Conversations with Alex

My son Alex has just turned twenty-six years old. He is polite and amiable. He loves cooking and is a volunteer at the Warehouse Cafe in Shenton Park. He is studying for a Diploma in Hospitality externally. He also attends Perth Bible College, to become a well-rounded person with better communication skills. His words.

He has lived by himself for eighteen months in a privately rented unit in Yokine. He has just been offered a unit through Homeswest after a marathon eight years on the public housing waiting list. He is delighted and can't wait to move in. This will hopefully be his "forever home" at a rent less than through the private market.

He attends personal training sessions at a Perth gym, attends church and young people's groups and has a busy social life. He studies at home for his Diploma most Fridays. He is an earnest young man with a very positive manner.

He also has significant health issues and a diagnosis of autism. When I talk about Alex, I am very aware that some may view my comments as "inspiration porn". I am very proud of his achievements as I believe he has overcome many obstacles to become the fabulous young man he is.

I am also very proud of my other children. I continue to be thrilled that somehow I produced a ballroom dancer such as Callum. He also has a gorgeous partner (my intended daughter-in-law), their own home and my grand-cat. Vanessa is about to complete her Masters. She taught for three months in a very isolated part of China (she was the only European in the town). She is a talented artist and a tenacious researcher.

The world is not a fair place. I would be ecstatic if disabled people were able to live as they choose. But to quote Stella Young - "no amount of wishing will turn that flight of stairs into a ramp". So I was relentless in moulding (?), shaping (?) or altering (?) Alex's behaviour so he would be fit better into this world as I see it. And Alex responded. Between June 1995 and February 1998, Alex underwent an ABA programme using Discrete Trial Training techniques. Most weeks, we averaged between twelve and fifteen hours one on one with his therapists. We added occupational therapy, speech therapy, physiotherapy, play therapy, day care and then pre-primary to his programme. In June 1995, Alex was non-verbal, was not toilet trained, couldn't dress himself, feed himself, did not sleep. Two and a half years later, he was ready to enter Year 1. Did he appear to suffer? On the contrary. Alex appeared to blossom, to develop a sense of humour, to be able to express fear, to tell me if he was sick and play with his pre-primary classmates.

So, am I encouraging "inspiration porn" when I am thrilled at my son as he is today? This is a fine line. Who Alex is, what Alex does, how Alex lives should be accepted regardless of his level of functioning. In my experience, this is not the case. And so, I am caught between celebrating Alex as he is and encouraging him to behave as mainstream society would have him.

And Alex's essence, his soul, his humanity is unchanged. He is less frightened by the world. As I see him, this is a wonderful by-product of ABA. He is more confident. more adaptable and more comfortable. He is also bolshy, opinionated and exceedingly stubborn. That was evident long before ABA. Alex and his autism are intertwined. And I would not change that connection, even if I could.

Which brings me to the subject of this post - conversations with Alex as he emerged from silence. Our earliest chats were usually one-word replies from him. "What did you do today, Alex?". "Jigsaw". Or watching him playing with another child "Catch me! Catch me!" Or driving with him - "Mother is that driver a lady or a man?" "A lady, Alex". "Then why does she have a moustache?" Or telling his first joke in therapy when our dog stuck her big head between him and his therapist "Sophie is not teacher!" and bursting into repeated peals of laughter. Or a mind blowing moment - "I remember when I was four". "What was that like Alex?" (He was non-verbal at four) After a long pause "It was really hard".

Last Friday, in spite of an incredibly stressful day, we still managed to have marvellous conversations. He chatted about a church conference he was going to attend on the weekend. "Alex, you can celebrate your Homeswest unit!" "Mother it's a conference. I can't celebrate" "Why not?" Further food for thought. And then, talking with Keryn, the Homeswest goddess - "I shall probably go to heaven on Alex's shoulders" "You can't Mother" "Why not?" "Because you haven't given yourself to Jesus".

From Alex's point of view, that was a fair comment. However, in this real world, anybody not associated with Alex's church could question his beliefs. And to give him credit, he did not kick up a stink when I disagreed with him.

I told him I believed in Jesus, that I though Jesus was a pretty cool dude, that he saved the day at the wedding in Canaan, that he provided for some additional guests at a picnic (with a few loaves and fishes), and that he helped the sick, the poor and the vulnerable.

And, God bless him, he didn't contradict his nutty mother. And he was able to understand my answers, even if he didn't agree with me. And although the day was very very intense, Alex remained reasonably composed. In the Homeswest office "Mother needs a drink of water". No, I actually needed a wine. But he considered me before himself and I was very touched.

I suspect that there are some "neurotypical" young adults that would not have the same consideration as Alex does for me.

And yes, I think of Alex as a superstar.