#25: Thriving on the different lines: living and loving a child with special needs

ADITIA FITRI, MEDICAL DOCTOR, RESEARCHER IN GENETIC DISEASE FIELD,
FULL-TIME MOTHER & CAREGIVER

Aditia Fitri has been working as a medical doctor in Indonesia, and as a researcher
in the genetic disease field. She came to the Netherlands to pursue her master’s on genetic conditions to return to her home country. As life can take us in a different direction, she got pregnant and the way she sees it,  serendipity gave her the chance to embrace life as a full-time mother and caregiver of her son, who has a combination of autism and a rare genetic skin disorder, called ichthyosis, a congenital disease in which the skin is coarse, dry, and scaly.

Challenges & Opportunities
Aditia tells about living as a foreign family in the Netherlands, and how she faces the challenges (without a family support system, the language barrier, learnings and the search in a whole different system of care and social work), but also the opportunities she sees in the rich infrastructure of resources and knowledge.

Despite the social system it can’t be denied, that the impact of rare diseases and special needs is huge, and often manifest to an invisible disability. Besides, she experiences the never ending fight for help that sometimes takes a toll on her, and juggles between being a mom and being the person that she is at the core. That is why she emphasizes the need for self-care, including allowing all emotions like feelings of anger, sadness, and grief, showing vulnerability, and asking for help.

Even though life can be a marathon, Aditia’s main practice is gratitude and taking one step at a time. She also feels grateful that she and her family are living in the Netherlands where she has met many kind people to help and support her.

www.thrivingonthedifferentlines.com
As a way of giving back, she is launching “Thriving On The Different Lines”, a personal website providing practical information for parents and caregivers with children with special needs, to find the best support and opportunities for growing optimally and thriving regardless of condition or situation.

WORLD SOCIAL WORK DAY
MARCH 16, 2021

World Social Work Day is on the 16th March 2021. It is the key day in the year that social workers worldwide stand together to advance our common message globally. This year, the 2021 World Social Day highlights Ubuntu: I am Because We Are. This is the first theme of the 2020 to 2030 Global Agenda for Social Work and Social Development.

Ubuntu: I am Because We are – Strengthening Social Solidarity and Global Connectedness.
Ubuntu: ‘I am because we are’ is a concept and philosophy that resonates with the social work perspective of the interconnectedness of all peoples and their environments. It speaks to the need for global solidarity and also highlights indigenous knowledge and wisdom.

Silvana Martinez, IFSW President commented:

The theme comes from extensive consultation within IFSW and beyond. At a time when global politics has retreated into nationalism, Ubuntu is a powerful message on the need for solidarity at all levels: within communities, societies and globally. It is a message that all people are interconnected and that our future is dependent on recognizing all peoples involvement in co-building a sustainable, fair and socially just future. IFSW invites all social workers, partner organizations and people who care about the future to co-brand the poster. Together we can change world for this and future generations.

“I am because we are”, also includes:

  • facilitating universal rights, opportunities, freedom, and
  • sustainable well-being for all people nationally, regionally and globally.

For more information go to the website of  International Federation Of Social Work.

N.B. Text is copied from the website of IFSW.

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1 COMMENT

  1. Dear Aditia,
    Thank you so much for sharing your story! I feel deeply touched by your kind words. May many people benefit from your amazing website and generosity, and let’s continue spreading the love!

    Warmly,
    Claudia

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