The family had a child whose birth is all very expected. But all of a sudden his birth was accompanied by great difficulties and experiences. Parents feared so much to lose a child, learn that their baby has serious problems in the development, though its threat to life behind.
According to doctors, the child turned out to be multiple congenital malformations, complex disorder, severe birth defects, which cast doubt on his “normal” development.
The lives of many of these families is changing dramatically, becoming divided event of a sick child birth to two very different periods: at life “before” life “now”. “Before,” it was like at all, and “now” – nothing on a similar, special, difficult situation of grief and misery for all family members.
And as long as parents do not meet anyone who has experienced a similar, they think they are the only ones in the world with whom such misfortune happened, and no one can understand them. They may feel completely abandoned and confused, so sometimes willing to follow any advice or suggestion is often wrong.
This family situation, as a rule, is more dramatic in a single sick child families. In families where there are already other children, the situation is more stable. We had a chance to watch the education of children with severe multiple disabilities in families where there were already two older healthy children, and many families are safely cope with the new situation. But we have seen other cases where after the second birth, the sick, the child attention and interest in older, healthy, weakened family, all family-friendly junior subordinated education that had serious consequences for the older child and for the family as a whole.
Many mothers almost immediately for the report on the severity of the disorders in the newborn hearing persistent advice to abandon a sick child, and put it in the child’s home, because they can not cope with it without the constant involvement of doctors in the treatment of his personal and can not achieve in his upbringing. Some parents give up their children. These children are placed, usually in a special department of children’s homes, where they are concentrated in health care workers who are trying to petition for the treatment, including a prompt, but very often this treatment is delayed or does not occur.
In memory of history were several children who had to consult in orphanages.
The first story – a story of a blind girl with congenital cataracts in both eyes, which could see almost normally after timely surgery if not given immediately after the birth of her parents and she would be in the child’s home. Operative treatment in the clinic all the time delayed due to various infectious diseases and quarantine institution, because of the complexity of the child’s placement in the clinic without constant care and support from loved ones. Waiting for eye surgery and preparing for her child all the time was in prison, where he was met only by a doctor and a nurse. For a long time the baby remained without attention from the teacher and the teacher. As a result of cataract surgery was made very late and vision has improved very slightly. In addition, in a children’s home has been difficult to organize aid in the postoperative period, it is very important to restore vision. Girl behind in development, it required special conditions of education because of the deep visual impairment. From the usual children’s home, she was transferred to an orphanage for blind children with mental disabilities, and after 18 years – in the psycho-neurological boarding school for adults.
The second story involves monitoring the development of another little girl who was born with severe deformities of hands and feet, which could be operational in a timely manner to correct, if a birth was close to loving and caring parents. But from the girl refused, and we watched it for many years in a boarding house for mentally retarded children: a splayed hands and soles of the feet, she learned to walk on his knees, to read and write. This helped her in every possible way the teachers and educators of boarding. But in the future it is also expected to transfer to another institution of adult wheelchair.
Experience our counseling orphaned children with congenital complex developmental disorders, which were in children’s homes, a small but heavy enough. Much more optimistic looked stories of children whose parents were forced to due to various life circumstances (severe housing and financial conditions) to give the education of kids in the child’s home, but continued to visit them there and follow their development. Only one institution, where such children fall at an older age, – an orphanage for deaf-blind (Sergiev Posad), we could see further progress in their education and training, and then to see them live on their own, and even working in the department for adult students this institution.
More recently, we learned about the history of the sufficiently safe Ruben David Gonzalez Gallego, suffering from a severe form of cerebral palsy from birth all the way past the child’s exemption in the Russian state orphanages, of which he wrote the autobiographical book “White on Black”.
We know cases when the child refused the mother, but her grandmother could not go through it and soon to adopt a sick child, raised him to his family and trained in a special school.
We have seen families who had their healthy children and to adopt others, including very sick. One of the latest of such meetings was remembered especially.
