Help to Special Children
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Mission Statement
NGO "Help to Special Children" was created by parents of children with autism spectrum disorder, with the goal of developing certain products which could help children and their families to improve the health and development of children with ASD so that the child feels independent, confident, healthy and wanted in society. In the process of treating our own children, as well as working with families in which a child with autistic spectrum disorder grows up, it became clear how powerfully autistic spectrum disorder affects almost the entire family. This is not only a child's disease, which can be treated with world-famous methods of medical intervention and corrective work on child development. This is a difficult examination for parents and other relatives, a great psychological test of endurance and limitless love and patience. On the one hand, a child with an autistic spectrum disorder experiences very severe suffering, including unbearable pain due to systemic and neuroinflammation, a large number of accompanying comorbid diseases not only related to the brain, the inability to navigate in the surrounding world due to impaired brain development. On the other hand, there are parents whose child is suffering before their eyes. The lack of clear protocols for the treatment of a child is due to the fact that each child with ASD has his own unique impairments due to genetic characteristics, as well as due to the variety of environmental circumstances, events and triggers that together lead to such a severe brain disease and other comorbid diseases. All the burden of diagnosis, treatment and development of the child lay on the shoulders of the parents. This requires parents to quickly study and apply all the knowledge necessary for this - medical, pedagogical and other. All this happens against the background of powerful psychological stress for both the parents and the child with ASD. Our mission: 1) to simplify the process of finding all the causes of a child's illness as much as possible, 2) to prepare for the parents a complete individual list of all the necessary examinations and tests of the child, in order to compile an individual health history of the child 3) to help organize the consilium work of doctors, rehabilitators and correctional teachers for the child - directly or online - to build a quick, effective and synergistic program of treatment, rehabilitation and development of the child, 4) to alleviate the effects of psychological stress in a family raising a child with ASD by providing clear schemes, organizing the process of diagnosis and treatment, teaching parents how to work with the child at home, because 95% of all work with the child is done by the parents themselves, so in the case when parents understand how to do it and why, psychological stress is significantly reduced. This can give parents the opportunity to live a full life, to combine caring for a child with work, entertainment, leisure, which is very important for the mental health of parents, the child and the family as a whole.
About This Cause
For several years, we have held the following events at the expense of donations from our partners: - trainings for parents and specialists on many issues related to the health and correction of the development of children with ASD - inviting doctors, osteopaths, correctional teachers and other specialists to diagnose and treat children with ASD, as well as training parents and local specialists in methods of working with children with ASD. In the process of work, the following conclusions became even more clear to us: 1) the range of actions which must be carried out in relation to the child and the family, first of all, at the stage of recognition of autism spectrum disorder, accompanying comorbid diseases as well as disorders and gaps in development (physical, sensory, cognitive, verbal, social) is so wide, that for their implementation, many families spend at least from six months to a year, they visit about 50 specialists (including doctors) and spend extremely large amounts of money (for example, up to 10-15 thousand US dollars – it’s a huge amount for Ukrainian families); 2) the range of actions and activities that must be carried out daily with children (specially individually selected nutrition, special individual treatment, correction of the body sensors, physical development, as well as brain development in terms of the cognitive component) is extremely wide, and in addition, simultaneous work on all directions is required, tracking the dynamics of health recovery and development. And here it’s a need to apply knowledge from several rather large areas - medicine (8-9 specialties, if you turn to medical specialties), pedagogy, rehabilitation, psychology, especially that part called applied behavioral analysis, 3) there is still a lack of specialists - the rate of growth of the quantity of children with ASD is so high 4) 95% of the child’s success in overcoming most of the problems created by autism spectrum disorder depends directly and only on the parents 5) in order to ensure that a child effectively overcomes an autistic spectrum disorder, it is necessary to pay attention every day for at least 18-20 hours (without exaggeration), of which only to physical exercises - at least an hour, to classes on the development of the cognitive function of the brain - at least 3-4 hours, to speech development - at least 2-3 hours. In addition, the selection of individual nutrition, correction of the child’s behaior, training in basic, functional and household skills, response to the reactions of the child's body, observation of the state of health, which is so unstable that some parents sleep alternately - father's day, mother's day, 6) a really large amount of funding is required to provide the entire range of necessary classes, treatment and nutrition. These problems could be neutralized significantly if parents are given a very clear plan of what to do with the child, where to go, where to exercise, how to exercise at home, up to detailed, simple instructions for performing any exercise with the child, even with planning a day. According to our