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The Voice for our children with Autism

When we become pregnant we wish for many things for our children, but most of all, we wish for “ten fingers and toes”.  We wish for healthy kids because once you have health, you can achieve anything, right?

Then, your child is born and as they develop, you know that something is not right.  Something is either missing, or off.  The endless outbursts, the non communication, the lack of social interaction.  Deep down this isn’t “normal”.

In our case, we went to the doctors for a full six years complaining of JC’s behaviour before he was diagnosed firstly with ADHD/ODD (which is Oppositional Defiancy Disorder).  His behaviour was, frankly, a nightmare to cope with.  He would have meltdowns on an epic proportion – toys flying across the room, kicking, biting, screaming, and they could last for hours.  We quickly learned that he was routine driven and if any part of the routine was broken a melt down would ensue.  As a family, we adapted quickly.  And with it came judgement.

“You are indulging him,” ‘helpful’ family members would say.

“If that was my child…” I heard many times in supermarkets, walking with the dogs, from family members.

As a society, we have expectations of how a child should behave.  If they don’t behave that way, we blame the parents.  After all, children model behaviour and it has to be the parents’ fault.  Families of children with what I call a non-visible disability, I have discovered, get most judgement from extended family the most.  We are treated almost as if the poor behaviour of our children reflects badly on them.  Needless to say, we adapted – family isolation set in.

Then, when JC was 11 we decided to take him for a reassessment as he was entering high school.  We had navigated primary school with some success, with me being the one parent the teachers never wanted to see.  I had already become masterful at pushing, pushing, pushing, making sure that JC’s needs were being met.  We wanted to make sure that as he entered high school, his ADHD hadn’t thrown up any learning difficulties we didn’t know about.  

We attended the Royal Children’s Hospital in Melbourne, where we now live.  It was a full day of assessment both for JC and for us, his parents.  Endless forms and questionnaires and interviews for us, and endless activities for him.

At the end of the day we were taken into a room whilst JC was given some video game time.

“Have you ever been told that JC has autism?” we were asked.

Dee and I looked at each other.  The word had never come up.

“It’s on the high functioning range,” the psychologist said, “but he is definitely on the spectrum.”

This came as a complete shock.  ADHD/ODD is what we thought he had, and we felt we could cope with that – the right diet, some behaviour modification – we could give him the chance at achieving anything, right?

But autism?  What does that mean?  Is it curable, can he grow out of it, is it lifelong?  JC began to show signs of extreme social and communication deficit from a young age.  His language was always monosyllabic.  He could speak, quite well, but he couldn’t engage in a conversation.  At the age of 11, we had never had what I would call a proper conversation.  Now we knew why.

“He is classic autism really,” the lady said.  “The aversion of the eyes, the walking on the toes – these are the physical tell tales.  Then there is his pedantic speech, his monosyllabic answers when asked a question, his clearly routine driven way of life. And other signs as well.”

“We will prepare our report,” she said.  “When you come back in a month, we will have a full plan for JC.”

We returned a month later.  We were handed the report.  It read the following:

JC is diagnosed as having dysthymia, anxiety disorder, ADD inattentive type and high functioning autism.

The words leapt off the page at us. 

“What is dysthymia?” I asked.

“It is chronic depression,” the head of the unit said.

A tear trickled down my cheek.  All the 11 years of my sons life I had been working at “modifying his behaviour” had in fact been causing him such anxiety that he now had two recognised disorders of anxiety and depression.  I wanted to be sick.

Now, of course, all the sensitivities to sounds and clothes, the smelling of the food before eating anything, the strict routines, the repetitive speech, the massive melt downs, all of that and more, now made complete sense.

“How do we help him?” I whispered.

They gave us a list of some organisations and sent us off on our way to process the information.

On the way home, I kept looking at JC.  How are we going to let him know.  Beneath the emotional outbursts he was (and still is) such a beautiful boy.

The first thing we did was sit him down and tried to explain in the best way we could that he didn’t in fact have ADHD, he had a condition known as autism.  We explained that this affects certain parts of the brain, which makes a person unable to control all the sensory input around him, which is why he needs to control so much of his environment.  

“In effect, my love,” I said, “you kind of get brain overload.”

As we spoke to him I sensed relief, both for him and for us.  We weren’t bad parents and he just wasn’t being naughty (although we tried hard not to make him feel like that).

Now we had the diagnosis, we felt we could move forward, get JC the assistance he needed and we could finally get on the road to that achievement of anything he wants.

If only life were that easy.  

JC missed out on early intervention and because he was now 12, he was acutely aware of being different.  He refused speech, occupational or any other kind of therapy.  Getting him into the car to attend any appointments, became a mine field.  His outbursts increased, not decreased as he reached puberty, except now he had learned to swear and insult to boot.  His dependence on computer and other technology led him to isolate himself to the exclusion of all else.  As I write this, he is now 15 and has not had one single friend over to the house, nor had a birthday party, in three years.

