Autism : From the Inside – Chapter Seven

Before they started working with Ian, I asked each of the tutors to read the Catherine Maurice book that both Neil and I had read. Once they had done this, they understood our motivation and were happy to accept that we believed our child’s behaviour could be changed.

Ian’s weekdays were divided into blocks, and the hours shared out between the tutors. Having read that the ultimate aim of an intense therapy programme was to give the child as little time as possible during the day in which to be autistic, so that behaving in a non-autistic manner would become his life-habit, we set about arranging as full a timetable as we could manage. With a constant stream of people supervising Ian’s behaviour, his autistic mannerisms – his hand flapping, shrieking, hitting out and throwing objects, and his complete withdrawal from the world should – should – be reduced, maybe even phased out altogether.

The tiny glimpses we had had of the Ian within the autistic everyday Ian were so special, how could we not long to have this beautiful clear-eyed angel with us all the time? 

With this goal in mind, we organised virtually every second of Ian’s day and the dedication of the tutors in helping us to achieve this was extraordinary.

Ruth committed herself to spending two hours with Ian every weekday between the hours of 11am and 1pm. Both Tania and Anita spent an hour with Ian every weekday at different times, and Kirsty spent two hours with him, three times a week, Monday, Tuesday and Thursday. I spent time with Ian during the week padding out the hours, and over the weekends as well, to keep the momentum going. Between us, we managed to keep him busy for up to 30 hours per week and our timetable, at its best, looked something like this :

Keeping Ian busy didn’t just mean keeping him occupied, it meant making him concentrate, hour after hour after hour. He wasn’t going to improve because we asked him nicely. He was going to improve because we insisted. Of course, we made our insistence as pleasant as possible; we rewarded him continuously with toys he wanted, a variety of small snacks, sips of his favourite juice, big hugs and happy smiles, but we insisted nonetheless. And we insisted hour upon hour. Nothing he could do would make us go away; we were there in his face constantly with our sweet smiles and our endless requests.

My instructions to the therapists were simple: Any behaviour that didn’t conform to neurotypical development was to be addressed. This included the hand flapping and the face pulling. Cute when he’s three, I said, not so cute when he’s thirteen, and definitely not cute when he’s twenty-three. Let’s deal with this now!

I put up a large poster in the therapy room (which I had made myself) which read “What has Ian learned today?” My goal was that he should learn something – anything – each and every day.

Ruth’s mandate was pretty straightforward: Persuade Ian to talk. Not so much speech therapy as speech pathology – it required that she get something from nothing.

The enormity of her task was daunting, but Ruth wasn’t the timid type. She began by asking Ian to say “Mmmmm” for something he wanted – on the basis that this was the simplest possible sound he could be asked to make. Ian was stubborn, but Ruth was stubborner! It didn’t take him long to learn that Ruth wasn’t going to go away, nor was she going to get out of his face, so if he wanted his juice, he might just as well say “Mmmm”. He did, but he took his time doing it! I have hours of video footage of Ruth in those early days, kneeling on the classroom floor in front of Ian, watching him, encouraging him, and waiting for many long quiet minutes for him to respond appropriately. Ruth’s persistence was extraordinary and her patience quite unbelievable.

Of course, I watched like a hawk for signs of stress – we all did – but once Ian was settled into the routine, he walked into his classroom quite happily, and calmly endured this endless tutoring.  

Day after day, week after week, month after month, our lives revolved around Ian’s therapy programme. 

*****

Of course, all therapists had their own ideas – as did I – and these ideas had to be aired and examined, and a plan of action agreed upon. To this end, we tried to get together once a month to have a Therapists’ Meeting. This would be held in the evening in the lounge of our house, wonderfully hosted by my husband who poured the wine.

Suddenly Ian would be faced with not one but ALL of his tutors together at the same time, and his face was always a study in horror!

In the early days when Ian was learning to make noises on request, and because we had followed Ruth’s instruction that in order to teach Ian the reason for communication we had to immediately imitate any noise he made – in the hope that if we imitated him, he would learn to imitate us – we had all become used to imitating his every sound. In class, Ian would make a noise and we would echo it, and it had very quickly become second nature.

Suddenly, when we were all together, Ian – having cooed or whooped or wailed – was immediately echoed by five female voices all unconsciously producing a perfect reproduction of his coo or whoop or wail.

It had Neil in hysterics. Quite understandably, Ian fled.

With the wine flowing, and freed from the stresses of the day, these meetings quickly became relaxed and raucous. However, sometimes they also became quite heated as differing approaches and personal opinions were held on to. I recall a fairly lengthy argument one evening between Tania and Ruth. Tania wanted to teach Ian sign language to give him a means of communicating before he learned to speak.  Ruth was determined to stick to her quest for direct speech from Ian. Both women were adamant their approach was the best one, and neither would back down. 

Neil, ever the gentle mediator, brought the meeting to order. “We will do both,” he said, “and see which method Ian favours, and which method works best for him.”