experience (as specialists, and most importantly, as parents of children with autism spectrum disorder, because we are parents of such children), this will definitely eliminate the problem of wasting time, because parents spend an excessive amount of time studying the issue of ASD, and then delving into rather complex areas of knowledge, and then planning specific actions with the child. This will definitely eliminate the problem of losing excessive financial costs, as parents will not "try" different, sometimes not specifically needed for their child, and sometimes downright harmful or fraudulent (by some "specialists") measures. Parents will clearly know what to do in a certain period of time. For this, our specialists use a single consolidated file, built in such a way that parents, doctors, rehabilitators and correctional teachers could use it as a form for filling in the child's initial data, data from treatment schemes, rehabilitation, correction and development of the child, tracking the dynamics of recovery the child's health and the results of all therapies. Such a "Passport of the child's health and development", the presence and maintenance of which will ensure full-fledged work with the child at any period of his life, with any specialists and doctors, even if they enter the process of working with the child not at the beginning, and after some time. This is the complete vital information that is needed so that all adults (parents and professionals) could work together in a united and coordinated effort to help the child overcome comorbid diseases and autism spectrum disorder, as much as possible for a particular child. Since each child with ASD has its own individual causes of the start of the disease, its own genetics, its own circumstances of the surrounding environment - this document will be an individual protocol for the treatment and development of a specific child. Our task is to help parents, doctors, rehabilitators and correctional teachers use this document, distribute it freely to all parents of children with ASD, and also train all interested people (parents, doctors and other specialists) to work with this document, increasing the effectiveness of individual work with a specific child with ASD. It consists (for now) of the following parts: 1) a complete survey on the health of the child, including specific medical questions, a description of the life of the child and the family, life circumstances, circumstances in the family - such questionnaires contain about 2) a survey of critical genes that affect systemic conditions of the body, 3) a complete survey on the nutrition of the child and the family, drugs taken by the child, household chemicals used in the family 4) all examinations of the child, with a plan that needs to be examined for a complete picture of health, 5) tables and diagrams that facilitate familiarization of specialists with medical data, 6) interpretations of the most common disorders in the health of children, including the medical indicators and aggregates that may indicate this, which will greatly simplify the work of doctors who have no experience working with children with ASD and will thus be able to gain additional knowledge for working with a child 7) questionnaires to determine the status of the child's sensory systems 8) questionnaires to establish the level of physical development of the child 9) questionnaires to determine the cognitive development of the child 10) lists for planning "gaps" in cognitive, sensory, physical, verbal and social development 11) specific exercises for teaching each of the skills, with reference to the necessary materials 12) the exact learning materials, which are most in demand 13) reliable and verified information on the properties of dietary supplements, which are usually used for certain comorbid diseases that aggravate ASD. This information will be provided in order to eliminate the behavior of parents, such as "I will try, because one of the mothers tried, and they help to her child "; 14) reliable information about pharmaceutical drugs that are usually used by doctors (neurologists, epileptologists, hematologists, immunologists, gastroenterologists, endocrinologists, etc.) in the treatment of children with ASD from painful conditions in the child 15) explanation about nutrition, with recipes of dishes that can be used in case of certain health disorders (in case of increased ammonia, in case of histamine intolerance, in case of intolerance of gluten, casein, in case of intolerance of phenols and oxalates, etc.). This Passport, when parents fill it out, will allow any number of doctors to be consulted, even remotely. All information about the child's health will be collected by the parents in the most scrupulous way. And therefore, no more time will be wasted on re-examining parents by new doctors. The problem of the doctor's "lack of time" is eliminated (this is an objective problem that no doctor could eliminate, and it is unfair and pointless to blame the doctor), the problem of parents forgetting about some facts, not paying attention to some issues, according to the parents thoughts, is eliminated are not important, but in fact can be decisive for establishing a diagnosis. The problem of "excessive fantasies" of parents who do not have a medical education, is eliminated, when parents can adapt some facts to their own imaginations. The problem of the unavailability of doctors in other countries and cities is eliminated - with such a volume of collected data, doctors could connect to work with the child remotely and do only their direct work - thinking, know what's what, diagnosing and treating. This Passport also provides an opportunity to collect data on the child's physical and cognitive development without additional financial costs. After all, before planning developmental lessons, they need to figure out exactly what level of development the child is at. The Passport helps to collect and systematize this data, as it contains all specific questionnaires. And all this is competent, fast, save in terms of finances and effective work on the part of the parents. This work will also help any specialists work faster and more efficiently with products provided with such passports.