And the judgement has continued, as well as the family isolation.

Yet, through all of this, we are a stronger family.  I have become a far more compassionate person, so much more tolerant of others that I come across, so totally in awe of people with disabilities who have to navigate a world where the general population want us all to look and act like the media says we should.

I have watched as my son has been persecuted for acting or saying the wrong things, like the time when, at the age of 13, during puberty, a girl asked him out and then asked him if he loved her enough to have sex with her, and then didn’t understand why he got into trouble for constantly asking her when they were going to have sex. (I will be doing another post on sexuality in children with Autism).

You see, children with autism are very literal.  You have to be careful what you say.  They take all things you say at face value.  They don’t understand the hidden meaning behind sarcasm or innuendo.  I believe their biggest gift is that they don’t play mind games – they simply can’t.  They tell you like it is and they believe that what you say is what you mean.  At times, it is shocking.  Like the time he told me that if I sat on him I would crush him (because I am overweight).  But I had long since learned to appreciate his honesty.  Of course, these skills can be learned and attempts must be made to teach them, so we went through a session of why it isn’t okay to tell someone who is overweight that they would crush you if they sat on you 🙂 

Because they do take things very literally, they also believe most of what you tell them.  They have no reason to doubt you.  This makes them very vulnerable.  After the above incident, JC went through terrible bullying.  He was called a pedophile by the kids at school.  Even though we have told JC that he isn’t any such thing, still today, some two years later, when he is upset and frustrated with being autistic, he will call himself a “pedo” among other things that kids have called him.  He simply believes it to be true.  We hope as he matures and is surrounded by more and more support and love, that this will change.

Navigating a world like the one we live in is a mine field.  JC struggles every day.  In our particular circumstance, members of our extended family still, 3 years later, refuse to believe that he has autism, coming right out and saying that they don’t believe he has it, that we use it as an excuse for his behaviour.

Demonising is common place.  The media will use headlines such as “Autistic rapes teenage girl”, or “Autistic person holds up bank”, or other such headlines.  The point is that the word autism is linked to the crime, yet research shows that it is extremely rare for people on the spectrum to commit a crime and also that, rather than autism itself being the cause of the crime, there are many other circumstances that lead to said crime.  This perception extrapolates to the wider community and we have had first hand experience where JC has been accused of something that we simply know is not capable of doing.  

At times, it can be relentless.  But, three years on, it is our firm belief that it is our duty, as the parents of these children whose major deficit is in the realm of communication, to advocate for these kids.  We live with them, we know them better than anyone else.  We need to keep pushing, keep educating, keep working towards a more inclusive, tolerant society that is more accepting of these kids, that is prepared to help them navigate this over stimulated world.

Recent statistics in Australia say that 1 in 160 children are diagnosed with Autism, in the USA a figure of 1 in 80 has been bandied about.  That is a lot of children in the community who are being misunderstood.  We have to change this.  We simply have to and I, for one, will not rest trying to get the message of what an amazing group of kids these are – each with their own beautiful personalities, unique set of gifts and each able, in some way, to contribute to this world to make it a far better place to live in.

Who is with me?

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The daily hum drum of Autism

JC isn’t at school today.  He isn’t really ALL that sick.  He is tired.  End of school term exhaustion.  

I got a phone call yesterday to say I had to collect JC from school as he had vomited.  I don’t believe JC is really ill.  JC is a dab hand at vomiting on demand.  It’s made easier by the fact that he has always had a dodgy stomach.  I have become hardened to the plight of the vomiting child.  I sigh.  I cut my lunch – which I haven’t had – short with my sister-in-law and head on back to the school.

I arrive at school and ask to see JC.  I walk in to the sick bay.  He is sitting on the bed, long legs dangling over the side, reading his iPod.  Of course he is.  I walk up to him and stroke his arm.  He looks at me and smiles.  Not an I’m-pleased-to-see-you smile, but a smile that says, Yep, I’m on my way home.  I swallow my frustration.  It is who he is and I have to accept that.

I take his bag from him and as I do so, I brush his hand.  He feels hot.  And now I look at him, he feels pale.  “Oh, I think you REALLY are sick.” I say.

“I told you this morning I was sick.”

“Yes, yes you did.”

“And you didn’t believe me.”

“That happens when you cry wolf so often, JC, we stop believing and then when you are really sick, we still don’t believe you.”

“I don’t cry wolf anymore.”

I can’t stop myself laughing.  “Oo, you big fibber.”

“No, seriously, I don’t, ever since Dad said he would buy me Assassins Creed at the end of the year.”

