THERE’S NO WORK LIFE BALANCE IN MY LIFE!

I came back to Dungun in August 2013.  Coming back with no Phd makes me more inferior.  Some of my friends had completed their studies. Coming back with the Dr in front of their names.  The worst part is when my ex student, Hairi Jalis also had come back with a Phd. As a mom and being a caregiver for a two special boys with Autism and ADHD, I told myself  that I am a HERO! I’ll take this as a challenge, making me feels better , walking my day to day life  with these two boys. My son, Iman turn to be more aggressive at the age of 13. I can’t simply spank him as he’s growing bigger now. I’m afraid of the risk, what if he fights back?

I was call by the Rector, my boss just can’t take it when I can’t achieve  the organizational KPI’s: I turn up late to the class, submitting late result for the final exam papers, applying so many emergency leaves, turning up late for the meeting and so on. I was seen as a black sheep in this organization now.  I can’t join the other staffs for lunch, parties, celebrations or even attending the family day and attending conferences away from Terengganu. I don’t dare to leave my boy with my husband.

It’s not him that can’t take care of Iman, but it’s me who always thought that I’m the only one who can cope with his irritating behaviors. I became anti socialized now. It’s not that I feel so shy about these two kids, but Iman is always throwing his tantrums in front of the public. Irfan is doing okay most of the time, but he still have his bad behaviors in front of others. He used to cling with me anywhere I go. Having his wet trousers after going to the toilet, leaving the smell of his urine almost every time he leaves the toilet.

For Iman, I still keep on giving him Risperidone, but this year I noticed he’s like “resistant” to his medication. It seems that the dose given to him does not giving any effects on him. I started giving him homeopathy early December, but he turned to be more aggressive after I introduced him to this type of medication.

There are some reasons why I hardly make myself committed to my work, on the other hand I can call myself as NOT HAVING A WORK-LIFE BALANCE anymore:

1.       I have a daily maid coming to take care of my kids when I’m having my lecture at UiTM,  but I just manage to pay her RM10 per hour due to my financial constraints. So she just come for 3 hours a day, 3 times a week only. I got to sacrifice my 2 to 5 pm for the other 2 days, staying at home, jeopardising my career,   as there’s no one to take care of Tajul Iman. I experienced leaving this boy with his other siblings, but it end up with my tears when I saw some marks on his body when I came back from work, telling me that he had been pinched/spanked by his siblings when I was not around. I cried in agony.

2.       When I am at home, I got to give my son a full attention, a one to one attention until I can’t do any office work, not even a sentence for my Phd thesis. I faced problem when I got to mark the students’ final exam papers with all essays, with the minimum of 3 different codes of subjects per semester, They just give me  ___ days for me to finish the marking and I use to take more time to complete these tasks. I got a threatening statement from the boss via text messages last 2 semesters on my failure to submit the results on time, but I tried to take it, with no hates and grievances, to me he was just doing his job. After all  he also got a series of threats from his superior. It’s just me who can’t cope throughout this hardship in my life!

3.       I got to attend a few series of occupational therapy for both kids, particularly in the afternoon, limiting my commitment to have an adequate working hours in the office. I use to spend at least 3 hours in the hospital for each visit to the physiotherapy clinic. It’s not easy when I got to wait for my turn for my son’s therapy and health check. When Iman got his asthma attack a few times, especially during rainy seasons, I got to be in the clinic sometime up to 2 hours for them to release his asthma, using Nebulizer. I end up with buying my own Neb as I found my son just couldn’t take it when he felt his difficulty in breathing, at the same time he got to wait for his turn to use the Neb after other asthma patients were using it. This is also time consuming for me. It involves all the patience I have in life!

What is Mild Autism?

(article from about.com)

a person with "mild autism" may have advanced communication skills and academic abilities, but have very delayed social skills, severe sensory issues, and/or extreme difficulties with organizational skills. As a result, the individual with "mild" autism may find public school or work settingsmore challenging than an individual with greater language challenges but fewer sensory or social problems.

As an example, imagine a very academically bright, linguistically advanced individual who can't stop himself from blurting out answers in the classroom, and falls apart at the sound of a vacuum cleaner or the light of a fluorescent bulb. Compare such a person to an individual who has significant problems with academics but has few issues with sound or light, and has no problem following rules. Which individual has "milder" symptoms? The answer, of course, is that it depends upon the setting and the situation.

