I was chosen to be the mother of the week in the 4moms site. The interview was published in Portuguese but many friends have been asking me to publish an English version of it.
Since in this strugle to defend Arthur's rights I have been meeting lots of people in similar situation, maybe our story turning public can helpother kids too. Countries have been changing legislation to enforce the Convention on the Rights of Persons with Disabilities of the United Nations and it seems its the right time to talk about it.
“The Mom” this week is with Consuelo Martin. Consuelo, besides being very friendly, is also a warrior who fights daily against prejudice, having as main objective the inclusion of her son Arthur. As she says, her story is a story of "love, fight and overcome."
Below you will meet the life story of this bright person.
I was: Consuelo de Freitas Machado Martin, a lawyer with Master’s degree, professor in university and lecturer in four institutions. Before the birth of Arthur, I was preparing my PhD project. In addition, I was practising law, especially in the area of international law, represented some foreign agencies of International Adoption and I used to travel a lot.
After motherhood, I am: Consuelo, the mother of Arthur and all what comes with it...
How many children and what ages: My eldest is Ana Helena, 9 years old. In reality she is my niece and god-daughter, but for me she has the status of a daughter. My youngest is Arthur, who is 6 years old.
Works: Currently yes, I am back again in my law practice. Arthur is a very expensive kid and I must work,however, I do not have the flexibility to travel as I had before.
If so, where is the baby: Arthur's birth was followed by a whole year of living in hospital. After a year, there was the possibility of transferring him at home with a home-care, as long as were living with my mother, who is a doctor. The transference from the hospital to the home care service was a family decision trusting on the abnegation and partnership of each member of the family and on its befefits for Arthurs, what allowed me to get back to work in the last two years.
Why did you choose this home care: My priority is Arthur. Arthur can not be without supervision of a family member despite having full time nursing care. All direct care such as food, medicine, hygiene, is done by me or by his grandmother, with the help of a nurse. I do assist all therapies that must be done in a easy, stress-free manner, always respecting the will and the health of Arthur, without any suffering. Arthur sleeps and wakes up next to me, calls me when he needs and, for several times, he woke me up looking for help, showing me he was not all right. Nowadays he knows exactly who to call with his non-verbal language, when he needs help. We have a common agenda for all the family members that enables us to provide a full-time assistance directly to Arthur.
How and when did you found out what your son has: I discovered that there were problems about 36 hours before birth, in the last ultrasound, when the doctor found the evidence of polyhydramnios (excess of amniotic fluid in the amniotic sac). Although for me it was something unknown, I noticed it made the face of my mother, who is doctor and was with me at the examination, pale. My mother did not try to hide the existence of problems, but, together with the obstetrician, they tried to calm me down to prevent a labour with much stress. However, nowadays, with the internet, we can all search deep for answers and I found that, at least, my son could be born with an obstruction in the digestive system.
How did you react: Of course, the hours that followed until delivery were full of tension, anxiety and prayers hoping for a miracle. Obviously every mother wants the best for her child and the best for every child is to be born healthy. Like every mother, I went through all phases of questioning. How? Why? What did I do wrong that could have harmed my baby? Etc. I think that initially the parents are immersed in a deep sense of guilt, as if they had done something that could have harmed their son. But with love comes the phase of acceptance.
Faced and faces a lot of prejudice: Everyday we live with prejudice , neglect and misunderstanding. Still in hospital, experiencing a prolonged hospitalization, we faced situations related to rights of visitation and family monitoring, rights for a second experts opinion , right to inspect medical procedures and even concerned statistics,including death statistics. As crazy as it may seems, I was called by a head doctor and invited to exchange hospitals because she did not want to have the death of my son to happen in her unit, when he was only two months of life. I can say that a long period of hospitalization is not easy. In my case, we were treated with great inhumanity.I have never been so mistreated, so humiliated, never had my rights and dignityso slandered as it happened during this period.And if this happened to me, an educated person, a lawyer, with a doctor in the family, a person aware of its own rights, imagine what does occur with the less fortunate people. At the hospital, we are hostages of a situation, we have no other way out, we have no choices. Nowadays, we are currently experiencing severe prejudice and exclusion in a private school in Rio, where people do not respect the differences and do not think that many of those who exclude us today may, one day, be in the same situation and be excluded.In fact, these people consider that inclusion brings harm to other children and financial loss to the institution.
