“…we started to believe in ourselves and saw that we were not alone, that it was worth being active and changing the system together with the civil sector. Activism is learned!”
– Krasi, tell us about your experience as a parent of a child with intellectual disabilities. When and how did you discover the pros and cons of the protection system? What can one rely on the system for and what is left entirely to the family to deal with?
Our son was still little when I realised that he had some difficulty. Back then, parents had practically no support from the protection system. I tried to find everything alone. They didn’t want him in the nursery and they didn’t work with him in the kindergarten. They only showed me his empty notebooks. I’ll never forget, when he was in kindergarten, how they didn’t put him in a performance they’d put on for the parents. They had staged, with the other children, The Old Man and the Turnip. My son knew all the lines, but never got to take part.
This was the turning point. He was about to start school. Then my husband and I spoke, and he told me, “Darling, your work life is now over.”
To get in the first grade, my son had to go through a whole series of checks, but then the experts decided that it would be best to postpone for a year, because otherwise he’d have to repeat a grade, or to put him in a special school. I said no. I told them that if he had to, he’d repeat, but he’d start with the other children of his age. That’s how we ended up with a very good class teacher and we worked together with her. In the meantime, we also found a wonderful speech therapist in a private practice, who worked with our son until the 12th grade.
He had a hard time at school. He went to classes regularly, and then to the speech therapist, then back home, with us both, so we’d catch up. I’m very grateful to my son. Not once did he say, “I’m tired, I can’t do this anymore.” During the holidays, in winter and summer, and at weekends we were always working.
I was grateful to the state that there already were centres to work with such children. We were also transferred some money which I used to pay for the private lessons (there wasn’t enough for more). Upbringing and work is for the family to take care of. Mine gave me its full support.
Our nightmare began in the higher grades, after the eighth. We didn’t get any support from children or teachers. I don’t even want to think of this nightmare of insults and humiliation. Everyone wanted him to change to qualitative evaluation (the one with the asterisks), where they don’t get a diploma, just a certificate. But what about all of his hard work?! Again I said no, and, with a lot of effort, we finally got to the coveted graduation exams. The funniest thing is that our son managed to pass his exam in Bulgarian from the first try, unlike many of the “normal” children, as the experts call them. For the second exam, we had to work extra hard to make sure he’d pass.
Today, our son is a part-time dishwasher in a bistro under a sheltered employment programme, and the rest of the day he spends with his friends at the day care centre. He is very happy at the moment.
If I have to describe the protection system based on my personal experience as a parent, I can say that there wasn’t enough practical information for parents of children with intellectual disabilities about where to find real day-to-day help for their children; there were no trained professionals to give systematic support to our children as they were growing and learning; there wasn’t any inclusive environment for them – in the park, at school or kindergarten, in children’s clubs and centres…; we, parents, were not included when decisions were made about our children; there was no individual approach from the protection system, and that’s the most important thing; true, there were some general provisions, but were they good for each child?! Families didn’t get support from the system, so many parents couldn’t cope, they got tired and gave up, some even abandoned their children, which could have been prevented if there had been social services and timely long-term care policy for families of children with disabilities.
– In your personal experience as an activist parent, what are the skills that a parent should have to become an active advocate for their child’s rights?
Each parent must first and foremost have a very strong bond with their child, and know the child’s strengths and weaknesses. They must appreciate the tiny little steps the child makes; they must encourage the child, be right by his or her child when the child’s feeling down; talk, explain and develop the child’s potential by turning defects into effects; they must talk with the child and look for ways to help him or her first, and only then to help the other children.
Parents must be proactive, they must advocate for their children’s rights, as well as their own.
Now, it’s easier to find the information you need, it’s all online now, but back in my time, we were passing it on, one parent to another. You saw the flaws of the system, you started looking for other people who were in the same boat, and you began to fight. We were turning for support to the municipality, the municipal council, then we looked at state and international level, but it was NGOs, many of them, that stood behind us, even international ones. With their help we started to believe in ourselves and saw that we were not alone, that it was worth being active and changing the system together with the civil sector. Activism is learned! When you take part in activities together with other people, or in NGO projects, you develop new skills: how to speak in public; how to be part of a team; how to propose solutions and defend them before the authorities; how to talk to politicians and professionals from the protection system; and sometimes even to take the lead in those actions. If you start on this path, you realise even more clearly that parents have rights that can’t be violated or ignored by the system, and that’s something you wouldn’t want to put up with.
– How did you start advocating for the rights of other children, like those in residential care? What support did you need to scale up your fight with the protection system, not just for your own child, but also for all vulnerable children and parents?
When I saw that I was able to help my child, I decided that I could also help other children, and we got together with some other parents who thought the same. This happened because we were backed by NGOs. They gave us the chance to speak up and we took it. My son is a good friend with some boys from a sheltered home and we used to visit them very often. I saw them grow and develop, and how their development was of no use, since they were declared “incapacitated”, while they too can help, not just themselves, but society as well. That’s why I always speak up and stand up for them.
My son also developed self-advocacy skills as one of a group of young people. I was very pleasantly surprised and encouraged by his development. I told myself: if he can, so can I. Not everyone gets the chances we got, and I decided to help more parents and children by telling and showing our problems to the world. Now it is much easier for parents, and we need to come together and actively fight for the best conditions for our children in spite of their differences.
– What would you advise younger parents who are in contact with the protection system to do and work on in themselves in order to become active advocates for the rights of their children and for the change of child policies and procedures in Bulgaria?
I think that first of all it is important to think about who we are as parents, and to do what we have to do to bring up our own children rather than wait on the system. In today’s hectic life, less and less attention is paid to children and their upbringing at home, we rely on the school to do this, but that’s not what it’s for. It should definitely educate them, but not bring them up. Personal example in the family is the most important thing. Who will teach the child to greet people when passing them by outside, to be polite, to take off his or her hat when going in, to say “please”, “would you mind” and “excuse me”. All of this means communicating with the child and knowing how he or she is feeling just by looking. At the same time, you need to engage with the professionals working with your child and know how you too can help. This is mutual cooperation and partnership.
I’d just like to get back to the young people from the sheltered home for a second. I’ve thought many times that if they were my children, if they were growing up in a family, they would have done much better. I’m sure of this. In the family, there are many more people to take care of the child, and in an institution, whatever it is, one adult is responsible for more than one child – this can’t replace home.
So, I think, that it’s necessary to work with families, especially with young and inexperienced parents, and look in on them before they’ve decided to do the most terrible thing and abandon the child. Many good services should be available for working with parents, children and grown-up children. It’s not just about the money, but also showing that you care. On paper, there are many types of services, but in reality that’s not exactly the case. The most successful community-based services can only help a small number of children. And what about smaller towns and villages and quality care for children with disabilities there? Already there are assistants, resource teachers, teacher training and special education teachers, but if the family isn’t present, nothing can take its place. Therefore, the protection system needs to give families timely and constant support so they can stick together and take care of their children in the best possible way.
Now my personal cause is to make sure that all of my hard work pays off, because, if we don’t manage to close the gap, i.e. to make sure that our grown-up children have a job, a decent education, better skills and independence (as much as they can), our efforts would have been pointless, and I don’t work for such causes. We must do it together. I’m sure we will.
Code Participation Foundation implements project “Participation, Advising, Collaboration, Trust” aiming to support a group of active parents and young people with lived experience of care in Bulgaria – “Expert Friends” of Tanya’s Dream Fund, by developing their self-advocacy and leadership skills.