Categories
Autism

There is always hope

When JC was diagnosed with autism we had no idea what the future may hold but more importantly we had no real structured plan going forward.  We had no idea of what to expect as he would travel through puberty.  I have no idea if this is because he was diagnosed at a hospital more than an hour away from our house and as such they weren’t aware of services in our area,  or because he wasn’t diagnosed until later meaning they didn’t really have a plan because he had missed all of the early intervention or if it was because he was high functioning and it was perceived it wouldn’t be needed or that resources are so stretched that for the high functioning ones there just isn’t the help.

Either way,  that lack of planning has impacted on our family greatly, but especially on JC.

Whether or not a child with autism is high functioning it still means that they face major social and communication difficulties.  Humans are social creatures and have a vast array of social rules,  norms and cues that are difficult to navigate even for a neuro typical teenager in the throes of puberty,  let alone someone on the spectrum.

JC was diagnosed with autism in the high functioning range just before puberty set in. Within 6 months of that diagnosis he had isolated himself to the point he refused to leave the house, and, 3 years later, continues to do so.  He will go to school unless,  for some reason which can take quite a while to determine,  he refuses to do even that. For the most part he lives his life in his lounge.

We have tried many things to get him to engage in life – with us and the outside world. All to no avail.  A couple of years ago we spoke to a psychologist about it.  All our attempts to stretch him had failed.  We wanted to use the only thing we knew would motivate him,  his love of reading fan fiction.  We wanted to remove it and let him earn it back through social engagement just with us at first but then with the outside world. That psychologist explained to us that his special interest is his safety net and that removing it would create such anxiety for JC it would be torture.  We were so shocked and relieved we took professional advice.  We definitely did not want to torture our son!

So we returned home and did the best we could.  We begged, cajoled,  even bribed in an attempt to get him out of that lounge and back into the land of the living. I read lots of books that said children on the spectrum needed to be stretched,  given opportunities to achieve and succeed at things which then would build their self esteem – and sport especially was good at this.  We tried so many things. I would get frantic as our son refused to leave the room in which he was ensconced thereby refusing any attempt to do such stretching and achieving. How coukd I get him to play sport if he woukdnt leave the room?

(It turns out that the advice given to us was in fact incorrect but another post on that will follow)

Yesterday was a horrible day.  It rained and hailed with gale force winds all day.  Going outside was impossible.  It’s school holidays.  As the day progressed with me pottering and JC in his boxer shorts,  under his blanket,  reading his fan fiction,  I got more and more depressed.  I felt like we were living two seperate lives.  I ached for a”normal” relationship with my teenage son. But instead I took him his food and drink throughout the day,  he would say thank you and we would go back to our seperate lives under the same roof.

I thought about those parents who had the benefit of early intervention and, to be honest with you, I resented them. I was angry at the doctors who refused to acknowledge something was wrong when I took him to then at age 2, 3, 4 and 5, I was especially angry at the ADHD specialist who took our $2000 to assess our son because the said previous doctors refused tohelp us, and cameback witha diagnosisof ADHD/ODD only to be told 6 years layerit was autism.  I resented and became angry at all that time we had missed whet he would have benefited from therapies such as ABA and social stories,  where we could have been building his confidence instead of crushing it with behaviour modification that advised for kids with ADHD. Studies show that the earlier the diagnosis,  the earlier therapy begins,  the far better the outcome,  the better chance of an independent life.

I was once told that research has shown that wherever you are at at the age of 25 is pretty much where you will be for life.  He said that this means of you are independent, working and socially integrated at 25, this is how you will be for the rest of your life barring a major catastrophe.  If you are living at home and not socially integrated by then, the chances are you won’t ever be.  Now,  I haven’t read the study so I have no idea how the study was conducted,  what the hypothesis was and how it had been extrapolated to the wider community. Either way it has scared the crap out of me.  JC is 15. We have 10 years to improve his chances of living an independent life.

Motivated by thinking of this study,  I sat next to JC in his lounge.  He was playing PS3.

“Can I play with you?” I ask.
“Mum, youre a pacifist.”
It’s true.  I abhor killing and war and am very vocal about it. War is unneccsary, especially the wars being fought today.  I admire Gandhi and Buddha.  My kids know this very well.  I looked at the game my 15 year old was playing.  Dead bodies were lying every where.
“JC do you have to play these games? ”
“It’s just a game mum.  They’re not real bodies.  It’s pretend. ”
I sigh. At least he is aware of that. He once tried to reassure me he wasnt about to go around killing anyone. Such a relief.
“Well, can I play with you?”
“No.”
“Why not.”
“I prefer to play alone.”
The 2 second conversation took place with me sitting next to him and him continuing to play.

I once read that to engage with someone with autism you need to take an interest in what they like,  in their special interest.  I have tried,  on Lord have I tried.  Nothing has worked.  Yet again, I walked out of the lounge defeated.

By the time Dee got home from work he could see I was down.  He asked why and I told him.  We wondered,  as we had many times in the last three years since his diagnosis, how on earth we could stretch JC past his comfort zone.  We had no idea. 

Then we got a text from a friend inviting us all to the footy final on Saturday. They are one of a handful of friends who totally get our family and accept us as is.  Dee’s team is in the final,  JC’s team isn’t. We went into his lounge and asked if he would like to go.

“Sure,” he said.
We looked at each other. We couldn’t believe it.
“Swans arent in the final,” Dee said. He wanted to make sure JC understood he wouldn’t be watching his team but Dee’s.
“I know, but it will be fun watch Fremantle whip the Hawks’ butt!”
Dee and I laughed. Dee made some joking quip about Fremantle being a rubbish team to which JC replied that Dee’s team is still going to get whipped.  We left the room.

We got to our lounge and sat down. Tears started streaming down my face. Dee put his arm around me.
” There’s always hope my love. Always hope.”

