10 Things You Can do to Help a Family Whose Child Has Been Diagnosed with Autism

Sumber artikel dari http://www.stumbleupon.com/su/24626l/www.psychologytoday.com/blog/autism-in-real-life/201101/10-things-you-can-do-help-family-whose-child-has-been-diagnosed-auti
Copyright Kymberly Grosso
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10 Things You Can do to Help a Family Whose Child Has Been Diagnosed with Autism
Helping a family whose child has autism is a precious gift.
Published on January 21, 2011

It has been estimated that the prevalence of autism in the United States is 1 out of every 110 births1. So it is of no surprise that many of us know or will know a friend or family member who has a child with autism.

When a child is first diagnosed, parents often scramble to find appropriate autism services, doctors, schools and therapists. What we don't always anticipate is that relationships with friends, family and neighbors often change. Some will stand by our side, doing what they can to help and embrace our child no matter the diagnosis. However, some people will either sit quietly on the sidelines or abandon the relationship altogether.

So what happens when you find out that your friend, family member or neighbor has a child who has been diagnosed with autism? How can you help your friend? How can you help their child?  There are many ways you can assist a friend from talking to offering a playdate.  Here are 10 things you can do to help a family whose child has been diagnosed with autism:

1. Being There
It sounds easy enough, but parents of children with autism need someone to listen and ask how they are doing. As a friend, you may not understand all the autism jargon, but moms and dads who have kids with autism often want to talk about their kids.

What can happen, however, is that the diagnosis of autism pushes us and our kids into isolation. It isn't like we want to be isolated, but we are sometimes so busy with autism related activities and therapy, it does not leave much time for anything else. Offering to come over for a cup of coffee or to get together just to talk can be one of the best ways to help your friend get out of his/her autism bubble and combat the isolation.

2. Discussing Autism
To talk about autism or to not to talk about autism?...That is the question. The answer is "It depends." Most parents who have kids on the spectrum are more than willing to talk about autism. But there are parents who do not want to disclose the diagnosis, talk about autism at all or how it affects their child. Some parents may be in denial about the diagnosis and will not even want to say the "A" word let alone discuss the topic.

So if you are a friend, what do you do? Let your friend bring up the topic of autism, and do ask how the child is doing. Even if a friend does not use the "A" word, he/she will appreciate you asking how their child is doing in general... without ever discussing autism.  If your friend is open about the diagnosis, showing interest in their child and the topic of autism is certainly appropriate. Because we never take progress for granted, parents who have kids with special needs are proud of their children's smallest accomplishments. To know that friends care about our kids makes sharing these times all the more special.

3. What Does a Child With Autism Look Like?
Seems like a strange question. But I know that there have been times when a person has met my son and then makes a comment such as, "He doesn't seem like he has autism." or "He doesn't look like he has autism." The interesting thing is that there is no "look" to autism. Yes, some of our kids may have similar behavioral or social characteristics, but they are all very different. So this is why if someone tells me they have experience in autism, that doesn't mean they will know or understand my child.



If you do know, watch or teach another child with autism, it is best not to compare what you know to the child you are meeting. Also, I would refrain from telling your friend about how you think autism should "look". Being open to learning the hallmarks of autism is important, but learning about the individuality of each child who has autism is the best approach.

Sometimes it is a difficult concept to explain to others how autism is different in each child. But as a parent, when your child has 10 friends with Aspergers, you can see easily how they are all very unique with their own talents and interests.



4. Prognosis
If you had asked me when Tyler was diagnosed at age 2 where he would be in 12 years, I could not have told you or predicted the outcome...nor could the doctors. Many times people will ask us, "What the prognosis?", "Will he grow out of the autism?" or "Will he go to college?" The truth for many of us is that we don't know our child's prognosis, and the topic can be a sensitive subject. Because we don't know what will happen, the future can be a scary, unknown.



