Anak comelku Autistic Spectrum Disorder

shidahameera

Originally posted by sepit-ketam at 27-6-2008 11:58 PM
br jumpa thread nie, anak umur 3th ada sintom nie gak.
bkn genetik tp sb kepala dia penah kena oprate masa umur 3bln. (blood clot)
yg sedihnyer my hubby mcm xleh terima yg bdk nie slow.
dia se ...

la..tabahlah sayang. .minta suami lebih mengerti, walaupun anak u slow tapi dia cukup sifat dan tidak cacat. kita tak boleh mengharap anak kita pandai dan cemerlang kerana mmg takdir mereka tapi kita sebagai parent mesti yakin tolong anak kita supaya boleh berdikari bila dewasa kelak. tak pandai tak semestinya takkan berjaya, yg penting bagaimana cara kita asuh mereka dgn bantuan perubatan dan pakar

mder

kat mana nak cari child psycologist kat penang? anyone apart from General Hospital........ Ada sorang akak ni dekat my office, dia risau ngan anak angkat dia.......dia kata response dia macam slow sikit........dah darjah 1 dah budak tu...... i suruh dia pegi hospital loh guan lye.........tapi 1st appointment dia is in sept.......punya la panjang que.........rasanya kalau dia gi GH pun lebih kurang sama jer panjang que......... tu nak mintak tolong kalau ada kawan kawan yang tahu.......thanks.....

norsha

ye la tu...dah call pun tempat tu..actually, first time je RM80...then, ever session 45mins-1hr, cuma kena RM65 jer..cuma now takleh wat appointment sb speech therapist tu tengah confinement...

ummi_aqeel

Rice/Almond Milk

Sebelum tu sy tau dah ada dolu2 nyer someone posted cara dia buat almond milk kat anak dia tp saya dah x jumpa posting tu . Manyak sangat..
Anyway, my son baru je diberi GFCF diet, i.e. kami sembunyikan biskut Jacobs dia (kesian tau puas dia cari & tarik2 tangan kitaorang nak biskut tu); that we replace with sweet potato & mango (blended). Susu Gain Plus dia kami gantikan ngan rice milk.. memula beli brand  Good Karma sebab tu paling murah RM9.99/1 liter, tp dia x nak sangat, kene campur ngan susu Gain dia. Dah habih yang tu, try Aussie Dream,Alhamdulillah, ngam ngan dia, boleh replace terus... tp kos dia RM10.99/1 liter . Tp sebab anak, kan.. x pe, so long as mintak2 ada improvement.. saya kira2 sehari dia minum 3 liter susu tu, so 3 liter x RM11 (round-up) = RM33 sehari x 30 hari = RM990 sebulan... ...
Jadi, nak tau le, camner nak buat semdiri rice milk or almond milk ni.. yang macam brand Good Karma tu, rice milk dia cam air basuhan beras, cair habih, rasa pun cam pure beras. Yang Aussie Dream tu, cair gak, tp x secair Good Karma & yang tak best, both brands tulih "not as replacement for infant formula" .

Tolong bg resepi & cara buat, ek..

Thanks in advance!

mami06

just key in almond milk recipe, banyak website akan keluar recipe tuh. Tak pun kalau nak tengok buat camne, go to youtube type in almond milk, rice milk, sesame milk pun ada... banyak demo org tunjuk buat mcm mana...

