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Mario’s silent joy

Amaya Áriz Argaya

Mario’s silent joy


PART I
The first month of a new life

Chapter 1

Diagnosis: 19th January 2011

We were dumbstruck, gobsmacked.

‘I would prescribe him drug treatment with Risperdal and therapy in a specialised centre I know. What do you think?’ asked the neuropediatrician.

‘Um...’ I replied, ‘Can you tell us what’s wrong with him?’

‘Yes, of course! I would say your son has moderate to severe grade autism,’ he answered.

He said that without raising an eyebrow, in a calm voice. His diagnosis did not even raise a murmur or comment among the six people who were looking straight at my son on one side of the small room. They were hearing a diagnosis that had probably been made several times over the last year. A few minutes before, no doubt, the people present – who I imagine are interns, listeners from other clinics, or conscientious students given master classes as a ‘prize’ – had exchanged comments and chuckles about how well I spoke French or how funny my son was trying to catch Lucky Duck. At the time, however, I imagine they stayed quiet and discreet out of respect, or because of the intensity of the moment.

‘Risperdal has been used with children for years with very good results,’ the neuropediatrician said. ‘Of course, you shouldn’t read the side effects on the leaflet, they put everything there just in case ... for example, just read the leaflet on aspirin and you won’t feel like taking even one pill ever again! As for therapy, the centre I mentioned is one of the best around,’ he continued, ‘and you are lucky to have it in Pamplona!’

‘Good grief!’ I thought. To top it all, we are supposed to feel grateful!

At that moment, a wave of tears flowed over me while I watched my little Mario lying on the floor, thinking about the things in his abstract world. I can’t remember whether I looked at my husband before and after that moment; I only remember his face as our eyes met, with the doctor’s devastating verdict still ringing in our ears. It seemed there was no room for doubt.

That day, January 19th 2011, our lives changed for ever. A neuropediatrician gave a name to my son’s particular condition and took us to the edge of an abyss of ignorance that was to lead us along a path of roses and thorns.

My son Mario, my love, the light of my life, is sick. Sick for a lifetime, suffering from a condition of unknown origin – and one for which there is no cure at present – that plunges us into a world of uncertainty. Will he be able to speak? Maybe not? Will I be able to tell him stories? Will he understand me? Will he suffer? Will he love me? Will he be able to tell me he loves me? Will I be patient enough? Will I be able to listen to him when he tries to communicate his limitations to me? Will I be ready to accept it when he wants to fly the nest? Will he feel the need to fly the nest? Will he always need me?

I’ve become very frustrated because he doesn’t speak, particularly because each time we told his paediatrician that he didn’t speak, she dismissed our concerns by saying that it was normal that a child who was being spoken to in two languages, as was Mario’s case, would take longer to express himself. However, he used to say more words than he does now.

I remember when he was very small, on the way to the nursery school in the morning I used to tell him the names of the colours of the cars that passed us. When he was nine months old he pronounced his first word, ‘voiture’ (car, in French). Soon after he started saying ‘Papá’ [Daddy], ‘Mamá’ [Mummy], ‘Oui-Oui’ [Noddy], ‘No’ ... and he said them very clearly. What he did not say was ‘Sí’ (Yes, in Spanish), or ‘Oui’ in French.

I also remember that when he started to say ‘Oui-Oui’, I thought that if he said ‘Oui-Oui’, that means that he could pronounce the syllable phonetically, so it would be just a matter of days until he could say ‘oui’ in French. Unfortunately, that was not the case. At two years and eight months he also said other words: ‘attends’ (wait), ‘api’ (for us to pick him up), ‘guaguau’, ‘caca’, ‘pipi’, ‘mimí’ (when he wanted us to make a fuss of him) and ‘pupi’. Around ten words, all in all, between French and Spanish. He also managed to say some other words – ‘abuelo’ (grandpa), ‘abuela’ (grandma), and ‘au revoir’ (goodbye) – but he doesn’t say them anymore.