Unlike parents of typical children, who plan for college or vocational schooling, we often do not know where our kids will be academically, socially or behaviorally when they become young adults. Can we plan for the future? Yes, but we go into it accepting the unknown variables as we plan. Our child's future may or may not include college or further schooling. We often don't know whether our child will ever be independent enough to live on their own. We hope for independence, but the reality for the future may include living at a group home or our child may need to live with us for the rest of our lives.

Many of us worry about what would happen to our child if something happened to us. This too, is difficult. So, if your friend brings up the topic of prognosis, then you should discuss it. But just be aware that some parents will not want to talk about this issue.

5. Information
Lately there has been a lot of autism awareness stories in the news. As a parent of a child with autism, I do appreciate friends and family sending me information they read. If you have a friend who is open about discussing autism, sending something you read is a fine way to show you care. Just because we have a child with autism does not mean we necessarily know every latest thing that is going on in the autism world.

The only caveat I would mention in this area is that parents don't always agree about autism treatments or causes. As a result, parents sometimes react strongly to studies, articles, etc.. So my advise would be to go easy. If a friend seems receptive to new information, feel free to send it but never push too hard.

6. Playdates with Friends
I can remember when my son was first diagnosed, and my friends also had children Tyler's age. What my son really needed was to be around other typical children. However, some friends acted like somehow autism was contagious and did not want their child playing with mine. I can remember a good friend's husband expressing his displeasure with my son and his autism. After that, I never went out of my way to get our kids together, because I felt her husband didn't want my son around her children. It was a rude awakening about how some people accept our kids and some people clearly do not.

So what can you do? If you have a friend who has a child with autism, invite her and her kids over for play time. Will it be typical playdate? Maybe yes...maybe no depending on the children. Even if the playdate is a little out of the ordinary, it will offer the kids with autism an opportunity to learn typical social behaviors/skills from other children. For the typical kids, the playdate may provide a lesson in acceptance and tolerance of people who are different from them. Acceptance is a lesson that is learned best by doing, so your children will benefit as well. It can be of great experience for both families.

7. Playdates with Neighbors
When it comes to autism, being a good neighbor means more than keeping your yard clean and sharing a cup of sugar. If you have a child the same age as your neighbor's, invite them over for playtime. You may want to invite the parent and the child over for the playdate so you can learn how the autism affects individual child and how to help the kids play together.

It is important to note that many children with autism have difficulty creating and maintaining friendships, engaging in conversation and/or working within a group of children. This means that you may need to help facilitate the friendship and communication between your child and the child with autism. Also, many of our kids do better within a structured environment. Creating a well organized playdate with specific activities may help both kids enjoy their time together.

8. Help with Respite
Whether the child is a toddler, adolescent or adult with autism, respite is often a complicated issue for parents. Many parents who have children with disabilities are overwhelmed with the day to day responsibilities. Some children on the spectrum do not sleep well during the night and that further adds to the exhaustion.

However, when you have a child with special needs; it can be difficult to find someone you trust to watch your child. For example, I could easily find a teen babysitter in our neighborhood to watch my 4 years old, neurotypical daughter. But when my son with autism was her age, there was no way an untrained teenager would have been able to babysit him. My son only spoke a few words at the time and had many behavioral issues, so I only could trust my parents or another adult to watch him.

So what does this mean if you are a friend or family member? An offer to provide brief respite from a trusted friend or family member who knows how to appropriately interact with the child with autism would be great. Whether it be one hour or a night, any offer would be a gift for a friend in need. It seems like a simple favor, but it can mean everything to an overwhelmed parent to have a few hours to go grocery shopping or to just spend some alone time with their spouse.

9. Don't Judge
Whether it is a disapproving stare in a grocery store or comments from a family member about how we need to "better discipline our child", most parents who have a child with autism been subject to judgment from others. Considering that we live our life in a fishbowl, with countless therapists in our home and never ending doctors appointments, we often grow weary of "advice" from those who do not have a child with autism. No matter how much you think your criticism is constructive, be aware that expressing it may easily break off or damage your relationship.

