The first recommendation given by a diagnostician will probably be ‘register with government disability service and the state autism organisation’. Sometimes even the registration process itself is daunting, and some families need more help. This is where ‘Family Advocacy’ comes in.

It is critical that the first person to speak to you as the representative of an organisation can open a door of hope.

Some agencies could throw a wad of paperwork in your direction with the instructions to ‘fill that in and get back to us when it’s done’. This is intimidating. What you need to know is that there is a ‘light at the end of the tunnel’.

This will happen if you find someone who has empathy and a positive outlook.

When I interviewed a representative of ‘Family Advocacy’ I found the first point of contact for many families was one of these empathetic people.

(The name of the person I interviewed has been changed.)

*                     *                             *                             *                             *                             *

Veronica George picks up the phone in her office at Bowden Street and a bright, bubbly voice ripples through the open-plan space she shares with one or two other advocates.

“Hi, you’ve called Family Advocacy and I’m Veronica. And what is it that can I help you with today?”

At the other end of the phone, a tentative voice spells out a carefully-rehearsed line. “Hello, my name is Jenny Smith, and my son, Jason, has recently been diagnosed as autistic. I’ve been told your organisation can help me. Is this right?”

“Yes. We can certainly help you. Tell me a little bit more about yourself, Jenny.”

Veronica is the kind of person who can put someone at ease. The lilt of her voice, the few well-chosen words, and the non-judgemental objectivity which somehow blends seamlessly with an aura of empathy and care are the hallmarks of a good listener and advisor. This is the kind of person Jenny needs right now, and this is the beginning of a supportive relationship that will remain precious in the eyes of Jenny’s family for a long time to come.

Veronica recognises the dilemma that many families face.  “The initial contact with this organisation is usually via referral from the ‘Disability’ arm of the Department of Family Services in South Australia. All of the funding for our work is dependent on this referral. When you talk to someone in that department it’s kind of like talking to an anonymous bureaucracy and it can be rather daunting.”

For all those who will go through this mind-numbing process of referral and search for help, I send to you my sincere wishes that you will find someone at the end of the phone like Veronica.

Emily, in her 50s, describes her son, in his 30s, as high functioning autistic. He is limited in his range of interests and activities, and has never been able to hold down a job for very long. He spends most of his time in the house in front of the computer. Emily has tried to find someone who will go with him on outings to open up some other possibilities of social activities for him. She is concerned that, when she dies, he could look after himself in a material way but is incapable of organising activities for himself socially. She has always done this for him.

She is interviewed as she goes around the neighbourhood sticking up posters advertising for a voluntary helper. About a month later she is again interviewed to ask if she has had any response from the posters. Sadly she has not.

She describes her next ploy, which was to visit local service clubs, council offices, the police station, and any other place she could think of where she thought there would be interested and willing people with community spirit. From among all these people in these different clubs and societies she was hopeful she might find just one or two kind people who can give an hour of their time once a week to take Scott to a local club where he likes to play air-hockey. Unfortunately at each approach, she was told that there was some legal or other reason her request could not be passed on or be supported. She was feeling despondent and upset that her community did not ‘have a heart’.

Out of the blue, a young man with a foreign accent turned up at her door one day. He had taken down one of her posters and kept it for some time before deciding that he could help. She couldn’t believe it. This gentleman had been unable to find a job since arriving in the country and thought that a voluntary position like this would give him the chance to give something to the community, and give him a sense of purpose at the same time.

He came regularly, even after he got a job, and took Scott to the club to play air-hockey. This worked very well for several weeks until one day Scott came home on his own without his companion. He told his mum that he didn’t want that man to come back any more. When Emily got on touch with the kind gentleman, she discovered that he had done nothing wrong. Scott had simply decided that he would be the one to choose his friends in future.

Scott had attended the club often enough, by this stage, for many people there to recognise him. He would go to the club alone, and several people who knew him would look out for him to see if he needed help.  Sometimes he was rude, but those who knew him accepted that this was just the way he was and left him alone for that night.

Scott is in charge of his own choice of friends. Perhaps Emily’s planning for the future worked itself out in its own way.

N.B. also see my post of June, 2011:       ’12 things you can do to plan for your child’s future today’

Check out http://weekly-times-messenger.whereilive.com.au/blogs/story/regrets-ive-had-a-few/

He started off by commenting on the paper’s recent ‘cutest pet’ competition and a particular miniature daschund  whose ‘slightly worried’ appearance made him appear quite endearing to anyone looking at his photo. A sad look in a dog, when we are also sad, gives us the feeling that our pet might be empathising with our pain. This is not the case, however, as a dog doesn’t have the capacity for human emotion. There is no way, for example, that a dog would feel regret.

