Oh Yea of Dulcet Tones

I thought I was going to have one of THOSE moments with Louis tonight. You know, when your kid gazes at you and says something heartfelt and profound. Well, actually I don't know, but I have read about them.

Indeed, I read of one just a night or so ago. A woman wrote of how her autistic son would cry whenever she sang to him. Finally, he told her it was "too beautiful" for him. I cried (bit of a theme, this crying business huh).

Anyhoo, flash forward to tonight. I sat by the tub as my son submerged various objects under the bubbles. I watched the water trickle down his beautiful, soft, smooth skin and I was moved to sing. After belting out a rousing rendition of "Knees up Mother Brown", I noticed Louis wailing and sobbing in the water...(I get distracted by how good I sound with bathroom acoustics).

He begged me to stop singing. He ALWAYS begs me to stop singing. I am a crappish singer but certainly not totally shit....for the record.

Anyway, I gathered his fragrant, soapy body to mine and whispered into his shell-like ear, "tell me Louis, tell me darling, why can't Mummy sing?" As he pushed himself away from me and got distracted, I redirected his focus back with "Darling, is Mummy's singing too beautiful for you?". Louis stopped paddling and looked up at me with his eyes like the sea. He seemed so THERE, so focussed on me. My heart stopped and I thought...."oh my God, this is IT".

Louis paused and then proclaimed seriously, "Not beautiful Mummy, you sing is very bad. Very, very bad and not good for Louis"

He is lucky I didn't hold him under!!!!

And his name is....

First off, I am giving myself the shits referring to Louis as L. His name is Louis. I honestly don't think that his safety is in jeopardy by typing his name. There....exhale.

Anyhoo....

I have a doozy of a headache tonight. Been shedding a few tears for Christchurch. For a beautiful city and all her people. Which leads me to think of a friend slowly reaching the end of a long and difficult illness. Then of course....all sadness leads back to Henry. So a few tears.

Louis is having a lot of nightmares. Pretty much every night. He was crying tonight before sleep. He said "my bed scares me. It wakes me up". From further deciphering I understand that he is scared of having more nightmares.

I don't know what else to do. We have talked about it. I have done social stories. He knows that when he yells for us, we come. But I understand. I remember being terrified of sleep too. Of course, I used to torture myself with horror films. Louis' nightmares are more along the lines of "roosters wetting the letterbox". Fucking roosters.

I will contact the homoeopath again. These remedies often help ease Louis' anxiety for a while. Still trying to get my head around the idea of Louis having pharmaceutical medication. I will try everything else first but will not let his anxiety get out of hand.

Cheers

Quite so.

I have mentioned before how my son speaks in a BBC English toffy nosed accent. I quite like this, given that I can sound like pure westie trash at times.

Additionally, he has impecable manners. He always says his pleases and thank yous. He always interjects with "excuse me" if he has something to say.

However, I find it odd when my son speaks to me as if I am a visiting church official.

Me - "L, you are such a lovely boy" (I am hopelessly in love with this child and tell him all the time.

L - (Gazes at me calmly and then nods) "Thank you very much, Mother"

Me - ?

Coming...ready or not!

What a little patootie.

We had a lovely day today. A visit to Nanna and Grandpa. We played many games of "hiding and seek". L tells you where to hide and insists that you make a squeaking noise too.

It is quite funny because he hides by simply shutting his eyes or by putting a pillow over his head. When he is "found", he is very quick to declare "it is L R!!!" (his full name).

Because he was squeaking under the pillow (as per his rules) my mother said "Oh maybe there is a mouse in the room". L whipped off the pillow and said "actually it is L. R". Phew, lucky...thanks for setting us straight buddy!

Sweet little chicken.

My beautiful son

is altogether very suspicious of your intentions.

Valentines Day

Valentines Day.....

Fuck me...does anyone over the age of 15 really buy into this shit?

I for one, am not going to buy fancy undies and buy hubby a power drill wrapped in a red ribbon because some poor Saint has been sodomised by advertising execs in order to earn another fistful of dollars.

I am trying to remember if there has ever been a time when Valentines Day registered on my radar.

Maybe as a teenager. When the twin torments of self obsession and desperation were worn like cheap perfume.

We would waft around school, feigning scorn and mocking Jilly Bigtits as she carried her fluffy white bear entombed in a plastic cylinder, with the ubiquitous rose pasted on top.

Really though, deep inside us all, we harboured secret fantasies of red envelopes, bouquets of flowers and pimply declarations of lust and adoration.

Thank fuck all that shit is over.