Categories
Autism

Migraines, ID theft and Accidents

I was first introduced to buddhism when I was 14 years old.  My boyfriend’s mother was a strong follower and on my first visit to their house she told me that buddha had four noble truths.  The first, she said, was that life is difficult.

I was 14.  And Buddha was clearly wrong.  At least he was to a girl whose sole purpose in life was to seek pleasure.

Buddha, however, managed to get under my skin.  I loved his philosophies of compassion, kindness and non-violence and tried to live my life according to these principles.  Yet, I could not believe the blanket statement; that life is difficult.  Every fibre in my teen, twenty-something and even thirty-something body screamed that life was not meant to be difficult. Difficulty was not why we were born.

Then, this week happened.  Let me paint a picture, if you would be so kind as to indulge me a tad:

Life was going well.  I had been on anti-depressants for over three years following the trauma of sobriety (more details in another blog perhaps), and the death of my mother.  But, the time had come when I realised I no longer needed them.  I was, in essence, happy (Yay for me!).  Sure, the withdrawal was a little crappy.  Well, okay, a lot crappy, but I felt like I would finally understand what life was meant to be.  Despite everything that had been thrown at me, I was going to live that happiness, savour it, and I could finally experientially prove my still firm belief that Buddha was wrong, that we are not, indeed, living in a world of samsara (suffering).

Monday; I get two emails from Ebay congratulating me on purchases I have not made.  Later that day I receive a phone call from the bank asking me if I tried to make a $450 payment with a credit card I have not used in years.  Then, later still, a debit is made from my account in the amount of $52 to PayPal.  I check my PayPal account and a purchase has been made from Walmart to some address in Ohio, US.  I spend the entire remainder of my day sorting out things with Ebay, PayPal and my bank.  I have to close down my credit card account, open another one, change passwords, change security questions.  My identity is at risk, apparently.  They have access to my credit card details and have changed details of my account.

Tuesday; I’m feeling refreshed, having brushed off my near identity theft.  The day bumbles along.  I continue to spring clean my life, which includes spring cleaning my house.  I sort out cupboards and bake a date loaf to boot.  Oh yeah, baby, I am on fire!  I pick up JC from school.  He is grumpy but that doesn’t phase me.  Before long I have managed to get him to laugh.  This is a rare feat and I want to shout it from the mountain tops.  The sun is shining, there is little traffic on the road and we are laughing out loud.  SMACK!  Both JC and I are flung forward.  It takes seconds for me to realise we have been rear-ended.

“Are you okay,” I ask JC.  He shakes his head, but I can see his is physically okay.  The emotional trauma of his first car accident will have to come later.  I look in the rear-view mirror.  A 50-something woman has hit me.  She doesn’t get out of the car.  I get out, look at the damage on my car and realise just how hard she hit me.  I walk up to her window.  She winds down her window.  Kindness, compassion, non-violence.  

“Are you okay?” I ask the woman.

“Well, I would be if you hadn’t stopped so suddenly.”

Breathe, I tell myself, just breathe.  We continue onto the side of the road where we exchange details.  She is in shock, irritated.  I am angry at her.  For hitting me, for putting JC in danger, for not apologising.  I drive off and the shock starts to settle.  I turn to JC.

“Love, forgive me for what I’m about to do… FUCK! FUCK! FUCK!”

He smiles at the fallibility of his mother.  Thankfully, we are only five minutes away from home.  JC is in shock.  He feels sick.  I promise to make him pancakes with syrup on them.  He devours them telling me over and over again that this is his first accident, that he can’t possibly go to school the following day.

I phone Dee.  Hearing his voice enables me to break down.  I sob.  I let myself go, wholeheartedly.

We spend the remainder of the day sorting out the insurance.

Wednesday; I’m okay.  My neck hurts and JC is at home recuperating from his “life altering trauma” (got to love the mind of a 14-year-old).  I meet Jay and Baby C.  He gets his first taste of solids today – it is a GREAT day.  We laugh and I feel so grateful that I am able to be in this moment, share this moment.  I ignore the thudding at the base of my skull.  Just a head ache.  By the time I have come home, my head is pounding.

“Mum, I need to do my project, but I only want to start it at 5.”  I look at my watch.  4pm.  An hour to medicate, rest and let the headache dissipate.

JC wakes me at 5.  I am unable to lift my head.  “I can’t JC.  I can’t help you.”

“Don’t worry mum, I’ll just ask for another extension.”  Damn, damn, damn this headache!  I drag myself out of bed.  Take the laptop through to the dining area and get JC to sit next to me.  “Let’s do this,” I say.  In minutes I am seeing double and in agony.  JC takes the laptop from me.

“It’s okay, mum.  I’ll do it.  You just go to bed.”

I can’t argue.  I have no power to argue.  I return to bed.

A few hours pass and I slip in and out of sleep through an agonising clamp on my head.  In the time I am asleep, JC has finished his project, walked over to his grandparents house who have fed him and Dee has come home.  I finally wake with a less clamping thud in my head.

“How are you, my love?” Dee asks as he hands me the dinner he has cooked for me.  I nod, not feeling totally well, but not as awful as I was before.

“Mum, mum, I finished my project.  All. By. Myself.  I’m going to do my homework from now on.”  He is beaming and the pride in my heart is superseding the pain right now.  This is so huge.  SO HUGE.

Thursday;  I wake to a still dull thud in my head.  It grows throughout the day and I realise that perhaps the impact of the crash has given me whiplash.  I am in need of a new prescription for the only drug I take now, the one I cannot live without, thyroxin, so I make an appointment to see the doctor.  My appointment is at 4.  I relax at home, try to ignore my headache.  I sort through photographs for new frames I have bought.  I miss family.  I miss friends.  I have resolved to put them around me, in frames.

