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.