Mª Jesús Sanjuan
President of the families association TEAdir-Aragón
When one considers what this Seminar of Good Practices between professionals and families means, one has to look back and remember, because fortunately these days, those good practices have made life easier for both the child and the family.
Something that always worried me and anguished was the possibility of “losing my son”.
It was a hectic time, a time in which the mechanisms that my son used to alleviate the chaos of his world meant the total collapse of mine.
He used to go out running without letting anyone know, in what I understood was an aimless journey, which distressed me and made me always grab onto him, call to him and I would not let him get further away than a metre from me.
Some time later, I discussed the situation with his therapist. The idea of not being able to confine the world and the feeling that he was unaware of any danger, put me in a position of tiring guardian, and I guess it would lead him to feel harassed constantly, in an endless cycle of escape and capture.
His therapist made me understand that, although he would explore limits, he did it with a purpose: to find at that moment in time what captured all his interest: the opening and closing of a garage door.
To begin to allow and trust in his comings and goings, was for me a supreme effort and for him a great liberation. Little by little, we both agreed to signs that would allow us to trust each other.
However, some time later, when we had both demonstrated what we were capable of, a shock occurred: for probably no more than ten seconds, I did not see him.
My mind clouded over, I wanted to run around and scream his name I don’t know very well where to, and suddenly it occurred to me to think, to think from his point of view, not from my fear.
I looked around at the most enticing places around me, I thought of how my therapist had told me to run towards something … And indeed, there it was: a large garage door that opened and closed, going up and down, inviting, grand , perfect. Its only defect: to be placed in such a way that from my position one had to be a very observant to discover that that hole in the corner housed such a treasure.
He was in front of the garage door, looking and smiling at it like he did with no-one else, excited and applauding. As if we were connected, he looked at me, he became serious again and I would say scared, most likely because of the expression I had. Then I was able to smile and wave at him as a sign that everything was fine. He copied me, smiled and also raised his hand in sign as if to say “I’m here mum and it’s all right”.
From that day we made a pact: he would give me warning and I would tell him my fears. Thus we agreed we could visit those magnificent doors together and, later, he could even enjoy them alone.
If I had not been in permanent contact with his therapist, if I had not told him of my fears… I could not have helped my son, I would have lost the possibility of having another bond with him. Those ties that mothers and children reach instinctively from the moment of birth, those connections that are taken for granted and without effort and when you have an autistic child, you have for a long time the feeling that they do not exist and what is worse, you don’t know if they will ever exist.
But the good news are that they exist. It is necessary to observe, to change our position and to find the place where he is. It is not the place that you surely had in mind at the beginning of this journey as a mother, but it is a place, and both have the right to find it in whichever way. We deserve it.
Nowadays, this object of desire has opened new possibilities: directions, steps, avenues, different mechanisms, differences between public and private … those doors also make me smile today. So a good practice is the one that finds the way that my son can be well, and it does not have to be sophisticated or obscure, it has only to facilitate and help him to build with his own tools the scaffolding that helps him to stand in this world.
Translation: Marta Franca