The family adopted a baby who was born without arms and legs (no hands and legs below the knees). It was not the first adopted child, but the worst, they are simply “could not pass by, seeing the eyes of this girl.” They took the girl to his large family and nursed it all together. But she grew up, and together with its development was to come the realization severe violation of its movements. They began to learn about the possible surgical intervention and prosthetics. All this required many trips for consultations in the central clinic of the country, spending and breaking up with the other children. Began to feel the need to choose the future path in her upbringing: attach if all power to its treatment, many operations, many months of rehabilitation clinics, constant change of prostheses, relegating to the background education of other children, or live on the interests of the whole family and bring up a daughter with severe movements, helping her as much as possible to realize their potential: to drag her by turns on his hands and on the back until it is small, to come up with it all sorts of devices for movement and grasping, prepared to discuss with it its unusual compared to other, learn to adapt to its characteristics, without giving up a possible deterrent to the girl and her family treatment and prosthetics. Foster parents have chosen the second path, and general care of the youngest daughter of a large family that rallied even more strongly.
The appearance of a child with obvious disabilities – it is always a profound experience of all the members of his family. Usually it is the experience of deep shock by the information that the child has not one, but two or more severe violations. As a rule, then parents have a sense of “defensive denial,” which tells us that this can not be, it’s not true, not true diagnosis, or the inability to cure. Many families at this stage experiences throw all the forces at his treatment, looking for the most skilled and knowledgeable doctors take out the newest drugs, go to the most famous medical centers in Russia and abroad. But over time, reveal little result for Child Health and Development, which cost the enormous effort and sacrifice on the part of the whole family.
Especially heavy picture we see in similar situations in families with children with retinopathy of prematurity, born much earlier period and had a blindness, and in some cases, and other violations. Parents experiencing particularly difficult child blindness and were doing their best to find a doctor who will return their child vision. But in those cases that we have seen the defeat of it was irreversible, and all the doctors’ efforts have led only to a cosmetic effect. Surgeons ensure that the affected eye is not reduced in size, it is not covered by a cataract, and so on. D. But these operations are taking place about every six months, and treatment stretched from birth to 3-4 years. This meant that the mother of a sick child with the necessary preoperative examination was held in the community and went for an operation in a certain hospital where the child was operated on one eye and scheduled the next operation on the other. Such operations and preparations for them were the life of this family for quite a long and extremely important for the future of the child’s mental development time. All these operations were under general anesthesia, and the postoperative period require special rest. Some of these children have suffered for 3 years 5-6 of operations, which did not give a tangible result. At the same time the general condition of children is sometimes worse, they became more nervous and timid, some decreased hearing. Parents tormented, but long abandoned hope for a cure. Only with time they refused from such operations, and began to organize their lives with the blind child at home. Comes the stage of adoption of a child: it was necessary to accept the fact that he is blind, learn to live with it, to present it today and the coming difficulties, to find experts to help deal with these challenges.
Parents who adopt a child such as he is, and closely watching his reactions, enjoying any active and independent child activities tend to achieve great success. The crucial point in all known cases, the successful development of deafblind children is precisely the sensitive and creative attitude of parents to child, through which could adequately pass the initial level of education of the child in the family before entering it to the school.
Of great importance for the normal development of the child has his own activity. Studies show that the interaction of the baby and mother, which is the main driving force behind the mental development of children, to a greater extent depends on the initiative of the child. Healthy children are constantly demanding attention to themselves adults, and parents depends on how this activity will be understood, how lovingly maintained and how is pointed in the right direction.
But it is difficult to notice, understand and support is very weak, and sometimes the nature of the unusual activity of the patient with the birth of a child! In order to safely and confidently care for the child, to closely monitor his condition and understand it properly, parents first need to cope with their depression and despair. And this is the most difficult task.
Typically, more than feelings experienced mother who constantly fears for her baby since birth and the first to know all the new details about his serious illness. Often this is accompanied by its own physical suffering from the effects of severe pregnancy and delivery, post-natal depression. It is extremely necessary assistance of all members of the family in child care and understanding of her condition. In another, more secretive and reserved, usually suffering from a severe condition of the child’s father. And if he is removed from the worries, all the more away and it feels unnecessary. In different ways, but it is also difficult to survive the newborn disease grandmother and grandfather, brothers and sisters. Not only the child and his mother, and all members of the family in dire need of the support of each other.
