Max in Three Words

2012

Max speaks robotically. Uses three words. Three word phrases. Our journey began. Twelve years ago.

I cannot abort. Richard will stay. He loves me. A son arrives. He looks old. A little man. He is wise. I think so.

I’m twenty-three. Months go slow. He grows slowly. Grows too slowly.

We are referred. A specialist needed. They take blood. Max cries out. I can’t watch. Max stops crying. I start crying.

A deviance found. A chromosome abnormality. A geneticist required.

Six weeks later. Geneticist sits still. Richard walks in. Geneticist tells us. Your son’s unique. One sex chromosome. X partially deleted. Y clinging X. One chromosome less. Less than normal. The full meaning? We don’t know. No others recorded. Growth probably slow.

Doctor is swift. Off we’re sent. Max in arms. He looks normal. He is pretty. My little baby.

Referred to physio. Six weeks waiting. The therapist arrives. Starts her training. Makes some suggestions. Suggestions for me. She’s training me. Suggests quitting work. Staying with Max. All day long.

I quit work. It is autumn. The sun outside. Baby in arms. The room dark. Inside we sit. It’s cold in. The heater’s on. A dull glow. The therapist arrives.

Back to training. Her words robust. Exercises for Max. Show him everyday. Stop the heater. It’s warm outside. Then she leaves. We are alone.

24 years old. My work transformed. Mother of one. I’m a trainer. A speech therapist. An occupational therapist. Even a dietician. Just to one. One little boy.

He cannot speak. I cannot move. His head floppy. My head full. The couch indented.

Richard marries me. A wedding day. A naming day. Maximus officially named. A big name. Very little tuxedo. We all celebrate. They go home. We go home.

Richard’s at work. We’re alone again. Max and I.

The banging begins. Max is banging. Smashing his head. Smashing between everything. Head to floor. BANG BANG BANG. Smashing between feedings. BANG BANG BANG. Between physio visits. BANG BANG BANG. Between the walks. BANG BANG BANG. Refuses to eat. BANG BANG BANG. Starts to smile. BANG BANG BANG. Beautiful blonde curls. BANG BANG BANG. Tiny little body. BANG BANG BANG. Bruised third eye.

I distract him. Create constant diversion. We go out. He enjoys outings. Especially the park. But everyone’s curious. The opening question. Always the same. What’s his age? I continuously lie. He’s fourteen months. I say seven. I walk away. They can’t understand. Why so little? Explanations are arduous. I save definitions. Definitions for friends. Only for friends. Family and friends.

They console me. They assure me. You are strong. It will change. They are wrong. Or am I?

Max starts singing. Still can’t talk. But he sings. Sings with tone. Sings with melody. I sing back. We have communion. We don’t talk. We can sing.

It happens again. I am pregnant. Choose to scan. Eleven weeks gestation. Needle penetrates uterus. It’s a girl. All chromosomes present.

Willow is born. Willow grows fast. She learns fast. She is big. Bigger than Max. Max’s big sister.

She is one. Max is three. Max can crawl. Max can sing. Max can bang.

He’s banging again. An afternoon tyranny. Television goes on. It’s ABC time. Max is banging. Willow’s watching playschool. Max is banging. Willow’s watching Elmo. Max is banging. Willow’s watching Wiggles. Max is banging. Richard’s at work. Max is banging.

Is there help? Can anyone hear?

A psychologist arrives. A behavioural psychologist. Max is surrounded. The fort built. In the portacot. Four walls surround. Tall foam walls. A safe place. A soft place. Big soft prison. If he bangs. He goes in. He can’t escape. Is this right? Things are blurry. Did it stop? I can’t remember.

Max is growing. Growing very slowly. Max is singing. Avoiding eye contact. Starts saying words. Yells out WATER. Names it CUP. It sounds robotic. Everything in monotone. He talks mechanically. He sings melodically.

A special day. Max is happy. Makes eye contact. Looks at me. Strings three words. I love you. Is he copying? Are they mine? His first three. First three words.

Four years old. Max starts walking. A vertical world. Max bangs less.

He becomes louder. EEEE EEEE EEEE. The sound between. IT’S A HELICOPTER. EEEE EEEE EEEE. MUMMY GET BREAKFAST. EEEE EEEE EEEE. MUMMY IS GOING. EEEE EEEE EEEE. SAY HELLO MAX. EEEE EEEE EEEE. Parrots around me. Quiet amongst others. Beside the between. EEEE EEEE EEEE.

Most don’t know. Think him stupid. He ignores them. Mostly he’s ignored. Only a few. Just a few. Try to interact. Aunty asks him. What is that? She expects nothing. Max answers her. IT’S A STETHOSCOPE. Her mouth drops. Yes it is!