Everyone who knows Mario says he is not a typical child with autism. Not that those people are experts, but it is true that while some of his characteristics are very typical of the autism spectrum, others are not at all. Mario is extremely affectionate towards his father and me, he plays with us (when his mind is in that world of light), gives us a kiss and hugs ‘Petite’ (real name Leyre, his ten-month-old little sister), and is madly in love with his teacher in the nursery school where he has gone every morning since he was four months old.

Quite spontaneously, he comes to me, hugs me, kisses me and calls me. He goads his father into playing with him or tickling him ... but does not do these things with other people. It is as if they did not exist. When he meets his classmates in the two-year-olds’ class and their parents, he just looks the other way. When we go to his grandparents he gives them a kiss, but only because he is obeying an order from us. For several months, he just put his head forward, not his cheek. Now he offers his cheek for a kiss, and if I insist, he gives me a kiss with his little puckered mouth.

My sister-in-law got us an appointment with the neuropediatrician, and someone warned us about him:

‘They say he can be a bit awkward to deal with, but apparently he’s a top man in his field.’

After two hours waiting to be seen (we had an appointment for 11 o’clock and we still didn’t know what was happening at 1 p.m.), the paediatric nurse told us:

‘I know you’ve been waiting a long time,’ she said, ‘but believe me, once you are with him you’ll see that the wait will have been worthwhile.’

What I do know is that even a ‘healthy’ child is likely to get tired and irritable after a two-hour wait in a doctor’s surgery; he might even throw a tantrum or try to run off. For a child with autism it is even worse, because his unstructured mind prevents him from concentrating on the ideas I suggest to him to fight off boredom.

A few minutes later, they showed us into a room and the resident doctor – eight months pregnant – asked us a lot of questions about Mario’s medical record and the symptoms we had observed. She then told us that she would pass this information on to the doctor, and that he would see us very soon. Mario was very tired by now; his mealtime had passed, and on an ordinary day at school he would now be lying down on a small mattress to take a siesta. They finally called us in.

That rather hunched man has just told my Mummy that I am not aware of what is happening to me. OK, I might not be God’s gift to intelligence (well, maybe I am, but we don’t know yet) but I can work some things out for myself! Especially when I see tears in Mummy’s eyes and she looks at me. I know that if I look at her I can’t bear her look of sorrow, so that’s why I don’t look her in the eye. But I look at her out of the corner of my eye and I would like to hug her, even though my body doesn’t respond as quickly as I’d like it to. I’ll tell her later how much I love her!

Autism is a condition that lasts a lifetime, but it cannot be diagnosed from a blood sample or other medical tests. Only by observing the child’s behaviour and applying certain tests is it possible to see if a child just has strange whims or shows behaviour patterns that make up a particular disability.

The doctor took his time. He observed Mario for two hours, playing and trying to interact with him, speaking French to him and noting his reaction to different stimuli such as a crackling sweet wrapper (apparently this sound covers all the frequencies).

Halfway through the consultation, the phone rang; the doctor apologised and left the room without saying a word. We did not know if he had to rush to the toilet or had to deal with some other serious matter. Anyway, the ‘listeners’ were not surprised so we imagined that it happened quite often.

He came back after about fifteen minutes and picked up where he left off as if nothing had happened.

‘As I was saying,’ he continued, ‘in this centre we have a therapist who trained in the States in the TEACCH method. I am going to ring her right now, to see if Mario can start straight away.’

The doctor called the owner of the treatment centre. He phoned her at home at lunchtime. We looked on, rather shocked. In a flash, he told us to contact the centre that very afternoon, because the therapist was starting a stimulation project for children with autism within the framework of a doctoral thesis supervised by the owner of the centre. In principle, Mario was an ideal candidate. ‘Wow,’ I thought, maybe there are not so many cases of autism diagnosed as I had imagined!

‘Should we continue to speak to him in French?’ I asked. Indeed, half of the consultation had taken place in French because, after hearing me speak to Mario in that language, the doctor gave most of his explanations and the words he addressed to Mario in French, without thinking whether my husband or the other people present understood the language. He remained pensive for a few seconds.

‘I don’t see why not,’ he replied, ‘a second language is an enriching thing and, from what I can see, Mario codes and deciphers French well.’