Until you walk a mile in our shoes, you will never know what is like to have a child with autism. Most of us instinctively know that we should not judge others, but it can happen easily. And once it happens, it may be hard to reverse the damage.

10. Confidentiality
Some parents, like me, are very open about talking about their children and the diagnosis. But some parents may not want to discuss autism except perhaps with a close friend or family member. And on the far end of the acceptance scale, some parents may be in denial about the diagnosis and won't discuss the issue with anyone.

But regardless of how much we discuss our kids or autism, we do expect confidentiality. Just because we open up to a friend does not mean we want our friends or family telling others about our children or any issues we are having at the moment. Confidentiality is especially important to a parent who has chosen not to disclose their child's diagnosis to others . While it seems like common sense not to gossip about other people's children, it is worth mentioning that if we tell you something, please keep it in confidence unless you have the permission of the parent to share this information with others.

The Bottom Line
In your lifetime, you will probably know more people and families affected by autism. You can choose be part of the solution by helping support a friend, family member or neighbor. Take the time to learn not just about autism, but the individual child. Make the decision to accept children with disabilities and teach your children how they can help children with autism by being a friend too.

If there is one thing I learned about friendship after my son was diagnosed with autism, it is that it can be very fragile. Being a friend during good times is easy. Yet it is during the difficult times that we learn who our real friends are. I am forever grateful to those friends and family members who supported our family after the diagnosis. They made a choice to accept my son for who he is and help us in any way they could. Making the choice to support a family affected by autism is one of the greatest gifts you can give. It is also very likely that your act of kindness may turn out to be one of the greatest gifts you receive back as well.

"Our most difficult task as a friend is to offer understanding when we don't understand." ~Robert Brault

Copyright Kymberly Grosso

Hariz Di Teluk Sengat

Ahad, 13 Feb 2011.

Kami pergi beli ikan segar dari sangkar di Teluk Sengat, sempat merakam aksi Hariz semasa berada di sana.

Mengurus Tingkahlaku: Rasa Terganggu Dengan Suara Tangisan

Tingkahlaku:
Beliau sensitif dan mudah rasa terganggu mendengar suara budak menangis. Pada ketika catatan ini di buat, beliau masih lagi mudah rasa terganggu dengan tangisan budak. Aras rasa terganggu mengikut kuatnya tangisan yang didengarnya. Apabila mendengar tangisan budak, fasa pertama - beliau akan meninjau siapakah yang menangis dan memerhati, fasa kedua – beliau akan menunjukkan reaksi balas dengan cuba pergi ke budak yang menangis dan cuba memujuk dengan caranya (yang memang tidak sesuai), dan fasa ketiga – beliau boleh bertindak melakukan sesuatu untuk menghentikan tangisan. Dalam mana-mana fasa beliau boleh ‘tantrum’ apabila di halang.

Tindakan:
Diperingkat awal di mana beliau sukar untuk di kawal, kami akan segera membawa beliau jauh dari suara tangisan yang menggangunya. Diperingkat di mana beliau boleh mendengar penerangan dari kami, kami memberitahunya sebab kenapa budak itu menangis. Dan kami akan melihat reaksi balasnya. Sekiranya, positif kami akan terus kekal di situ, jika negatif kami akan membawanya beredar dari situ.

Kesan:
Walaupun tingkahlakunya belum hilang sepenuhnya, kami dapati lama-kelamaan beliau dapat menerima penerangan kenapa budak itu menangis. Tetapi ketika emosinya kurang tenang, beliau kadang kala tidak boleh menerima penerangan kami.

Tayangan Inspirasi

Berikut adalah cerita-cerita yang pernah aku tonton:

Mercury Rising - sebuah kisah seorang Ejen FBI melindungi seorang kanak-kanak autistic bernama Simon selepas ibubapanya di bunuh kerana disyaki dapat memecahkan kod sulit. Keistimewaan yang ditonjolkan dalam watak Simon, dia boleh menterjemah kod sulit yang mengandungi mesej rahsia, dan sangat tajam ingatan.