That still grates me.  The game is exceptionally violent.  I don’t like the idea of JC playing it, but Dee offered it to him out of desperation.  It was the one thing that we had that could make him go to school without question.  The one thing that would motivate him to overcome his fears and anxieties and enter that school ground.  Lord knows what will happen when we have to hand the game over.  What leverage will we have then?

“Oh, yes, Assassins Creed,” I say.

JC smiles.  “I’m going to make you play it with me.”

It is a long standing joke with JC and I.  I am a pacifist and he plays games that shoot other humans and beings to smithereens.  I hate those games.  He loves to threaten me with making me play them.  I protest with a smile.  It’s our thing.

We get home.  I quickly change his sheets.  He is hot and I think it would be nice to get into clean sheets.  I take his iPod before he gets into bed.  JC protests.  “Mum, I need that!”

“No, you need to rest.”

“Reading is resting.  I’ll be in bed.”

“JC, you stare at this tiny little screen all day, except for when you are at school.  From 6am until 10pm, you do nothing but read this tiny screen.  I am surprised you aren’t blind!  You are sick because your body needs to rest.  That means sleep.”

“But I can’t sleep during the day.”

“Tough, you can try.  When it is after school hours, and if you have had some rest, I’ll give it to you then.”

It works.  JC manages to rest for a good hour or so.  I give him his iPod and he goes back to what he feels most secure doing.

Last night I read about PDD NOS.  I fear for JC and how withdrawn he is.  He is so isolated.  He tells me he doesn’t care and whilst I can accept this, I know the world outside our house will not understand.  

I go to tickle his back.  Every night we have the same ritual.  Dee gets JC to shower (under great protest EVERY night), he then makes him hot chocolate.  A few minutes after his hot chocolate, he then comes into the lounge, picks up one of the dogs and returns to his room.  I follow him in, free the imprisoned dog, and begin to tickle his back with a backscratcher that Dee got as a christmas present.  I use this time to try to communicate with JC.  Normally, he won’t speak to me much, even going as far as to tell me that he is no longer listening to me, but at night whilst I am tickling his back, I can usually get more out of him.

Tonight, I have decided to try something different.  

“How about we play a game whilst I tickle your back?”

“What game?”

“I say the name of a feeling and you have to tell me about that feeling.”

“I don’t understand.”

“Okay, say I say the word Love.  What can you tell me about love?”

“It makes you want to have sex with someone.”

Typical 14 year old response, but not one an NT child would say to his mother.  I smile.  

“Well, yes, there is that kind of love, although I suspect you are talking more about lust there.  When you love someone that you want to have sex with, you respect them and want to protect them as well.  Like Dad and I.  What other kinds of love are there?”

“How I love Harold and Lulian?”  Harold stares at the door having just been set free from the clutches of JC.

“Yes, that’s one kind of love.  What about the love you have for me.”

“That’s gross mom, that’s incest. Is loving Harold and Lulian a form of beastiality?”

This is going to be harder than I thought. “No, JC, it isn’t a form of beastiality.  Where did you even learn about that?”

“A friend of mine told me about it, so I googled it.”  Of course you did. 

“Well, no, it isn’t.  Let’s get back to love.  So there is the love you have for your girlfriend, a different type of love for your parents, your sister, your best friend, your cousin – “

“Do you know it’s not incest if you have sex with your cousin.”

“JC! Enough, let’s just talk about the subject at hand.” and then, “actually, I think it is incest.”

“No, it isn’t.  I looked it up.  You are allowed to marry your cousin, but not anyone directly genetically tied to you like your parents, your sister, or grandparents.  But your cousin is okay.”

I make a mental note to check if that’s right.  “Well, I wouldn’t go around telling anyone that JC, people will start looking at you weird and wondering why you know that.”

I decide to finish the tickling and with it, the conversation.  “Well, that’s it for now.  Perhaps a different feeling for tomorrow night.”

“I don’t think so.”

“Well, good night my boy.  I love you.”  I kiss him on the head and rise to turn off the light.  “I love you,” I say again.

“Mm” is all I get.  JC announced a while ago he was no longer going to tell me he loves me.  Heaven knows why.

This morning JC was not well.  Well, not ill exactly, but tired.  I knew trying to get him to school was futile.  I let him sleep in.  I slept in.  I had weird dreams about the farm of my adolescence.  I dreamed about my mom.  I miss my mom.

I’m still in my pyjamas as I write this. It is 2pm and JC has not emerged from his room except for a late breakfast and to get his iPod.  I’m getting hungry so I better get showered and get us some lunch.

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Autism Uncategorized

Retribution

I run to the car and quickly start up the engine.  The electric garage door is taking too long.  Damn, damn, damn!  I’m going to be late again!  I cannot believe this.  Actually, I can.  When I write/blog, time runs away with me.  JC is never going to forgive me for this.

