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.

His progress maybe very slow. Accomplishments he may not show.
And he’ll require extra care. From all the folks he meets down there.

He may not run or laugh or play. His thoughts may seem so far away.
In many ways he won’t adapt. And he’ll be known as handicapped.

So let’s be careful where’s he’s sent. We want his life to be content.
Please, Lord, find the parents who will do a special job for you!

They will not realize right away. The leading role they’re asked to play
But with this child sent from above. Come stronger faith and richer love!

And soon they’ll know the privilege given. In caring for their gift from heaven.
Their precious charge so meek and mild. Is heaven’s very special child!!!

Sept. 1991.

MICHAEL, my youngest son was diagnosed with Down syndrome and suddenly everything went pitch black. I was suffocated with fear and panic. There was not a single word that could have described my emotion at the time. It was very raw.

I was angry with God (a reaction with I thought was very normal). It was easy to blame on the Almighty God for something that has gone wrong.

I was in denial and won’t be easily persuaded otherwise. That poetry made me very angry, but at the same time, couldn’t help wondering if it will become a reality one day or when will that “one day” be.

I have received a gift. But, though a beautiful gift to look at and to hold, this gift is not as it seems. I didn’t understand at all, though I look after him as a mother should, I wonder if I was “able” in the truest sense, and whether I want to. I had such a mix emotion; I felt sad, hopeless, confused, afraid and insecure mostly at family gatherings and out in the public glare.  Fortunately feeling shameful was not part of the package, the feeling is more of anger especially when some stranger dared to express their negative attitude towards me or my son. My life has become isolated, I’m happier at home feeling secured.

But miraculously I survived each day and it was smooth sailing. No major upheaval, no major changes, nothing out of the ordinary of having a baby.

My baby was cute and had the sweetest disposition; he was so full of life and “love” which was rubbing on my emotion which in turn and slowly changes me in a positive way.

They say everyone has their own cross to bear and that cross will not be any heavier than what we can carry. God has plans for me but I was blind to see it and could not accept it…..until one day I became seriously ill and accepted my fate and made a promise to dedicate my time, energy and life to the challenge I was given.

So as they say… I rise to the challenge!

I started my challenge with a dream for my son, with that dream I acquired the ambition and strength to overcome most of the insecurities of having a handicap child.

It took me ages to understand and have the compassion for all the things I took for granted for even the most trivial things like: walking, drinking, or holding an object.

I learned a lot not to expect back, which was very difficult. The waiting game, as I called it, for something to be accomplished was most painful as I felt so helpless and at times hopeless. But I was still fortunate I had good support system and that Michael did improve with each passing month and year.

I was also fortunate that the whole family rally around Michael and are very much into sports which helped him improved his gross motor skills and intelligence.

Michael excelled in sports and art from a very early age and which he still enjoys today.

His achievements have seen him became a role model for his friends’ parents wishing their children too could have achieved so much and at the same time giving hope and erasing the negative attitude of the overall perception of the fate of children with Down syndrome.

He has won numerous medals in sports such as athletics, golf,  and swimming at prestigious national tournaments while his best performance was in the Special Olympics World Summer Games in Dublin, Ireland in 2003 by receiving in athletics the silver medal in the 50 m sprint and bronze medal for soft ball throw.

Through Michael, I and a few concerned parents started a support group called ISDI - The Indonesian Down Syndrome Society, to assist and provide all that is necessary for parents to help improve their Down syndrome children.

ISDI’s activities among others are holding short seminars covering extensive variety of topics necessary for the lives of Down syndrome and for parents to “open up” more and to improve their life.Of course running ISDI was not without many obstacles. We have to shape our common vision to strive for our goals. Sharing among members, have shown a great deal of importance. Contribution from each and every one of them enriches our organization. Time is so precious and time also is the key to achieve wisdom and ability. We feel that we must give the “life after education” concept to all parents. We realized that most parents are giving too much focus on formal education. For them, formal education seems to be the most important input for people with mental handicap ……. It should not be forgotten that life (handicapped or not) consist of many things, not only formal education.

They bring delight instead of sadness, they bring richness into our lives and most importantly they bring warmth into our hearts and thoughts.We slowly see beautiful changes on these persons and constantly were given wonderful surprises. Now these children become a source of inspiration for us to be motivated and creative.

The mission of ISDI is to show off our Down syndrome children for all to see and enjoy, while giving them the opportunity to learn the reality of  life.

Here are some of our children’s achievements:

• Speeches: they learn to recite poetry and speeches in prayers or leading activities.
• Communication services: They participate in caring for the old, needy and disable. They have participated in campaigning for the cleanliness of our beaches collaborating with General Electric Co.Home Front: Cooking and baking – they have managed to cook simple meals and baking cookies for sale.
• Sports: They have won numerous national and international medals in athletics and swimming.Painting and drawing – they have won national and international recognitions.
• The Arts: Dances and Music – they have reached the phase of public performance level/standard.

They maybe special people, but we shouldn’t make them any different from the norm.

We also give life skills training for the trainable for daily chores at home and work attitude, all in preparation for the independent life and the real world.

This new phase gives us confidence and faith that with early intervention and opportunities, all special people can excel in their lives. They will not be living in a shell, there will be no boundaries for them and they will feel freedom. They will feel the normalcy of being a human being.

Some of our dreams is still a dream and our road is long and winding, but we believe that That One Special Day will come!

One of our most treasured wish is to have a PLACE or CENTER where anybody with anything related to Down syndrome can visit and find information, do a lot of activities such as workshop, vocational training or just plain socializing.

But to realize the Center is still a distant dream, that is why we are in urgent need of support from people of all walks of life, be that the government or private individuals with the golden heart to see our way and give generously.

We could not have done all this and achieved so much without all the support, best wishes, faith and prayers from everyone who want to see our children have a bright future.

Our gratitude and appreciation to all those who have given so much to ISDI, from the first day of it existence until today.

Aryanti R. Yacub - Mother & Chairwoman of ISDI
Name: Michael Rosihan Yacub
Date of Birth: Jakarta, February 25, 1990
Siblings:3