4pm arrives, I make my way to the doctor.  “Hood morning, Sarah, vat can I do for you?”  My lovely doctor is a bristly Croatian and I love her.  I tell her of the accident and my subsequent migraine.  She examines my neck and head.  I have no physical pain.  She looks at her computer.

“Ve removed the mirena three veeks ago?”

I nod.  It was the last of the drugs that I gave up, no more artificial stuff inside my body.

“It is probably vour hormones dat is causing the migraines.  The mirena resists the hormones.”

“Oh,” I say.

“You are nearing that age when your hormones vill play havoc.”

I look at her.  I’d say the thumping headache was havoc.  I also suddenly feel like a shrivelled up prune.

I get my thyroxin prescription and head home.

Thursday night; Thirty years after hearing about the first noble truth, I am ready, Buddha, to admit you are right.  Life is hard – it is FUCKING hard.  It was always hard.  I admit it, I am a slow learner.

Now, bring on the second noble truth baby!!

Categories
Autism Depression

Shopping and the Status Quo

“Can you hear the dogs?”

I open my eyes from a deep sleep.  “I didn’t hear them.”

Dee gets out of bed.  I hear him yell at the dogs to go back to sleep.  I wonder why I haven’t heard them.  Am I going deaf?  I really need to phone that specialist.

Dee climbs back into bed and spoons in behind me.  “Bloody hell, Dee, you’re cold.”

I fall back into a deep sleep.  Scratch, scratch.  This time I hear them.  Dee is clearly not getting up.  I haul up out of bed and stomp through to the laundry.  I open the doors.  Wagging tails and licking tongues greet me.  I open the door to let them outside.  It is still dark.  I pad through to the pool room sliding door.  As I go through I notice JC on the settee still sleeping.  He has taken to sleeping there instead of his bed on the weekends.  Another anomalie of our son to accept.  He says it gives him peace.  Who are we to deny him peace?

I open the sliding door and rush back to bed.  It is bloody freezing.  I check the clock.  6:30am.  Shit, really?  On a Saturday?

I pull on a jumper and turn on my electric blanket.  I crawl into bed, exhausted.  Dee snuggles up behind me.  He is toasty warm.

Another deep sleep takes over me.  My dreams are fitful.  I am angry, confused, trying to escape, trying to scream but can’t.  You know the type.

Dee wakes up first, as always.  “I’m getting up – think I might go shopping early.”  Dee does the food shopping now.  Since mom died, the hum drum duties have largely fallen to him.  I no longer feel guilty about it.  He likes doing it.  It saves us money.  I like him doing it.  It saves me having to think and struggle with crowds.

“Do you want to come shopping with me?  You did say you wanted to start your diet today in earnest.”

I think about this in my slumbered position, eyes closed.   I should go.  “Alright, I’ll come with you.”  I don’t really want to go, but I know that taking some control over what I put into my body is the only way I am going to seriously lose weight.  I need to take responsibility for myself.

“I’ll make you tea.  You don’t have to get up now.”  Dee is clearly pleased at my decision.  I doze some more.  My tea arrives, but I don’t drink it straight away.  I doze, regretting my decision to agreeing to face the crowds.

Ironically, I have no trouble facing the crowds with Jay and Baby C.  I push and cuddle Baby C whilst Jay shops.  It isn’t the same as pushing a trolley around trying to jostle for food and then waiting in a massive queue for your food to be tallied up, bringing it home, putting it away.  It’s just too much.  I sound lazy, but I’m not.  I just haven’t been able to face shopping for two years.  Before that, I did it all the time.  Now I don’t.

Eventually, I drink my luke warm tea and pad into the shower.  I try on my new swimming costume and another old one.  I don’t like what I see, but it will have to do.  Hopefully, I will gain a bit of a tan on the tropical island.  Two weeks and we are off.  Honestly, I’m not really that excited, but that is okay.  I’m sure I’ll love it when I am there.

JC is in his room, in the dark, reading Naruto fan fiction.  “Have you had breakfast?”

“I’m not hungry.”

“JC, you have to eat.”

“How about JC makes his own breakfast whilst we are out?” Dee offers.

Yeah, I’ll make my own breakfast.”

“No,  you won’t.  He won’t.  He will read and then not eat.”

“You will eat, won’t you JC.”

“Yes, I’ll make my own breakfast.”

I shake my head.  We are in the kitchen, JC’s door is shut.  Dee whispers, “Sarah, we have to let him take some responsibility.  He is nearly 15.  He can do this.  We have to trust him.”

I no longer believe in the word trust – of anything or anyone.  I shake my head again and walk off.  I feel out of control, meaningless.

“JC, I want you to take a photo of your breakfast please.  We are giving you trust here and I want proof that trust was well placed.”

“Okay, Dad, I will.”

We head off to the shopping mall.  The parking lot is full already and it is only 10am.  My anxiety level rises.  So many people.  Far more than there are during the week.  I feel tired, drained, already.  We head off for coffee first.  It is nice to spend some time with Dee.  My favourite part of the day is when he comes home.  I love him and I miss him during the day.

We chat for a bit.  I am thinking of going to university to do a psychology degree.  I don’t want to be a counsellor.  I want to do research.  In particular I am thinking of becoming a psychological anthropologist.  My spiritual quest and lack of any answers that sit right with me means that I am incredibly interested in studying our need for religion, faith and belief.  We discuss this.  As usual, Dee is as supportive as ever, although I get irritated when he suggests I find someone who does this to find out what it entails.  He is an accountant and is as prudent as ever.  I’m not.  I don’t like prudence.  We talk some more and I even laugh.  I miss laughing.

We head to the shops.  Urgh.  I start looking at food I know I should not be having.  “Is that allowed on your diet?”  Dee asks helpfully.