I scream into the school car park.  He is not waiting.  Phew, I may have gotten away with it.  I rest my head back and close my eyes.  The car door opens.  “You’re late.”

“Oh hi my love.  How was your day?”

“You’re late.”

I want to get belligerent, tell him that so what, so I’m late.  But I know that isn’t right.  “I know, but only by a few minutes.”

“It’s red rooster day today.”

“No, that’s Thursday.”

“No, it’s today, remember we changed it.”

Damn, he’s right.  We did change it.  I know I have no money in my purse.  “I don’t have any money I’m afraid, darling.”  I feel like Mrs Dursley in Harry Potter appeasing that awful child of hers, Dudley.  I quickly regroup.  “We’ll have to do it on Thursday.”

JC slinks down in the chair, turns his music up loud and looks out of the side window.  He is shutting me off.  I ruffle his hair.  Touching him is risky, but as a mum I can’t help it.  He jerks his head away, but doesn’t yell at me.  That is a good sign.  I start to speak to him.  “How was your day at school?”

He pulls the ear phone out of his ear.  “What?”

“I said, how was your day at school?”

“Fine.”

“What did you do?”

“Not much.”

“Well, you must have done something.”

“Nope.”

Monosyllabic talk is routine with people with autism, but especially so with teenagers with autism.  “Did you get caught in the rain at all today?”

“Mum, I don’t want to talk anymore.”

“Well, I want to talk.  I miss our talks.”

“Well, talk to yourself.”  In goes the ear phone.

I pull out the ear phone.  “There’s a new rule in the car.”

“What?”

“No iPods.  Only talking.”

“Nope.  I’m breaking the rule.”  In goes the ear phone.

His comfort zone, that thing he likes to call music.  Am I right for wanting to fight it for his attention?  I drift off in my thoughts when Dee phones.

“Hi.  How has your day been?”

“Yeah, good,” I say.  “I wish JC would talk to me more though.”

JC must have turned down his music slightly because I catch him rolling his eyes out of the corner of my eye.

Dee and I talk a little longer and then ring off.  “I’ll pay for Red Rooster, but you have to go after you drop me off at home.”

“I beg your pardon,” I say.

“I’ll pay, but you go and get me Red Rooster – as pay back.”

“Pay back?” I ask.

“Yes, for being late this morning and for this afternoon.  And I have to have fanta as my drink.”

I recognise a manipulation when I see one.  JC is not normally allowed Fanta, or anything with orange food colouring in it.  The orange food colouring in particular tends to affect his moods, and not in a good way.  Scientific research does not back this up, but my personal experience does and as such we avoid it like the plague.

I realise I am being offered conditional forgiveness.  The question is, do I take it?  Of course, the parent of a normal child would say no Fanta and no Red Rooster with some lesson about respect, and coping with life’s ups and downs being offered by way of explanation.  But JC is not a normal child.  He has autism and what he has presented to me is, in fact, quite remarkable.

His routine dictates that he has Red Rooster on a Tuesday.  It is the only day in the week he is allowed junk food (unless I cook it!). Today has been a shambles of a day for him (and for me, as his carer) – I got him up late, picked him up late and forgot money for his weekly treat.  He thought about it and came up with a solution that would not only maintain the equilibrium of his world, but would also afford me forgiveness for the many transgressions of the day.  It would also get him the forbidden elixir.  It doesn’t take me long to decide to take it and wear the consequences.  I am proud of the problem solving skills he showed today.

I smile at him and immediately he knows that I have agreed.  “Wait here,” he says, and runs into the house.  He brings me his wallet and throws it onto the passenger seat.  “Don’t forget the Fanta.”

I drive to Red Rooster.  It is bucketing down outside.  I could walk over really, but it is busy with cars, and they have yet to build a proper pedestrian walk way, if indeed they ever will.  I return ten minutes later with his meal.  “Have you got the fanta?”  The dreaded elixir.

“Yes, it is here.  But if you so much as twitch with anger…”

“I promise I won’t.”  It is an empty promise.  I have no right to even ask it of him.  He has no control over it, the chemical that affects him so negatively.  He grabs the drink and food from my hands and slumps into his bedroom.  His world has been restored.  He is in his bed, in the dark, with nothing but his boxer shorts on, reading Naruto Fan Fiction whilst eating Red Rooster and drinking fanta.  I would say that this is JC’s version of heaven.

I  decide to busy myself with blogging.  I like blogging.  It is my own heaven, my own elixir.  So here we are, two people in the house, each alone, each in their own little world, but happy.  One has had his world restored and the other has been forgiven for upsetting that world.  It doesn’t really get much better than that, does it?

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Autism Teenage Pregnancy

One mother of a day – Tuesday 17 April – 28 weeks and 3 days

Today is the first day of second term.  JC is up and ready by 6:15am.  He wants his iPod with its promise of fan fiction and knows how to get it.

