Moving forward together – Emanuel and me
How quality support can change the lives of children with disabilities
“Emanuel has a unique personality. He is a wonderful, playful and diligent boy. He is very open, especially towards other children, which resulted in him being well accepted among his kindergarten peers. This makes me really happy”, says Ana, his mom, adding that her son knows very well what he wants and what he does not want. He can be very loud when he is not pleased with something. “Like a tiny volcano erupting”, says Ana. Emanuel (6) is a boy with an autism spectrum disorder.
Unlike many other families with children with disabilities, Ana says they have always had positive experiences when it comes to receiving the support they needed.
“I have nothing but praise for everyone, for the paediatrician, for occupational therapists, rehabilitation educators, kindergarten teachers. We started the process when he was a five-month-old baby. First, we worked with a physiotherapist, then a physiatrist, and when he was two years old, we began the early childhood intervention programme which we were building on, as necessary. It’s crucial to keep informed, it’s the key. When it comes to children with disabilities, more information means more opportunities. I got information primarily through talking with other parents, but also in the most unexpected places.
Emanuel is my greatest teacher. Of course, it hasn’t always been easy. There are many things to process and handle, such as the challenges we encountered, specific circumstances, being a tenant, and the fact that there are just the two of us. And the bureaucracy – you need to be persistent and consistent, it’s important. I wish it was fair and just, but it’s a lottery, it all depends on who you come upon behind the counter. I guess that’s life. You always need to look for another way and try, like I did with an appeal regarding kindergarten enrolment. You mustn’t lose your spirit, and you just have to persevere. That’s why I’m eternally grateful to everyone who has been with us and supported us. Meetings with Emanuel’s therapists always gave me hope. We’ve been going to therapy at the Juraj Bonači Education Centre for a while now, and on Thursdays both of us spend time with Vedrana, the educator at our kindergarten. She got us into the whole assisted communication thing”, says Ana.
The kindergarten Emanuel goes to, “Cvit Mediterana” in Split, is a part of UNICEF’s “Communication for Every Child” programme.
For all 24 institutions participating in the programme, UNICEF provided equipment and training in using assisted communication to help children with complex communication needs.
Assisted communication turned out to be ideal for Emanuel.
“It makes our life simpler, and it enables him to communicate. Thanks to this programme, he is a happy child. It is wonderful to see him smile. Emanuel is a non-verbal child, and this makes our daily life easier, we understand each other better so there’s less frustration and anger, and he’s a calmer, happier child. We introduced gestures, he even created some of his own. At home, we use PECS images that we taped to the door. They are helpful. Speech is not the only means of communication, but one thing leads to another. When you came to the therapy session, when we pointed and asked whose turn it was, it was the first time that Emanuel pointed to himself and said: “Me.” He had a headache recently and he showed me where it hurts and confirmed when I asked him. This is huge progress, and the greatest thing is that Emanuel likes this kind of therapy. It suits him because he’s a visual type. This kind of therapy should be provided for every child that needs it”, believes Ana.
Vedrana Vučković, a kindergarten educator working with Emanuel, told us that in the autumn of 2019 Emanuel refused to participate in most activities.
“Thanks to the new skills I gained through training which was part of UNICEF’s project, and as a result of supervision on the implementation of play therapy elements, I decided to take a different route, and, in agreement with the mother, I changed the approach. From October onwards, the goal of therapy was to encourage communication as much as possible, particularly between Emanuel’s mother and the child, while my role is to provide support, create games and ensure the means of communication. During sessions, Emanuel’s mother and I talk about different situations using assisted communication – a low-tech message board with a core dictionary, play with Emanuel while taking into account his interests and letting him choose the activities, and trying to have fun together”, explains Vedrana.
According to Vedrana, the results of the new approach can be seen in Emanuel’s progress: in September he was using only two PECS (Picture Exchange Communication System) images, and in January he was using 49 images and was able to use nouns, verbs, colours functioning as adverbials, and the words “yes” and “no”. The speech also started in January. By using the communication board, he can now make two-word sentences, for example: “I turn”, “Mom help”, etc.
His mom Ana participates in UNICEF’s workshops for parents of children with disabilities under the title “Growing Up Together PLUS”: “We spend time together, we learn, but we also relax. Unfortunately, I can’t always take part, because it depends on whether my mom, who’s a huge help to us, can come and keep an eye on Emanuel, but every workshop I’ve been to so far has had a very positive effect on me, both physically and mentally”.
This small dream team is very active. Emanuel loves cars, playing in the park, playing ball and making tents with his mom. They are both early risers, so besides going to daily therapy sessions, the swimming pool at the “Mali Val” association and kindergarten, they spend plenty of time out in the fresh air, taking long walks by the sea, exploring parks and playing with a friend from the neighbourhood that Emanuel has known since his earliest days. Since Ana is an art lover, she is especially glad when Emanuel shows interest in drawing, modelling clay or similar activities they both enjoy. Ana makes sure that everything they do contributes to his progress and development, and this is what she told us when we asked her what she loves most about her boy:
“When we manage to soak up every ray of sunshine outdoors. His happy face when he’s holding a new toy car and when I’m reading letters to him. When there are no tantrums and we share peace. When he stroked our sick puppy for the first time. When he sees me eating and doesn’t run away from me but stays and smells the food. I love it when we find a way for me to understand what he’s trying to tell me when he can’t express it. When he hugs me and gives me kisses. Our morning cuddles. The fact that he likes long walks and using public transport. When he gets lost in his thoughts while watching mandarin leaves in the garden. When Pat & Mat cartoon starts up on TV, and he says: “A” and gestures that after the cartoon, it’s time to take a bath and go to bed. When he flips through picture books on the beach. I love it that he doesn’t get upset anymore over advertisements, logotypes and letters in the name of certain shops in the town so we can walk by them undisturbed. I love that animals cheer him up and that he’s now in this boyish phase when he laughs at some mischief he sees. I love new friends and acquaintances we’ve made since his birth and I love that each day he shows me how much patience I’ve got, so when I fall into bed exhausted, I can fall asleep peacefully. I love it that we’re making progress together, the two of us. I love being his mom”.