We live in Bekasi, West Java, Indonesia.
Our little family feels complete with the presence of our two children. The first child is a boy and the second child is a girl who was born with Down syndrome.
Allah, the Lord of the Universe, gave us confidence with the presence of this little one who we named Rei Nichiza, now she is 13 years old.
We take care of our two children without distinction, with the hope that the older sibling accepts the younger sibling’s condition as it is. We only explained to the brother to be a little more patient if there happened to be a misscommunication between them, because sometimes what Rei wanted was interpreted differently by the older brother.
The presence of an older brother really helps Rei’s development, everyday Rei has friends to play and study. Incidentally, their ages are not much different, only 20 months apart.
Indeed, when educating children with Down syndrome, more patience is required, especially because of limited vocabulary and language pronounciation which sometimes makes us a little slow to know what she wants, on the other hand the child who sometimes feels emotional that we are the interlocutor, slow to understand what she wants.
Often this can be resolved with the aid of a demonstration, either in the form of body language or through other media as long as it is tangible.
In terms of attention, we try to teach Rei the meaning of affection through cat media, we teach her how to care for and pay attention to his eating and drinking needs, it helps Rei control her emotions a lot, she becomes more patient.
Another thing if we give her toys, when Rei’s emotions appear, she will act a little harsh, such as throwing or slamming her toy on the floor. With the media as a living creature’s playmate, it seems that she is much more patient, she often tries to communicate in her own way and style, but we still set limits on what can and cannot be done.
When we talk about love, a child with Down syndrome will love anything or whoever she likes, very sincerely, she is happy to share.
Rei is sometimes even more independent than her brother, she takes a shower or eats without us telling her to, she brushes her teeth when she wakes up and when she goes to sleep, she will wash her used food utensils herself, she tidy up her toys when she’s done playing. It’s just that for eating problems, we have to control her eating pattern and schedule, that’s to prevent her from being overweight, because children with Down syndrome tend to be overweight quickly. We often have to ask her to do sports, such as jogging around the house.
Before the covid pandemic, as her mother, I routinely took Rei for athletic training and swimming, but currently only gymnastics and running are all we can do.
At the beginning of Rei’s birth, I looked for various information about how to care for and raise a child with Down syndrome. After searching the internet, I finally found several communities that specifically treat children with Down syndrome.That’s where I met many friends who both have Down syndrome children, and I don’t feel alone anymore. We share joy and sorrow stories about the condition of each child. We are like brothers, sometimes we communicate via social media or meet in person. By joining many communities, I get a lot of useful information for Rei’s growth and development.
We, as a family with children with special needs, really hope that the government, both central and regional, pay more attention to their needs, such as road access and safety when they are outside the home, the need for employment for persons with disabilities who meet the criteria for earning a living, and their use when using public transport facilities.
Moreover, the government provides special training facilities for people with disabilities, so that they can be more independent and confident, because not all families with children with disabilities are included in the category of financially capable.
Even the smallest amount of assistance and attention from the government to them, it will definitely increase their self-confidence, it must be able to instill the principle and jargon in them, that “I’m sure I can”.
From a legal standpoint, crimes, both physical and verbal, against persons with disabilities, must be made as severe as possible, because there are still many children with disabilities who are victims of harassment and bullying, the perpetrators are only given light sentences, which is a bad lesson for our law. Persons with disabilities, especially mental categories, they will not remove any harsh measures against themselves, they will only be confused and dumbfounded, they will only think, what am I wrong? It is our duty to be able to pay attention to the safety and comfort of their lives.
Allah entrusts them to us because we are able to always help and accompany them. Love them, whoever they are, as we love our children.
If we are given more in the world, accommodate them, meet their needs, because maybe, one day, what we have done for them, hopefully it will be our way of helping in the end.
The best way to promote awareness of Down syndrome is for people with Down syndrome to share their own stories in their own words.
If you have a story that you would like to share with the world, please click here: SHARE YOUR STORY