“What about a shower?”  I ask.

“I already showered last night after my hair cut and dad said I can shower tomorrow morning again.”  I groan, without opening my eyes.  Why does Dee promise these things without discussing it with me?

“Okay,” I say.

Urgh, back to the routine of the school term – up at 6:45am (which in reality is closer to 7:45am), get breakfasts, make lunch, take JC to school (silent trip), do housework (yeah, right!), pick JC up from school, silent trip home, make dinner, eat, tv and bed, and then start it all again the following day.  God, my life is boring!

This time, of course, I have to visit Jay in hospital.  I take JC to school and he listens to his horrible white-noise music whilst I listen to the radio.  I want to say something to him, but can’t think of anything that might inspire him to hold a conversation.  I wander how he is feeling about returning to school, but choose not to enquire.  I drop him off a full 25 minutes before the school bell.

“Good bye my boy.  I love you!” I yell as he walks away from the car.  He doesn’t even acknowledge me.

I have read many books on autism.  In most of them they concentrate on getting a diagnosis when the child is young and the importance of an early intervention.  Most of the case studies used are children that are young or pre-teen in age.  They don’t mention what it is like to bring up an adolescent who is on the spectrum.  Well, frankly, sometimes it sucks.  You want to connect with your child, especially at this time when they are starting to begin to understand adult concepts, but not only do you have the autism to deal with, you also have the prepubescent teenage hormones to contend with as well.  It’s not a great mix, I can tell you.

I drive away heavy hearted.  I decide to improve my mood by spending money (how else?).  Jay needs some new underwear so before heading off to see her I pop into K-mart.  I wander around and eventually decide on some panties, a bra and some socks.  I also decide on some fruit for her and some games for us to play in the hospital – card games, chinese checkers, dominoes.

I arrive at 10:30am.  Jay is still very depressed after last night’s ordeal.  She ended up in the Pregnancy Assessment Unit because she had quite regular tightenings and some painful contractions.  After a 45 minute wait she ended up having an internal examination that showed she was still only 2cm dilated and that her cervix was still long (despite being open).  She was embarrassed and felt that she had caused a fuss for nothing.  She phoned me at 10pm in tears.  I managed to talk her through it, but arriving at the hospital now, it is clear she is still feeling really down.

“Are you still feeling down, love?’

“I feel stupid.  This whole thing is stupid.  I’m never going to give birth early.  Why can’t they just let me go home?”

“Well, if you make it to 32 weeks, they will let you go home.”  I begin to think that after two weeks of being 2cm dilated and nothing happening, that there is a real chance of her going to full term.  I secretly start to get excited even though I know it will be a long 12 weeks.  “And if you make it to 32 weeks, Jay, that will be absolutely amazing!”  The look on her face tells me that she doesn’t share my enthusiasm.

It must be difficult to see past being stuck in bed – to when she will get to hold her son, healthy and well, and know that it is because she remained on bedrest, that she carried him to where he was safe enough to be born.  I know she cannot see that far ahead.

“I bought some stuff for you.”  I plop the bags of goodies on her bed.  She looks at them unceremoniously and I feel a little hurt at what I perceive to be ingratitude.  “Have you had a good look?”

“Yes.”

“I bought you some nickers, bra and socks, plus some games and some fruit to keep your energy up.”  Just in case she missed something.

“Thanks, Mum.”  I can see she isn’t impressed, and why should she be really.  She is fed up, bored and most of all stressed out from not knowing when her baby son is going to arrive and what the outcome of that might be.  God, I’m selfish sometimes!!

“How about we play one of the games?”

“Okay.”

I haul out the tin with the four card games – Old Maid, Crazy Eights, Go Fish and War.

“I don’t know how to play any of those, Mum.”

“That’s okay love, they will have instructions and I used to play these with Gogo and I am sure it will come back to me.  These will be great for you to play with Baby C as well.”

We decide on Old Maid first.  We deal up and start playing.  Before long, the events and depression of last night are gone and we are having a good laugh at who is winning and losing.  All four of the games keep us entertained and in good spirits for a good hour and a half until Jay’s lunch arrives.

“We have a spare lunch, Sarah, would you like it?”  The nurse says.

“Yes, I would.”  It is some veal concoction, but I am hungry and it does not taste too badly.  I like the vegetables – pumpkin and potato.

After lunch, I wheel Jay downstairs for some fresh air in her wheel chair.

“Why can’t I walk?”

“Because you can’t.”  Sometimes, the mother response is the only one that is needed.

We order hot chocolates and talk about what we need for the baby.  We have had this conversation before but I want to start getting things on a more regular basis.  I would like Jay and Em to have everything they need for when Baby C comes home.  I write the list down in my note book.