Tare Zameen Par - sebuah cerita mengenai seorang kanak-kanak yang menghidap disleksia. Sebuah cerita yang aku rasa berjaya memaparkan cabaran dan rintangan sebagai seorang disleksia dan orang yang ingin membantunya, lantas menjadikannnya seorang yang berjaya dan dapat di terima oleh masyarakat.

Temple Grandin - sebuah cerita benar mengenai seorang yang bernama Temple Grandin penghidap autisme. Cerita mengisahkan bagaimana menghadapi kesukaran menyesuaikan diri di dalam masyarakat. Seorang guru yang peka telah membuka ruang dan peluang untuk beliau berjaya dalam hidupnya. Beliau kini bergelar Professor.

My Name Is Khan - lagi sebuah cerita bollywood mengisahkan seorang penghidap autisme yang mengembara hingga ke Amerika untuk bertemu dengan Presiden Amerika. Banyak yang berlaku sepanjang pengembaraannya. Sedikit sebanyak dapat meningkatkan kesedaran mengenai autisme.

Ocean Heaven - sebuah cerita lakonan Jet Li yang mengisahkan cabaran seorang bapa menjaga, mendidik dan membesarkan seorang anak autisme. Beliau amat risau akan masa depan anaknya apabila beliau tiada lagi di dunia ini.

Rainman - sebuah cerita mengisahkan seorang abang yang menculik adiknya yang menghidap autisme sebagai alat untuk mendapat sejumlah wang selepas kematian ayah mereka.

Apa Reaksi Anda Bila Di Situasi Ini?

Salam.

Beberapa hari yang lalu, kami hadir untuk temujanji OT Hariz pada sebelah pagi. Sesi sebulan++ sekali itu biasanya dikendalikan oleh anggota pekerja tetap dalam masa cukup satu jam. Kali ini kami disambut oleh dua orang pelajar praktikal dan sesi berlangsung tak sampai satu jam dilaksanakan oleh pelajar praktikal itu. Kami rasa ianya sememangnya bagus bagi memperbanyakkan lagi tenaga mahir untuk mengendali sesi terapi cara kerja.

Tetapi ada perkara yang menggusarkan kami, iaitu kami dapati sesi itu dilaksanakan oleh pelajar praktikal tanpa bimbingan dari penyelia mereka (kami lihat pelajar praktikal tersebut bawa Hariz ke bilik terapi tanpa penyelia). Fikir saya sesi tersebut dilaksanakan tanpa merujuk rekod perkembangan sebelumnya (kami tak dapat melihat, kerana pintu di tutup, jadi kami mendengar dari balik pintu). Bertanyakan perkembangan dari temujanji terakhir pun tidak, maka bagaimana anak itu hendak mendapat kebaikkannya. Sudahlah begitu, sesi tak cukup satu jam dan aku kena ambil cuti satu hari. Hendak jadi cerita lagi, Hariz agak aktif pada ketika itu. Maka ketua jurupulih ada soalan - "Ada bagi dia ubat?"; dan ada juga saranan - "Jangan bagi makanan yang ada pewarna". Kami rasa kalau dia ada rekod lengkap perkembangan Hariz, dia tak akan cakap macam tu. Sudahlah jumpa satu jam dalam sebulan++ sekali, komen macam jumpa selalu.

Aku rasa lemau..... apa kamu rasa?

OT di HSI, Main di Playland Tesco, Minum di Rasamas Jusco & Main Boling di Daiman Bowl

Rabu, 02 Feb 2011.

