When No Experience is Needed

Membesarkan anak dengan kebutuhan khusus adalah perjuangan setiap hari yang harus dihadapi orang tua. Begitu banyak kesulitan dan tantangan yang ditemukan. Berikut ini adalah sebuah artikel yang ditulis oleh seorang hamba Tuhan yang juga adalah seorang penulis, yang memiliki seorang anak dengan kebutuhan khusus ganda ( buta, autisme, keterbatasan kognitif, dan kelainan fisik dalam bentuk kejang-kejang). 

WHEN NO EXPERIENCE IS NEEDED

“He had a seizure.” For two years I hadn’t heard that statement about my oldest son, and I didn’t want to hear it now on New Year’s Eve. The memories of three years of uncontrolled seizures rushed back: the heartache of watching him hurt; these additional complications to our lives on top of his other disabilities; the loss of control.

People hear and see things like that and begin to imagine what life must be like to raise a child with a disability: “His or her quality of life must be low, so low that nobody would want to live that life if given a choice” or “The marriage and rest of the family must be significantly and negatively impacted and that isn’t fair to the other family members” or “The family is always intruded upon and dependent on other people — educators, therapists, doctors, social workers, and insurance companies.”

And when these imagined fears enter reality for many people — when it is their unborn child who has the disability — those children die.

Even some “pro-life” states with laws protecting unborn babies include exceptions for children with severe fetal anomalies. New “cost effective” screening methods and technologies mean more children with disabilities like Down syndrome are being identified earlier in the womb — when abortion is considered “safer.”

That Better Knowledge

There are a number of ways the disability community and parent advocacy groups are combatting this murderous prejudice. But in all likelihood, you are not currently parenting a child with a disability or a member of one of those groups.

And you can still do something. People will say you don’t understand and have no right to “judge” what somebody else does. But God may have given you the privilege of saving a little life regardless of your experience or first-hand knowledge of disability.

You see, knowledge of disability is helpful, but it cannot change hearts to be tender toward a vulnerable baby. Experience with disability also doesn’t always lead to appreciation for the value of that little one’s life. Dr. Emily France and her colleagues considered the issue of parental experience and concluded, “The nature of a parent’s experiential knowledge did not predict whether they continued with or terminated their pregnancy (of a child with a fetal abnormality)” (Health Expectations, 2011, Volume 15, Issue 2, 139).

Christian, what you have is better than knowledge or experience: You have Jesus Christ. When you hear the hard news that disability has entered a family, don’t begin looking around for somebody else to enter their pain. Let your first response be to God, “Here am I, send me!”

The Confidence You Need

Now you might be thinking, “But I don’t know what to say.” Maybe that’s what they need. Remember one thing Job’s friends got right. “They sat with him on the ground seven days and seven nights, and no one spoke a word to him, for they saw that his suffering was very great” (Job 2:13).

More importantly, Jesus has promised you:

But the Helper, the Holy Spirit, whom the Father will send in my name, he will teach you all things and bring to your remembrance all that I have said to you. Peace I leave with you; my peace I give to you. Not as the world gives do I give to you. Let not your hearts be troubled, neither let them be afraid. (John 14:26–27)

Raising a child with severe disabilities is no picnic in this culture that prizes ease, beauty, and wealth above character, persistence, and conviction. But our family joins with other Christian families experiencing disability to say that God is faithful even in the midst of the greatest pain and suffering. My son, and every child who comes, regardless of his or her physical or cognitive abilities, is valuable because God made them.

So when the news comes to a friend, a family member, maybe even your own child, remember the God who made you alive when you were dead in your sins. Remember him who calls us to do hard things out of love and who promises to be with us every step of the way. Ask him to help you. Then pursue the mother and the father in love and hope, for the sake of the baby, for their faith, for God’s glory, and for your good.

(John Knight)

Newsletter Yayasan 001/II/2015

Puji Tuhan, berikut ini adalah newsletter pertama dari Yayasan Edukasi dan Sosial 21, yayasan di mana caRE & reACH Ministry bernaung.

Bagi yang ingin dikirimkan copy dari newsletter ini, mohon mengirimkan alamat email kepada kami di careandreach@hotmail.com atau di yayasanedukasidansosial21@gmail.com.

Tuhan memberkati!

Like Stars on Earth

Ya, ya, ini adalah film India, dengan setting dan gaya khas film Bollywood pada umumnya, dengan banyaknya tarian dan nyanyian :) 

No, no, ini bukan film India biasa-biasa! Ini adalah sebuah film yang benar menguak kehidupan nyata dan pergumulan sehari-hari seorang anak berkebutuhan khusus, Ishaan, yang mengalami kesulitan di dalam membaca, berhitung, gerakan motorik, dan yang lainnya. Sebutlah ia adalah seorang anak dengan dyslexia. 

Pergumulannya sudah dimulai dari awal ia masuk sekolah. Bagaimana orang tuanya begitu menderita karena 'kenakalan-kenakalan' yang diperbuatnya, bagaimana guru-gurunya di sekolah mencap Ishaan sebagai anak bandel yang selalu melawan, bagaimana teman-temannya menolak bermain dengannya.