Of course this made those on opposite sides work even harder to prove that their method was the best, and Ian could only benefit from this added determination!

So Ian did learn some signs. He learned that ‘Mummy’ was his right hand on his heart.  He learned that ‘finished’ was the sweeping together of both palms. He learned that ‘hello’ was a touch to the forehead and an open hand in the air. He learned that ‘same’ was both forefingers tapped together side-on, hands out, palms down. 

One Saturday afternoon, about three months into Ian’s therapy programme, I was working in the garden, watching Ian out of the corner of my eye as he played on a ladder. I saw him looking directly at me, so I stood up straight and smiled at him. He smiled back. Then, without hesitation, he touched his fingertips to his forehead and put his hand on his heart.   I gasped. Ian had just signed “Hello, Mummy.” 

I was so moved that for a moment I couldn’t speak. With tears starting in my eyes, I walked up to him and gathered him off the ladder into the biggest hug.  

“Hello, my boy. And thank you, thank you, thank you.”

That was the first time in his life that my son spoke to me. 

However, Ian’s few signs didn’t have time to become really fixed before the patient hours of work paid off and Ian began to talk. Within a few short months, he was greeting his father with “Ha-o” for hello, saying “oo” for juice, “ween” for green, “nah” for no, “dzum” for jump, “tchwi” for swing, “yeh” for yes, and, bizarrely, “mummoo” for mummy. Once he proved he could be verbal, sign language was abandoned and everyone strove to increase his vocabulary – the notes in our therapy journal from this period are filled with excited sentences like these from Ruth: “Utter shock!  Ian said ‘More bounce’ for me today. Well, actually it was ‘mo punce’, but WHO CARES??!”.   

With Ian’s speech came exceptional moments – moments that not only validated our therapy programme, but which also permanently marked my life.

One quiet evening I had bathed Ian and was getting him ready for sleep. He was sitting in my lap as I dressed him in his pyjamas. I wasn’t really paying attention to Ian at all. I was thinking about a family get-together we would be hosting the next day, trying to remember if I’d bought enough food.  It finally dawned on me that Ian was saying “mum-mee… mum-mee… mum-mee” over and over again, very deliberately. I was so used to him calling me ‘mummoo’ that this new, correct pronunciation was quite strange. I looked down at him.  

“What it is, my boy?” 

He stared deep into my eyes, his own eyes for once clear and intense.  “Ya – o”. 

I frowned.  “What?”  

“Ya – o,” insisted Ian.  

Then it dawned, like a great wave crashing on a rock. The hairs on the back of my neck shivered. My son was telling me he loved me! He was saying ‘Love you!’ Oh my God! Stunned to the core I looked into his beautiful golden brown eyes. They were so open it was like looking directly into his soul. I could hardly breathe.  

Then Ian giggled and was autistic again, and the moment was past.

*****

It was around this time, when every precious word from Ian had taken almost superhuman effort from everyone in the team, I found myself standing in a queue in a supermarket behind a woman with a small child. This little lad was about three or three-and-a-half years old, and he kept tugging on his mum’s trousers, saying “Mum, please may I have some juice?  Please?  Mum … Mum …”  His language was so precise and so perfect, I listened in amazement.  His mother ignored him completely. 

Standing there in that public place, I felt a hot anger grow inside me. I wanted to grab this woman by the shoulders and shake her, “Listen to your son! Listen! He’s talking to you! Don’t you realise how special that is?” And at the same time I felt deeply sad for the child who was talking so perfectly and being ignored. Each word a natural miracle, falling easily from that child’s mouth. Each one a gift.

But one doesn’t accost strangers with one’s own problems. I closed my ears to the child’s pleading and walked away as fast as I could.  

When I got home, I knelt down in front of Ian. I addressed him gently, “Hello, Ian.” 

I watched his eyes flick in my direction. There was a pause and then he took a breath. “Ha-o… mummoo,” he said quietly.  

Months of hard work; two precious jewels. I kissed him, and smiled at him, and thanked him for both of them.

Addendum to this chapter :

There is nothing that an autistic child cannot already (physically) do, on his or her own, in the absence of any physical disability. The challenge of a therapy programme is to get them to do it when you ask for it. And then to do it more than once.

2 thoughts on “Autism : From the Inside – Chapter Seven

  1. Fiona, I had to interrupt myself. Almost physically force my fingers to make this laptop do what it’s doing now so I can tell you something. I’m not exactly in your face, no, not that. (Hmmm, I’ve just enlightened myself about me. Must make note of this to share with psychiatrist next time.) Anyway, I’m determined to get to my point. It is this: “…these meetings quickly became relaxed and raucous.”   First, you are stunningly brilliant. Second, I’m very old and thus have participated in countless meetings almost none of which ever became relaxed and raucous in the slightest. Third, I commend you, madame, for gathering the conditions necessary to produce such meetings repeatedly. Well done! Brava!! 

    Liked by 1 person

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