ummi_aqeel

thank you very much

manjakani

Assalammualaikum all...Just to update on my son's progress. Alhamdullillah dapat appoitment kat HUKM n dah pegi pun last Wed (9/7/08). Punye le banyak questions yang doc 2 tanya i think i spent nearly 2 hours. pakar kat tengah n there's another 4 students listening n taking notes. End of session, dia kata will set another appointment with child developmet team comprises of child phychiatrist, neurologist, speect therapist, occupational therapist and sape2 lah lagi 2 assess my son once more. Kadang2 I geramla all doctors ni. They always say there's no cure for autisme. I believe there is its just that as all the parents of autistic kids here know that there aren't any autistic child having the same features. Spectrum or sysmptoms differs from one autistic kids to the others so there are no general cure or treatment for it tapi i believe we as parents have to at least try to cure and treat them, not for us but for their future. We will not be with them all the time and through out their lives. When we are not around than what will happen to them? I yang paling paling geram when the doctors say autisme ni tak de cure. Ya Allah.... bukan semua penyakit ada ubatnye ke. kite je yang tak jumpa lagi ubatnye... or at least something to less the symptom. macam when i say to the doctors, what about the gfcf diet, than they will always say, there's no conclusive evidence that it will help lessen the symptoms, tapi betulla kan... sape nak sponsor research and mestilah company-company susu tu againts it... Like there's a rise in Autisme when MMR vaccination was introduce, mestilah company-company yang produce MMR vaccination tu kata tak...
Have you guys terbaca pasal IVIG treatment for autimse develop by Dr Sudhir Gupta from UCLA, Irvine. There a lot of cases that IVIG can treat Autistic kids. Read article 'Danial's success story' in Mothering magazine. website. www.mothering.com and here another website yang bagus http://www.autism-resources.com/  What about treatment with Xenotransplant? The thing is i feel that the medical community especially here in Malaysia seplah-olah give up or putus harapan and just accept that there is no cure or treatment of autisme. Bukan kita patut keep on trying ke to find the cure. Autisme Research Institute ttp://www.autism.com/index.asp pun ada programe that the doctors are well verse with autisme. Defeat Autisme Now! (DAN!) protocoal was initiated by them. They really research for causes and treatments. Causes of autimse from one child to the other is different.
Lagi satu the education that autistic kids need. No doubt centres for banyak, see http://www.disabilitymalaysia.com/ (list of all institutions and therapies are here) tapi the teachers there ada tak yang really have good solid education foundation in educating children yang disable? Most tangkap muat and SPM leavers. What does that tell us? No doubt ABA is the most widely known education therapy to help on behavior but it has its critics like robot like behavior or van potray the same behavior outside of the ABA structured environment. Like now people are talking about RDI (Relation Development Intervention) but do we have a centre or institution that caters for that. Or Floortime or DIR(Develoment Individual Relation) develop by ARI's Phychistrist, Dr Greenspan. Do we have centres like CTC and Playworks or Higashi School (all 3 in US) yang really dedicated for education, treatment and improving the lives of autistic kids?
I bukan apa, sometimes i get frustrated because all the treatments, good educations are there in this world but not here? Kenape tak de sorang doktor pun especially child phychiatric kat sini yang believe that there is treament and cure for autisme? Or at least lessen the syptoms? Bukan kita as parents tak boleh nak accept but hope is a powerfull tool and motiovation to move further.
I'm sorry for this really long membebel tapi I just want us, the parents to think. Betul ke tak de cure or treatments for autisme? Sometimes I rasa nak je bukak centre sendiri yang adopt Floortime/DIR by Dr Greenspan and fees inclusive of all the speech therapies, occuptaional therapies, Sensory Integration, Swimming classes and Auditory treatment like Tomatis method that has proven to treat autistic children. Can we parents do something about this?

ummi_aqeel

Dear Manjakani,
I am a mum of an autistic child as well, aged 3 yrs old and still non-verbal. How old is your son? My son was diagnosed as suffering from mild autism sometime early this year, also at HUKM CDC. During my time, there was a nurse interviewing me, followed by an appoinment with another nurse who did video-taped observation on my son and finally only I got to meet the specialist, a nice doc who dia the diagnosis andif I recall, did not mention anything about autism not being cured but instead suggest a few alternatives for correction. I think I guess they have changed the procedure sebab as you mentioned, you will be meeting with  child phychiatrist, neurologist.. but for my case, after seeing the doc I directly went to book the appoinment for speech & occupational therapist & my son ever since hav eattended these monthly therapist.
True, there is hardly any centers in Malaysia that really caters for this. I googled for info as well and did same phone calls here & there but I found that the good ones have long waiting lists and I actually went to survey and I found that the not-so-good one conditions are rather pathetic.. And yes, mostly are initiated by parents whose son/kid are also autistic. And true as well, the teachers are by majority, school-leavers/SPM-level... and the principal is the one who usually trained professionally on autism education & later passed them to the employees.
On ABA, I would suggest you read "Let Me Hear your Voice" by Catherine Maurice. This book gave me hope. And Jenny's McCarthy book (Louder than Words) also gives an insight on a mum journey to cure autism. And this forum also provides lots of info on what to do/treatment/ etc...
I'm about to start a home-based ABA program for my son. And also I just started on GFCF diet.
You cam PM me if you want to ask anything.
I believe, we as mums also experience the same feelings when we found that our kids are diagnosed.. but we have to be strong for the kid's sake and try to make the best of the resources available