People who are "mildly" autistic are generally considered to be Level 1, meaning they need relatively little support to live a normal life. 

But of course that's misleading, because many people with "mild" autism may need a great deal of support depending upon the situation.  For example, a person with "mild" autism may have great verbal skills but have no ability to read another person's body language or emotions.  As a result, plenty of people with "mild" autism get themselves into trouble with the opposite gender, with work or classmates, or even with the police.

Bottom line, the term "mild autism" is not especially useful, though it is fairly common. To really make sense of its significance, you'll need to ask direct, specific questions about verbal, social, sensory and behavioral challenges.

Why We Need Autism Day?

By Scott Badesch, Autism Society President and CEO

Today (April 2, every year) is world autism awareness day. Today, throughout the world, individuals will come together highlighting the needs and dreams of people living with autism. Today, all of us at the Autism Society honor and respect each individual living with autism for whom they are. We celebrate and honor parents, siblings, grandparents, teachers, and other professionals who provide support and love to those living on the autism spectrum. We celebrate those who, years ago, did not accept what they were told they couldn’t do and today have shown what they are capable of. We celebrate those elected officials, business and religious leaders who value the beauty of a person with autism.

But today, we also must realize that autism, in growing numbers, exists each day of the year. We also must remember that while we aim to increase awareness of autism, the larger societal need extends way beyond awareness. Our nation still lacks a strong commitment to assuring that each person living with autism is provided an opportunity to realize a quality of life so many are still denied. Our nation must stop talking about autism and do more than talk. Today, most people living with autism are discriminated against in employment and access to a quality public education. Parents regularly must battle with their child’s school to ensure their child receives the required and legally mandated opportunities to succeed.   We are all aware of the issues people with autism still face today. Let’s use today to focus the conversation on making meaningful change.

Today promotes the need for awareness and the Autism Society joins in that effort. It is not enough.  The real question that must be asked is will we as a nation on each day of the year really commit to allow each person living with autism to advance on a successful path, free of unnecessary obstacles to maximize his or her quality of life. When that is the reality, we can then celebrate as a nation that we did something right. Autism impacts 1 in 88 individuals. It is time to allow each “one” on the autism spectrum a life of success and opportunity.

World Autism Awareness Day

The eighth annual World Autism Awareness Day is April 2, 2016. Every year, autism organizations around the world celebrate the day with unique fundraising and awareness-raising events. How will you celebrate? 

Autism Awareness

Autism is a complex neurobiological disorder that typically lasts throughout a person's lifetime. People with ASD have difficulties with social and communication skills, which are often accompanied by behavioural challenges. Many people with ASD also have unusual ways of learning, paying attention, or reacting to sensations. It is part of a group of disorders known as Autism Spectrum Disorders (ASD). In most cases its causes are unknown. Today, 1 in 100 individuals is diagnosed with autism.

Autism awareness is important. By being aware, we can understand. We can empathize. We can restrain our judgments. We can attempt to be helpful. We can learn. We can teach others what we know.

So if you see a child throw a tantrum in the middle of a store, don’t judge. Don’t shake your head. Don’t mutter things under your breath. This may not be a tantrum — it might be a meltdown due to overstimulation. Children on the spectrum have difficulty expressing themselves and can get overwhelmed by lights, noise and activity around them. It’s difficult for them to process the flurry of activity that you or I can simply filter out.

Iman hurts himself

A common criteria for ADHD children is to hurt themselves, just to seek for attention!!. This week Iman starts his new behavior by scratching his face until blood comes out. His keeps on doing this again and again.

  

Caring-for-a-child-with-autism

Caring-for-a-child-with-autism

Blogger and lecturer Norlaila Mat Tahir shares her experiences of caring for her son Iman who was diagnosed with autism and ADHD. She talks especially in terms of the personal challenges to overcome his learning difficulties, integrating him into society and the leaps and bounds of improvement he has made over time.

She also discusses the need for parents to take care of themselves, sharing how taking care of herself and starting a blog to share and educate other parents has helped her. 

Challenges in ADHD children's behavior

I's just a snippet, never become my intention to grumble on this special gift from the God. But this is to show the facts on my son's behavioral problems involving all the mess and difficulties in our daily lives. We need some courage in coping up with his behaviors, everyday in our journey with him. With all our feelings of sadness, anger and frustrations. These photos of our car and house tells you everything...