Our return home was a sad one. Sad, and with uncertainty ... without realising the full implications of the diagnosis but with the feeling that someone had just sliced an axe through our heads. We walked home, with Mario in his pushchair.

We got home after 4 p.m., after picking up Petite from my mother’s place. There, in my parents’ house, is where our ‘pilgrimage’ began. I told my parents the news, quite aware that I might be giving the information in a cold and dispassionate manner, but that was the only way I could do it without bursting into tears. I could not bear the situation and left for home as soon as I could.

I got home, and we started to organise the afternoon. I had a meeting planned for 5.30 p.m., and I remember perfectly well how I had to pull myself together, catch the bus and turn up for the meeting as if nothing had happened, ready to contribute ideas. It’s amazing what great actors we can be sometimes!

I returned home early to be with the kids. My parents-in-law had been there for a while, but they left soon after. That night we continued with the usual routines: a bath for Petite, a bath for Mario, dinner ... It was a hard night, in which I had lengthy moments of sleeplessness with short periods awake in which I went over and over the future that awaited us.

From that day on, we started to take decisions. I remember when, before we got married and had the children, the most important decisions were where we were going to have dinner, or to which grandparents we would go for lunch on Sunday. After Mario was born the decision-making naturally became complicated, but the decisions were still much the same in terms of importance: which school Mario should go to, what clothes he should wear, and where we would spend our summer holiday.

When Petite was born the number of daily decisions that had to be agreed increased, but although they seemed transcendental at the time they were not really. However, from that 19th January onwards, our decision-making and the daily ‘battle’ became infinitely more complicated.

The first decision we had to take was about Mario’s drug treatment. I think we both would have preferred a second opinion before starting to medicate him. However, our family doctor, who we told about our appointment with the National Health neuropediatrician on January 31st, told us we would be losing precious time and he advised us to start as soon as possible.

So, I started to surf the Internet about Risperdal in small children, but I found very little information. Indeed, it is a drug that is usually prescribed for children of 5 years of age and above, and then not to all but only those who show aggressive and self-harming behaviour or sleep disorders. That was not Mario’s case at all.

Mario was a quiet, obedient and affectionate child, naturally within his limitations. My husband and I discussed whether we should give him the medication or not.

‘As far as I’m concerned, it’s very clear,’ I told him, ‘on the Internet they talk about a lot of side effects and there is little evidence of improvement.’

‘Yes, but we have to make a choice, go in a particular direction,’ my husband said, ‘and follow it through as closely as possible.’ We finally decided to give him the drug. Starting that very same day. The 19th ... the day they diagnosed Mario. The day we started to give him Risperdal. January 19th, the day I went back to work after giving birth to Leyre and completing my maternity leave.

Chapter 2

When did we start to realise what was happening? The first steps

Everything had started several months earlier. In his check-up at the age of twelve months, I remember that Mario did not pass the tests the paediatrician had explained to us. I don’t remember what they were exactly ... things like waving goodbye or saying ‘I’m one’.

At thirteen months, I took him back to the paediatrician and told her we thought Mario couldn’t hear. She carried out a quick test on him and said she thought he could hear perfectly. I insisted that he couldn’t, or if he did he didn’t take any notice of us. I also said that we had cases of hearing loss in the family and that I would like her to refer us to an ENT specialist. Mario had also suffered from otitis on several occasions ... nine in fifteen months! She did not pay any attention to me.

In the following check-ups, and each time we took him to her for colds, tonsillitis and other illnesses, we regularly described the symptoms: he didn’t speak, didn’t play with the other children, couldn’t adapt to the two-year-olds’ class, refused to eat and take a nap at school ... but the paediatrician had an answer for everything. If he didn’t speak, it was because we spoke to him in two languages and he would take a little longer. If he didn’t play with other kids, it was because children don’t start socialising until they’re three years old. If he didn’t eat at school, it was because the school was new to him. If he had tantrums, it was because he was jealous of his sister ...

