Born twice

 

María Jesús Compadre

Association of families  TEAdir-Euskadi

My son Aimar was born in December 2002. He is a gorgeous 10-year-old boy.

At first I was absolutely thrilled to see how easy it was to raise this child since his development was quite normal and he met his milestones on time, or sometimes even before. He seemed such an independent baby… just as if he did not need anybody around!

It was when he was about two that I started to be puzzled about some kind of oddities in his behaviour, like his rocking before he fell asleep or his unwillingness to wear a pair of brand-new shoes, which I had just bought for him, and that obviously I had to take back to the shop.

However, being totally unaware of his difficulties and considering he was a really energetic toddler, we decided to take him to a nursery school by the time he was two. There, he adapted quite well to this new environment except that he cried quite a lot, as we learned later, but given this is not unusual for young children, the teachers just thought it would take him a little longer to adjust. How much he must have suffered at that time!

One day the teacher called us to meet after school and this was when she told us, in a very gentle manner, about his weird behaviour. Then, as she did not dare to utter the word, I put it bluntly: autism, isnt it?

From then on we went through the same ordeal as that of any other parents of autistic children. First my child was diagnosed with ADHD (Attention-Deficit Hyperactivity Disorder), then it was not Hyperactivity but only Attention-Deficit and later they said it could be a case of Childhood Disintegrative Disorder. Thus, I contacted Sagrario García for some advice and, searching for alternative ways to deal with his condition, she suggested that we should see Elena Usobiaga. And we did.

Aimar was already being treated by Dr. Usobiaga when we went to see another doctor, whom we had arranged to meet some time before. He was a respected specialist who gave the boy some tests through a glass pane for around 15 minutes and, after asking us a few questions, he made it clear that it was autism and added that the child would probably be retarded.

I cannot think of anybody hurting me so painfully as he did!

It was so shocking to me that I cannot remember anything else apart from a feeling of complete disbelief.

His words were not only devastating for us but they also made us lose so much control over the problem that from that moment we were not Aimar’s real parents any more and he was not our son, either. The autism had inflicted so much pain in our relationship!

Anyway, we went back to Elena who patiently and skilfully got to know Aimar and put him under treatment. However, curiously, she rather helped us come to terms with the problem and become his parents again. At the same time Aimar was being treated by an APNABI psychotherapist, Isabel Burón, whom he loved, and so did we.

Dr. Usobiaga gave us a great deal of information about autism and how it was affecting our son, which was really accurate. She told us that it was possible to communicate with the child through play, something I found really interesting. Thus, as I also had the feeling that it was possible to approach him, I took the chance. I knew he really loved being tickled, so for some time I would get close and tickle him, which made him happy and at ease, and that way I managed to make him utter a few sentences. This was quite an achievement as he barely says a word.

So, little by little we were making progress.

We were firmly convinced that dealing with the problem through psychoanalitical treatment offered a new and different perspective from more traditional therapy, since pscychoanalysis took Aimar’s needs and peculiarities into account. In fact, during the sessions we felt that autism was somehow overcome and this allowed the child, our son, to emerge in his own way. It was a really nice and unexpected feeling that Dr. Usobiaga made possible thanks to her gentle approach, both towards him and us. Regardless of the success of these therapies, there is something paramount about psychoanalysis, basically that psychoanalysts have a very ethical approach, always being respectful to the patients and accepting them just the way they are.

One day I had a terrible nightmare. I dreamt that someone was trying to abduct my son, as well as other children. So, I started yelling but, as it usually happens in dreams, my cry was silenced and he could not hear me. This made me feel like dying. I woke up so panic-stricken that it was just a relief to realise it had been only a bad dream! And it was then that I clearly understood how much I loved him. Quite frankly, my subconscious revealed this to me in a very unexpected way, I believe.

From then on things changed radically. This is why we think that Aimar was born twice because, although it is true we had been caring for him as much as we could, no matter how painful it was, from that day on I felt like I really had a son I absolutely adored. The child was my number one priority and his problems were not so pressing after all.

At present I think that Aimar is quite a happy child. He goes to an ordinary school whose staff are really extraordinary, especially Diana, his therapist. She is like his shadow, his bodyguard, his second mum, the person that makes him feel really self-confident. Undoubtedly, all the professionals at his school have managed to make his schooling really smooth, catering to all his needs. Could we ask for more?

Besides, just like many other children, Aimar goes to a special club in the sports centre where he is learning to swim. Currently, he is also under two different therapies, one with a motor skills specialist and another one with a psychoanalist.

At home we basically try to interpret and make sense of what he wants to say and do, battling to understand and help him at all times. Conscious that we may be right but also wrong, we take decisions based on poor judgement. No doubt, all this struggle is exhausting and is taking a heavy toll on us but we are determined not to give up.

Over the years, things have changed considerably. Aimar is now a much more flexible child and his behaviour is not so weird as it used to. Somehow, he has come out of his own shell and is closer to us, to his sister and his schoolmates. We endeavour to give him plenty of opportunities to socialise. I must confess, for instance, that I would never have thought he could behave so well at a wedding or a restaurant as he has done. Aimar is basically a nice and obedient child, except when he feels distressed.

There is much more to this. We have already assumed that many of our expectations are not going to be fulfilled. Also, we have painfully taken in our stride problems like his dependency or the school syllabus that he will not manage to complete … but what hurts us most is that he seems to be a bored, self-absorbed child, unable to cope with his own leisure time.

Being conscious of how little we know about his disorder, we have been trying to get help from people much more knowledgeable about autism than we are. This is why, I have contacted Vilma Coccoz through e-mail with my queries several times. I also attended the Foro de Barcelona in June 2010 and I am taking part in the Seminar on autism that Pia Nebrada organises monthly, where it is a real pleasure to witness how she disentangles the intricacies of Martin Egge’s book “The Treatment of the Autistic Child” little by little.

As any other family, we worry about the future. What is going to happen to our son when we are not here? What will he be up to? But… does anyone know? So, we had better focus on the present, and right now we are active and exactly where we should be, even open to unexpected things to happen. And more than anything, what we really dream about is to find the rope in this world that could give us access to the world of his own.

Meanwhile I just try my best, caring and loving him, bearing in mind what someone thought one day “Where there is love, a miracle may come true.”

Translation: Mª Rosario artiga.