I’m doing Weight Watchers and no, Lindt chocolate is not allowed.  Well, not unless I’m prepared to forgo an entire meal for a little block of chocolate.  I put the bar back.  I feel like I am parting with a dear friend.  Instead of alcohol, I am now addicted to chocolate.  I feel a headache coming on and wonder if it is psychosomatic.

I start looking at all the rows of convenience food.  If the shop only sold whole food and food that was good for you, it would only take up a quarter of the space.  I get overwhelmed at all the packaging of the food and think about the sea creatures that are getting caught up in plastic.  God, humans are sometimes full of shit.  I think about living in a country that doesn’t waste, but the only ones I can think of are very poor and, being the hypocrite I am, I am now very used to my creature comforts.

“Have you thought about the volunteering we talked about?”  Dee asks.

I snap out of my anxiety filled musings.  “Hmm?  Oh, yes, I did do a search, but it seems there is nothing in our area.  I will look more though after our holiday.”

“God, yes, I cannot wait to go.  Two weeks today and we will be on Hamilton Island!”

Yep, we will.  I get to expose my white whale like body for all to see.  Oh, goodie!

We head home.  On the whole it wasn’t a bad experience.  Dee spent more money than he would have liked because I kept putting stuff in the trolley.  This is why the status quo works for us and I am pleased for that.

JC is out when we get home.  He has gone for one of his three daily mandatory walks.  Whilst we are packing the shopping away, he arrives home. “Here it is,” he announces.  He takes his iPod and shoves it into Dee’s face.  Peanut butter toast.  I was wrong.  He did do it.  We could trust him after all.

Categories
Autism

The things we do for vanity

After a slow start to the morning, Dee’s dad calls to see if I would like to meet them for coffee.  It is growing into a nice day outside, so I figure why not.  JC said he doesn’t want to go.  Of course not.

I get showered and dressed, desperately trying to ignore the growing dust on my bedroom furniture.  I really must get stuck into doing some housecleaning, but seriously, my body just ignores my mind when I tell it to reach for the vacuum cleaner and duster.  It must be an affliction of some kind, probably fatal (for the house).  I make a mental note to look up the cost of the cleaner and suppress the screaming voice that is shouting “LAZY WOMAN!” to the back of my mind.

The shopping centre is not as crowded as I imagined it would be, given that it is school holidays.  I make my way to the coffee shop where we always meet, order three coffees and pumpkin soup for me.  I have not had breakfast and realise I am hungry.  I sit down at a table and wait for Dee’s folks.  I love this little coffee shop.  In the year that I have been coming here, I have always loved its atmosphere.  It isn’t a great place, but for some reason I do love it.

Dee’s folks arrive.  They are jovial as usual.  “We bought you a leg joint, love.  We’ll drop it off on the way home, okay?”  They are always buying us meat that they find on special.  Dee’s dad loves meat and particularly when it is on special.

“Thank you, that is really very good of you.  Please let me know how much I owe you.”  He waves his hand as if to say we’ll talk about it later.  I must remember to let Dee know to give his dad $20 or so.

We chat whilst we drink and eat up.  Dee’s mum decides on pumpkin soup as well.  Dee’s dad just has coffee.  I like to catch up with them and Dee’s dad is looking so much better after his operation.  I comment on it and he seems pleased with how things have gone.

After a while, we get up and kiss goodbye.  A momentary interlude in our day.  “Are you off home then, love?”  I think of that layer of dust waiting for me.

“No, I think I’ll just have a wonder.  It’s been a while since I was able to wonder around the shops on my own.”

“Okay, we’ll just let ourselves in and put the meat in the fridge, okay?”  We each have a key to each other’s home.  I nod.

As they walk towards the car park, I make my way into the centre.  I wander around the big department store for a while, looking at the toy sale thinking I should be putting stuff aside for Baby C’s christmas presents.  Christmas presents in July!

My hands feel grimy and I suddenly have a brain wave.  I’m going to have a manicure and get that new shellac nail polish that Tee was telling me about.  I walk into the nail bar.  All nail bars that I have been into in Australia are owned by Asians and all the staff are Asian, and their english is very limited.  Normally, this is not a problem.  You just ask for what you want in one word – acrylics, refill, shellac – you get the idea, they wave you to whatever seat they want you at, work on your nails, you pay and you go.

This time, however, I needed more information.  “Do you do Shellac?” I ask.

She nods.

“How much?” I ask.

“Thirty dollaaar”

“Is that including a manicure?” I ask.

She shakes her head.  “Manicure $20 dollaaar.”

“How much for both?”

“Fifty five dollaaar.”

A quick calculation tells me that she has overcharged me by $5.

I decide to just go with the shellac.  She waves me to sit down, grabs my hand rather unceremoniously and starts to “shape” my nails.  I have very short nails.  I no longer bite them but for the life of me I cannot grow them.  I have fine, balding hair and I guess my nails are similar.  They just don’t grow.  Shaping them was always going to be a challenge, but the speed and lack of attention to actually trying to shape them left me feeling a bit ripped off.  Perhaps I should have gone for the manicure instead.

“Actually, I think I will have the manicure as well.”

She looks up at me.  “You want manicure?”

“Yes.” I say.

“Okay, fifty five dollaaar.”

I shake my head.  “It’s fifty dollars,” I say.

She shakes her head.  “Shellac velly expensive.  Fifty five dollaaar.”

I breathe and prepare to explain.  “Manicure is twenty dollars, right?”  She nods.  “Shellac is thirty dollars, right?”  She nods.  “So twenty and thirty is fifty dollars, right?”  She thinks for a bit.  The penny drops and she laughs.  I laugh too.

“Fifty dollaaar,” she says.

She grabs my hand, plops it in some water and proceeds to lightly, very lightly, well, decidedly half-heartedly really, push my cuticles back.  She does the same with my other hand.  She then starts to remove my cuticles with the cuticle scissor thing that is used for that purpose.  I notice a drop of blood oozing from my left little finger.  I am beginning to wonder if she knows what she is doing and if I have any legal rights in this situation.