After the excursion I take Jay back to the ward and notice that she is sleepy.  It is time to go and let her have a nanna nap.  I kiss her goodbye and leave.

I drive home.  I have an hour to kill before I have to pick up JC.  A friend of mine has emailed me about a program for children on the spectrum who are at risk of disengaging from education.  I wonder if JC is disengaging from education or if he is just disengaging from society, or even just me.

I drive to pick him up.  He keeps me waiting a good 15 minutes.  “Where have you been? ” I say, trying not to sound too irritated.

“Just walking around the oval, listening to my music.” If you can call that music.

“Okay, in you get.  I thought I would treat you to a Red Rooster meal today.”

“Is this because you want an ice cream?”  Damn!  He knows me too well.  Next door to Red Rooster is Hungry Jacks and I love their 50c ice creams.  I feel ashamed that he thinks that I want to treat him just to satisfy my own needs.

“No, it isn’t, it is because I’ve spent all holidays up at the hospital with Jay and I thought it would be nice if I treated you since I haven’t had chance to do that.”  This is, in part, true.

“Fair enough.”

We drive in silence for a bit.  “I am very mature, you know,” JC says to me.

“Are you?  In what way?”

“I just use big words in context.”

“Can you give me an example?”

“No, not really, but I can use words that other people don’t know what they mean.”  I don’t doubt this, but I haven’t experienced very many “big” words from him recently, although he says things that blow me away all the time.

“So, about the holidays…”

“Fiji, I want to go to Fiji.”

“Well, yes, I know that, but I am thinking of July.  Where would you like to go in July?”

“Fiji.”

“We can’t go to Fiji in July.  That’s January’s trip – maybe.  How about the Worlds, would you like to go to the Worlds?”  I am referring to the adventure parks on the Gold Coast.

“Nah, maybe another year.”

“What about Disney World in Florida?”  I have no idea what makes me say that. “Not for July, but maybe in January.”

“Yes, I guess.  There are hot chicks there.”  I laugh.  The typical 14 year old boy shines through every now and again.  We discuss the likelihood of there being more good looking girls in Florida than in Melbourne, but he remains convinced that the girls will be better there.  We discuss what Disney World is like and I try to give him a picture of when I was there some 20-odd years ago.  He mentions that there is now a Harry Potter land, either in Disney World or on its own, he isn’t sure which, and he doesn’t know if it is in Florida.  I did not know this.  We move on to discuss J.K Rowling and her nett worth (around $1 billion) and how foolish the 12 publishers that rejected the first Harry Potter manuscript must feel.

I am actually having a “normal” conversation with JC.  I am in heaven.  I love the fact that we are laughing together and actually discussing a future trip together and even, maybe, writing a story that might make us rich one day.  Yes, people, we are dreaming together!  Oh, how I wish I could bottle this moment and bring it out every time I feel so disconnected!

All too quickly, we arrive at home.  JC grabs his red rooster bag and heads indoors.  I grab his school bag and head inside behind him.  He walks into his bedroom, closes the door.  He emerges in his boxer shorts to put his lunch on a plate.  I sigh.  Back to our normality.  But I am not sad.  Because I had a moment with him.  And that moment, as any parent of a child on the autistic spectrum will testify, tends to carry us quite far.

No Baby C and a conversation with JC.  Oh yes, today has been one mother of a day!!

 

Categories
Autism Depression Teenage Pregnancy Uncategorized

Birthdays and autism – Monday 16 April – 28 weeks and 2 days

Today is JC’s 14th birthday.  He wakes up this morning at 6am to get his presents.  Despite not showing much emotion, we have fun watching him open his gifts – The Simpsons movie, one of his favourites of all time, and a new gaming computer.  We imagine his excitement even if we can’t see it.

“Do you want to set up the computer now, JC?”

“No, it’s okay.  Dad can help me do it tonight.”  I’m immediately deflated.  Where are those days when he used to get so excited about his presents and would lose his temper when something wouldn’t work or we couldn’t get it put together quick enough?  Am I insane for missing those days?

Dee senses my disappointment.  “How about Mum helps you build it later today?”

“No, I think you better do it.”  An added insult to my injury – now I’m perceived as incompetent.

“It’s okay.  JC wants time with his Dad,” I say.  I tell myself this to make myself feel better.

JC grabs what he really wants, his iPod so he can read Naruto fan fiction, and heads off to his comfort zone – under his blanket in his darkened room.  Dee takes a look at the PC he has bought online and finds a part lose.  He then sets about getting ready for work.  I climb back into bed where my two dogs have made themselves comfortable.  As I cover my body, neither of them move for fear of being moved off.  I don’t want to move them, I need some loving.

I fall asleep and when the phone rings it is 9am.  It is Dee.  “Hey, my love.  About the computer, is the Windows 7 disc with the package?”