Matt went on to discuss whether or not it is a good thing that we can experience regret. Is it a useful emotion? He referred to a book called Being Wrong, by Kathryn Schulz who argues that we should embrace our regrets and learn from them, rather than try to ‘put them behind us’ and pretend that the thing causing our regret didn’t happen.

He suggests readers take a look at a talk Kathryn gave entitled ‘Don’t Regret Regret’ which is available on ted.com. This is an excellent speech to an audience, and has much food for thought.

My own opinion is that if there is a particular choice you made at some time in your past that you wish you had not made, you can take control, not over the past, but over your reaction to it.

You wish it had not happened, but you can’t go back and delete it. However, you can learn to live with the consequences. Think through exactly what followed the act, and you will find there were choices that other people made too. What someone else says or does is something that you have absolutely no control over, so it is pointless worrying about it.

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• Don’t regret regret: Kathryn Schulz on TED.com (ted.com)

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Joe is an attractive man in his mid-30s. He enjoys life. He lives in a modern house in the southern suburbs of Adelaide with two ladies and two guys about his own age.   …   They are all disabled.

Joe and his housemates would not have the opportunities they do, and would not be able to enjoy life like they do, if it were not for the principles and ideals of social inclusion …  and the full-time support of paid professionals.

Joe is loved by his parents and his sisters. They call to see him often. They take him out for walks in the nearby park or to a coffee shop or a restaurant. His parents often have him stay over for a night or two at their house. During these times Joe might meet many people who have got to know him over the years. Even though he may not recognise them, they will say hello and welcome him into their community.

Joe goes out each day to a variety of activities provided by a ‘Day Options’ service organisation. The staff find him easy to get along with and he generally participates quite happily in the activities they provide for him.

Members of his house staff think that Joe is a delight to have around because he is so cheerful. He helps with chores around the house, like taking the rubbish out to the bin, hanging up clothes on the washing line, and peeling and cutting up the vegetables for tea. But their relationship with Joe is more than just the help he can provide: it is a fondness for his lively spirit.

Many people go about their daily lives unaware of the great number of individuals in our community who live with a profound disability. But more and more people are now coming across those individuals in their daily lives. There will be groups at the local coffee shop or movie theatre. A disabled man or woman with a carer might be seen strolling down the aisle in the local supermarket, having a cup of coffee together or sharing the simple pleasure of a stroll in the park.

Joe might be seen walking with a friend along the footpath in your local community. You will probably recognise him. He’s tall and attractive, well dressed and clean-shaven, and he walks with a purpose. It’s probably not the ‘purpose’ that a businessman or tradesperson of a similar age might display as they stride along the street, but he has his own purpose. He enjoys the rhythm of walking, the sound of his footfalls on the concrete path that he accompanies with a happy humming sound. He has a smile on his face.  He enjoys life. It is this very fact that helps those he comes across to enjoy their own lives a little bit more for having met him.

What would our lives be like if we could not see and share an enjoyment of life expressed by people like Joe?

One mother tells of her deflation and despair as she left one particular meeting with a service provider. She had entered the meeting with the hope that it would provide a useful option for her son. She left feeling guilty.

Unfortunately, the official representing this particular department carried a load of guilt of his own.

The service was unable to provide the option she had requested. Instead of explaining in objective terms how the department’s funding source specified definite parameters, and thus prevented them providing this particular option for her son at this time, the officer chose to play on the mother’s guilt in order to mitigate his own.

“How can you ask this for your child when there are so many others, in a much worse position than you are right now, who desperately need this kind of help?”

These are the actual words used by a department official to someone who approached them for help. There is no objectivity here. These words come from the point of view of someone trying to hide behind his own feelings of inadequacy. These words should never have been spoken.

But how could this mother have countered the comment?

There is a way. … She could request an objective assessment of the situation: one that makes no reference to the insinuation of guilt.

In a service whose mandate is to maintain the dignity of those less fortunate than others there is no place for personal judgements. Character slurs can only serve to highlight a gaping hole in the ‘service’.

People who use personal slights or innuendo in order to opt out of making a commitment on behalf of their organisation should have no place in that organisation.

There is no place for guilt in the disability service sector.