That was the sum total of my manicure.  Literally two minutes.  I am then motioned to the next seat where the shellac is applied to my nails.  First a coat of clear stuff is applied.  I am told to put my hand under a UV light whilst she does my other hand.  The UV light beeps and goes out.  “Take hand away! Take hand away!” she screams at me.  I immediately jerk my hand out of the UV light machine in case my hand is about to spontaneously combust.  The same thing happens with the other hand.  “Take hand away!” she screams.

“Is it safe?” I ask.

“Velly safe,” she laughs.

The colour is applied.  I have chosen an extremely pale pink because my nails are so short.  “Velly pale,” she says with a distinct tone of distaste.

“My nails are very short,” I feel compelled to explain.  “When they grow, I will have a brighter colour,” I promise.

The final coat of clear shiny shellac is put onto my nails and as it is hardening under the UV machine and I am praying that it isn’t going to cause me to get skin cancer, another nail technician walks over.  She starts talking to my nail technician (and I use that term loosely).  Actually, she starts shouting.  Before long they are shouting at each other in what I think is vietnamese.  Of course, I have no idea what they are talking about, but when the standing nail technician grabs my hand, swings it about like the rest of my body wasn’t attached to it, I realise that they are arguing about my nail job.

This goes on for a couple of minutes – my hand being swung around, them shouting at each other.  I decide that now is an opportune moment to mention that I wasn’t best pleased with my so called manicure either.  I mean, I didn’t even get the hand massage, which is the best bit.  I know my nails are short, but that doesn’t matter, I want my hand massage.

The standing technician shouts more at the sitting technician and the word “massage” is mentioned.  I feel guilty, but also self righteous because after all, I’m paying $50.  Suddenly, the standing nail technician swipes her hand over my thumb nail and the shellac which is meant to be rock hard and last for three weeks, comes off.  Clearly, the procedure hasn’t worked.  By now, I am really concerned about the safety and quality of this procedure.  My nail technician is shaking the bottle of nail polish I chose at the standing technician and I am getting the distinct feeling she is blaming my colour choice.

I pull my hand away.  “I think I’ll just have the manicure and forget the shellac,” I say.

“You just want manicure?” the standing technician says.

“Yes, I say.  Just the manicure.  I’ll come back for the shellac.”  Just in case they won’t let me leave.

She nods.  “I’d like you to do it,” I say, convinced my technician is obviously a student and has no idea what she is doing.

My technician stands up, shouts some more and proceeds to another woman waiting to have her acrylic nails filled.  Poor woman, I think to myself.

The new technician takes my hand gently and soaks my hand.  She shapes them, somewhat better than the first, then redoes the cuticles, thankfully without drawing blood.

“Is she new?” I ask, feeling guilty at the furor, trying to make conversation.

“No, she do nails four years now.”

I say nothing, but am dumbfounded.  How on earth can that be possible?

“You want shellac?” my new technician asks.

I shake my head vehemently.  I am not risking that UV machine again.  I smile sweetly.  She applies clear nail varnish.  When they dry, I pay my $20 and go.

Of course, I feel like I should have been given my non-manicure for free, especially as my nails look like I did them at home.  In fact, I think I probably could do a better job.  The only positive thing was that I got to wash my hands, which meant they didn’t feel grimy any more.  And therein lies the lesson. When your hands feel grimy, go to the bathroom, wash your hands, then go home and do your own nails.

Categories
Autism

One life ends and another begins

I wake up and I immediately feel sad.  I choose not to get up straight away.  Dee has gone on his weekly cycle and I am alone in bed.  The dogs are on my bed, so I assume that JC has risen and let them in.  I curl my body around them.  I need organic contact.  I try not to think what day it is, but I am unable to think of anything else.  Today is the 2nd anniversary of mom’s death and the grief inside of me is still so strong.

It has been building up inside of me for over a week now.  I have felt an inner sadness rising up from inside my belly, from the reaches of my soul and although I have tried to ignore it, I have not succeeded.

Last night I couldn’t drag myself to bed.  As if I could avoid waking up into the day that she left us, I refused to let sleep overcome me.  Of course, eventually it did and my sleep was fitful.  I looked at my clock.  8:45am.  I definitely am not ready to face the day.  Two years.  I should be better able to cope by now, surely.  But, having experienced a fair bit of grief, I know that there is no time limit.  Grief will do what grief wants and you just have to go through it.  I think of Baby C and I feel a tear trickle down my cheek.  The pain of my mom never meeting him and he not ever knowing mom is too much to bear.

I hear the door open.  It is Dee.  “Hi,” I say.  “How was your ride?”

“Bloody freezing, thanks.  I’m getting undressed and getting back into bed to warm up.”

As he does so, I roll over so he can snuggle up to me.  “Bloody hell, you are cold!”  I squeal.

“And you are so hot, baby.”  he says.  I am not in the mood for playing.  I don’t respond.  We lie in silence whilst his body warms up.  Eventually, he is sufficiently warm and announces he is going for a shower.  I tell him I am staying in bed.  “You stay there as long as you like, my love.”

He showers, gives JC breakfast and then heads out to do the shopping.  I know I have to get up, but I really don’t want to.  My phone buzzes.  It is Jay.  What are we doing today?   My sister had already sent out an email asking us to each get a balloon filled with helium, go somewhere special and release it into the atmosphere (representing it going to heaven) with a message attached.  The idea was that because none of us were near each other, in different countries, we would be connected in our remembrance of mom through this act.  It is a lovely idea, but as I lay there, I didn’t want to do it.  However, I had agreed to do it so was now committed.  Jay wanted to know when we were doing it.

