard a snort and "Gee, you reckon?".

Can't be that autistic...I could SMELL the sarcasm coming off that one!

Interview

This morning I had the privilege of interviewing Louis. I put absolutely no thought in the questions and recorded his answers verbatim.

Enjoy.


What makes you happy?
um ga ga

What makes you sad?
um big giant monsters

How beautiful is your mummy?
This beautiful (outstretched arms - awwww).

Who are your friends?
Crab and lobster and snapping shrimp run away.

What is your favourite colour?
Red, I mean blue.
Why?
Because I like a T-Rex

What is 2+3?
one

Tell me anything you want to.
Number one
Anything else?
Yes.
Well, what honey?
Number zero.
That's it?
More number zero


What food do you like to eat?
biscuit and chocolate cake.

How do you feel Obama has worked out as president?
Ga Ga.

Why do you wake up all the time at night?
I keep getting bad dreams

What about?
Gully Gully Woodstock

What do you like about preschool?
steering wheels

There you go. I hope that has cleared up a few pressing issues for y'all. I certainly realise that we need to do more work on receptive language before school starts!!

A cold front

As I have written before, Louis and hubs have a standing date for the local shopping centre on the weekends. They ride the escalators, check out the buses and trains from the perfectly positioned coffee shop and happily for me, they usually pick up a couple of grocery items that I have forgotten.

Anyway, this weekend hubs is in possession of a brand new mobile phone. He is in gadget heaven, as his last phone was a bit of a clunker. Louis is very impressed with this new phone. Hubs has let him ring me a couple of times from various places in the house. Interestingly, Louis imparts information not unlike a bull elephant seal in mating season. He is loud, grunty and repetitive. Ha! you didn't think I would leave things at meercat scrotums did you?

So off they go to the shopping centre. I am trying to lose myself in a law and ethics unit for Uni. The phone rings. Louis is yelling at me.

"YEP, THIS ONE IS COLD MUMMY", breathy grunt, the sound of running feet "YEP, SO IS THIS ONE", "THIS ONE IS COLD TOO MUMMY". Rinse and repeat.

Finally, hubs grabs the phone off him and explains that Louis is opening all the freezer doors in the supermarket to check that they are cold. Apparently he did not want me to miss out on this information.

None of this is particularly unusual for Louis. It is just him being happy. He tends to talk in caps lock when all is good with the world.

So, I was bemused when I heard the phone ring again just minutes later. It was hubs this time. He was giggling hysterically.

Louis had continued on with his opening all the doors and broadcasting updates to the coldness of each. Because Mummy wasn't available, he was addressing his comments at the top of his lungs to "HEY EVERYBODY". At one door though, Louis stopped. He opened it and stuck his head in three times. Each time, he would shut it with a perturbed look on his face. He quietly said "Daddy, this one is NOT cold".

Then he turned to face all the shoppers around him and yelled at the top of his voice "HEY EVERYONE!! THERE IS A FIRE IN HERE!!"

Jeez, I love this kid.

Rally car Mummy

Louis has just headed out with his Daddy, so Mummy can get some uni work done (hence blogging seems vitally important all of a sudden). He is quite excited, as they are going on a long bus ride and wait for it.......IT IS RAINING!!!!

Yes folks, the ultimate prize - BUS WINDSCREEN WIPERS are going to be in action. There has been lots of squealing and bouncing off the walls in anticipation.

However, he did calm down enough to somberly question me before his departure.

Louis "Mummy, are you going in the car?"

Me "I don't know honey, I might go get some fruit and stuff later"

Louis "Well, don't forget to concentrate Mummy"

Me ?

Louis "Don't forget to not hit any cars, or houses, or letter boxes, or dogs, or trees, or the sides, or the bushes, or the people"

Isn't that lovely. And they say our kids don't have concern for others.

By the way, I am an exemplary driver. I have never had a ticket, or hit anything for that matter. I reckon I am going to be a little bit more paranoid though next time I am in the car.....does the kid know something I don't?

Faulty wiring

So the epilepsy thing. The big E. Seizure Central. Nope....still can't connect to it.

Louis' autism diagnosis was NEVER a shock for me. I was at that Developmental Paediatrician's office looking for confirmation of what I was already sure of. Because Louis was born 2 months early, I was on the look out for developmental problems. Said problems reared their heads very early on, and Dr Google put all the pieces together.

But this seizure business. It has totally blindsided me. Not just that, but I am just feel extremely sceptical.