A carer’s own guilt may be hidden under a mantle of ‘care’, stoicism, heroics or martyrdom. It may not be recognised in the rush of multi-tasking and ‘getting things done’ from morning until night, but in the quiet time of self-reflection, just before sleep, it might rear its ugly head.

The carer, about to flake from sheer exhaustion at the end of a long day, experiences a flash of self-rebuke. She remembers some small detail of a task she set herself that has been overlooked.

She rationalises.

“My child needs me. He can’t cope on his own. I must remember to see to that detail tomorrow.”

This is the seed of guilt.

Does she recognise it? Does she see that her perceived need to mother and care comes at a price? That price is her personal growth. Her self-acceptance.

Someone outside the small circle that she has created for herself and her needy child might recognise the role she is playing: from outside, they might see she is performing the role called ‘victim’. … Another person cannot hold up a mirror for her. … She must do this for herself.

Each person is ultimately responsible for his or her own behaviour.

In the quiet of the night-time the mother might imagine herself hovering above a scene being replayed from earlier in the day. In her interaction with her child she hears herself speaking, “I know you can’t help being who you are. It is my job to do the things for you that you can’t do for yourself. I love you and I will always be here for you. You are my focus and all that I live for …”

Is the child always to demand so much effort from her? Is this fair? Isn’t there more to this mother’s life than sole dedication to the needs of her child?

Yes.

There is more to life than this. A mother of a disabled child does not have to feel this way. This is guilt talking.

Any and every mother needs time to foster relationships with other members of her family: her partner, her other children, her own parents and brothers and sisters, and her friends.

Mothers, carers, don’t block out the genuine feelings others have for you and your child. Allow others into your life, and allow them into your child’s life. In this way both you and your child will gain a valuable opportunity to grow.

There is no place for regret or guilt in a positive relationship. 

Play and have fun. Don’t take life too seriously. Although we all have responsibilities there’s no reason why we can’t approach much of our lives in a playful manner. In fact, those who do so will undoubtedly be happier.

Be curious. Constantly search for new ways to be happy. Keep a look out for new ways to approach life and to have fun.

Invest time and energy in to your key relationships. Happy people spend more time working on and in their relationships. Happy people tend to be more supportive of other people in their life. Happy people are more generous and altruistic.

Socialise and interact with others as much as possible. Happy people have both more and better quality relationships. So as well as working to improve the quality of your relationships it’s also worthwhile working to improve the number of your relationships.

Manage your time and priorities. Happy people tend to believe they’re more in control of their lives. In doing so, they’re more likely to take an active approach to solving problems. If something’s not quite right in your life, do something. And further, make sure that what you’re doing is important. Put first things first.

Control what you can control. Accept what you can’t control. And learn to be wise enough to know the difference.

Live in the present moment. The author, Henry Miller once said “Every moment is a golden one for him who has the vision to recognize it as such.” The only moment in which we can truly be happy is the present moment. The only moment over which we have control is the present moment. So be happy now! Because if not now, then when? 

Don’t live with regrets. What’s done is done, and cannot be undone. Live with what has happened and focus on ways to change things for the future.

“What other people think of me is none of my business.” I am the one who has to live with myself. When I accept myself as I am, others will accept that is the way I am. If they appear to want to change me, that is only my interpretation of their actions. I can’t change anyone else’s beliefs or their actions, only my own.

I am a quiet man who smiles a lot and is generally happy. I like to click my fingers and I sometimes hum. I use eye contact and I listen to what people say, but I usually prefer to be by myself.

My younger years: …..When my family lived in New South Wales, I went to live at Brush Farm in Sydney when I was 5 years old. I have lived in group homes since I was about ten years old. I went to school at the Autistic Children’s School in Forestville, Sydney, until I turned 16.

My later years: ….. I did a little supported ‘work experience’ but I generally did not have any organised day activities for many years. I had holidays with my family a few times every year. I moved into …. in 2008. I have attended … Day Options for four days a week since then. And I see my family much more often now.

People and relationships that are important to me …

My mum and Dad, ……. , are very important to me, as are my sisters, ….. I stay at my parents’ house for the weekend often, and we go away on holidays together about three times a year. I look forward to my parents coming to get me, and will look out of the window for their car if I have been told they are coming.

What doesn’t work for me …..

I don’t ‘socialise’. If someone can get me something I want I might tap that person on the arm and look at them. Otherwise people aren’t very important to me.