Hari ini merupakan hari yang penuh dengan aktiviti luar. Seawal jam 9.30 pagi meninggalkan rumah untuk sesi OT di HSI. Begitu bersemangat Hariz hendak ke sesi OT kali ini. Dari malam sebelumnya, berulang kali sebut "Tidur ni, esok siang pagi nak pegi OT". Tentu anda semua tertanya-tanya kenapa Hariz begitu bersemangat. Emm... sebab selepas sesi OT di mahu ke Tesco yang betul-betul di sebelah HSI, nak main di Playland. Alhamdulillah, sesi OT nya berjalan lancar, setelah selesai OT terus menuju ke Tesco untuk layan Hariz bermain di Playland.

Bermain di Playland, Tesco

Sudah beberapa kali kami bawa dia bermain di Playland itu. Untuk pertama kali, kami agak gementar bila lepaskan dia bermain di situ sebab bercampur dengan kanak-kanak kecil. Almaklumlah Hariz kan berbadan besar, takut-takut terlanggar atau terpijak anak orang. Sehingga hari ini kemahiran sosialnya nampak ada peningkatan di mana dia boleh bergurau senda dengan kanak-kanak lain yang baru pertama kali dia jumpa. Berdasarkan pemerhatian, Hariz mudah untuk berinteraksi dengan kanak-kanak yang lebih kecil dari dia. Kami tak tahu sebabnya. Macam mana pun setakat ini tidak ada lagi insiden yang tidak diingini berlaku.

Selesai bermain di Playland Tesco, bergerak ke Jusco - pun kat sebelah Tesco tu aje. Kali ini sebenarnya permintaan dari ibunya. Di dalam Jusco, Hariz berkelakuan amat baik. Lalu di hadapan Toys 'R' Us, kedai handphone & komputer rilek je. Amat memberangsangkan. Tidak lama kemudian dia mintak masuk di Restoran Rasamas, nak makan katanya. Bila dah masuk, dah pesan nasi ayam tak mahu makan pula. Nak makan sup cendawan katanya, aduss... Pesan sup cendawan, habis dia makan semangkuk. Yang menariknya, dia buat crossword puzzle yang ada kat atas meja tu sementara menuggu pesanan sampai. Pesanan dah sampai pun dia masih buat sambil makan. Dapatlah jumpa 10 perkataan dari 25 perkataan dengan usaha sendiri.

Buat puzzle di Restoran Rasamas

Keluar dari Jusco, menuju ke Daiman Bowling Centre. Kali ini melayan si abangnya pula. Dah lama ajak nak main boling. Risau juga bila bawa Hariz bersama takut sejarah berulang. Masa Hariz berumur 6 tahun (jika tak silap), pernah bawa Hariz bermain boling di tempat yang sama. Hariz tak mahu berhenti bermain boling, keadaan agak huru hara bila permainan ditamatkan. Tantrum guling-guling atas lantai di tambah dengan jeritan. Kali ini situasinya amat-amat berbeza. Dia sangat teruja, boleh menunggu giliran untuk membaling dan boleh tamatkan permainan tanpa tantrum. Bermain 3 game - daya fokus dalam game pertama sangat bagus tetapi sudah tidak ada fokus bila masuk game ketiga bila mana ada orang lain bermain di lorong sebelah.

Aksi di Daiman Bowl

Score Hariz yang bawah tu

Mengurus Tingkahlaku: Berasa takut/cemas ketika hendak memakai/menanggalkan baju

Selasa, 30 Jan 2011.

Tingkahlaku:
Beliau berasa amat takut atau cemas ketika kita hendak menyarungkan dan menanggalkan baju dari arah kepalanya. Sehingga mengelak-elak bila hendak memakaikannya baju. Mungkin keadaan gelap dan rasa seperti lemas membuatkannya begitu.

Tindakan:
Kami pastikan baju dapat disarungkan atau ditanggalkan melalui kepalanya dengan sekali cubaan sahaja.

Kesan:
Kami perhatikan dengan memastikan baju dapat disarungkan atau ditanggalkan dengan sekali cubaan dapat meningkatkan keyakinan beliau dalam menghadapi situasi ‘gelap’ atau ‘lemas’.