I had been concerned about the excessive jerking and twitching that Louis does as he falls asleep. He seriously falls asleep twitching like a dog dreaming of chasing rabbits. The neurologist believes these are benign myoclonic jerks.

Great! That is fantastic. That was my only concern about seizures. But then this sleep EEG that Louis had totally refutes that diagnosis. I was there watching the screen as Louis jerked around as he went to sleep. Every time he did, those lines went apeshit, spiking all over the shop. So the EEG comes back abnormal, with seizure activity but the neurologist holds strong with the benign myoclonic diagnosis. He is concerned that Louis is having atypical absence seizures in the day and some other kind of seizures at night. Like late in the night, as in waking him up.

My personal belief is that Louis is just "disappearing" to process information, and this appears to look like absence seizures. He may not answer his name, or respond to waving a hand in front of his eyes but he does seem to snap out of it with some help. I can't honestly say I have any idea of what is happening at night, except that I have not witnessed anything when Louis sleeps in my bed.

Anyway, we are going ahead with the 24 hour EEG in May. That should be a bundle of fucking laughs. One thing for sure, I will not be beginning with Epilim as the first port of call. This was tentatively suggested as an option, if Louis was not able to handle the 24 hr EEG. Not an idea that I am comfortable with....not when I have no idea when these supposed seizures are happening. How would I know that the medication was working?

Bottom line is.....if I had to put $100 on it, I would bet the lot that Louis is not having seizures. Although this is my gut feeling, we will of course follow the neurologists suggestions to confirm the initial EEG results.

Maybe someone will read this and shake their head at my blinding denial.
At this point, I am hoping it is simply a case of healthy skepticism.

It's all in the Name

Big Daddy wrote today about his son calling his mother "it". Louis does this ALL the time. If he really knows you well (like myself for instance) he will sometimes refer to you as "he", but generally people are known as "it".

For example - my husband will ask "Where's mummy?". Louis will reply "It is in the shower". Disclaimer - I am not always in the shower.....that is just where I go to cry (joking) ((a bit)).

Anyhoo....back to today. We had Louis' cousins over. One boy is 3 and the other just over 1. Lovely kids, but they are developing in a standard neurological manner, and frankly....we just don't know how to deal with that shit in our house. They did not wish to discuss the finer points of windscreen wipers and the youngest cried a lot. Totally did Louis' head in.

Anyway, what really fucked with Louis' world order, was the fact that the 1-year-old is now walking. I think Louis expected him to remain lumpish and inert for all time.
So, this little bundle heaved himself to his feet and toddled his way over to Louis, grinning happily. Louis shrieked as if bamboo slivers had been shoved under his fingernails. He leapt backwards into my legs and screamed "IT'S COMING AT ME, MUMMY!". This was repeated ad nauseum until I got him under control.

My point in all this, is not Louis' inability to understand people as gender specific entities, nor his obvious distaste for small humans, it is to recognise that there are some really decent lovely people around. My sister-in-law totally took this all in her stride, with no offense taken or drama created. She discreetly made every effort to keep her little one from Louis' personal space, for the entirety of the visit. She listened to Louis' monologues and made pertinent comments. She never touched him or asked him questions.

After a couple of hours, Louis was really struggling with the noise and was reaching the end of his ability to cope. He walked up quietly and said "Excuse me, I think you need to go home now" - (I love that he uses his manners, even when being rude). She thanked him for being honest with her. She told him that they were leaving in 15 minutes.....and she stuck to it.

People like my sister-in-law are diamonds. She treated Louis with respect, and used some common sense. She didn't go over the top, as some do, desperately trying to make Louis like her. She treated him like she treated her children, with respect and boundaries. Louis was in no way 'special' today and I appreciate that.

Okay, It is going to bed now. Time to take out my batteries and wind down.

I love my dogs

I love my dogs. They are such characters.

Charlie the Wonder Dog is the dark one. He is eight years old now. He is a mutt that is built like a brick shit house. He is the talkiest dog I have ever met. He loves to woo woo and ruff ruff in conversation. He was supposed to be an English Staffordshire Terrier. They lied. But, he is a great dog and I adore him.

Elsie Von Pudding Pants is only a year old. She is such a gorgeous girl. She is a rescue dog and has a terribly undershot jaw, so her bottom teeth are always exposed. She walks around with her tongue hanging out just a tad. I think she is a beauty queen. Others do not agree. She loves to play with the cats and has made Charlie a happy boy.