Sasha

Shida, sorry lmbat reply..kawan I skg dia kata dia buat checkup kat Hosp. Gleanegles. 2 minggu sudah dia ada buat appoitment nak jumper Master ..tak tahu apa perkembangan dia skg.. sbb I skg outstation dah dekat 10 hari..blum jumpa dia lagi..kalau ada2 apa2 nanti i update kat sini

mami06

I dah lama aware doctor conventional medicine cakap no cure for autism. Thats why I pandai2 research sendiri, try GFCF dietc, acupuncture, bagi anak I DHA, chorella, etc, buat research sendiri kat internet... I x de pegi HUKM, GH or anything. To me no point buat appointment kat hospital biasa jumpa speech theraphist, phsychiatrist or whatever nak diagnose my son. I'm more interested in finding what can be done to treat his problems. I x minat nak pegi hospital to assess how bad his autism is. I know more about my son than the doctors. So to me, its up to me to find the cure. I ikhtiar segala benda yg I mampu dan terdaya...I lost hope in conventional medicine because I ada pergi klinik juga dulu, dr pun cakap autism no cure. Mmg sakit hati dengar dia cakap mcm tu, x bagi kita hope langsung. At least cakap berlapik la sikit kan... Doctor alternative medicine tak terus straight forward buat statement NO CURE. Most important thing is dont give up on your child, mungkin dia x boleh improve 100% but at least we can try aiming for 80% improvement or higher. To those yg problem anak x mahu bercakap, ada caranya utk encourage dia cakap. I ada tengok program supernanny kat youtube. I will repost the link later.

shidahameera

Originally posted by Sasha at 14-7-2008 11:55 AM
Shida, sorry lmbat reply..kawan I skg dia kata dia buat checkup kat Hosp. Gleanegles. 2 minggu sudah dia ada buat appoitment nak jumper Master ..tak tahu apa perkembangan dia skg.. sbb I skg outs ...

ok, sha, i tunggu.

shidahameera

Originally posted by mami06 at 15-7-2008 02:52 PM
I dah lama aware doctor conventional medicine cakap no cure for autism. Thats why I pandai2 research sendiri, try GFCF dietc, acupuncture, bagi anak I DHA, chorella, etc, buat research sendiri ka ...

Ikut doctor autistik mmg takder cure, anak-anak autistik mesti diajar berdikari dgn teknik yg betul. jika kita tak ambil berat ttg pengawalan dan aktiviti, anak akan kembali autistik, malah lebih teruk. contohnya seorang budak di sekolah anak shidah, dulu dia pergi NASOM tapi program diberhentikan kerana keluarga ada masalah kewangan. Anak kecil itu kembali seperti sebelum rawatan krn parents tidak selenggara dan follow up dgn betul. Parent kena rajin train anak membuat kerja rumah, menuli,membaca.

losyen

ye..betul tuh.. anak2 autistik ni sebenarnya takde sakit apa.. cuma mereka cepat merasa bosan dalam sesuatu keadaan. mereka nakkan kita sebagai parents, tumpukan perhatian sepenuhnya pada mereka. So depends on kita kena kena rajin layan mereka. layan disini bukan bermaksud manjakan mereka, sebaliknya..layan mereka seperti anak2 normal yg lain. ajar mereka membaca, menulis, buat keje sama2.. insyaallah, boleh..Pada mereka, kalau kita suruh mereka buat sesuatu, contohnya, tolong ambilkan barang, satu penghargaan pada iaitu anak2 ini boleh diharap & boleh buat keje. lepas buat keje tu, kita kena lah amik ati, puji skett kat diorng.. . percayalah.. saya buat camni kat anak saya.. pas buat keje tu..dia senyum.. konon2 tanda puas ati...heheh...

[ Last edited by  losyen at 16-7-2008 04:37 PM ]

shidahameera

Originally posted by losyen at 16-7-2008 04:36 PM
ye..betul tuh.. anak2 autistik ni sebenarnya takde sakit apa.. cuma mereka cepat merasa bosan dalam sesuatu keadaan. mereka nakkan kita sebagai parents, tumpukan perhatian sepenuhnya pada mereka. ...

samalah cara kita ni. ajar anak berdikari, bukannya manjakan dia

norsha

i pun tak harap any cure for my autistic child..i jus hope he can communicate what he wants..tu je..sb vocab dia banyak...

his session with speech therapist dah mula..and now i'm in dilemma...sb when the speech therapist assessed him, most of his vocabs are in english...tapi vocab for daily routine are mostly in bm...sebabnya? i thought him since young using english..i pun tak sangka dia masih ingat all the things i've thought him...tapi dia pi sekolah govt, yg communicate in bm..then, after school, i send him to nursery sampai ptg, yg jugak communicate in bm...tu yg dia pick up banyak bm vocab, expecially daily routine words..

now..the speech therapist asked me..nak pilih which language for him for the session..since she advice untuk guna 1 language je dulu sb dah la budak tu delay speech..kena pick up 2 languages at one time, confuse la dia...speech therapist tu pun payah nak bagi advice to me...sb my son nya vocab mostly in english tapi for daily routine in bm (which is necessary for him to communicate daily..)

his session will start every week start next month...i just pray he can improve...now, tengah make him speak two words sb dia dah lepas stage speak 1 word...

shidahameera

Originally posted by norsha at 19-7-2008 05:50 AM
i pun tak harap any cure for my autistic child..i jus hope he can communicate what he wants..tu je..sb vocab dia banyak...

his session with speech therapist dah mula..and now i'm in dilemma... ...