“Uh, I’ll just check.”

“Are you okay?”

“I was asleep.”

“Oh, sorry.  Well, can you check for the disc?”

I have a quick look.  “Nope.  No, disc.”

“Okay, I’ll get in touch with them.” And with that Dee is gone.  The dogs have not moved and dare not look at me.

I make myself a cup of tea.  It is cold and I do not feel like getting up.  I return to bed and phone Jay.

“Hey angel, how was your night last night?”

“Oh, hey, Mum.  Yeah, it was okay.  I didn’t sleep until 12, but it was okay.  How is JC?”

“Yeah, he enjoyed his gifts.  In his usual spot now, though.  I’m going to stay at home with JC today love.  He goes back to school tomorrow, so I’ll come then.”  I know that me being at home will make little difference to JC, but I feel at least for his birthday, for the first time in two and half weeks, I should be available to him for the entire day.

Jay understands.  “That’s fine Mum.”  We talk a bit more about how she is feeling.  The tightenings have really subsided.  She is bored and wondering why she can’t come home.  The boredom is relentless.  I try to encourage her, to reassure her  that she is busy incubating her son and that she is doing such a fabulous job.  We talk about staying in bed for the day.  It is dreary outside and seems to be the perfect day for a pyjama day, a frequent event that used to frequent our family calendar when we would shut out the world and just be together.  I miss those times.  We agree on a pyjama day by distance.

I lie for a bit and realise that Dee’s folks are likely to pop round for JC’s birthday.  No pyjama day for me.  I get showered and dressed.  The door bell rings.  It isn’t Dee’s folks but the new part for my dyson vacuum cleaner.  I am excited to get it.  I fit it and am delighted to see my cleaner is operational again.  I whip around the house with it, filling the canister with all the nasty dust that has been accumulating on my carpets for a good couple of weeks.  Don’t be fooled.  I am what I term myself “A housekeeper’s backside.”  I hate housework and any form of domesticity really.  I do it out of obligation, occasionally, when I can no longer get away with not doing it, usually when we are expecting guests because I am absolutely petrified of being  judged an awful housewife, since that is meant to be my job.

I walk into JC’s room.  It is a mess and full of dust.  “I want to hoover in here, JC.”

“No, I’m in bed.”  The noise is too much for him, so he needs to vacate the room for me to do it.

“I know, but I need to clean it.”  I know this is futile.  I will have to do it tomorrow when he returns to school.  I walk out as he says again, “No.”

I make him and I breakfast.  Bacon sandwich for him, a bowl of sultana bran for me – because I want to lose weight, of course.  He devours the sandwich.  I try to broach the subject of leaving the house.  “Perhaps you and I can go and see a movie.  Battleship is meant to be really good.”

“No.”

“Are you sure?  It’s a lovely day and it would be so nice to get out…” before I have finished my sentence, JC gets up and walks away.

“I don’t want to go, Mum.  It’s my day and I just want to be left alone.”  He walks back into his room and closes the door, a little too hard for my liking.  I sigh.  I feel disconnected from my son and I have no idea how to make the connection with him.  Such it is with autism.  Always living in their own world, with no room for outsiders, or anyone really.

I retire to the sofa and turn on the television.  At least the house is dust free for a while and at least I have a day of relaxation to enjoy.  I hope Jay is not too lonely, but I know that I will be there with her for a good few hours tomorrow so try not to feel too guilty.

I spend much of the day watching TV, making lunch, tidying here and there.  It is relaxing, although I find I am tearful throughout the day.  Depression is such a bitch sometimes.  Even when I am relaxed, those dreaded tears sneak up on me.  But I am relaxed and that is a good thing.  I think about Baby C and wonder how he is doing in his little cocoon, blissfully unaware of life outside the womb and the flurry he has caused.  I smile, because I am sure it won’t be long now and a new adventure will begin.  At least JC got his wish, Baby C will not be sharing the same birthday.  Funny how even if you have autism, you don’t want to share your birthday with anyone, you just want it to be your special day.

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Uncategorized

Traditional family values – extinct or not?

Whilst on my way to work today, I tuned in to my local radio station.  The topic for the ten minutes was whether or not traditional family values exist.  The argument, according to the middle aged presenter, was that The Brady Bunch should return to our screens so that current up and coming youngsters can learn what true traditional family values are all about.  The Brady Bunch episodes would always culminate in the entire family being together either at the dining table or in the lounge discussing the moral of the episode – the proverbial image of families talking together and solving problems together.  The lines were then opened to hear what the general public thought about this notion and indeed the notion of traditional family values and whether or not they still exist.