Medical-looking places are a turn-off to me. I won’t go inside a dentist’s room or a doctor’s room. The doctor needs to see me in the waiting room or outside in the parking area.

I don’t like it if someone says I have done something wrong. (Please just tell me what to do next: I have some control over that.)

Important things to consider …

When talking to me about what is planned … look at me and explain what is going to happen and the order things are likely to happen. Use objects to help me understand. If I am anxious about this, keep reminding me what is happening, and tell me it is all right.

When I go walking along a footpath with a carer … I am likely to collect leaves from trees and bits of grass as I walk along. I will then look for a place that has long grass, and I will pull some up and make a pile, and then deposit my collection on top of it before I move on.

When I go for a ride in a car or van …. I do up my own seat belt and I like to make sure everyone else has their seatbelt on too. I sometimes like to have the window open. I love going for drives.

Other information ….

Activities that I like: … Swimming, bush walking, the beach, tenpin bowling; cooking (with support), looking through magazines, listening to music with a strong beat, shaking small objects through my fingers, and rug hooking. If I watch TV, I prefer cooking shows and outdoor extreme sports, especially surfing, or funny shows with animals and ‘funniest home videos’. I also like mowing lawns, because I can play with the lawn clippings afterwards. I will put the kitchen rubbish bag into the outside bin, and help with hanging out clothes and bringing them in.

Activities that I do not like: … I am wary of dogs (although, given time to get used to each other, I will play with a quiet dog). I don’t like crowds of people, but I will hold someone’s elbow if I need to get through big crowds.

I need some help with … shaving, last minute dressing e.g. making sure my belt is done up at the right spot.  I can shower independently, but need some help to dry myself properly. I can clean my teeth independently, but need some help brushing them on the inside.

I don’t need help, generally, with … dressing myself (I leave my shoelaces done up)

I go to bed around 8-9pm (I sometimes choose to sleep with the light on)

The way I communicate …. I communicate with people in lots of different ways, but people need to know me a bit to recognise that I am communicating with them when I do certain things.

When I look back at that time of my youth and naivety, I see  a young mother only recently removed from her home town, thrown into a different environment thousands of miles from the family who had supported her  and provided everything she ever felt she needed. I was the innocent who  trusted others completely to do the right thing. I also see a young woman totally unaware of the emotions that would engulf her when it dawned on her
that other people she came across, no matter how caring they appeared, did not hold her or her son’s interests as paramount.

When I was entrusted to look after this new life that had launched itself into my care I had no idea how much I would need to learn.

When I began to discover that my baby was different, and that things would be different for me and my son compared to what other families experienced, I began to walk a path toward becoming a new person. I had to learn to stand up for myself, to state clearly and with conviction what I want and, most of all, what I wanted for my son. Over the years I have learned to notice when things aren’t right. I can now say “Hey, something needs to change here, because my son is not being given a fair go.”

The day I became a mother I never realised what simply being a mother would entail. I never knew then that it was not the special moment of connection soon after birth between mother and son (because I never had that) and it is not the period of time when a child attends school and needs help with transport to sporting activities (because I didn’t have that either). Being a mother is the feeling I get when I see a sparkle it my son’s eyes, hear a
chuckle or a singing kind of sound in the back of his throat, and see him clicking his fingers in a way that says “I’m happy.”

The day I became a mother I never knew that I would feel so wonderfully content when my grown son smiles and hums to himself when we go for a walk together. And I never knew that I would feel a mighty stab of concern when I hear him make a noise indicating sadness or anxiety, or see him act in a way that shows fear. I never knew then that I would be capable of anger: the kind that comes when I recognise something is not going right for him and that this something can be fixed; the kind that comes with a conviction and drive that that makes me speak up loudly and fight for his rights as a happy and independent human being.

Mine is the voice of someone who was in a similar position to Anthony and his wife, Kathy, over thirty years ago. My son is now 35 years old and remains non-verbal but can interact with his immediate environment, with a high level of support, in his own generally happy and placid way. I am piecing together, bit by bit, a series of stories from the journeys of those who have become successful advocates for their autistic sons, daughters, grandchildren, etc. I applaud Anthony Macris’ work, and can only hope that my book, when it finally comes together, can realise some small part of the level of empathy and exposition that is displayed in his book.

This is a very special story, and I highly recommend it to anyone who wants to understand what it is like to live with, manage the day-to-day frustrations of, and dares to imagine real hope for the future for an autistic child.