Special

por Eugênia Pickina

Autism, family and the everyday...

I promised. May I ask the reader to allow me to let my mind ramble, however, not going against Reason? This is how a small different writing begins:

Once upon a time there was a little boy, with brown eyes, like so many others, who lived in his world of make-believe: silence! Until the day they told his parents that all these things that normal children do he could hardly do ... After the initial fear, the dedicated physician said “parents, please, lots of love”.

And so it happened. What other function does love have? The parents welcomed the little boy, captivating him, a mirror inside, simple desires. The little boy then grew silent and respected, without suffering the blows against which it is futile to fight. For in autism one of the solutions has never to do with healing, but rather to the fact that in the home of an autistic, everyone is summoned to learn a different way of seeing and perceiving the world. And it is precisely here that hope is opened to the living...


Introduction
- Parents and family members of an autistic child are daily exposed to tests and challenges that generate abrupt or sometimes painful impacts on the family's life, mainly because they are called to live with a global developmental disorder that necessarily affects everyone in the domestic environment.

Studies and diverse literature dealing with autism point out that for parents the birth of an autistic child is a difficult experience, marked by the anguish of the discovery that the desired child is in fact an autistic child. That is, especially with the shock of the news of the diagnosis, parents experience the pain of the loss of the idealized child and, at the same time, are called gradually to understand and adjust to the birth of a different son.

As an autistic child will always be autistic as long as he/she lives, after a period of mourning (symbolic), pain and perplexity, parental involvement generally acquires a determining condition: parents become partners in the life of the autistic child.

Undoubtedly, autism generates crises and imbalances in the family dynamics. It claims acceptance, adaptation and cooperation on the part of all members of the household in relation to the autistic individual.

In fact, if we consider the family as a system, those with greater functionality before the autistic child is born (or when the diagnosis of autism is announced) tend to respond better to the new demand imposed by autism than families whose functionality was compromised. Due to this, frequently there are divorces or families that disassemble in the face of the difficulties of their autistic child. In addition, parents caring for an autistic child report many memories associated with solitude and social exclusion - regardless of their socioeconomic status.

In any case, the participation of families in the daily conquests of their children with autism is a determining factor. Instead of illusion or hopelessness, parents who are informed, seek social support, and unite in the division of care are (more) capable of nurturing conscious hopes and, consequently, making investments in the development of the autistic child so that he can, in the future, become a more autonomous person as possible.

Testimony of a father - Abel S. is the father of Rafael, 16, diagnosed as having Asperger Syndrome. Abel gave us the interview below:

Tell us about the medical diagnosis.

Izabel had an abortion before Rafael was born. We suspect that there was a previous failed attempt to return. A couple of years ago I dreamed of Rafael in his version "original reincarnation". He and I were playing in a straw hat, in a kind of a park, and suddenly I begin to watch him. He had that giant head of hydrocephalus carriers and very thin legs. I hugged him and woke up crying, thankful that God gave us the opportunity to have him with us in better conditions! We learned from a psychic that he had been a Dutch doctor for some centuries, and would have abused intelligence under our complacency.

As for the initial diagnosis, it occurred by our observation. Rafael was restless, he did not speak, and his head was strangely crooked, as well as an expression of a tortured, unhappy child. We began to take him to the doctors when he was about three-and-a-half years or so. We did, initially, speech-language tests, which were negative. From there, we sought a professional that could serve him in the Government’s health network. There were no specialized doctors at the time. We started with a military doctor, in transit through the city, who passed him the first medicines, which did not work.

Shortly afterwards, Dr. Tarcia, a psychiatrist, now a Professor at the Federal University, and she worked at the CAPS too and was willing to help us. She had developed, in the absence of children's neurologists, an own protocol for caring for patients like Rafael and had success stories already cataloged. At that time, at age of four, he started taking carbamazepine and neuleptil (an anticonvulsant and an anxiolytic). The fact is that Dr. Tarcia made as feel safe because she also had a very safe "flight plan". She knew where she was conducting the treatment and was thus describing in advance the stages by which he would pass and the gradual gains he would attain. That was how the prognoses were always positive because they were based on other children, under the same conditions, who had matured emotionally and physically with the medicines. In the reports given by her, she never closed the diagnosis, leaving it unfinished so as not to have early labeling, with negative consequences.

At six and a half, Rafael began to speak, though with difficulty. This global backwardness of development, as we have learned by reading about it, has gradually been overcome. What was most interesting was that he created, live, all the notions of coexistence with the outside world - physical and human. So he asked if it was to laugh at some situations he could not tell whether they were "laughable," among other examples.

From an early age, relatives and friends tried to alert us to Rafael's "illnesses". The most mentioned were autism, deafness and hyperactivity, together with attention deficit.

How did it become the family routine?

We suffered from isolation at an early age, because going out with him and attending events was synonymous of worry and much care, almost always insufficient to "control" him. With the isolation, we shut ourselves at home to take care of him. For a long time we called him "little savage." He did not feel pain when he hurt himself, he could walk barefoot on the street, still unpaved, jump the gate and escape. He did not make eye-contact, and he did not go to anyone's lap, which mainly overloaded his mother.