I'm taking my son out of this private school, after 3 years of struggle for his inclusion, aware that I have not lost a battle, I only assured his welfare. I paid an associative share and expensive fees so he could join the institution. During these three years, the institution has never made any investment on behalf of needs, not even pedagogic, on the contrary, they spent all the time wanting Arthur to be fit into the school method, without respecting his special needs. Despite all the different materials and support totally provided by the family, the school tried to create situations in order to withdraw him from school by placing a locker on an access gate to the main courtyard and prohibited to Arthur to use this area, in May this year, which prevented his medical care on an emergency situation putting his life at risk within the school environment. I spent a year paying a monthly fee more expensive than a college, so my son could not even attend classes due to prejudice. The situation was reported to all competent authorities were since May 2010, at all levels (Ministry of Education, Child Protection Council, the Public Ministry, Department of Human Rights) but they failed to act in the interests of the child, a human being under development, with a special status for being disabled.
What surprised me the most, after 15 years of work in Child and youth advocacy , was the attitude of the specialized Court not guaranteeing the immediate injunction, so Arthur could be back to school, since services are paid to the school, disregarding the Principle of the full protection of the Child, the Principle of Best Interest of the Child and the guarantees of the Convention on the Rights of Persons with Disabilities. This Convention which, in Brasil, is the first Human Rights International Treaty with the status of Constitutional Amendment (passed in each house of Congress, in two shifts, three fifths of the votes of its members). When the judge of the Childhood and Youth Court failed to appreciate preliminary the injunction to guaranteed his stay in school, she based her decision on the fact that Arthur has been away from school since May – that decision was very prejudicial taken based on the fact he is a disabled child because no judge would let a "normal" child to lose a year of school life! I must also stress out, that Court also ignored that inclusion in regular school was prescribed as medical treatment, that Arthur is a paying student that has rights as a consumer of services he is paying for. Thus, the omission of Court allowed the continuation of the damages to my son's rights, allowing the school to continue to receive for a service not given, against the Consumer Protection Code, as well as interfeering with the continuity of medical treatment prescribed by a multidisciplinary team: the inclusion and socialization of a child who has been living lived in home care for his whole life. The authorities, in Arthur´s case were only seeking for an eternal agreement between the parties and at did not take an effective measure to enforce the law.
When there is the possibility to conciliate,often there is no need to reach an authority. Of course,the authorities should,at first, to try to conciliate but, of course, they shouldn’t wait whole year, allowing the continuity of the damage to a disabled child. Weak authorities allow the weakest part to succumb to the the strongest part will, and in Arthur's case, the inefficiency of the State Authorities to ensure the continuation of medical treatment prescribed and his safe school inclusion, gave us no other option but to restart the all over again in another institution. Unfortunately, the three years spent of school inclusion and adaptation in this institution were lost and Arthur is the only one suffering with this loss. There's no point to have laws guaranteeing the inclusion and the rights of people with disabilities if there are no authorities able to enforce the law and exercise the power given to them by the State to protect the interests of the minorities and not the interests of the institutions/schools. Arthur is not the only one suffering, I know disabled children that have gone through five different schools. There are many children suffering from exclusion, children whose enrollment in a school are not accepted because of their disability, children who are requested to leave schools because they dont fit in the pattern of "students profile" on schools that want to compete for statistics and approvals in Universities. People blame the lack of preparation, but it is not, what prevails is the lack of interest and humanity. Since the origin of the world there is natural selection. In all species the mother herself stop feeding the disabled ones that are unable to survive, which is understandable in irrationality,but not with humans beings.