Happy V-day Big D. Nice one.

Assessment results

Well the assessment came and went. Friday was the big day.

Long story short.....L is autistic!! Wow huh! Is everyone shocked?!?

After four hours of interviews, assessments and an IQ test, L walks away retaining his diagnosis of ASD. He scored an average/above average IQ score. He also has a secondary anxiety disorder.

All things we knew, but now we get a piece of paper that proves it.

The clinical psych was quite good actually. He was really gentle with L and because he was the one who assessed L two years ago, he was able to see where progress has been made and where it has not.

He is recommending that L does not go into a mainstream classroom without significant support. Unfortunately, without an intellectual disability his access to support is very limited. He suggested that L would do best in a classroom with other "high functioning and Asperger kids with similar intellectual abilities". He believes that L will not cope in mainstream classroom due to sensory issues and anxiety. L also measured as functioning at a 2.5 year old in self help skills. So if anyone knows of the existence of such a magical classroom, please fill me in!

Anyway, I have pushed it all down this weekend. Can't make any phone calls until Monday. Been doing a puzzle to keep it in the moment. Very engrossing and obsessive.

Please don't love me!!!

This is a weird recurrent meltdown L has.

It happened again on the way home from preschool. I was watching him in the rearview mirror rubbing his dummies on his face as we drove home. He looked so sweet and drained from the day that I couldn't help myself and said,"I love you, L". Don't get me wrong, I say this all the time,but I am learning when L is fragile it is best not to go there.

But I went there and the meltdown ensued.

L "Nooooooooo! Don't love me! You don't love me!!"

Me "I do love you L" (stupid I know, but I hate hearing him say I don't love him...even though he means it as an order rather than a declarative statement".

L "Nooooooo. I love you!!! Don't love me mummy!"

M .........

L "I don't want you to love me! Don't love me!! "
cue major sobbing and hysterical gasping for breath.

Yikes...... talk about commitment issues! Heads up to all future girlfriends....work out all your codependency issues before hooking up with the L-meister!

What to do, what to do?

I have Tuesdays all to myself with L. I really want to make the most of this time and make it something special. Sure, on weekends we do family stuff and on Mondays he sees his beloved Nanna and of course preschool takes up three days.....but I want to savour some precious time together before he hits school full time next year.

But I am stumped. L is adamant that he does not want to go anywhere. He has been pleading with me to let him stay at home tomorrow.

Of course that is what I will do....for the most part. I insist on him leaving the house at some point. I am hoping a trip to the lake to feed the ducks is acceptable. I have to admit though to fantasies of the two of us swanning around galleries, museums, ferries and beaches.

Once again however, I am left wondering if I am trying to force my idea of fun onto L, or am I legitimately trying to broaden his oh so narrow horizons.

Maybe like most things in this life, it is a little from column A and a little from column B.

I know I have to factor in his anxiety and sensory issues....but I don't want him to avoid the world because he feels it is too much. I guess I will start small and push slowly. This seems to be the approach that works best with L. No deep end pushing here....no sirree bob. Slowly the world will stop being too much and become familiar and safe, just like our lounge room. Here's hoping anyhow.

Cheers

I believe in nexterday

Guess what L calls tomorrow?

"Nexterday". Maybe he means it as "next today" but he says it like yesterday.

I love his little neologisms.

So Preschool update. I was told by the teacher today that she thinks that L must be misdiagnosed. She doesn't believe his is autistic because he can "focus and process information and keep eye contact". She believes he is having absence seizures and is having neurological difficulties from this.

It always blows me away when people just wipe away multiple assessments, years of therapy and ongoing adjustments with the old "he has good eye contact" chestnut.

I didn't feel that I need to correct her or convince her. I am just thankful that L is doing well in preschool to such an extent that he fits in pretty much seamlessly.

The so-called absence seizures though are simply L shutting down to process. He does this quite a lot. Usually they occur when he is getting tired, is overwhelmed or is trying to process or retrieve information. He can always be called out of them and they are not seizure activity.

Anyhoo...I was parent helper today and had to giggle at a couple of very typical L moments. The kids were being guided in a game, whereby one child is under a sheet and the others have to guess who it is by the sound of their voice. The teacher asked L who he thought it was and he said proudly "a person!"

The other giggle was when L left the classroom for outside play and as soon as he left the door he took off running. Now it is bloody hot here...pretty much 40 degree C weather and humid too. So running was a strange option, especially for my gross motor challenged lad. I grabbed his hand and said "slow down L, it is a bit hot today for running". He replied in a panicked voice "run outside, not inside" which he repeated a few times. Poor bugger has taken this no running inside rule to mean that he has to run madly around the yard when he is outside...no walking allowed!