Was Raphael attached to his brothers?

Yes. He cried a lot when one of the brothers left home, especially those closest to him by age, Ana Clara and Gabriel (18 and 20, respectively). He just felt safe and quiet when everyone was home. The brothers welcomed him and helped him to develop contributing immensely to the maturation of language and other cognitive and affective aspects, to the point that today very few people can make the diagnosis of Rafael, who at age 11 was officially classified as having the Syndrome of Asperger. Raquel, the older sister, now 24, was a second mother (Tata) to Rafael.

Did the mother feel overloaded? Did she quit her profession to care for the child?

Izabel reconciled the work at our small company while her physical and emotional conditions allowed. The fact that she had lupus and fibromyalgia complicated her professional life a little. Today she became a seamstress and went back home to take care of it definitely under medical guidance.

How were school years?

From the earliest years of school, Dr. Tarcia's orientation was that the school would be, mainly, a space of socialization; that he could not be obliged to go, and if he could not make it, he should only stay part of the class time. This happened for many years. Only in the fifth year, because he had identified himself immensely with the teacher, did he spend all his time in class; before we fetched him after the break.

He studied for very little time in two private schools (he suffered bullying, there was no inclusion). He was literate on his own in Kumon. At the municipal public school, where he studied until the fifth year, he deceived teachers for his ability to "interpret symbols" and "make correlations", which was equivalent to reading practice. He would take oral tests and do well.

In municipal schools and later in the state schools (two of each), he was well accepted. He adapted himself well from the second municipal school, Pedro Batalha, where there is a "resource room" for special students, as well as training for teachers. There are caregivers in all rooms where there are "special" or "included" students.

Its maturation process, according to the prognoses of Dr. Tarcia, has been fulfilled, little by little. She predicted that he would arrive at the University, just like all other children in her care. Today, on the eve of turning 16 [Rafael turned 16 on March 23] he is in the 9th grade and is one of the best students in the class. In school, he has been able to make connections with teachers and colleagues over the years.

How is the adolescent Rafael?

Rafael currently has few friends outside the family circle. He does not like to go out. He claims to be a "rabbit" and what interests him is "rabbit hole". He only goes to the mall, for example, if he goes to the movies or to the bookstore. However, he cannot stay there for a long time.

Lately, he has questioned the reason of being obliged to attend the classes of evangelization, since we do the Gospel in the Home, according to the traditional practice of the Spiritist families.

Games and internet play a very important role in his life. Following the physician’s advice, who said that games would help him develop in many aspects, we gradually allowed him access to them on the computer and consoles.

Today, he is an expert in consoles and games, mainly Nintendo. He has a very high degree of knowledge about what he likes. As we have always monitored him, he has learned to make aesthetic and ethical choices and has not yet reached violent or adult games (pornographic and similar). He is a fan of Mario and Sonic, among other characters.

What, in relation to Rafael, are the dreams and hopes of the family?

Due to his connection with technology, it is our plan to help him prepare to become a professional in this area (repair and installation of computer software at first). We have worked so that he achieves broader autonomy and can live alone in the coming years if he wishes. At the moment, he says that he will not leave the house and that he will take care of his mother...

We have never left him totally idle. We also try to make him vary his leisure, making him take turns playing, watching series or drawings, drawing and playing Lego.

It is known that each couple faces autism in their own way. Did you become more united?

Yes. Definitely, Rafael united our family immensely, as he became a center of attention for many years. To this day we take care of him, though he does not need so much care, as before.

Any advice for parents who have an autistic son or daughter?

The advice we can give is to never lose hope, because there are many therapeutic means available today, even if we do not have many financial resources (as was our case, always resorting to public service). Another is: do not believe in "miracle treatments", because the cure of our physical and emotional ills is, in large part, "love within the family", the good coexistence over the years.


Notes of the Author:

1 – The reader can obtain further information about the Raphael case by writing to the following address: Abel S. - albergueamigo@gmail.com

2 - To find out about autism, an indicated source is the Association of Autistic Friends - www.ama.org.br

3 - Each family faces autism in its own way. And the autistic child has an unusual level of activity, which demands constant attention and supervision, since they are individuals with serious problems of communication and interaction. There are, therefore, the critical periods of transition through which all families pass: a) upon receiving the diagnosis; b) during the school years; c) adolescence; d) adulthood.

4 - Cf. Rodriguez, Juan Danilo. Holistic Therapy Alliyana. BA: Editora Leal, 2015 - a rich reading and very appropriate for those who have autistic children or care for a person with autism - teachers, therapists, doctors, relatives and / or friends of a person with autism. The physician Juan Danilo Rodríguez has in Brazil the support of Divaldo Franco in divulging the Alliyana method.


Translation:
Eleni Frangatos
eleni.moreira@uol.com.br

 

     
     

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 Revista Semanal de Divulgação Espírita