Anyway, they are a great source of comfort for me. Sometimes, I find it difficult to talk to humans. Don't get me wrong, my husband is a wonderful man. He is my best friend and my first source of comfort.

The dogs give me something else. They don't ask me questions. They don't try to understand me (sometimes that is an impossible task), they just curl up near me. They snuffle me with their doggy noses. They make me laugh with their stupid antics, they sit quietly pressed up against me when I am sad and they go away when I need to be alone. The best thing....no matter how shitty I feel about myself....they always let me know that they think I am a rock star. Total unconditional love wrapped in a soft furry package of snuffles.

Heaviness

I am struggling with the heaviness again. You know, the one where you wake up and feel the rock on your heart before you assemble your first coherent thought.

I get a bit panicky about this feeling. Having stuggled with depression for all of my life, I pick up the signs of an acute attack.

I have been pulling away from people again. I feel resentful and clumsy when faced with social situations. It is that much harder to look the part. I am tired ALL the time. My focus becomes narrower to exclude all but Louis, bercause I need all my energy to give him what he needs.

I ignore the other people who need me. I get numb to all feelings. I stare into the distance for prolonged periods of time.

I get what needs to be done and for every second of that time, I am counting down the seconds until I can legitimately be unconscious again.

I think about my beautiful boy Henry. I snap out of day dreams, where I am reliving his funeral over and over. I lose myself in fantasies, where he is playing in the yard with Louis and then I come back with a thud, my eyes automatically finding his urn.

These stone eggs on my heart will grow lighter. It takes time. But all in life passes. This I know.

Gah!

Epilepsy....that is the neurologist's verdict.

My gut feeling is no.

But my gut is tired, so tired of these specialists and diagnoses and people prodding my poor kid.

24hour inpatient EEG to be 100% sure or start on Epilim.

No decision needed yet. EEG will take six weeks to schedule.

Sticking my head in the sand for a couple of days.

Seizure later.

So we have an appointment with the Neurologist dude at the Children's Hospital tomorrow.

Last year, Louis had a sleep EEG because of suspicion of nocturnal seizures. It came back abnormal suggesting focal seizures.

Then at the next appointment, the neurologist said checked out Louis and said he looked all good and that the seizures were probably abnormal brain activity because he is autistic.

Okaaaaay.....

He left the appointment saying he hadn't seen Louis' sleep EEG. He would look at it and on the off chance there is something to be concerned about he would organise us another appointment.

Well, his secretary rang a couple of months ago saying he wants to see Louis again.

So, going in tomorrow with not much idea what is going on, or what to expect. I am not particularly concerned. Louis is doing really well and the jerking and twitching has not become worse. Sound like mother of the year don't I?!

I do want to ask him what the hell to do about Louis not sleeping. Seriously, he is sleeping about 4 hours a night at the moment. I am going insane. Hubby is taking the shift tonight, so that I can be lucid at the appointment tomorrow.

Let you know what happens.

The dreaded holidays

I need your help!!!!!

Hope those exclamation marks grabbed your attention.

Autumn holidays are coming up. As in four days time. God help me.

Louis has a dreadful time in the holidays. He usually regresses in toilet training, anxiety, agoraphobia, eating and sleep (which is crap to start with!). Pretty much the whole shebang. Lack of routine = very unhappy Louis.

To this end, I need to run these holidays with military style precision and structure.

I have our usual collection of things that Louis can handle outside of the house. Basically, I can schedule in an outing every day. Mornings are usually better, due to less sensory difficulties.

HOWEVER, I am really struggling for ideas of what to do at home with Louis. This is not just for him but for me. I don't want Louis to spend the entirety of his holiday at home, in front of the television or the computer. Louis can NOT play on his own. He never has, and I am beginning to wonder if he ever will. Given any choice, Louis will want to re-enact the same five seconds of television show with me, over and over. I need to have some new ideas of what to do with Louis at home in the holidays or I am going to go insane.

I need ideas fast so that I can do the visuals and put them up on the calendar and daily activity board. I didn't realise these holidays were creeping up so fast.

Any suggestions will be gratefully received.

Award Nominees

Now I am going to pass on this fabulous award to some extremely stylish peeps.

I am not passing it on to the blog writers but rather to the autistic child they write about....because they are the ones with the inimitable style. Not of course that you blogger people aren't stylish....ahem.