An expert was called in who categorically declared that the traditional family values of sitting down and eating together do not exist and that it is due to technology that this is the case.  Then a plethora of people called in.  Most of them wanted to make me puke.  You know the kind.  The goody-two-shoes types you used to hate at school who would tell on you if you were passing notes.  I listened as mom after mom phoned in to say that they had traditional family values and that they insisted upon it in their family (not a hint of jealousy there, see?).  I wanted to hit each and every one of them.  I preferred the ones that phoned in to say that it was a miracle if their family got to see each other for more than five minutes in a week.  In fact, I liked them a lot.

This got me to thinking.  Why was it that I despised the family-value supermoms and loved the family-value wrecks.  Was it because that I indeed fell into the category of the latter.  Let us have a look at it.  I am in my forty’s.  I have a husband, an 18 year old and a nearly 13 year old.  I work part-time, my 18 year old is hardly ever at home and the only time we get to talk is in the car when I am ferrying her from one place to another (which admittedly is quite frequently).   However, she announced the other day that she really hates my incessant questions in the car, to which I snapped that I wouldn’t ask so many questions if she would volunteer some information on her life, rather than have me extract them like some painfully wedged in wisdom tooth.  Strike one there then.

Our 13 year old has PDD-NOS and Sensory Processing Disorder.  For those unenlightened (as we once were), PDD-NOS (which is short for Pervasive Developmental Disorder – Not Otherwise Specified) is a mild form of autism and SPD is a condition that renders the sufferer unable to filter sensory input.  They, by default, find communication on any standard level extremely difficult.

And isn’t that the point of  the Traditional Family Value (which we shall term TFV for short) of getting together at the end of the day?  For families to get together to communicate, to talk about their day and find solutions to the day’s problems as a collective family?  I wondered at my own upbringing and tried to remember our TPVs.  We sure enough sat down each night to eat at the dinner table, but more often than not, my parents would end up arguing.   Us three kids would just look at each other, rolling our eyes, sighing at yet another chaotic meal.  Eventually, my father would insult my mother and I, being the eldest and feeling the most protective of my mother would jump in and have my say too.  We invariably would end up in our rooms not talking at all (and even perhaps a bit hungry because the meal had not been finished).  However, sure enough, the next night, we would all have to sit down to begin the ritual again.  By the time I was 15, I began a protest and simply refused to eat at the dinner table.

When I became a mother, I imagined a life of TPVs and the Brady Bunch image of eating together, talking through our problems and celebrating our successes together.  But, alas, the reality just didn’t gel.  I was exhausted, suffered terribly with post natal depression and it was all I could do to get the food down the baby’s throat so I could curl up and find some blissful sleep.  As the children got older, I returned to study and then to work.  Time became an issue.  The children couldn’t wait for my husband to get home as they would be too hungry, so I would feed them early.  Being almost six years apart, the conversation was somewhat difficult.  They certainly did not want to communicate with each other.  I would try to eat with them, but gave it up in favour of adult conversation later in the evening.  While they were eating, I would try to complete household tasks so that my house didn’t permanently look like a bombed flat in Beirut.  The TPV dream seemed to be slipping away.

Eventually, I didn’t even think about the TPVs.  We succumbed to technology (which, frankly, I love).  A TV and laptop in each room and a mobile phone for each person.  When we have dinner, sometimes we manage to eat together, but more often than not we don’t.  TV eating is big in our household.  I get the feeling I should be ashamed of that, but somehow, actually I’m not.  I realise that society’s demands are a double-edged sword.  It demands as a mother you expose your children to as many activities as is humanly possible, jamming their every waking moment with some learning experience.  But then, you also have to make sure that they have enough time to slow down and sit quietly at the dinner table (and even at lunch on the weekend) to talk and be together.  Frankly, with all the activity we are shoving at them, it is incredible they even have the energy to eat, let alone talk and solve problems as well.

As it happens, neither of our children do ‘activities’.  They are extremely anti-competitive and as such don’t do sport/music/dance.  Our 18 year old doesn’t talk full stop.  It wouldn’t matter if we made her sit down and eat with us, she would still glare at me every time I asked her a question about her life, like I was invading her privacy.  Our son blurts out random things whether we are at the table or not.  As parents we can make sense of what he is saying, but again, sitting at the dinner table would have no baring on that at all.  As for my husband and I, well, we have always done our talking in bed (among other things), when we have crashed after a very tiring day of working, cleaning, cooking, running kids around, etc., etc.

In fact, I am wondering, really, why we have a dining table at all.  All it is used for is a dumping ground and on which to do homework when the kids don’t want to be in the study.  I guess it is a symbol. A symbol of an ideal – of a family that sits around it at each and every meal time, talking animatedly about their days, sharing and caring in that Brady Bunch way.  I guess it is an allusion to a TPV I once wished I had, but now realise is just a pipe dream (loaded with guilt for the time strapped mother).  Maybe one day, in act of rebellion, I will burn it, but for now, I’ll keep it … just in case.