The wink

I got that wink today. That wink that good looking confident young men in their late teens/early twenties give to women on the dark side of 30. He was spruiking for a charity in a shopping centre. I told him that all my money goes to autism charities and if he would like to contribute I could help him out.

He chuckled and shook his head in a "you dear crazy old bird" way and then wished me a "delightful rest of the day". Then it happened. The wink. The wink that is mean't to make me feel all gooey and grateful that such a young and good looking specimen would give me the time of day.

I used to eat men like you for breakfast kid. Keep your sexy winks for your pubescent girlfriend who probably is waxing all kinds of painful bits to keep your attention. I would rather have a cup of coffee and some quality alone time with a book thanks all the same.

Oi vey

There are tough days like today. When the meltdowns are neverending. When every transition is a fight. Where I want to go back to bed by 10 am.

L was so hopelessly inflexible and desperate for control today. It made for a very difficult day. He wanted to direct where I sat, said, ate....everything. I won't comply because it makes things just so much worse. It is like he manipulates for the control and then the black hole of need just gets bigger and he needs to control more and more.

Anyway, I am tired and sad that I saw so many tears today. Please let him regain all this lost ground when preschool starts back on Wednesday.

Don't touch me

L has sensory difficulties as I have talked about previously. I believe that they are getting worse as the holidays are going on. His ability to emotionally regulate is very much worse than it was in the beginning of the holidays.

I wonder if the lack of structure that causes so much anxiety and dysregulation also affects his sensory integration.

As I posted recently, his sense of pain and touch is very skewed at the moment. Although he can't feel strong pain, he is totally unable to be touched lightly without much distress.

We had a family lunch today. His younger cousin was there. L enjoys his company, within strict boundaries of course, but today was unable to cope with him at all. It seems that the more energy someone exudes, the more painful L finds their presence. He flinched away from the baby too when it was moving around. A few times he cried and yelled about not wanting to be touched. I think there is more to it than just concern about their unpredictable movements and the possibility of being touched.

Happily, he was fine with initiating touch with others today and snuggled and tickled his grandfather. Lovely to watch.

All in all, rigidity is excessive, emotional regulation skills have regressed and sensory integration is skewed.

Nevermind. Only three more sleeps until preschool starts and the slow regaining of skills and sense of control begins.

Best kid though....did I mention that?

Whammo

Was making the bed around L's flying body this afternoon. It has been blistering hot, so took advantage and got all three bedrooms stripped down and washed. Anyway, during a flying leap, L's foot smashed straight into the side of my face.

No big deal. Was an accident...but it DID hurt. I pinned him to stop him flying around and told him to stop. He started crying. I told him it was okay but Mummy was hurt and wanted him to stay still for a second. Cryng escalated.

Mummy gets excited and her heart swells as she believes that she is witnessing a truly empathetic moment.

I gather him to me and stroke his brow and tell him "it's okay L, it's okay".
Louis gasped through his sobs.....

"but I really want to kick your face again"

The little punk was crying because I stopped his fun!!!

No pain no gain.

Ever had a blister from a tight shoe that has rubbed and popped until it is just red raw flesh?

Well imagine what I good mother I felt when I took L's shoes off today and ALL his toes were in this state. For some reason, shoes that fit last week don't this week.

L does not feel pain like us mere humans do. He acknowledged that his toes were red but said "Nah" when I asked him if they hurt. It is so weird. He was walking funny, but was not able to register the pain on an emotional level. Its like a disconnect between feeling pain and having an emotional reaction to it. Actually, now I think of it, there is a name for this. Hold tight while I google. Maybe alexithymia....maybe.

Anyhoo. It happens often with L. He has two dead front teeth from falling flat on his face on concrete. He gets the shock of the fall but not the actual pain. He had his jabs today too. Nothing. Not even a flinch as the needle went in. (Don't dare comment on autism and vaccination - you go your way and I will go mine).

Kinda funny that his parent's are pretty wimpy with pain. I am a martyr. Big D is the poster child for man flu victim.

Time to get to bed.

Pooee!

It has been nearly 3 months since I last had a cigarette.

People promised me that I would be bestowed with a heightened sense of smell.

It took three months but I concede that "they" were correct.

I can smell all sorts of things that were previously blocked from my olfactory nerves. And I have to say it...... My GOD people...you stink!