I am not sure if I should be messing with the protocol either. Oh dear...without further ado:

Toady from Planet Josh

Griffin from Big Daddy Autism

Audrey from Autism Army Mom

Child 1 from Jillsmo

Connor from The Connor Chronicles

Gaston and Remi from Lebelinoz

and not a child but the fabulous Lydia from Autistic Speaks

I believe the deal pick up the award and then write seven things we didn't already know about you (well in this case your kid). Then you pass it on to 10-15 other stylish bloggers.

I would love to do more, and very well may do so soon. However, right now I am running on a mere 45 minutes of sleep and I am wretched. Talk soon.

I am award-worthy

I have been given an award!!!! The fabulous Anna from Parallel Lives has deemed me award worthy. And how right she is! It is a award for being STYLISH. I am sure my reference to meer cat scrotums tipped me over.

Any, with no further ado, I will now tell you seven previously unknown facts about myself.

1. I was a total tomboy as a child and teenager and therefore have NO IDEA how to do make up and accessories and all that feminine stuff.

2. If it wasn't for my husband, my house would be overrun with cats and dogs.

3. I love watching cooking shows. I don't like cooking but I find it comforting to watch others cook.

4. I am a total martyr when I am sick.

5. I will flap and squeal when I get excited, if I don't catch myself (my son didn't have a chance!)

6. I am a reverse parking champion.

7. I am always reading at least 3 books at once.

There. I am sure that was enlightening for you.

I will go and rest on my laurels now, and decide who else in my blogosphere is worthy of this award. I believe I have to pass it on to 10 to 15 folks. Sheesh, do I know that many? Frankly, no.

Once again....thanks Anna!

Following on with a theme.

I was parent helper again at Louis' school. It was a lovely day as usual, but bloody exhausting. So, this will be a short one. Still have an essay to write tonight after I get his Highness to sleep.

Bit of background. The kid whose parent is the 'helper' for the day, is kind of the leader for the day. First in line, helps hands out the lunches etc. He, or she, also gets to pick what animal/thing they all pretend to be when they walk back into class after outside play. Most often it is a fairy for the girls and a train or some such shit for the boys.

So, Louis is standing at the front of the line. I am standing a fair way away packing up toys. I watch the teacher bend down and ask him what they are all going to be today. Then I see her ask him again, looking bemused. She then tells all the children.

I get to watch my son lead his entire class back into the classroom. And the whole lot of them, were being WINDSCREEN WIPERS!!!

I love it. I love him. I love that this happened on Autism Awareness Month Day One. YAY!

Salient detail

This afternoon, Louis and I were out the front. He was playing in a garden bed with his electric toothbrush (don't ask). I was cutting back the lavender.

A man ran past, out for a jog. A man wearing flourescent orange, lycra bike shorts and t-shirt. Worn, with flourescent orange shoes. I shit you not! I was literally open -mouthed stunned. To make matters worse, he was absolutely emaciated. He looked like a baggy-arsed, radioactive, carrot stick.

Louis: 'Wow, Mummy!"
Me: "No kidding honey" still staring at the man.
Louis: "He has a windscreen wiper on the back!"
Me: Huh! Wha? Turn to look at Louis.

Louis was looking at a station wagon driving up the street. It had a rear windscreen wiper. He simply did NOT see carrot man at all! Just goes to show how low down the totem pole humans are, no matter how colourful!

Sad day.

This is Black. Black is Louis' cat. He isn't black in colour. He is shades of grey and white. Louis wanted a black cat and so his cat is Black. Or as he pronounces it "Bwack".

We got Louis a cat because he was very attached to my old 16 year old moggy that was dying of cancer. It worked, as in Louis loves playing string games and running around with Black.

Black plays with the dogs. He is a real, wild cat. But oh so affectionate, loving and funny. Being a rescue cat, he wasn't taught how to cuddle and be sooky. He loved to have rubs but would nibble the tips of your fingers when it all got too much.

Black was hit by a car yesterday.

Today, I have to write a social story to explain to Louis that his cat is dead.

He was only 18 months old but so much a part of the family.

We love you little Black. Rest in peace.

Oh, by the way, the 16 year old cat with cancer......now 17 years old with cancer. Irony huh.

Activate Windscreen wipers.

A fabulous combination of two favourite obsessions. Windscreen wipers and the Octonauts.

He is also making one of his new noises.

Wow! In this picture I can really see how big his head is compared with his body. Seriously! Does that look weird to anyone else?

Had a pain in the butt day. Had to wait for hours and then shelled out a fortune for a new car battery to be delivered and installed. Anyway, must finish cooking dinner.

Louis is already eating his gourmet repast of three carrot circles, one plain piece of bread and a yoghurt. Yummo!