A child’s strengths are reflected in the strengths of their parents
Masa is a girl who got diagnosed with autism when she was four, and this is a story about her development and her parent's efforts to provide her with the best opportunities for development and success
Belgrade/Bor, Serbia – February 2022 - “A bee”, six-year-old Masa from Bor, in eastern Serbia, says cheerfully, while her mother is showing her favourite toy. Until recently, words seemed foreign and distant to Masa, at least that’s what it seemed like to her parents Sanja and Goran Dragutinovic.
“Previously, Masa used only five to ten words,” says Masa’s mom Sanja. “Words came and went, despite all our efforts, when she tried to say one word and failed at the first attempt, she would simply never say it again.”
Masa didn’t respond when called by her name. And when she wasn’t allowed to do something or was not understood, she would become upset and start crying, often very violently. She would not maintain eye contact, would not play, or explore her surroundings. When she was four, she was diagnosed with autism.
Masa attends speech therapy sessions twice a week and defectology treatments three times a week. However, the institutional support she receives often excludes her parents. “I knew that Masa had developmental disabilities when she was a year and a half old. No matter how many times we took her to speech therapy and other therapy sessions, and really anything that was available to us in Bor, progress was just slow,” explains Sanja Dragutinovic.
“When you’re a parent of a child with developmental disabilities, somehow no matter how hard you try, that desired result still eludes you. I found it really hard at the time. I already started losing confidence and maybe accepting the fact that Masa will stay at the level she has been at for years,” says Sanja.
When Masa turned six, her mom joined the Programme for improving parenting skills, organized by UNICEF, in cooperation with the Autism Serbia, an alliance of associations helping people with autism, and the Institute of Mental Health. It’s a new programme, developed by the World Health Organization and Autism Speaks. It is intended for families of children with developmental disabilities and difficulties, including autism spectrum disorders. Parents of children aged two to nine attend the programme. Regardless of whether the diagnosis has been made or not, it’s important to start it as soon as possible. Sometimes it takes longer to find the diagnosis, and science has proven that early support for the child and the family is crucial for good results.
“The Caregiver Skills Training came at the right time” says Masa’s mom, “It empowered me, restored my confidence, my faith that my child and I can do better, that we can achieve much more. As the sessions went on, Masa kept showing progress week after week, not only in speech and communication, but also in self-care and in those undesirable behaviours and in interactions with people. She was simply more present, more interested in us and her surroundings. It was easier for her to get used to changes, she accepted new people.”
During the COVID-19 pandemic, Sanja Dragutinovic attended the training online. The group sessions included four families facing similar challenges. Online sessions facilitated access for many of them, since they’re not from Belgrade. Parents learned new skills through classes and role-playing activities, helping them easily apply the skills they learnt when interacting with their children.
“There was a big difference compared to previous experiences, because the Caregiver Skills Training offers literally all the answers to any questions you may have. Everything that concerns us, from communicating with our child, attention exercises, games. I learned to let her know that I see her, hear her, understand her. The moment she realized I was there for her, she opened up to me and progress started,” explains Masa’s mom.
Natasa Sreckovic, a speech therapist from the Institute of Mental Health and one of the experts trained to lead the programme agrees. The programme is implemented in 12 sessions - nine sessions are held with a small group of parents and the remaining three are home visits. During the individual visits, which come before the online work, the expert working with the family determines the priorities for each family and each child.
“Home visits are an ideal opportunity to set the initial goals for each child, individually, according to the child’s abilities and in cooperation with parents. We reflect on their priorities as a family and for the child, and later in the sessions, we will move towards adjusting this approach to each child individually, so that the child can develop new skills,” explains Natasa Sreckovic.
Such work, Natasa adds, leads to rapid changes in children's behaviour. Some of them develop better communication, some start speaking or, if they do not develop speech, they improve other forms of communication. Parents are very satisfied, because children stay engaged in joint activities for longer periods of time. Most importantly, they acquire skills to participate in daily, joint, family activities.
“Parents have realized that they have the power to change things for the better for their child!” believes Natasa.
Masa’s mom, Sanja, explains that group sessions are organized to cover every segment of everyday life. Masa now participates in family routines with her mom and dad. She loves unpacking groceries after returning from the store. She picks up her toys, maintains personal hygiene.
“We learned to divide one routine into several smaller ones, in order for her to be more successful. For example, I was drawing Masa’s attention through imitation. I observed her interests and how she played and I’d join her and imitated her. The moment I started imitating her, she started imitating me, which made our everyday activities much easier. Masa is now also involved in doing the dishes, washing her hands, we make crepes together - she hands me the ingredients. We really couldn't do all that before,” Sanja is proud of Masa’s progress.
Natasa Sreckovic is also proud, particularly of the fact that Masa also mastered verbal communication,
“With her mom and dad's support, and with the skills she acquired thanks to this training, Masa has become verbal, and she can now communicate with her mother in this way as well, which is a great relief for the whole family and people she spends time with.”
Masa attends kindergarten with the support of a personal assistant. The training also helped mom Sanja realize that it’s important to have some time to herself.
“There are sessions that are actually focused on parents, helping us see that parents should have some respite. We received specific advice on how to organize ourselves. I used to be with Masa all the time because my husband works. But after the sessions, I gathered the courage and allowed other people to take care of Masa. Today, she goes out with her father and grandmother without any problems, and that used to be a huge challenge. And I have time for myself, to go for a walk, even to exercise.”
Natasa Sreckovic emphasizes how important it is for parents to take care of themselves. “It is important that parents are doing well, because they are the life-long support that their children need. During the COVID-19 pandemic, we saw how important it is to strengthen the families of children with disabilities because during lockdowns, when children were left without the usual support services, parents were the only ones the children could rely on.”
In group sessions, parents facing similar challenges rely on each other. Many of them stay in touch even after the workshops end, continuing to provide mutual support.
“The most wonderful feeling is to be among people who live lives similar to yours. There’s plenty of advice and, most importantly, support and understanding. We all need that, and the results are visible in our children’s progress,” Masa’s mom concludes.
The Programme for improving parenting skills in Serbia is implemented in 6 cities as part of early intervention services or in health care institutions working with children with disabilities and their families. The Ministry of Health, with UNICEF’s support, is rolling out these services to all districts in Serbia and hopes to make them part of the regular work of development counselling units. This will enable the programme to be available to all parents in Serbia, in person in each of the districts or online for those parents who do not have direct access. The development of the network of early intervention services in Serbia and the implementation of the Programme for improving parenting skills are being implemented with the financial support of the Austrian Development Agency.