Film ini sangat jujur, menceritakan secara blak-blakan bagaimana Ishaan ditolak dari sekolah, ditolak di dalam pertemanan, sampai pada akhirnya ia ditolak oleh keluarga dan dikirim ke sekolah yang jauh dan tinggal di dalam asrama.

Sampai pada titik terendahnya, di mana Ishaan sudah berjalan seperti manusia tanpa jiwa, yang hanya berjalan, tanpa memiliki keinginan untuk melakukan apapun juga, datanglah seorang guru seni yang akhirnya (!!!) mengerti keadaannya. Guru ini pernah mengalami apa yang dialaminya, dan pernah mengabdikan hidupnya untuk mengajar anak-anak yang berkebutuhan khusus. Melalui bimbingan intensif, kasih dan tuntunan guru ini, akhirnya semuanya berakhir dengan baik. Ishaan berhasil di dalam pendidikannya, seluruh keluarganya mengerti keadaannya, dan guru-guru dan teman-temannya melihat kelebihan Ishaan dan menerimanya.

Everything ends well. And they live happily ever after... :D

Diiringi dengan tawa dan tangisan, akhirnya semuanya berakhir dengan baik.

Tapi ini bukanlah yang terjadi sehari-hari di dalam kehidupan anak-anak berkebutuhan khusus pada umumnya, bukan? Banyak anak-anak yang sampai dewasa pun tidak pernah menerima bimbingan dan penerimaan dari keluarga, teman dan semua orang di sekitarnya. Banyak orang tua, pengajar maupun pengasuh yang selalu menderita di dalam mendidik dan berkomunikasi dengan anak-anak berkebutuhan khusus. Banyak masyarakat yang selalu mencibir dan menjauhi mereka. Dan akhir dari cerita hidup mereka tidak selalu berakhir dengan "and they live happily ever after". Kebanyakan dari mereka akan berlanjut dengan "and they don't know how to continue living anymore".

Oleh sebab itu, saya mengajak semua kalangan, semua kalangan, untuk menyisihkan waktu untuk menonton film ini. It is educating, it is entertaining and it is heart-opening.

Every child is special. Indeed they are....

Hadirilah! Seminar Sehari YIPABK Medan!

YIPABK(Yayasan Indonesia Peduli Anak Berkebutuhan Khusus) Medan kembali akan mengadakan kegiatan penting untuk kampanye dan mendidik orang tua, pengajar ataupun pengasuh. 

Seminar Sehari

"KEMAMPUAN KOMUNIKASI PADA 

ANAK-ANAK DENGAN ASD (AUTISM SPECTRUM DISORDER)"

Pembicara : Sheila S. Hadikoesoemo, M.S., CCC-SLP

Sabtu, 18 April 2015 - Pk. 09.00-15.00 WIB

Hotel Tiara, Balai Citra, Medan

Seringkali sebagai orang tua, pengajar ataupun pengasuh, kita terhambat pada kemampuan kita untuk berkomunikasi ataupun mengajarkan komunikasi kepada anak-anak yang berkebutuhan khusus, terutama pada anak-anak dengan ASD. Oleh sebab itu, marilah kita bergabung di dalam seminar ini untuk belajar mengerti. Untuk informasi dan pendaftaran, silahkan hubungi 061-80025655.

Marilah kita mengambil bagian dan peduli.

5 Things I've Learned from Kids with Autism

I have just read a beautiful article by Cameroon Doolittle. She was mentioning that there are actually 5 things that she has learned from children with autism. When a lot of people involved with special needs children were asked about the things that they have learned, some of the most common answers are : "They taught me how to be more patient" or "I learn how to love". Those are good answers. But the thing is...what are the things that the kids themselves have taught us? And here below I quote the 5 things that she wrote :

1. Focus on the voice that matters most.

You’re able to read this sentence because your brain is ignoring most of the sounds around you. That’s an incredible ability that many kids, like one ten-year-old girl with autism I know, don’t have. Her brain can’t easily filter noise, so she hears the purring of the HVAC system, the cars driving by outside, and the tick of the clock. Can you imagine trying to focus through all that noise? In addition to her autism, God gave her the ability to learn how to filter and focus on the voices she needs to hear.

I admire and need to imitate her efforts in concentration. Despite my brain’s ability to filter noise, I find it incredibly difficult to hear God’s voice. All too often his still small voice is lost in the noise of my thoughts and anxieties. Only when we learn to listen like this child with autism to his words of grace will we obey and trust him.

2. See life through the lens of God’s word.

Ron Suskind writes in the New York Times about his son, Owen, who has an encyclopedic memory for Disney movies. Owen uses these movies to understand and communicate with the world around him. To communicate fear, Owen acts like the rat in Ratatouille. To show strength, he acts like Gaston from Beauty and the Beast. The real world doesn’t make sense to Owen, but the world defined by Disney does.

In a similar way, the world we live in doesn’t make sense until we see it through the lens God has provided for us in his word. Like Owen and his Disney stories, we need to allow the Bible’s story to explain our lives and direct how we live them. Some kids with autism, like Owen, see life through a text. We should too.

