Accept, understand and educate to inform. To this, we add love, lots of love, smiles, sharing and memories since we are talking about children. April 2nd celebrates the World Autism Awareness Day, an important moment to be familiar with the problem and to understand who lives it with no prejudice and in a life of inclusion. Elsa is the mother of two boys. Five-year-old Dinis is the youngest and has Autism. Because all boys and girls with Autism have a face, a routine, things they like and others not so much, today we share Dinis’s story through his mother´s words. A mother with a heart full of joy.
How old was Dinis when you discovered that he was Autistic?
I began to suspect when he was a year old. I called him and he didn´t take any notice, he played with his cars in a different way, he turned them upside down and he spent a lot of time turning the wheels with his hands. At first, I thought it was nothing that he liked to play like that and nothing more. It hadn´t yet ´clicked´ on me that something was not right with “my son”. It was one of my sisters who told me that something might be wrong with my boy. It was not normal that he would not hold the bottle, not look at us, not pay attention when we called him. Instantly everything fell into place in my head, after all something was not right. I immediately made an appointment with my doctor, who directed me to the hospital. Dinis was tested on everything, ears, head, blood, urine, genetics… Nothing, there was nothing wrong. There wasn´t a clue.
How was it when you found out and how did you handle the situation? What about the rest of your family?
Whenever I went to a doctor´s appointment I went with the hope that the doctor would tell me “your son has nothing, every child has his time”, but I would always leave with a lump in my throat. It was after having some tests done with a psychologist that I was finally given the diagnosis: “Your child has Autism”. My head was spinning. “What is Autism about anyhow? Now what can I do to heal my son? Where do I have to go next?” A part of me had died at that moment. I left, went to the car, called my sister, I didn´t want to call my husband he was at work. When she answered, I wept compulsively. “How can my son have autism, what have I done wrong?” After she comforted me, I hung up. I was reborn, I gathered the ashes and the mourning and quickly went to battle. “Is this it? So let’s get to it!” It took his father a little longer to accept. It was the first time he was a father. Why Dinis? Everything became easier when he realized that it had to be this way and it was up to us to be well so we could help Dinis. His brother accepted it very naturally, I never hid anything from him. He watched my pain and got used to it, just like the rest of the family. I have three wonderful sisters who supported me very much. Dinis’ godparents are exceptional, tireless, as my sisters are far away they help us. They are a couple of dear friends, but they are, in fact, much more than that.
How does Dinis communicate?
Dinis communicates through symbols, photographs. He has the advantage of explaining himself really well through symbols and if he does not have the symbol he wants, he makes himself understood very well. At first, it was very complicated, when he did not know how to use them, as he didn´t speak he was frustrated because we didn´t understand him. However, nowadays he knows how to use them very well, thanks to the speech therapist and school.
Is Dinis seen by a psychologist, if so, what specific action plan did you get involved in?
He is not seen only by one psychologist, he is seen by a team consisting of a speech therapist, an occupational therapist and a psychologist. They do therapy in small groups of 2 or 3 children, it is a therapy that consists of doing day-to-day things, like for example a trip to a supermarket, a coffee shop for a snack, use public transports, cook, etc. In these therapies several alternatives are always being worked, such as interaction with other people, communication, waiting, which for Dinis is one of the most difficult parts. There is a great collaboration among all, between therapists, school and between us, parents.
What role does School have in Dinis’s development?
School has undoubtedly been essential for Dinis’s development, he loves to go to school, he goes to school happy and comes happy, which for me is the most important. The atmosphere is very good, he goes to a regular school with an Autism unit, therefore they are already familiar with this problem. He is very dear there, by both teachers, therapists and other students. In general, they are all essential to Dinis´s development, each with its role, bigger or smaller, they are all very important.
What makes Dinis happy?
One of the things that makes Dinis happier is to go for a walk, he enjoys the park very much, he loves everything that is related to water, swimming pool.
Would you share with us a special achievement Dinis has conquered? How was it?
Dinis´s biggest achievement, till today, was letting go of his diapers, during the day and night, it was very intense, but fast. I thought he would never get rid of them. Even I would sit in the pot for him to see. Until, from one day to the other, he asked to go to the bathroom and now he goes alone. The important thing is we never give up because they can do it.
At home, do you do any kind of activity that develops Dinis´s skills?
At home, everything is done to develop Dinis´s skills. Everything! From asking him to tidy his things, to dress, to undress, take a bath, everything.
Are Dinis’s difficulties more of fine motor skills or gross skills?
He has more difficulty in fine motor skills (the ability to perform fine movements with control and agility, using his arms, hands, using a pencil, for example).
In the search for the best therapies and family education strategies for Dinis, what are your main sources of information?
The sources of information are very limited, if we, as parents don´t try to look for information we wouldn´t get any. The best information we can get is from parents to other parents who have been through the same situation. That is how I managed to know where to go, where to look for therapeutic help for Dinis, talking to the father of an older autistic boy who had already gone through this same quest.
What do you like people to understand/know more about what Autism is and to educate and raise a child with Autism?
I wish there was more information. People do not know what Autism is, just as I didn´t know either. From the little they know they have a habit of generalizing, supposing that they are aggressive, that they do not like physical contact, and no, they are not all the same. Dinis loves physical contact, he is not violent, on the contrary, he is very sweet, he loves to play hide and seek. I would like everyone to know that they are children like the others, they like to play, to eat candies, they enjoy swimming, swings. They just need to be accepted, encouraged, loved, and the secret is always a lot of “patience”.
For many people with Autism, one of the biggest constraints is the sensory overload – crowds, noise or changes that may cause confusion or even upset. In this sense, do you consider it essential to build, as a family, a comfort zone for Dinis, or do you try to create the most natural environment possible?
Yes, it is true, the sensory overload is a lot of pain, but once again, it is necessary to keep calm and be patience. In Dinis’s case, it is essential to have a day-to-day routine. We always try to create a routine: go to school, on Tuesdays I go to fetch him for therapy, in the weekend he is with his father, at night he has to be with his mother, I´m the one that gives him a bath and puts him to sleep. If any of these things is drawn away from the routine, it’s very complicated and Dinis gets upset. We feel this on holidays or if he has to stay home because he is sick. I’ve had very complicated situations, like going in the supermarket and having to leave straight away because he started to scream, but I have tried several times and now I can go shopping in the supermarket with him. I have gone with him to a shopping centre and it did not go well, I went other times and it went fine. Everything has to be tried slowly and never give up. We cannot keep him in a bubble, we must try to lead, as far as possible, a normal life. I have never taken him to a restaurant, for example, because I know that at this moment he is not yet able to sit at a table the time that is needed. He is still too small for that, but one day he will, I am sure.
What is it like being Dinis’s mother?
It is wonderful. It is very tiring, but very rewarding and emotional. It is to appreciate and value small minor things that perhaps most mothers do not care about because it is normal to be like that. It is to celebrate each victory with enthusiasm. I am so proud when he dresses by himself, when he got rid of his diapers, when he writes his name, when he learned to use the circle of communication, intending to. I love how naïve he is, his hugs, his kisses. Dinis is very fond of physical contact.
Photographs kindly given by Dinis’s mother.