Mmg doctor advise suruh cakap satu bahasa saja takut anak kita keliru. Tapi shidah tak boleh lah nak cakap English ajer kat rumah, kat sekolah pun cakap melayu. Tapi syukurlah my son faham dua2 bahasa sebab bila kita cakap melayu terus explain kat dia . contoh " abang please take umbrella" lepas tu shidah cakap lagi dalam BM, tolong ambil payung, jadi dia faham dua-bahasa

losyen

budak2 autistic ni punya daya ingatan yg tinggi berbanding dgn budak2 normal. 1 lagi..diorg ni lebih senang faham english dari malay cause sebutan dlm english pendek berbanding dlm bm. tapi diiorg ni mudah konpius..

enyor

Salam.....


Salam semua...saya ahli baru kat sini. Dah lama try nak masuk forum ni tapi asyik tak dapat je. Tau pasal forum ni from sis manjakani. Anak saya pun ada autisme and hyperactivity, umur dah 10 thn. Now dah darjah 5, dia skip year 1 terus masuk year 2. Detected when he was 2+. Lepas tu asyik dok pi HUKM, doktor pulak yg saya jumpa setiap appointment mesti doktor yg berbeza, dan lepas tu tanya soalan yg sama je. Sampai bosan saya dibuatnya. Tapi ada sorang doktor tu suruh pegi daftar ke NASOM. Kami pegi dan dapat masuk sana lepas 4 bulan. Mulanya anak saya no speech at all. Tapi bila masuk NASOM, Alhamdulillah ada speech dah. Now very talkative, tp bukan la nak menyembang2 dgn kita. Dok repeat dialog2 kartun yg dia suka.

Anyway saya nak beritahu walaupun dah suntuk ni....Hospital Selayang akan buat bengkel anakku sayang on 2nd August 08 ni, topic on perkembangan emosi kanak2, kesihatan mental kanak2 dan remaja, kemahiran keibubapaan serta komunikasi antara ibubapa dan anak2 dan peningkatan tingkah laku positif. Seminar ni tak terhad pada parents yg ada special child sahaja, tp boleh apply pada anak yg normal. So kalau berminat nak joint call hospital selayang di UNIT MEKAR 03-61203333 ext. 2067 atau Marina Ariff 019-2246780. BAyaran RM50 utk org awam, RM30 utk ahli PerkAsa.

2 Ogos 2008
9.00 pagi hingga 5.00 petang
Auditorium UiTM Hospital Selayang

PerkAsa, stands for Persatuan Ibubapa KAnak-kanak Autisme dan Istimewa seMAlaysia. Baru saja ditubuhkan tahun ni di Hospital Selayang. Activity pun tak banyak lagi sbb ahli belum ramai lagi. Target nak cari ahli dari parents yg ada anak2 istimewa mcm kita semua disini. Kalau NASOM utk anak2, tp PerkAsa utk parents la. BEngkel anakku sayang ni anjuran bersama PerkAsa dgn Hospital Selayang.  So kalau ada sesiapa yg berminat pls call nombor kat atas tu a.s.a.p ye....sbb  tempat terhad.....saya mmg nak menulis panjang lagi pasal anak saya tp masa belum mengizinkan...nak kena hantar anak ke sekolah dulu....nanti saya sambung lagi.....

shidahameera

Originally posted by enyor at 29-7-2008 08:01 AM
Salam.....


Salam semua...saya ahli baru kat sini. Dah lama try nak masuk forum ni tapi asyik tak dapat je. Tau pasal forum ni from sis manjakani. Anak saya pun ada autisme and hyperactivity, ...

hi enyor
Aduih, rugi betul tak dapat join ni on saturday kena balik kampung.harapnyer program ni ada lagi nanti. u hantar anak kat NASOM mana?

orange_lemon

salam semua..
lm tk msk sini, memang betul doc memang ckp autisme tkder cure...tp ader cara utk membantu kanak-kanak ini..mcm ank saya pun doc pun tk braper pasti ank sy ni autisme ke tidak...tp sebagai ibubapa kita lebih mengenali anak kita..kita lebih memahami dia...tp sy bersyukur wlaupun anak sy tak petah bercakap seperti knk2 lain yg sebaya dengannya tp dia dari kecil tak pernah menyusahkan dan mendatangkan masalah pada kami sekeluarga...mungkin ini hikmah di sebalik ini semua...