The greatest support for other parents may have already gone through a similar and have found strength for the proper upbringing of the child with congenital multiple defects. It is very important to know that your case is not unique and not unique, that the same (or nearly the same) children were brought up (or brought) in other families. The timely receipt of the parents information about this can significantly improve the situation in the family.
In recent years, there are books and articles written by the parents of children born with severe impairments, which tells in detail the experiences of parents and what challenges they have met, bringing up her baby.
About how family life varies depending on the requirements and personal features of doctors, teachers, psychologists and schedules of their work can be found in the works of Brown Norman, a British expert in children with congenital multiple disabilities – the father of the boy who has had rubella in the womb, and who had deep visual and hearing impairment. One of his article was translated into Russian and published in “Defectology” magazine. Having lived through the death of his deafblind son at a young age from heart failure and raise healthy daughter, he calls very carefully relate to the feelings of loved ones: do not forget that each family member is a person and in need of self-realization, do not be ashamed and do not hide their feelings, and share them with loved ones. Also, he says, it does not just happen to talk about his problems with his wife, eternally tormented and upset.
“… To save the marriage can become a serious challenge that the time when we are free and liberated, we are living apart from our partner. We rarely receive the opportunity to be just two of us, unencumbered care for the child. The danger is that the marriage partner becomes associated with difficulties, and there are no problems – with other people … ”
Several years ago we published a translation of the remarkable book Carolina Philps – mom, who raised three children, including an older girl with Down syndrome. This book is called, “Mom, why do I have Down syndrome?”. After a long and difficult journey, and achieving considerable success in raising her daughter with a serious illness, Carolina thanks all the members of his family for their support and look back on the early years of motherhood, recalls that it needed time to wise advice of experts and the experiences of other families who have experienced similar. She writes about the oppressive feeling of loneliness that separated her family from families with healthy children. Oh how jealous husband, who can leave home to work and get away from everyday worries. To learn how to help her cope with an ability to admit to themselves and others in their feelings. The fact that teaching his little and unlike other children Lizzie, she studied with her, “and learned to accept it, and ourselves as we are.” In her book, she argues that the trial coming to parents in the first months, are associated not with the child, and with the fight taking place in their souls. As difficult and sometimes impossible to recognize that their own child is not like the others, and it will be more available!
These and other similar works written by mothers and fathers of sick children, can be very helpful to other parents. A huge relief can occur when a mother with experience in the education of sick children, will meet with other mothers, fathers – with other fathers and brothers and sisters – with other brothers and sisters, and be able to share their experiences with those who understands and shares the the same fears and feelings.
A special role in all these numerous problems of families with children with severe and complex disorders, belongs to parent associations and other voluntary organizations supporting persons with disabilities. Active communication and activities of mothers, fathers, brothers and sisters of people with disabilities can significantly support their own emotional and spiritual state in these organizations help to achieve more attention to people with disabilities by state and local authorities. Experience in the United States and Western countries shows that all of their achievements in the field of education and social protection of persons with disabilities achieved thanks to the social activity of their loved ones. Although such organizations is rare, always worth asking them to work and help as far as possible in our country. It does everything you need to support any informal associations of parents who want to help each other in the education of sick children, the organization of joint leisure.
It also needs timely support professionals who believe in the ability to help your child with any violations familiar with the practice of psycho-social support of family and child-rearing practices such severe disorders as mental retardation, early infantile autism, cerebral palsy or Deafblindness. But the support of specialists must be very well thought-out and taking into account the state of the parents and other members of the family of a sick child.
Unfortunately, the special service early psycho-pedagogical assistance to such families in our country does not exist or it is only formed in certain cities and regions, it is increasingly having to psychological, medical and social centers (PMSTS), in other similar organizations. Our experience in this center shows that the first concern of psychologists and teachers, designed to assist the child with severe and complex disabilities, is to help his parents. Organization of early intervention for children with complex disorders should begin with counseling their parents.