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.