3. Discipline yourself to remember God’s unchanging love.

I know one little guy whose autism is expressed through extreme sensitivity to any kind of change. In a world that’s consistently inconsistent, he’s comforted by familiar routines and schedules. He insists that the car be parked a certain way, that the laundry basket remain in its place, and that tasks are completed in the same order. First the toothbrush, then the shower, then the clothes.

That kind of repetition can be really hard on the families we serve. But this little guy has helped me see the strength in the discipline he needs to have order in his world. Like him, I need to establish routines that help me remember God’s unchanging love for me. This boy feels safe within the restrictions of his schedule. We’ll feel that way too when we restrict ourselves to schedules that remind us of the irreversible freedom we have in Jesus.

4. Clearly speak the truth in love.


 

I love one little boy I see regularly who is very precise in how he processes language. His autism is expressed through saying what he means — exactly! — and assuming I will speak with that same level of precision. If he forgets to say “please” when asking for something and I tell him to use the magic word, he’ll reply, “abracadabra!” because “please” isn’t a magic word. If I tell him, “we don’t hit our friends,” he think it’s ok to hit strangers.

God has invited all of us to speak the truth in love, but we rarely do that. We use harsh and dishonest words because we don’t understand the power our words have to hurt and heal. We haven’t practiced the straightforward communication like my young friend does. I want to be like him! And in doing so, I can join him in showing off our God, who kept his word by giving his Word to redeem and restore the world.

5. Rest consistently in the grace of God.

There is a group of young people with autism who come to Jill’s House regularly. While their autism expresses itself uniquely in each of them, they all find themselves making so many social mistakes — so many faux pas, accidentally offending people so often — that the cycle of grace becomes second nature. One of the kids will greet his mom after a weekend of respite and say, “You’re still fat, mom.” He always feels terrible about it, but he has learned to quickly ask for forgiveness. His mom is quick to offer it and he’s quick to receive it.

For most of us, the cycle of grace is much longer. We hate being told that we’ve made a mistake. We try to defend ourselves. We blame other people and attempt to justify our behavior. The cycle can drag on years longer than it should. It’s in these moments that I need the humility of this group of young people. They rely on grace because they know they need it and trust that it’s available. And the same is true for us. So be like them and practice quick forgiveness.

(Taken from the article "5 Things I've Learned From Kids With Autism")

Maturity

 

 According to Erik Carter in his book “Including People with Disabilities in Faith Communities” : “Numerous faith groups have acknowledge their failure to respond to people with disabilities in ways that reflect their calling to be caring, loving, and responsive communities.” Although it is difficult to quantify the precise degree of involvement of people with disabilities in churches, various statistics reveal a need for churches to become more active in ministering to families affected by disability. Below are some U.S. statistics :

1.  According to one study which queried parents of children and youth with disabilities, fewer than one-half of children and youth with autism, deaf-blindness, intellectual disabilities, or multiple disabilities had participated in religious activities at any point during the previous year.
2. When 200 parents of adolescents and young adults with autism were asked about their child’s attendance at religious services, less than one-third reported their child attended on a weekly basis; only 11% attended religious social activities.
3. One-third of children and adults with intellectual disabilities who live in foster care or small group homes rarely attended religious services; only one-fourth “sometimes” attended religious services.
4. In a survey of 91 Christian, Jewish and Muslim congregations, 71% said they had a general awareness of the barriers to inclusion for the disability community; 69% said they had not yet started or were just beginning to transform their church family into a place of inclusion; 53% said they were in the process and only 28% had explored partnership with community agencies or organizations serving the disabled.

Even with the abundance of biblical teaching on the image and function of the church, we still fall into the trap of wanting our churches to appear “successful” and “to have it all together”. We prefer members who wear the  right clothes, drive the right cars, and know the right vernacular. But this is an illusion and a misunderstanding of what God truly desires – our brokenness.

(Part of an article from "Major Challenges of Church to Path of Maturity - Joni and Friends)

To think about it, this might be parallel to an illustration of developing and developed countries. Developing countries are still focusing on the staple necessities that the people need, while the developed countries are focusing on the additional necessities because they have almost no problem in staple necessities in their daily lives. 

But still, every countries, every churches have a purpose on being a mature country or church. For the church, it is one of the purposes as a community, to mature and to be sanctifies according to His will. So....this is a real wake-up call for all of us. Have we prepared ourselves and the church to the maturity and serve those in needs?

caRE & reACH Facebook Account

Hi Semuanya,

Mohon "like" Facebook Account kami : caRE & reACH. 

Melalui account tersebut akan terdapat banyak informasi singkat mengenai pelayanan dan kegiatan yang sudah dilakukan maupun yang akan dilakukan caRE & reACH, yang tidak semuanya akan kami post di dalam blog ini.

Terima kasih. Semoga ministri ini dapat membantu dan memberkati Bapak/Ibu.

Tuhan memberkati.

Hi All,

Please "like" our Facebook Account : caRE & reACH.

Through that account, we will post a lot of information about special needs children ministries and activities that have been done or will be done by caRE & reACH. Note that not all those information will be posted in this blog.

Thank you. We really hope that this ministry will help and bless you.

God's blessings be with you.