My world who I can hug with both arms

With our Luka, each day is a new beginning and a new challenge

Marina Knežević Barišić
Mama daje pusu Luki
Miljenko Hegedić/UNICEF
03 December 2020

Mum Marina describes five-year-old Luka as a warm and cheerful child, caring and full of love. Luka, she says, likes to play with all toys, but his favourites are trains, a ball, and animals. Luka is a boy with disabilities, which is the consequence of a brain haemorrhage during birth, and most work necessarily goes into developing his speech and language understanding.

“Luka is my light and my everything, my world that I can hug with both arms. Each day is for us a new beginning and a new challenge. Every new word that he learns and articulates brings huge and invaluable joy, and represents a reward for all the effort invested, and encouragement for an even greater and stronger fight and for more perseverance. My husband, Ivan, who is the best and most caring dad, has been a great support in all this. The three of us practise and learn together, we play and enjoy our free time, and we laugh a lot”, says mum Marina

When Luka was only three months old, they started visiting a physiotherapist and occupational therapist, and when he was three, Luka also began using additional early intervention services. Just when they had to start sensory therapy, the institution offering this service closed down. Knowing how important this type of therapy was, mum Marina did her best to provide sensory therapy at home, as far as she possibly could.

Luka plays with his Mum
Miljenko Hegedić/UNICEF
Luka with his parents
Obiteljski album
Luka with Mum and Dad

“I received some ideas from other parents, and some I found on the internet. So, we constructed a sensory space at home. To exercise, he walks on pebbles, and to play, we use plasticine, dough, rice and other material that helps Luka’s development.”

Sensory therapy is used to work with children with autistic spectrum disorder, sensory, intellectual and multiple disabilities, and with children who have emotion regulation difficulties and attention deficit disorder. The therapy includes exposure to various stimuli, such as light, sounds, scents and surfaces made of different materials, which helps children develop sensory-motor skills and improve behaviour, communication and interactions with others, and this is key to the overall development of a child and their active participation in everyday life.

In kindergarten, Luka receives speech and educational rehabilitation therapy, and also attends additional speech therapy. Luka likes going to kindergarten, the friends in his group like him very much, and they have accepted him nicely, which makes his parents, Marina and Ivan, particularly happy. His kindergarten, “Potočnica” (“Forget-me-not”) also actively participates in UNICEF’s “Communication for Every Child” programme, in which Luka is included, and which proved to be particularly useful at the time when children could not attend kindergarten due to the coronavirus pandemic.

Luka koristi tablet s posebnom aplikacijom koja pomaže razvoju komunikacije.
Obiteljski album
Luka’s kindergarten is involved in UNICEF’s “Communication for Every Child” programme, which includes the use of aided communication
Luka se igra s loptom
Miljenko Hegedić/UNICEF

“I communicated with the mother by phone and by email, and this is how we conducted counselling and indirect therapy. The mother followed all the given advice and used aided communication in everyday life situations at home, which helped Luka become much more confident in communicating and expressing his opinions and feelings, which had a particular effect on his stay in the kindergarten group. Although Luka is a cheerful and curious boy by nature, now he engages more confidently and more frequently in interactions and play with other children. It is important to use the techniques and methods learned in isolated cabinet conditions in everyday life activities, in order to generalise the knowledge and skills and extend them to all aspects of the child’s life. In this way, children become more confident and more prepared to express their ideas, wishes and feelings”, explained speech therapist Irena Mlinarić Trabalko.

Therapists Irena and Danijela, who work with Luka in kindergarten, provide great support to the entire family.

“Speech therapist Irena, with whom we started this beautiful story concerning aided communication, and educational rehabilitation therapist Danijela are the wind in our sails. Luka attends practice with them both for half an hour once a week. He works with the speech therapist on stimulating speech and language development, improving concentration and attention, telling stories. To do all this, he uses a tablet and a new app – Cboard – which helps him communicate. With the rehabilitation therapist, he works on gross and fine motor and graphomotor skills, as well as on visual perception and cognition. Both therapists also regularly visit the kindergarten group to see Luka and give advice to the teachers on how to best adapt the activities in the group so that Luka can be an equal participant. They are always available to us to answer questions, give advice and assistance, or just to talk. Besides them, for whom I always say that they have been placed on our long ‘journey’ for a reason, there is also speech therapist Matilda whom we visit twice a week, and we gladly do the tasks she gives us through play”, Marina added.

“It hasn’t always been easy, nor will it be easy, but we never give up, we just come out of it stronger. One should never give up, but always persevere and fight”, Marina, Luka’s mum, concluded.