Jeez Louise there are some bad smells out there. I never realised how much HAIR smelt. I can smell the hair of the random unwashed slob walking next to me for fucks sake.

This is not a gift people!!

Anyway....

I was also promised boundless energy. So far this has not been experienced by yours truly. I am putting this promise in the same basket of all things dubious. It can cosy up to the old chestnut about exercise induced endorphins. I won't call you an out and out liar but I have a sneaking suspicion that you are just fucking with my head. I am not saying that you are bullshitting me for kicks, you may be doing this in an altruistic manner to get me to stop smoking and start looking after my body, but still......

I am starting to smell smoke and that can only mean that there may be pants on fire out there.

Have started "diet" and exercise. Few days in. Keep the edge of that seat warm and I will keep you posted of any change.

Howzat!

Playing cricket with a bunch of folks/friends today near the beach. L loved the repetitive movement of bowling, collecting the ball and bowling again.

I had to laugh though when he pointed to Big D and said "Daddy, you go there... (behind the stumps)...you be whippet keeper".

Dog of a game cricket.

Physical exercise does seem to regulate L emotionally. Shame it is so hard to get him to engage in it. He definitely gets more regulation from running type exercise, rather than swimming. Swimming, he tends to bob about a lot and ask to be spun around in his float rather than using his own body.

I have read accounts of other children on the spectrum that have benefited from physical exercise in this way.

Anyhoo....I am personally stuffed and am off to bed.

What is in a name?

Poor L. He had a roughish day today. Not much sleep, many nightmares and ended up with me in my bed. He is struggling with lack of routine. As much as I try to keep things structured, it doesn't really cut it and his anxiety is flaring as a result. Hence, he is in MAJOR control mode.

Today for example:

Me: Helping him into his car seat "In you get Sunshine Bob" (I am hopeless for pet names, even though he hates them- can't help myself)
L: "I am NOT Sunshine Bob, I am L... R...."
Me: "I was only joking L, I know your name is L... R..."
L: (Extremely upset now) YOU ARE NOT JOKING!!! YOU ARE MUMMY R..."

Can't fight the truth huh.

In the Night Garden

Last night I was mowing the front lawn by the light of the moon. Well, that may be a slight exaggeration but it was 8.30pm when I quit. We have an electric lawnmower and I was scared that I would mow over the electrical cord.



For all intents and purposes, it was quite a nice time to mow. The sun was going down, there was a slight breeze and no-one had to watch me sweat like a bison in heat.



I was mowing the lawn at night because L can't abide the noise of a mower. It especially distresses him when Big D or I am doing the lawn. He almost looks betrayed as he goes into meltdown.....like what are you people doing to me!!! I don't think twice about this anymore but given the looks I caught from people marching their way around the block last night on their evening constitutional, I realised it may seem odd to others.


But writing this, I get the last laugh. I just saw the OCD dude from across the road spark up his whipper snipper and it is 8.14pm. I may have started a whole new trend here. Night gardening. Very adventurous out here in the suburbs.

dum diddly dum

I had a lovely lot of moments with L today. We had a lovely giggly time in the upstairs bedroom taking pictures. I was trying to get some shots of me and him lying together....he was more interested in taking pictures of his dummy from many different angles.

Yes a dummy. I know it might screw with his teeth. I know, I know, I know. I also know that his dummy was his first and remains his primary source of comfort when he is coming undone. He likes to suck on one, have two perched between his nose and his mouth and a couple in each hand, which he rubs over his cheeks and eyes. I introduce sensory alternatives all the time, but he hasn't found anything that gives him what dummys do. As he still suffers intense anxiety in everyday life, I figure we will wait until that situation improves before the klepto dummy fairy filches them.

I have to say though, I have limited him in its use for bed times, times of stress and transitions in the car (ie on the way to and home from the shops, but not at the shops). I would like to say that this is because he only needs it for comfort before and after but honestly I am embarrassed about how it looks for a 4-year-old to be sucking on a dummy.

You get tired you see. It takes energy to ignore the looks you get in public when your kid is licking tables or squinting at corners. I understand disclosure is important as it comes hand in hand with acceptance but I am leery of announcing L's diagnosis because someone thinks that his behaviour indicates that I am a bad parent, or basically they are just curious. I get tired when I feel eyes on me, judging my ability to parent. I don't have the energy most days to fire up the righteousness and fuck the world fire in my belly. Sometimes I just need to buy cat biscuits and a loaf of bread.

I am rambling. I am very tired. I miss Henry today. Love you buddy where ever you may be. x