My Story

Nisrina Zahra Putri

She was born on April 2010, our love has created another beautiful baby girl. Her first cry made me the happiest mom in the world….my daughter has finally arrived. …
I held her with all my love….I kissed her with all my being….no words could describe the happiness I felt.
I named her Orlin Zahrina Putri which means a golden flower. I immediately envisage all the most wonderful future for my sweet angelic Orlin which will make us all very proud of her.
The days past and months went by so quickly my sweet Orlin is 3 months old now and able to turn and lie face downward.
My heart fills with so much pride to see the beautiful bonding of my two girls…. Yes…we have two beautiful daughters, Nisrina Zahra Putri, our first born or Iput as we call her, never fails to greet her baby sister with her sweet smile waking her up and asking her to have her bath and take a walk with her.

The bond is so strong that when big sister is not feeling well, little sister is also not feeling well. At first I thought it was so sweet, but then doubts set in….. what is wrong with my Orlin? I began to notice that Orlin is becoming weak?.. Why did her legs turn dark red when I carry her? So many questions but no answers.
When Orlin was 7 months, she was hospitalized from a long bouts of cough and fever
It was while in the hospital that her doctor mentioned the word mongoloid, a word so strange that I asked what kind of illness was that?. Apparently my husband knew but didn’t say a word. I was busy holding my sweet Orlin trying to keep her calm. The next day my husband told me the worst news a mother could ever imagine…that my sweet Orlin was a special child, a Mongol child. My heart stopped!!!.” My baby was an idiot…. Why… dear God did you give me this child? But somehow I could functioned and my main concern was for my Orlin to get well…I could not care less whether she was normal or Mongoloid.
Orlin was hospitalized for 5 days at home I just looked at her, thinking how could I give birth to such a child? What have I done? Am I being punished? Or is God testing my faith and patience in my journey of life?
I asked her doctor how could my baby be like this?..I was not happy with his answers. He advised me that Orlin took the chromosome test to be sure. But I didn’t heed his advice, I leave it to my God to take care of my family.
I felt empty, lost all interests, lost all desire to know and to be as if there is no life left in me but what of my two daughters? who is going to take care of them? could my husband do it? Will my extended family accept my special daughter?.During this time, I kept things to myself, I could not open my heart to anyone even to my family. I felt all alone and the burden was heavy. It was strange that I turned to technology for comfort when I couldn’t rely on anybody to share my thoughts and open up my heart..I tried to find information on Down syndrome, and found ISDI….and it was in ISDI that I found Mrs. Aryanti and my peace. She was very patient with me and understood my needs and what I went through, she answered all my letters with so much compassion that I felt elated and found my zest for living again…which was so important for Orlin. My baby must be loved and must feel my love.Thank you ISDI, thank you mom Aryanti…..hugs with love from Zaza.
When my baby was 8 months old, we had a small ceremony of changing her nick name from Orlin to Zaza, our Javanese relatives thought that the name Orlin carried such a heavy burden. Zaza sounds nicer and she florished in health. Zaza had weekly message therapy to improve her motor skills and overall health, this I did for her with love and pride.
As time passed Zaza grew but not as well as other children. I grew worried, my baby still could not sit..though she responded to some stimulation. I’m at my wits end, what more was needed for my Zaza ...Dear God Almighty, please give me the strength and perseverance in this journey of my life. All I could do was pray, pray and pray for HIS guidance and HIS love. But will pray makes my Zaza be normal without me doing something to help her?. Finally I attended a seminar on child and parenting and found knowledge important enough for my Zaza. They were occupational and speech therapies.
At age one, Zaza began her occupational therapy but she always cried at this session. Nothing would make her  happy, if anything it made her more upset with everyone trying to calm her down. My Zaza hated the hospital. Our solution was that I learned what to do and how to do it and applied it to Zaza at home and in a fun and relax manner.  She responded well and improved.  She could sit and slowly crawling.  I was elated and proud of my achievements and in the process I made Zaza strong and more active.
Serious health issues never stopped for Zaza. This time it was pneumonia, treatment was for 6 months long. So many medication she must take. It made me worried that her kidneys maybe affected. When she passed motion she always cried due to her sensitive indigestion. All foods must be blundered for Zaza to enable her to swallow and ease her passing motion. Dear God…please give me the strength and endurance to care for my beautiful Zaza.
On May 2012 God enlightened me and gave me an answer I met a herbalist who could help Zaza with alternative medication for her health and problems. Zaza was given special brew for her spleen, bones and other vital organs. Praised God Zaza improved and she could consumed soft food, passing motion improved, Zaza was learning how to walk. She could even master a few words that made me so proud….yaya (for daddy) and meme (for drink milk). The key to being a special parent to a special child is: Patience, Faith, Sincere and Pray.
November 2012 Zaza is 2 years and 7 months old. Her overall health and growth has slowly improved, now she is learning to feed herself. She manages to make baby steps towards something that attracts her, in her baby ways, she can relate to me what she wanted.
That is my special story about my beautiful special lady called Zaza. With special hugs and love, I hope my story will be beneficial to a special mother. Beauty will come in it’s own time.