MY RESPONSE TO PARENTS E MAIL

I'd received some e mail from the parents. Most of them used to be parents for children whom yet to be diagnosed or just being diagnosed with Autism. I hope some of my answers to parents will help other parents (who read my blog) to cope and to guide them on what to do next on their day to day life with their children. I did mentioned some of the books my husband used to buy for me. (My specials thanks to my beloved husband for all his support). All this materials are important for our reference.

To the parents whom their names are mentioned here, I'm asking for your blessings to make it unveiled to the public. Here are some of my answers to the parents e mail. I'm sorry most of the e mail will be in Malay language as I got some local e mail in my inbox.

Letter 1 (21st Jan 2015)

saya xtau nk mulakan macam mana 

Cenilah saya nk mintak nasihat and pandangan Mdm Laila

Saya ade bace blog puan Tajul Iman Autism child: Contact Us

				Tajul Iman Autism child: Contact Us Autism is a life-long brain disorder that is normally diagnosed in early childhood. People with autism have difficulties communicating, forming relationships with o...
				View on imanspecialboy.blogsp...	Preview by Yahoo

Saya suspect anak saya autism, umur dia sekarang 3 tahun. belum pandai cakap

dulu dia ada sebut mama, sekarang da xsebut, dia boleh sebut apple tapi xbole sebut mama

Saya belum jumpa psychiatrist utk diagnose..Saya da call NASOM untuk buat appointment, tp waiting list byk, lg 6 months baru boleh diagnose.

Dia sangat hyper, susah nak tdo malam, selalu tido pukul 2, tp ada sekali tu tido pukul 5, 

dan byk lagi ciri2 xmacam budak biasa

saya nak mintak pandangan n nasihat Mdm , apa yg perlu saya buat dan perlu tahu pasal autisme ni

Budak2 istimewa macam ni sekolah kat mana ye? Ada yg goverment punya x? Saya duduk kat Seri Kembangan

Saya baca blog Mdm, Mdm seorang yg kuat jaga anak istimewa Mdm Iman

Saya xtau nk mulakan macammana, saya lost

MY ANSWER:

Salam,

Adik sayang, next time kalau ada e mail apa2, you SMS akak bg tahu ada e mail something kat tjlddn7. Akak ni busy sgt, since I'm still working and Tajul Iman is severe Autism. Faham2 jelah. So sorry coz lambat reply. Please text to me your contact no ye dik.

Adik sayang, jangan tension dulu. Bertenang. Kak Laila rasa most probably anak adik ada ciri Autism, tapi jgn melatah dulu. Pertama, terima hakikat ini dulu. Redha sayang. Dlm pada tu doa supaya anak adik BUKAN autism. Akak baru jumpa satu buku karangkraf bertajuk "GENIUS DARI SYURGA" tulisan Ainizal Abdul Latif. Adik cuba cari buku ni dulu sebab Kak Laila rasa dgn baca buku ni adik boleh tambah memahami apa itu Autism dan cuba cek or diagnose sendiri adakah anakmu ini Autism. Jangan label anak ni dulu sayang. Ianya akan sgt pengaruhi emosi kita.

Bila baca buku ni adik akan lebih tenang dan soalan adik pada akak tadi akan terjawab. Tips utk jangka waktu sekarang ialah tarik nafas dalam2, Istighfar pada Allah. Ingat jika anakmu memang Autism, langkah pertamamu ialah SABAR, REDHA dan SYUKUR krn kau terpilih. Adik Allah syg kat kita maka kita diujiNya.

Then cari ilmu, cari buku tu tadi, buku2 lain juga termasuk yg ada kat blog akak tu. Tapi utk langkah drastik, bawak anak ke Hospital Serdang dulu. Gi klinik pakar Pediatrik (Kanak2) but before that dapatkan surat refer dari panel klinik dulu atau surat dari klinik kerajaan. Terus terang bagi tahu orang kat hospital yg adik nampak anak ada sedikit ciri Autism dan nak diagnose. This will take some time. Sabar, akak dulu dah 5 appointment baru fully diagnosed. Dah pasti anak tu Autism jgn tunggu, Mintak surat pengesahan doktor pakar dan buat kad OKU. Eh jgn rendah diri sayang. Bila buat kad ni anak tu akan layak elaun RM150 sebulan (yg akan dibyr 2 kali setahun ie Jun and Dis). 