Doctor calls again. Max is labelled. At five years. Max is autistic. It is severe. At the appointment. Max cuddles me. Cuddles me tight.

Is it night? Is it morning? It is dark. It’s 3am sharp. Max cries out. MUMMY CUDDLE ME. I am awake. I’m always awake. He gets louder. MUMMY CUDDLE ME. I struggle in. We snuggle close. He holds tight. Won’t let go.

Max cuddles me. Willow wants cuddles. Both hips occupied.

He plays alone. Willow is confused. Tries his games. Flaps her arms. Taps on plates. Bangs her head. Not much fun. Willow plays alone.

Willow starts talking. She laughs loud. She copies him. MUMMY GET BREAKFAST. She sounds funny. It is cute. It is worrying.

Decide on three. Sister for Willow. Someone to play. It is best.
Cadence is born. She is perfect. Max is seven. Willow is five. We are five. A family unit.

I am thirty-one. Things get blurry. I can’t hear. Where is Max? Where is Willow? Where is Cadence? Are they real? Nothing seems real. I am scared. What’s the time? Where’s the sugar? Can’t stop crying. Ants are crawling.

In my ear. Willow’s soft voice. Don’t cry mummy. You’re not alone. I can’t stop. Don’t feel real. I barely hear. I can’t remember.

I am labelled. It’s situational depression. A psychological derealisation. No fucking joke.

I try everything. Yoga doesn’t work. Walking doesn’t work. Throw the book. Affirmations don’t work.

Thoughts keep bombarding. I feel unworthy. I feel unsafe. Nothing underneath me. I am falling. So I surrender. Accept the advice. Take the pills. Start to function. Brain wakes up. I can hear. I can remember. Happiness is elsewhere.

Start marriage counselling. Find out statistics. Married with autism. A sobering rate. Ninety percent failure.

Ten years together. Ten percent success.
Start separation counselling. Who to blame? Guilt is insidious. Anger is sadness.

Move to Holyrood. Holyrood Street Hampton. Two-bedroom unit. Tell the kids. One week Holyrood. One week Sandringham.

It’s my week. Max’s first week. He arrives home. Off the bus. He yells loud. MUMMY’S IN HOLLYWOOD. I speak softly. It’s Holyrood Max. He yells louder. MUMMY’S IN HOLLYWOOD.

Two years later. Richard is remarried. Cadence starts school. I start university. I study Psychology. I study poetry. I write poems. Read them loud. I am loud.

A lesson ends. I go home. On a train. Back to Holyrood. Holyrood Street Hampton. My week on. It’s four o’clock. The bus beeps. Off he comes. Into my arms. I carry him. Even at twelve. Still so little.

With big voice. He yells out. MUMMY’S IN HOLLYWOOD. The driver smiles.

It’s 3am sharp. Max yells out. MUMMY CUDDLE ME. I cuddle him. Cuddle him back. Back to dreams. Return to bed. Snuggle the girls. Then I’m awake. It’s light outside. The sun’s up. From

my room. I hear laughing. In his room. He is happy. I wander in. I smile softly. I lie down. I ask softly. Max cuddle mummy? Max cuddles me.

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A Moratorium on Identity

 

The roadshow sized screen at front is framed by flowing black curtains. It’s May 2017 and I’m sitting in one of the sleek red chairs of the Carrillo Gantner theatre at Melbourne University. The space made for 500 is dotted by about 200 students. I place my bag in the empty seat beside me. The slide says:

The Lecturer’s hair is tied back neatly. She looks in her late 20’s. Under her black blazer, she wears a grey and black top. Her top matches the walls and carpet that cascade to meet her where she stands on polished floor boards. Her manicured eyebrows lift and lower over her specs as she enunciates her words precisely, ‘identity statuses are separated by two questions: do I commit to an identity, or do I explore different identities? People in the foreclosure status are committed to an identity without exploration. The opposite is moratorium status, where you explore multiple identities prior to commitment.’ She smiles, ‘and finally, when you’ve explored multiple ideas and made a conscious commitment to one of them, you have identity achievement.’ I laugh out loud. A young student nearby looks at me.

I leave the lecture a little flushed and head towards Lot 6, my favourite café on campus. I order a coffee and sit at a table outside. Students pass by in all directions. I laugh to myself, ‘I’m fucked’ I think, I’m 40 and haven’t reached identity achievement status.’

Who am I? And what can I be? Questions that, according to psychosocial developmental psychology, are chiefly for adolescents and young adults. As a young adult, I accidently got pregnant. In the year 2000, my vision of working in Nepal as a white-water rafting guide went out the window. When Max was diagnosed with a rare chromosomal abnormality many more dreams went out with it. I became Max’s full-time carer. Up until seven years ago I accepted ‘foreclosure’, I was a wife, mother of three and a carer of a child with severe autism and global developmental delay. But I couldn’t weather it all. In marriage counselling, I told my husband, ‘I can’t go on looking after everyone, someone’s got to go, and it can’t be the kids.’ He remarried two years later. My identity as wife deleted.