On January 7th, during the five-month check-up for Leyre, I told the nurse of our concern about Mario for the nth time. He had picked up three infections in the last three months and we had given him three doses of antibiotics. I asked her for some vitamins to strengthen his defences and I told her once again that he didn’t speak, he didn’t want to eat at school ... Yet again, the same mantra: everything is normal. Instead of some vitamins, she gave us a drug to stimulate his appetite.

On January 9th 2011, with the Christmas holiday over and almost forgotten, my father took my husband and I aside for a moment and announced, in a very solemn tone of voice, that he had something to say to us.

‘We think that there is something wrong with Mario,’ he said, ‘and that he needs to go for some tests. If necessary, I’ll pay for the tests, I don’t know, maybe a scan,’ he said. ‘But I think that you need to look into it, because we think that something might have happened about three months ago, and Mario started to go backwards rather than forwards.’

I kept my counsel and didn’t say anything. To be honest, when I heard my father speak, my first reaction was that he was interfering. Why should he invade my privacy? Even though he’s doing it out of affection and concern, he’s hurting me. But then, that’s just me; I initially react quite badly to things and then I think things through and calm down ... and that’s exactly what I did. Once back home, we spoke a bit and I said I would ring the paediatrician the next day. I didn’t know what I was going to say to her; she would surely say ‘more of the same’. So, at 9 a.m. on Monday 10th January I rang our paediatrician, someone we had put our full trust in until then. I repeated the symptoms we observed in Mario and said we wanted to refer him to a specialist. This time – I don’t know why – she listened to us more attentively.

‘If you need to see Mario,’ I told her after telling her the symptoms again, ‘I can bring him to your surgery.’

‘That won’t be necessary, Mummy,’ she answered like a rapier, ‘what you’ve told me is enough to refer him to the Mental Health Centre.’

‘The Mental Health Centre?’ I asked, surprised. ‘But he’s only two years old!’

‘From the Health Centre we refer patients to the Mental Health Centre so that the clinical psychologist can make an assessment,’ she said, ‘but I will ring right now so that they can refer him to a psychiatrist.’

‘But...’ I replied, my voice shaking, ‘they told me that such small children should go to the Child Care Centre.’

‘What centre?’ she asked. ‘I don’t know of it; from here we refer people to where I said, and from there to the Juvenile Care Centre, where they will carry out an assessment on him. I’ll also give you a note for the neuropediatrician. Come back at 14:30 to pick up the notes so you can make an appointment.’

I didn’t say anything else, or get annoyed, because I realised that the paediatrician did not understand what I was telling her, and anyway her tone of voice was rather rude. I had been looking into things a bit and asking people I knew, and everyone said that I should contact the Child Care Centre, where they dealt with children up to three years of age, which was obviously our case.

Once back home, and not at all happy with the solution the paediatrician had given me, I started surfing the Internet and found the Child Care Centre website. I phoned the centre and explained that the paediatrician did not want to refer me to them, although the website said that you could contact them directly. They said that was not so, in principle you could only go there with a paediatrician’s report. I insisted strongly and the person on the other end of the phone said she would ask the centre’s social worker to ring me some time during the week.

The paediatrician rang me around 2 p.m. I got the feeling that she wasn’t feeling very comfortable, or now realised that it was a serious matter, because she told me she had prepared the note and had got me an appointment with the neuropediatrician for January 31st. As for the other note – to see the psychologist in the Mental Health Centre – we were on a waiting list.

Chapter 3

The fight to get an appointment: Waiting lists

On Wednesday 11th January, while still on maternity leave and with only two days to go before I went back to work, I visited the Mental Health Centre in the morning to see how long the waiting list was to see the clinical psychologist. The receptionist was very kind but couldn’t tell me when they would call us.

‘Please, make it as soon as possible,’ I pleaded, ‘we’ve already lost a few months.’

I didn’t want to tell everyone my life story, but I started to become aware that a long series of waiting lists was just starting and that I was going to have to beg and grovel to get appointments. I received a phone call an hour later. The receptionist in the Mental Health Centre had remembered me when someone dropped out, and she gave us an appointment for the next day. An appointment! All excited, I rang my husband to tell him about my ‘wheelings and dealings’, and then finished off some things at home to get ready for my impending return to work.

The next morning, my husband and I went to see the psychologist. We told her the same old story: the symptoms we observed, how long Mario had had them, and our concerns. She said that she had already had received some information about the case.

‘You’ve spoken to the psychiatrist, right?’ she asked, ‘because I’ve received an e-mail from the Juvenile Care Centre telling me how worried you are about Mario’s case. My husband and I looked at each other in surprise.

‘No,’ I said, ‘and right now I can’t think who the person who sent that e-mail could be.’

The psychologist then proceeded to read us the e-mail she had received. As she read, I began to realise what had happened. That person must have been a neighbour of my parents. My mother had mentioned the matter to him the day before to see if he could help us get an early appointment.

‘I am going to refer Mario to the Juvenile Care Centre,’ continued the psychologist, ‘because he might have a GDD. They’ll ring you from there because they have quite a long waiting list.’ Waiting list, I thought, waiting list... that seems to be our destiny. I caught the term GDD on the fly, and mentioned it to my husband later but he couldn’t remember the psychologist having said it.

That day, and the following days, I looked it up on the Internet, not knowing whether it was an illness, a syndrome, or what. The initials GDD were the only ones I could latch onto to investigate further. The good thing about GDD and autism is that no matter how much you look for information on the Internet, what you find is similar. Most of the information is translated from English, the symptoms are similar on all the websites and the information is very specific. GDD – General Development Disorder – is the name given to autism by the American Psychiatric Association.

I ploughed through the pages without reacting, and spoke to my husband as soon as I could. True, Mario lagged behind a bit, but I didn’t think it was as serious as that. My husband said it wasn’t possible; yes, Mario lagged behind a little, but he didn’t think it was that bad. I told him that all the symptoms fitted.

Even I could make a preliminary diagnosis, it seemed very straightforward: Mario was almost three years of age but he only said a few words, he didn’t play with other kids, had repetitive movements, often froze on the spot, stared at lights and half-closed his eyes, and loved spinning. His tutors said that he did not know how to play; for example, if you threw a ball at him he didn’t know that he had to throw it back to continue the game ... Nevertheless, I continued to read the wealth of information without really realising that these things were happening to my son.

On Thursday 13th January, I rang the Juvenile Care Centre and spoke to the psychiatrist, who had already sent an e-mail to the Mental Health Centre asking them to bring forward the appointment with the psychologist. I told her again what had happened; she tried to put me at ease and said that someone would ring me later in the morning to arrange an appointment. I also told her that I had unsuccessfully tried to get an appointment in the Child Care Centre. She told me not to do anything with Child Care; if necessary, she would refer us there, and she gave me another appointment for January 24th. (Naturally, I didn’t take any notice; if I had, I would still be waiting to start the stimulation sessions for Mario.)

The next day (Friday), they finally called me from Child Care. The director came on the line, saying that she was on holiday but they had passed my call on to her. I imagine she had found out about Mario’s case somehow, because when I rang before they said that the social worker would ring me, but here was the director herself calling me now. I explained everything again and she said she was very surprised that the paediatrician did not know about the Child Care Centre or hadn’t referred us there.

‘If you like, make a direct application,’ she said, ‘which you can hand in here. If you come today you can give it to a colleague of mine.’

My husband happened to be off work that day, so we decided to run some errands, including buying some furniture for Mario’s room, and then hand the application form in at the Child Care Centre.

‘They’ll send you a letter with the date of the appointment,’ they told us.

‘How long will we have to wait?’ I asked, anxiously.

‘Well, there’s quite a long waiting list, so I really can’t say,’ the receptionist said, although very courteously.

We were dumbstruck. Another waiting list? Is this how the National Health system works after you pay taxes for years?

I had some free time that morning and I happened to come across some other websites. We had talked about going away for a weekend to the country with a friend and her family, and she had sent me some links. We spoke on the phone for a while, chose a nice-looking country guesthouse in the village of Baquedano, in the mountains near the source of the river Urederra, and I said I would make a reservation there.