Kalau dia dah umur 7 tahun nanti bawak surat pengesahan doktor, gi ke Pejabat pendidikan Daerah (PPD), PPD akan keluarkan surat utk bawak anak ke sekolah yang ada pendidikan khas (PPKI) coz di sana  anak adik akan ditemuduga utk pastikan boleh tak dia diterima masuk ke PPKI. Jangan harapkan pendidikan di PPKI saja coz kat sana mereka tak fokus utk pendidikan anak2 Autism, tapi macam2 jenis kelainan upaya ada kat PPKI dalam Government school sekarang. Kalau ada duit hantar dia kat mana2 Autism Centre atau therapy. Akak ada seorang kawan yang run Autism centre kat Seri Kembangan. Cikgu Fadliana. No dia 017-3627552 atau 017 3279389. Untuk cari alat bantu mengajar anak Autism, kawan akak si Marliza ada kedai di Batu Caves dan kedai onlione dia kat facebook MOMS & TOTS. No hp Marliza 0192303549 (orang ganu kite ni).

Lepas dapat appointment demi apmt, jgn tunggu kptusan diagnose baru kita nak bertindak. Teruskan cari ilmu, baca buku dan apply teknik2 yg buku2 atau pakar2 tu sarankan. InsyaAllah, doa selalu, mana tahu dgn kesungguhan dan istiqomah adik, anak adik ni takkan SEMPAT jadi Autism betul.

Tapi kalau sebaliknya kau Redhalah. Jangan jadi macam Kak Laila dulu. Dek kerana nak mengejar cita2 sgt, akak jadi macam tak redha, salahkan Tuhan. Sayang, masa tu  buta betul mata hati akak. Syukur akak masih boleh bertaubat, sekarang akak puashati. Akak redha, let go dulu Phd yang akak kejar utk kepuasan dan nikmat dunia dan alihkan sepenuh tenaga utk penyembuhan anak. Yang lebih penting ialah cara bagaimana kita belajar redha, memahami dunia anak ni dan jangan lupa ujian demi ujian akan dtg bertali arus. Bersedialah dan laluinya dgn sabar. Tu biasa dik. Ingat redha redha redha, jgn byk menangis tapi mengadulah pada Allah. Mulakan solat dgn sempurna, mulakan solat malam, keluarkan airmata tu sambil mohon keampunanNya. Akak cukup tersentuh hati bila ex cikgu Matrikulasi akak jumpa akak dia kata. Sabar Laila.,Allah rindukan suaramu merintih memohon padanya. Barulah akak sedar yang selama ni berdoa pas solat pun akak kurang bersungguh2.

Lalui semua ujian ni mcam you masuk exam. Makin tinggi darjat yg Allah nak bagi you, makin besarlah ujiannya. Jangan buat macam Kak Laila, akak marah Tajul Iman, jerit dia, pukul dia, sebenarnya tu akan tambahkan dosa kita. Ingat SABAR SABAR SABAR tiap saat. Ladang pahala tu dik.

Dalam pada penuhi siri2 appointment yg akan diberikan oleh hospital adik teruskan baca baca dan baca sambil siapkan diri utk terima anugerah Allah ini. Ni tgh dgr lagu Arjuna Beta dari Fynn Jamal. Buka kat you tube, dgr lagu ni. Kita jadi ibu pasti tenang. Anak angkat dia ni pun hidapi Autism dik. Ok je hidup dia. Gembira sakan lagi. Ingat Allah nak kita makin dekat denganNya maka kita didekatinya dgn cara ujian2 ini.

Sayang, akak kesuntukan masa. Byk keje today. kalu rasa rindu atau down, just text akak dulu 01126451058, ni talian Digi. Tya Kak Laila, I'm Shafinas, can I call you now? Pasal Autism ni. Then akak akan reply. Maaf terpaksa apply cara ni coz dalam menangani Tajul Iman tiap hari there are too much of cries, akak takut masa you call tu akak sdg nangis atau dalam bilik kuliah di UiTM. Masa mengajar we got to silent the phone. Sayang ingat cakap akak. Lalui dgn tabah, Kalau dia tak tido malam cuba buat dia penat petangnya, bawak gi main kat taman, kasi dia penat, nanti cepat dia tido malam. Ada hikmahnya ni. As a mom kita pun leh kurus juga. Kalau blh jgn bagi tido byk siang. Tak tido langsung lagi baik. Ingat find time for him. Adik keje ke? