The Naked Heart Children's Fund held the VII International Forum "Every Child Deserves a Family" in Moscow. It discussed early intervention programs for children with developmental disabilities. As part of the forum, Erin Barton, Professor of the Faculty of Special Education at Vanderbilt University, visited Moscow for the first time. She is one of the world's leading specialists in early intervention. Erin and experts from the Naked Heart Foundation Tatyana Morozova and Svyatoslav Dovbnya talked about what the first steps should be for parents who have learned that their child is “special” and about inclusive education in an exclusive interview with our magazine.
Erin, please tell us which families do you work with?
Erin Barton: Basically, these are families that raise children with developmental disabilities or with suspected developmental disabilities and the risk of developing them. In addition, we are approached by parents who have certain problems with the behavior of the child, but they do not have any diagnosis or disorders recognized by specialists.
Are these always families with so-called social risks: poor, poorly educated, and so on?
Erin Barton: No, not always. Children with special needs appear in any family, regardless of social status. Very we althy families come to us, in which there are children with disabilities.
What arguments do you give to parents, convincing them that their child needs help and this help should be as early as possible?
EB: Indeed, not all parents are willing to accept that their child has a developmental disability. It is more comfortable to think that he is just “different”, he will simply “outgrow and become like everyone else”. In this sense, one of our main tasks is that we must establish a trusting relationship with parents and convince them of our professionalism so that they do not have doubts about our competencies. We explain to them that professionally organized early intervention will help the whole family, improve the quality of life and make it easier for parents to cope with daily routine activities, and help the child learn important social-emotional skills and, as a result, help him prepare for school and be successful in learning and interacting with typically developing peers. We only aim to improve the life of the child and the whole family.
What do you mean by "early intervention"? "Early" is when?
EB: As soon as parents start noticing unusual behavior in their child, they need to seek professional support. This should definitely happen before the child goes to kindergarten. Better yet, even earlier. Usually, after all, parents do not notice problems in the development of the child until they begin to compare him with other children, for example, in kindergarten. The work itself goes in three directions. Firstly, we help the child to master the skills of communication and play with other children. Secondly, we teach self-regulation: understanding yourself and how to respond to external influences. Thirdly, we teach autonomy and independence: how to protect your own interests, how to satisfy your needs.
And how long should families with special needs receive such assistance?
EB: Ideally, if you go beyond the formal requirements, then until the parents themselves begin to cope with the problems of the child.
You insist that such work should be done not only with the child, but also with the parents. Why?
EB: A small child is always with his parents. If we worked only with the child, then these classes would be limited in time and, accordingly, not effective. We work with parents, train them and they apply the acquired knowledge in daily constant interaction with the child. In addition, studies show parenting-led strategies are more effective for child development.
In Russia, they are very wary of the concept of "intervention". At a high state level, it is said that any interference in the family is unacceptable, as it undermines the authority of parents in the eyes of the child. Are you familiar with this problem?
EB: In our case, "intervention" means only "support". We are not a controlling or supervisory body, we do not check the living conditions of the child, we do not look into refrigerators and we do not consider whether the child has enough toys. In addition, we do not take on the function of parents. On the contrary, our entire program is about making parents better.
We never put ourselves above our parents. We try to discuss with them what is best for their children and how to help them.
Today, parents around the world are very concerned about the quality of education and, in their opinion, the decline in educational ability (so to speak) in children. We would like to ask you first to give a little expert vision of what, in your opinion, is happening with education today? Has it really gotten worse?
Svyatoslav Dovbnya: In fact, nothing new is happening. Education, as it was different, and remained different. There are schools that teach how to study, and there are schools that teach how to take tests. The main difference of the last decades is the emergence of inclusive educational institutions. Special education – that is, education for children with special needs – has certainly gotten better. Gone are the days when, in principle, no one wanted to teach children with developmental disabilities, and everyone who did not meet the standards was sent to boarding schools or hidden at home. Now the world recognizes the right of every child to education, regardless of his physical, mental and sensory characteristics, and in accordance with this, the educational system of most states is being modernized.
Do you have the feeling that, as many media write today, children have become less literate, less attentive, they all have learning difficulties without exception? Is this so, and if so, what can this picture or this impression be connected with? How can you determine what the child’s learning difficulties are connected with, what diagnostic methods are currently available? Can any specific reasons be identified?
Tatyana Morozova: The main reason is that we have become more attentive to children. The value of children's life in recent decades has increased significantly. After all, 50 years ago we did not think at all about the important role childhood plays in human development. Science regarded the child simply as a small adult. If you look at the outdated approaches to education, it is clearly visible - in all countries the system "sit still, listen carefully" prevailed. It seemed to us that children could fully function on the model of adult behavior. And today, the characteristics of children are better studied and, based on the knowledge gained, the approach to education is changing.
Of course, we cannot say that all children have become less attentive without exception. After all, learning difficulties were simply not diagnosed before. Poor progress could be attributed to problems in the family, the social status of the parent, and so on. Dyslexia, attention deficit hyperactivity disorder (ADHD), autism spectrum disorders (ASD) were simply not diagnosed even 20 years ago. And now we have begun to pay more attention to child development, and as a result we are seeing a constant modernization of methods for diagnosing learning difficulties. And when the possibilities of diagnostics expand, then the number of children who have revealed this or that feature increases.
In Russia, learning problems are still a very socialized problem. If a child does not do well at school, they talk about pedagogical neglect, but almost do not talk about special examinations and medical care … How can parents who know the characteristics of a child talk to teachers?
Tatyana Morozova: Today everything is very good with the legislation in this area. Therefore, at a minimum, every parent should know that, regardless of the characteristics of his child, he is en titled to a school. And talking about the special needs of the child is better than immediately taking him to home schooling if he does not cope. There are practically no conditions when it is more useful for a child to be at home than in a team with peers. Therefore, it is definitely worth talking with teachers, school management and doing everything possible so that the child remains in the educational system. There is no textbook on exactly how to do this, as children are very different and everyone has completely different characteristics.
You can't align everyone to the same standard. For example, in a modern school in the US or the UK, a child with dyslexia will be given the opportunity to dictate a written work. After all, a person with such a feature has a impaired ability to master the skill of writing. That is, he can be a brilliant writer, but he is guaranteed to receive a “deuce” for literacy. Accordingly, such a student will be provided with a special assistant, to whom he will be able to dictate his essay, and the teacher will evaluate only the content, and not the spelling. In the modern educational system, the strengths of such a child can be developed without requiring him to cope with an impossible task for himself. That is, quality education is now becoming focused on the strengths of a person.
Does a child with learning difficulties need a special school, does a teacher need special knowledge to work with such students?
Svyatoslav Dobvnya: One shoe size doesn't fit all. Some people may need a special school. If a child has serious cognitive behavioral problems, then perhaps he will have to spend most of the school day in a special educational environment and only at some moments will meet with typically developing peers, for example, in the gym or at recess, in the canteen, etc.. And another child with disabilities, even with a similar diagnosis, can, on the contrary, study most of the day with ordinary peers and only go to extra classes for some subjects or receive special support from a tutor or other specialist.
This knowledge should come to them together with the child and accompanying specialists. Each teacher is not able to learn absolutely all the diagnoses found in the world and special methods of working with all children with special needs. After all, a situation may arise that a child with Down syndrome or some other syndrome will never come to some school, because in some microdistrict or village there may simply not be such children. But if suddenly such a student appears, then the system should immediately provide with the child and narrower specialists who will help both the teacher and the child.
Of course, teachers, as well as leaders of educational institutions, must have a basic knowledge of various developmental disorders, how to look for and develop student strengths, they must be ready to adapt the learning process and space depending on the needs of each child.
Knowledge about developmental disabilities should not be concentrated around the school building, it should be concentrated in specialists who accompany the child and his family at all stages of development. If the family moves to another area, then in the new school he should be provided with the same conditions as in the previous one.
How do you feel about the heated discussions about inclusive education in Russia? How can parental resistance be overcome? What is the key to education? What is the most important thing to talk about, what examples to give?
Tatyana Morozova: International studies show that education in an inclusive school has a positive effect on all children - that is, not only children with special needs, but also their typically developing peers. If a school requires a child to be “standard”, this means that it will most likely be difficult for ordinary children there to show their individuality. The positive impact of the inclusive program on all children is associated with several reasons - firstly, teachers and school specialists receive new knowledge, since such a program is usually accompanied by an increase in their qualifications, and secondly, often additional resources come to school with a child with developmental disabilities, both human (in the form of specialists, tutors) and material, thirdly, teachers and specialists are forced to individualize approaches, which ultimately positively affects all students. And most importantly, with properly organized support for an inclusive program at school, the overall level of tolerance increases, the frequency of bullying and bullying against all children, including typically developing peers, decreases.
The main problem now is that if a child with ASD or Down syndrome enters a successful class, and the teacher does not know how to work with him, then this causes not only problems with the progress of a particular student, but also with the performance of the whole class, and, accordingly, other parents react extremely negatively. This leads to the spread of fear. Inclusive education can also be made of poor quality, so professional support for inclusion is a very important component that can provide a child with developmental disabilities with the opportunity to live a normal school life, study and make friends.
What educational programs for children with special needs are currently available in different countries, how do they differ?
Tatyana Morozova: Depending on what we mean by the word "program". It is important to understand that nowhere in the world there is a special textbook for children with autism in any of the subjects. There is no special algebra for children with Down syndrome or special physics for children with cerebral palsy. All children are different. There are general strategies and therapeutic approaches. A teacher needs to have special technologies to help a child with autism or ADHD maintain attention, cope with unwanted behavior, engage in communication, etc. But at the same time, children with special needs will learn the same geography and mathematics as children without special needs.
In general, a lot of countries are now working on the availability of education for all children, regardless of their developmental characteristics, social status, ethnic group, and so on. It can be said that education in Scandinavia, Canada, Australia, the USA, Great Britain is now the most developed in terms of inclusion. That is, children with special needs more often realize their potential there, but again, there are exceptions, and we can say with full confidence that there are no ideal conditions anywhere yet.