By Marina Manasijević
A need to empower mothers
In January 2021 I received a message from Ana from Evo ruka Association in Zemun polje:
‘We are conducting mini online focus groups at the weekend about the position of children with developmental issues and their parents. Please send your details if you are interested.”
At that time I was distressed due to an epileptic seizure of my autistic ten-year old daughter a couple of days earlier. Only a day before we had been discharged from hospital without a diagnosis and medication that could prevent another seizure. Hence, I was still in a state of shock. God himself pushed me to register.
I was also a bit scared of missing the opportunity, as it felt like giving up on my child. For years, I had been considering solutions for her and this call seemed like a divine sign!
‘Paskal’ workshops for strong mothers
Workshops started in March and took place over Zoom every fortnight. The total of 15 workshops. ‘Paskal’ programme was created by a psychologist and independent consultant, Tamara Tomašević, who guided us through the process. She asked various questions aimed at raising our awareness. Sometimes we were crying. Overall, a magic experience.
I registered because I needed a shoulder to cry on, I needed to share my pain with someone, to get it off my chest. I gained much more than that.
I gained an example, hope, inspiration, driving force, new perspective, a challenge to change and a way to do it, the reason to think and interpret why someone irritates me and why something upsets me. I got an invitation to reconsider why something is important to me.
I gained strength to show myself and accept that I am as invisible as I would think that of myself.
Eight months went by, the workshops ended. We are still summarizing our impressions.
In order to become empowered you need to be daring.
What have we done so far?
I cast myself into writing, after a lifetime of delays. I am learning how to create a website with the help of many mother gurus, my dear Chemother, who I found encouraged by ‘Paskal’ workshops.
Armed with tools we started our fight together. We are building a story and developing it day in day out. I am hopeful, as I simply know we’ll achieve everything we want to.
I get chills when I think I could have ignored the call.
However, when I think a bit more, it couldn’t have been possible for me to decline the call of our farsighted fisherman’s daughter, the President of our Evo ruka Association, Ana. This network was firstly woven in her mind and skilfully cast into the sea of mothers with children with developmental disabilities and rare diseases.
She asked the right question: who is helping the parents of children with developmental disabilities? Only we, the parents, know the answer. This is why we’ve built this network. And this is why we’ll contribute to empowering other mothers.