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!