What kind of people’s reactions bother you a lot: What bothers me the most is people's desire to isolate and exclude the disabled, especially children with neurological problems, treating them as if they were sick, freaks, a undesired weight to carry, something unpleasant, the desire to segregate them in special schools in order not to impose the coexistence with teachers and other “normal” students... In Arthur's school the entire family started to be treated as if we were carriers of a contagious disease, my niece started suffering bullying and being excluded from the moment of his enrollment at the same school. I have seen cases of families that considered spending on therapy and treatment of their own children an investment without return! We are talking about human beings, people under development, children who have special needs and need love, attention and respect so they can develop their full potential.
A remarkable act for you: In these six years with Arthur, fighting for his life, we went through the hands of all kinds of professionals: a few, weak and numb, must be just forgotten, others will suffer knowing what is to be the patients or parents of sick children because the God´s justice may be slow, but will prevail...
Luckily we could also find a few people that made the difference, seeking in their profession something more important than money and fame ... People who, above all, stand in the others place and gave us the hope to continue. These are the remarkable to me, those professionals who have fought for my son´s life with love and dedication that went beyond strict compliance of their professional duty and devoted to him love and respect. As the Brazilian author, Cecilia Meireles, said: "There are people who talk to us and we don't listen to them, there are people who hurt us and don't even leave a scar, but there are people who simply appear in our lives and mark us forever."
Best Distraction: Play with my children.
Icon: My icons are my parents who always gave priority to the family and built the structure that my sister and I have today to ensure a stable and secure family life for our children. In fact, my family is an icon. Nowadays its something very rare in the world: a household composed of one set of parents with two married daughters and a couple of grandchildren, all together, always valuing the collective and the well being of everybody, especially children. Nowadays, people think first for their privacy and individuality, the opposite of what we recommend in our home.
Being happy is: to appreciate the simple things in life, health and progress of the children and our loved ones - when you're healthy all the rest is a consequence.
The greatest dream is the recovery of my son. Dream to see him walking and talking, which may lead an independent life. Dream to be able to walk with him without restrictions and finally, someday, be able to take him to Ireland to visit his grandparents.
Hours of sleep per night: Around 4 to 5 hours a night - the biggest problem is not getting a full night of uninterrupted sleep.
Moments of enjoy with husband: We enjoyed every moment, the decision to have a son and a family was from both of us. Since Arthur came home, for about six years, we divide our room and our nights with my son and a nurse. Both have the awareness that one slip can cost the life of our child, and therefore we can not afford any mistakes. My husband and I enjoy each other watching our son who is the realization of our love. His progress, every therapy, every game is our focus, our main goal in life. We value and order the priorities.
A tip for future mom's: Do not compare your child expecting it to be like other children. Children are different, unique, each has its own time and its own potential to be developed. In God's eyes, all children are masterpieces that He planned and so we must accept them.
A proved recipe for the small ones: Lots of love, affection, patience and to know how to respect the limit of each child. And above all, to have faith and perseverance.
An unforgettable program: All programs with Arthur to me are unforgettable and unique. Each walking tour is a learning experience for him and for us. Every time Arthur is presenting us with a progress.
The perfect trip for the kids: So far, Arthur only made one trip. I fulfilled my promise in the Intensive Care Unit to take him to the Cathedral of Our Lady of Conception Aparecida and took him personally to Her after giving himself to Her on a prayer for his life. It took months preparing the event. We set up a true super-production: authorization of the entire medical staff, selecting known hospitals and physicians in the path and in the region which was about to visit, the presence of his grandmother that is a doctor and previously chosen trained nurse.
It was a family trip - grandparents, uncles, Ana Helena, Arthur, mother, father and nurse, all in the same car – 9 people who were supposed to be his reference in a strange environment. We hired a Chale in the best hotel by Penedo with capacity to keep all the family together, with the sureness Arthur would only be fine if we were not divided into separate units. The hotel was prepared to receive us and serve as the base for the rest of the other half of the route to Aparecida. All Arthur needed was brought from home, his special feed formula, his organic frozen soups, a complete pharmacy, oxygen, all appliances electrical and with battery, double and with spare parts, everything to avoid any setback. Despite all the work, all the tiredness, the complications, it was a magical, perfect trip.