I couldn’t think of anywhere special to go.  Australia was not mom’s home.  It was mine.  Not only that, by making Australia my home, I had broken mom’s heart.  I had robbed her of five years with me and her grandchildren.  Since I couldn’t think of anywhere to go, I decided that the four of us would walk to the bridge that went over the waterway near where we lived.  It was close, quiet, and seemed as good a place as any.

Dee and I collect Jay.  Em is at home.  They both look a bit tired.  Baby C is awake and immediately a heaviness strikes my heart once more.  Mom should be witnessing this.  A voice is in my head telling me that she knows, that she sees.  My intellect wonders if that is indeed true.  I pray that it is.  I cuddle him close to my chest and wonder if this is what mom felt when she held Jay.  I pray that I get more than 17 years with Baby C.

We make our way back home stopping at the party shop for the helium filled balloons.  I have decided on red.  It is mom’s favourite colour.  I have also decided to get five balloons – one for each of us including Baby C.  It only seems right.

I write my note.  Words are totally inadequate to describe how I feel. I attach the note to the balloon, photograph it and take more cards through to the others.  I knock on JC’s door.  “Don’t come in,” he shouts.

“JC, I need you to write a note to Gogo for us to release the balloons.”

“I’m not coming!”

“Oh JC, please!”  I beg.

“NO!”

“You bloody well are coming!” I yell.

“No I’m not!”

Dee comes over to me.  “Love, don’t make him come, you know how he gets with emotional stuff.”  At this point, I don’t care about autism and how it affects him.  All I know is that I want my family, my WHOLE family, the only family I have in Australia, with me.  I burst into tears.

“Is it too much to ask to just have my family around me at this time?  All I want is for him to walk with us, release his balloon and go.  Is that too damn much?”  I know he can’t help it, but my grief, rapidly rising up inside of me, is overtaking my rationality.

I hear Dee talk to JC.  JC doesn’t want to do it, but he agrees.  He doesn’t write a note, but I write one on his behalf.  JC jerks his bedroom door open.  “I’m leaving now, or not at all!”  He’s been backed into a corner and he has come out fighting.

“Don’t be ridiculous, JC, we need two minutes to get ready.

“I don’t care, I’m leaving!”

Dee and I are shouting after JC when Jay emerges from our other spare room having just fed Baby C.  I quickly as her to write a note to Gogo and also a note from Baby C.  As I am telling her this, and as JC makes it to the front door, I hear voices outside the front door.  Dammit, who is it now!  My anxiety levels are rising.  I just want to release the balloons, and settle down for the afternoon.  It is Dee’s parents.

“Hi, we thought we would pop in.  We’ve just been to the garden centre and thought we would show you this?”  Dee’s dad hands him a pamphlet on mulch.  We have been promising mulch for their garden for a long time.  I’m standing holding the balloons.  “What are you doing?” Dee’s dad asks.

“We are going to release them in the park.  It’s the anniversary of mom’s death today.”

“Oh, I’m sorry, love.  How many years?”

“Two.”

“Two already?  It doesn’t seem that long.”

“Your mum was such a lovely woman.” Dee’s mum says.

“Yes, she was,” I say.  I don’t know what to do about the balloons.

“Well, we better get on and let you do what you have to do,”  Dee’s dad says.

I suddenly feel guilty.  “Do you want to come.”

“Alright, thanks.”

We start our walk to the lake.  Dee’s dad pushes Baby C in the pram and Jay and I walk hand in had.  Dee has the two dogs in tow and JC walks a number of steps behind us with his earphones in his ears.  I am silent, deep in thought.

We make it to the lake.  As we approach the wooden bridge, a lady with a big black dog comes off the bridge.  “Oo,” she says, “someone’s having a party!”  I just smile.  Wishful thinking.

We all stand on the bridge.  I give everyone a balloon.  “Why weren’t we told about this,”  Dee’s dad says, “we loved your mum too, you know.”  This outburst takes me a bit by surprise.  It didn’t even occur to me to invite Dee’s folks and sister.  My grief over the loss of mom has always seemed to me be a solitude endeavour, Iseriously never thought of inviting someone to a memorial of my mom.  I look at Dee’s dad.  “Well, it was just a spur of the moment thing,” I lie, “I’ll make sure we do it next year with you.”  I don’t want him to feel excluded.  I immediately worry how Dee’s sister is going to take it when she finds out we were all there and she wasn’t.  I’ll have to phone and explain.

Dee’s dad offers to take photos.  We have all agreed to photograph the event and post it on facebook to share and feel connected.  Right now I feel quite disconnected.  Alone in my grief.

I start to speak. “Well, we are here to remember mom, Gogo.  Mom, we love you and miss you…”

“And now we let go of the balloons.” JC interjects.

“Well, can you at least say something about Gogo.”  I say.

“Goodbye.”  JC says.

“How about I love you, Gogo.” I say.

“Okay, let’s go with that,” he replies.

“Dee, what about you?”

“Elaine, you will be sorely missed.”

“Jay?” I say.

“I miss you Gogo.”

“And you?” I say to Dee’s dad.

His lip begins to quiver which shocks me.  “Eileen, we loved you and we will miss you.”  Eileen was not my mom’s name, but I know he meant Elaine.

“Are we talking about my mum?”  Dee’s mum pipes in (Eileen was, however, Dee’s grandmother’s name), “Mum, I miss you very much, but I know that you are now in a better place and now at peace.”  I smile.  Dee’s mum’s memory has been going for a number of years now.  I imagine mom smiling.

We let go of the balloons and as we do so, Dee’s dad snaps away.  JC immediately walks off the bridge towards home.  He has had enough sensory overload for one day.  I understand.

Balloons high up in the sky

Dee and his parents walk the other way pushing baby C.  Jay and I link arms and watch the balloons disappear into the clouds.  I imagine my mom’s soul flying like that on the day she died, finally free.

I look at Jay.  “I love you, Angel.”

“I love you Mum.”  We hug.