When my youngest started school in 2013, I started university. A new age of identity exploration ensued. In first semester, concerned by the funding cuts to tertiary education, I joined the Education Action Group. ‘Maybe I’ll be an activist’ I thought. I even took to the megaphone giving a speech on the steps of the State Library. Naïvely I assumed the group was open to all people who weren’t happy with the cuts; It soon became clear that campus Socialist Party members out-numbered the rest. When it was suggested that we storm the Myer department store and burn an effigy of Julia Gillard, I said, ‘I quite like Julia Gillard.’ A little disillusioned I gave up the mega-phone and quit attending meetings.

In my second year, I liked the idea of Indigenous studies; ‘maybe I could become a policy writer’ I thought. In the first unit, called Aboriginalities, we were given an essay question on Belonging to Country? With naïve understanding of Indigenous identity, I took the question to an Aboriginal Elder from Western Australia. Rumours in my family indicated possibility that I might have Indigenous heritage, as such I had tended to romanticise my connection to Country. I asked the Elder ‘if a Non-Aboriginal person discovers Indigenous heritage, would you consider them to belong to Country.’ He told me his Scottish grandfather served in the Scottish military and asked me to consider whether that meant he was entitled to march in the Edinburgh Tattoo. I asked if he thought he was, he answered, ‘I don’t know, you tell me.’ After one more unit of Indigenous Studies, I became overwhelmed by the complexities of Aboriginal policy. That year I realised I did not want to be a policy maker.

In my third year, I locked in my majors – Creative Writing and Psychology; ‘a poet and a counsellor,’ I affirmed.  At home, the routine continued as normal: changing Max’s nappies, cooking dinners that the kids complained about, and sometimes missing them when they were at their dad’s. I filled every second weekend either catching up on studies, bushwalking with my boyfriend or going to open mic poetry.

In my fourth year, I decided that I wasn’t the only budding poet in the family. Max likes the sound of words, and his voice is unique, so I put his rhythm to the page and argued for The ‘Special Needs’ of Poetry. I handed the collaboration in as my folio for third year poetry, and even took Max to recitals. Before his third recital, I asked, ‘ready to be a poet again Maxi?’ to which he answered in his robotic but lucidly loud style ‘NO THANK-YOU MUMMY.’ I returned to going to recitals alone.

Five years in at university and I’m due to graduate with a Bachelor of Arts next year. If I continue at this rate, my aspirations of becoming a psychologist will take another seven. While this finish line is frustratingly far, an ending of a different kind is looming. Next year Max graduates from Bayside Special Development School. Even though he looks and acts like a small child, in 2018 Max turns 18 and will officially be considered an adult. As such, he must leave his home away from home, a school that has housed him since he was two. He loves it and is loved there. On school holidays he regularly asks, ‘MAX GO TO SCHOOL?’ I don’t know how leaving will affect him. Max is a person of routine. When the routine changes, Max gets anxious, this leads to head banging and vomiting bouts.

The thought of Max’s graduation makes me bite my nails, and on top of this change, the National Disability Insurance Scheme (NDIS) rolls out in our region next year. In theory, this should mean greater opportunities for Max and more respite for me, but so far, I have found the details of the NDIS confusing and overwhelming. What seems to be clear though, is that it will be up to me, as Max’s carer, to study the fine details and advocate for his wants and needs.

Will the NDIS mean that ‘moratorium status’ is open for Max? if so, what does Max want to be?

…

A week later I’m in the Jan Lake Conference room at Bayside SDS. The modest room is lined with rows of blue seats, the carpet is blue, the vice principal Tania is wearing a blue dress, today’s presenter Debbie has a blue top over blue polka dot pants and Max’s step-mother, April is in the front row wearing a blue jacket. April is sitting next to Richard, my ex-husband and I am in the third row with two empty seats between me and another carer.

Tania hands out manila folders packed with NDIS information. A dozen parents are seated with a few more rolling in as Debbie begins the power point presentation. Debbie’s kind voice is motherly in tone. She makes eye contact with several parents then says, ‘Who’s absolutely excited about the rollout or nervous or knows nothing, or, has buried their head in the sand?’

‘All of the above,’ answers a father from the back row. The room erupts in nervous laughter.

Debbie’s from the Association for Children with a Disability (ACD) and has a 19-year-old disabled son herself. She tells us that ACD is run by parents and siblings of people with disabilities. I wonder if all the parents and the siblings get paid for this work. Her second slide shows manuals ACD produces titled Through the Maze and Growing Together. I’m taken back to the early days when I was trying to find services for Max and my family. My stomach tightens.