Michelle Laurentia

Kisah ini saya mulai dari semenjak hamil Michelle anak kedua kami, di usia saya yang ke 36 tahun. Menurut buku yang saya baca, kebanyakan anak Down Syndrome lahir dari ibu yang berusia 35 tahun keatas. Walaupun itu bukan patokan baku, sebab ada juga beberapa ibu muda yang melahirkan anak Down Syndrome, bahkan anak pertamanya..!  Sewaktu hamil saya tidak merasakan ada kelainan apa-apa, hanya ada sedikit flek saat hamil 2-3 bulan dan saya di beri vitamin serta disuruh istirahat selama dua minggu.

Edwin Alim

Kurang lebih 14 tahun yang lalu, tepatnya tanggal 16 september 1989, kami sekeluarga sangat bahagia dengan kelahiran seorang putera, kami beri nama Edwin, dengan demikian lengkaplah keluarga kami dengan seorang puteri (anak pertama) dan seorang putera. Hari-hari silih berganti dan pertumbuhan anak juga berkembang seperti anak-anak pada umumnya. Tubuhnya lemas, tidak dapat berbicara, merangkak apalagi berjalan. Makan dan minumpun harus di suap perlahan-lahan dengan penuh kesabaran.


Saat kelahiran Novina 31 Oktober 1995, tidak saya ketahui secara nyata apa yang di sebut Down Syndrome, Tetapi perasaan sebagai seorang Ibu menyandang perasaan entah firasat atau apalah tidak saya sadari, tetapi tekanan darah saya tetap tinggi diantara Ibu-ibu yang melahirkan lainnya. Hanya saya saja bolak-balik ke suster cek darah, bahkan bilang “Nyonya jangan sedih, bayi nya sudah bisa minum susu kok”.

Samuel Santoso

Sebagai pasangan yang baru menikah, tentulah amat bahagia ketika mengetahui bahwa didalam rahim telah ada janin yang kelak akan menjadi seorang bayi mungil. Perasaan ini mengiringi keinginan untuk mengkonsumsi segala sesuatu yang dapat bermanfaat dan bergizi untuk pertumbuhan janin tersebut. Dan menghindari segala sesuatu yang menurut orang berbahaya bagi pertumbuhan janin apalagi obat-obatan. Hampir tidak ada kecuali vitamin yang direkomendasikan oleh dokter kandungan.

Intan Sartika Tasmaan

IntanIntan was born in 1981. She was the youngest among the three children in the family. She was 8 years younger than her brother. Quite a gap. Family planning seems to be not working for her. God sent her as a gift to the family. It was a shock to the family in the beginning, knowing that this cute little baby was convicted as a Down Syndrome child. Training “family tree” was meaningless.

Michael Rosihan Yacub

Let me begin this essay with a poem. This poem came to me in the most peculiar way, one day in September 1991.

A meeting was held quite far from earth. It’s time again for another birth.
Said the angel to the Lord above. This special child needs much love.

About Us

ISDI (Ikatan Sindroma Down Indonesia or Indonesian Down syndrome Society) was formally established on 21 st April 1999. A non-profit support group of parents, medical professions, special-needs experts, teachers, and all of those who have deep concern.

We, as parents are very concerned of the future of children with Down syndrome in Indonesia especially when little is done to support them by the government or other non-profit organizations.

We so look forward towards a better future by sharing our experiences and supporting each other in our monthly gatherings. This way we gain knowledge and our children benefit from our experiences.

Events Schedule