I look in the distance at Dee and his folks pushing Baby C.  Baby C, who is only 2 and a bit weeks old.  Jay and I reach them and we walk and talk, but not about mom.  Four generations walking around the park.  I do wish my mom could be here to celebrate Baby C with us, to push his pram around the park.  But she isn’t and I have to accept that.  I guess it is what one would call the circle of life and there isn’t a damn thing we can do about it.

Categories
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?

Categories
Autism Depression

When you miss a beat -Tuesday 15 May – 32 weeks and 3 days

I wake up with a start.  I immediately know that I have overslept.  I curse.  Bloody alarm.  I set it and it didn’t go off.  I know what is to come and I dread it.  I jump out of bed, as much as I can jump out of bed, and run to the laundry.  I grab the uniform, iron it and burst into JC’s room.  “Wakey, wakey, rise and shine,” I say as cheerfully as possible.  Maybe he won’t notice.

“What time is it?”

“It’s time to get up,” I reply, hopefully.

JC lifts his head and sees the light streaming through his blinds.  “Mum, it’s light!” he shouts.

“Well, I may have overslept a bit,” I say, trying to remain calm, “so up you get up and into the shower.”  JC himself jumps up out of bed and checks the clock in the dining room.

“Mum!  It’s ten past seven!  That’s it, dad can wake me at 5am when he goes to work.  Where is dad!”

The yelling, it’s the yelling that wears me down.  I avoid it at all costs especially as JC is now bigger and stronger than I am.  I don’t live in fear, per se, but I do live with some anxiety that things may possibly fly across the room.

“Dad’s at work, you know it is budget week and he has to be at work early.  Now, get in the shower, JC.”

“Oh no, I’m not showering, not now, it is too late.  I am meant to be woken at ten past six.  You are an hour late.  I know you were just too lazy to get out of bed.”

I ignore the hurtful remark.  “If you want your iPod any time soon, you will get into that shower.”

“That’s not fair.”  It’s the only leverage I have that I know will get him to do what I need him to do.

I have now lost my patience.  “Well, life isn’t fair!  Now get in that shower.  And make sure you use soap!”

JC storms into the bathroom and I hear the shower door open and shut with a bang.  I know he probably will not use soap and it is absolutely no time to remind him to wash his hair, since he hasn’t washed it in over a week.  I retreat to the laundry and put on some washing.

My mood is plummeting.  I have been feeling it for a few days now.  It’s that wretched mother’s day.  Mom was diagnosed with cancer around mother’s day and died 8 weeks later.  Now, I no longer have a mother to spoil on mother’s day and even now, two years later, I feel a great sense of loss.  Being a natural giver, rather than a receiver, means I no longer enjoy mother’s day.  The bombardment of “Happy mother’s day!” and “Mum, I love you.” all over the place is literally more than I can bare.

Dee came home last night to find me in tears.  He put his arm around me and asked what was the matter.  I felt silly saying that I missed my mom, that I missed her voice, the stability and evenness that she brought to my life.  Now, here I am missing her even more than when she first died.  I need her to listen to me download, to listen to how hard I find it sometimes, being a mother to a child with autism, my fears of his long term independence, my anger and sadness at my own sense of disappointment and loss of not having a normal child.

I hear JC emerge from the shower.  He shouts something at me, but I choose to ignore it, since I didn’t hear what it was.  I move into the kitchen and start making his lunch.  I go to pick up the vegemite and drop the jar on the tiled floor.  It shatters.  “Shit! Shit!” I say.

“That’s called karma!” JC shouts from his lounge.

My blood boils.  I storm into his room.  “You just show some respect!” I yell at him.  “The appropriate response is ‘Are you okay, Mum’!”  This is a futile exercise.  Children with autism, and especially teenagers with autism are extremely self-centred.  Not in the selfish the-world-is-all-about-me kind of way, but in the I-live-in-and-can-only-operate-in-my-own-world kind of way.  They have to learn empathy in the way we have to learn to drive, they aren’t born with it.  It is impossible for JC to see that I may have been hurt by shattered glass.

“You have to earn respect,” he says without looking up.

I’m human, and I have reached boiling point.  “Respect!” I yell, “Respect!” (just in case he didn’t hear the thunderous voice the first time around).  “I have earned that respect by being your mother, for carrying you for nine months, pushing you out with great pain, nurturing you and giving you as much love, shelter and care as any mother could give.  I have earned it by understanding your autism and fighting for you every single step of the way!  Oh, my boy, I have earned that respect!”

I know he isn’t listening.  Children with autism have a wonderful way of retreating into their own world.  He just says “karma” and retreats.  I walk away, knowing that it is pointless.  I broke his routine.  His routine that is so precious to him, as it is to all children with autism, and I disregarded it.  As far as he is concerned, I trashed his routine and that does not deserve respect, even when I explained to him that I did set the alarm and it didn’t go off.

I head off to the shower myself.  I am tired and I haven’t even begun my day.  As the warm water warms my skin I wonder about karma.  I head off down a self pitying train of thought of being a really bad person in my previous life to warrant a teenage pregnant daughter and a teenage son with autism.  I shake myself.  This is a dangerous road for me and I cannot go down it.

“Mum, are you ready, we need to go.”

“I’m just about done JC.  Five more minutes.”

We get into the car.  JC blares his music in his ears.  I listen to the radio.  Both of us are absorbed in our own thoughts.  God, I miss my mom.  “Have a good day at school.  I love you,” I say as JC alights from the car, as I always do, part of his morning routine.

He grunts.  “You know, I know you overslept on purpose.”

I smile, promise him that it was a mistake and drive off.  I get home and check the alarm clock making sure it works for tomorrow morning.  Missing that beat cost me, and JC, and I don’t intend to let that happen again.

 

Categories
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.