‘New terminology under the NDIS is “participant” instead of “client” for the disabled person, and “nominee” instead of “carer” for you guys. Wording will be the trick.’

I think to myself how wording always seems to be the trick in getting services. Should I introduce myself as “nominee” now?

‘Eligibility for the NDIS is based on functional capacity.’ Debbie says, ‘If you’ve got a psychiatric illness you are eligible, but, now while my partner would say I’ve got a psychiatric illness…’

The room breaks out into laughter and a mother in the front row says, ‘Every partner says we’ve got a psychiatric illness,’ the laughter takes an uncomfortable tone then quickly peters out.

‘In all seriousness,’ Debbie says, ‘while depression is very very high amongst carers, it’s not deemed eligible under the NDIS.’ I think about the pill I swallowed this morning and wonder how many others in this room share this daily ritual.

After reels of information that make my head want to explode, Debbie reads out an inspirational quote to finish the lecture:

A grey-haired father says, ‘I’m just thinking about transition. Our daughter has one year left at this school. We’re perplexed about what we’re gonna do when she leaves?’

Mara, a long time Bayside committee member adds, ‘I know how you feel, Matthew finishes this year and I’m terrified. It feels like an abyss,’

‘Ok, so you both need to think about what THEY would like to do. Forget about the standard adult day care programs, you can see what they offer, but your kids might like things different.’ The room is silent for a moment. ‘It’s hard to think about it, I know. I think It’s gonna be very stressful for anyone that’s rolling onto the NDIS at the same time as they’re leaving this school. You’re going to go through a whole lot of grief and loss because you’re losing a community you know and trust. I was there a couple of years ago. Someone told me just the other day that they saw my son Michael at the pub in Warrigal. I said “yep, that’s what he does on Tuesdays now; they all catch the train and have lunch in the sports bar, just like other normal 19-year-olds.”’ I squirm in my chair, Max may be turning 18 next year, but he has the body of an 8-year-old and the play desires of a two-year-old. I can’t see him enjoying himself with the ‘lads’ down at the sports bar. By the look on her face I’m not sure Debbie is comfortable with this for her Michael either. ‘At school, you know your kid is going to be alright,’ she says, ‘Then suddenly they’re adults and you’re in the big wide world. All I can say is good luck!’

I hear Richard clear his throat. He arches his back into his seat. Debbie scans the room but no-one has any more to say. She thanks us and a gentle applause concludes things.

I go sit with April and Richard. I feel like I’m speaking at them at a hundred miles per hour. I overshare my anxiety in relation to Max’s transition and the grief it’s pulling up.

‘I guess I just don’t have that connection to grief.’ April says calmly in her Californian accent, ‘I feel this is exciting for Max.’

I take a breath, ‘Yes, it is exciting,’ I say while staring at the blue carpet, ‘but it’s going to require lots of management.’ I look at April, ‘Are you coming this afternoon?’ I organised an appointment at Bailey House weeks ago – an adult day program that I told Richard is a viable option for Max when he leaves Bayside,

‘Yes, I’ll be there’ April says.

We all stand, they are both over six-foot-tall and tower over me. Richard’s in his suit jacket, April’s more casual, but well dressed and tanned from their recent trip to Port Douglas. We continue with some small talk for a few minutes, then I excuse myself to ask Debbie a question. April says, ‘See you at two Bec.’ They walk off holding hands.

…

 in Max’s bed, a few nights later, I read him his favourite bedtime story, Big Bad Bunny. Afterwards we snuggle. I ask him, ‘What does Max want to be when he grows up?’ He is silent. ‘Does Max want to sail boats when he grows up.’

‘NO THANK YOU MUMMY.’

‘Does Max want to be a fire fighter?’

‘NO THANK YOU.’

‘Draw picture books?’

‘NO.’

‘Be a zoo keeper?’

‘NO.’

I run through more options and Max continues with short sharp ‘NO’s. I exhaust the list and finish with, ‘Does Max want to relax when he grows up?’.

‘WANT TO REEE-LAX.’

‘Max wants to relax!’ I say with a laugh, wondering if he just wants to shut me up.

‘REEE-lax.’ he giggles.

‘REEE-lax’ I repeat and kiss his forehead.

 

After school drop-off the next morning, I power stride it to the local beach. I slow near the water’s edge, a seagull is leg-deep in, with what looks to be a small fish hanging from its mouth. I go to inspect but the bird flies away on my approach. I find a patch of dry sand and sit. The cold sand under me contrasts with the warm autumn sun on my back. Mild wind blows on my face as I watch a fisherman at the end of the pier caste his line. A swimmer passes by, freestyling fast against the current. He begins to tire and breaststrokes towards the pier. When he arrives, he stops, stands in the water, faces the sun and places his hands on his head.

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