Categories
Autism Teenage Pregnancy

Trying to juggle it all – Friday 13th April – 27 weeks and 6 days

I have woken up very tearful today.  Not because of Jay, but because of JC.  Yesterday, I came home and he was in his underjocks, lying in bed in his darkened bedroom, reading.  He had not eaten the lunch I had put out for him.  Since I was early coming home from the hospital, I offered for us to go to movies.  He usually loves the movies.

“Nah, I’m good.” his favourite saying.

“How about a walk.”

“Nah, I’m good.”

“Is there anything you would like to do?”

“Nah, I’m good.”

“JC, you have to do something.  You have not left this house since you broke up from school.  Plus you have not really got dressed for the entire holidays.”

“Well, why do I have to, I am only at home.”  Guilt perforates my entire body.

“Well, let’s do something.”

“I don’t want to, Mum, how many times do I have to tell you.  Now, can you get out of my room.”  His room is in fact our other lounge, which he calls his room.  It is his sanctuary and he doesn’t like anyone else in it, unless you are capable of playing Call of Duty with some level of competence and I certainly don’t fit that bill.  I get up, walking out of the room feeling dejected.  Without warning tears stream down my face.  I worry so much about JC.  How is he going to cope in the real world.  I feel I am failing miserably at teaching him the life skills that are going to be necessary for independent living.  I wonder if he will ever leave home.  I wonder if we will be his carers forever, even though he is intellectually capable.  He refuses to do anything and try as we might, we cannot get him to budge on anything.

Communication is almost impossible with JC.  He has no desire to see his sister in hospital and literally lives in a world that is of his own making in a space that is probably nine square meters.  My mind is racing with all the possible outcomes life may have in store for him.  I feel I have neglected him these past two weeks, despite knowing we would not have left the house in that time.  I decide to try again.

“Do you want to go for a milkshake?”

“No, Mum, now leave me alone.”

Dee gets home and I am in tears.  “What is in store for us, what is in store for JC?   Dee he won’t even leave his room now, he is like a vampire sitting in darkened room.”

“I’ll talk to him, but when I am scratching his back, he will be calmer then.”   Dee received a back scratcher for christmas from Jay and it was honestly the best gift.  Now JC has to have his back scratched/tickled every night.  We realised quickly that this a sensory thing that calms him – he is most receptive at this time.

I retire to bed with my laptop to research PDD NOS and adolescent social skills.  A study I find says that around 50% of ASD adolescents are socially isolated, never leaving home and never being invited out by friends.  JC fits this perfectly.  They also are the most socially isolated cohort out of all people with disabilities.  I find this disheartening and not encouraging.

Dee comes in.  “Right I have got him to agree to go on holiday with us.”  Like he has any choice in the matter.

Still, I wake up this morning teary.  I phone JC’s psychologist on the way to the hospital.  “I am deeply concerned about JC.  He has now taken to not getting out bed and reading in a darkened room all day.  He won’t even come out for meals.  All he says is that he wants us to leave him alone.  I am so worried about him and his outlook.”

“I can’t see you without JC, Sarah, because Medicare won’t allow it.”  Damn!  JC refuses to see the psychologist any more and I have been advised not to push it.  “I can refer to you to other services.”  By now I am at Jay’s room and tears are streaming down my face.

“No-one seems to understand.  No-one knows how worrying it is for us and also how isolating it is.”

“I know Sarah and I am worried about your mental health at this point.  You need to see someone.”  No, I need to get support for my child with autism that won’t leave the friggin’ house.  I take the numbers down of the services and smile at Jay.

“What’s wrong Mum.”

“Just JC love, I worry so much about him.  I just wonder what his outlook will be and sometimes I just do not have the energy to fight him all the time.  My own depression doesn’t help.”  Jay nods, but looks worried.  “Don’t you worry, love.  it will be fine.  I’m just not having a good JC day today.  He is so isolated and it worries me so deeply.”

We change the subject.  “So, off to the clinic.”  I notice a heat pack on Jay’s tummy.  “Have you had pain today?”

“Yes, I have and some major tightenings.”

“Well, let’s keep an eye on them and then we can let Bec know.”

I take her downstairs.  It is still hot and stuffy and absolutely heaving with pregnant women.  Bec keeps us waiting quite a while.  Eventually she calls us into her office.  “You look well, Jay.  Nearly 28 weeks, who would have thought?”  Jay nods.  She does look well.

“Jay has had some pain today.  Should we be worried?”

“I don’t think so.  If baby is going to come, it is going to come.  You are in the best place possible.  But you do need your anti-D injection as you will be 28 weeks tomorrow.  Once you have had that, you can go back to the ward and I will see you, hopefully in two weeks time.”  Bec smiles and hugs Jay.  She is really fond of her.

Jay has her anti-D injection,  which she is surprised to report is painless, and we make our way for lunch.  It is not very nice.  I take Jay back to the ward and we watch a bit of TV.  I start to get tired and decide to head home.  JC is still in his pyjamas when I get home. It is 3pm.  Dee’s dad has brought JC lunch, so at least I know he has eaten.  I sigh.  I clearly have some acceptance skills to work on.  I contemplate ringing the referral people, but decide against it.  I am way too tired to retell our life history to yet another professional.  It can wait until Monday.

I am unable to sleep.  My mind is racing all over the place. JC wants to stay up late (again) and Dee is tired, so I again agree to stay up.  I don’t mind.  I cannot sleep.  Eventually at 2:08am I go to bed.  I realise that Jay has finally made it to 28 weeks.

As I fall asleep, I wonder if there is reincarnation and if there is, how it is that I got such a hectic life between all the death, alcoholism, autism and teenage pregnant daughters I have had to contend with.  What kind of action brought about this karma and am I clocking up good karma for the next life?  I am feeling sorry for myself, I know, but hey, it is 2am!!

I close my eyes and sleep finally comes to me.  Please, please let Baby C make it to at least midday tomorrow!!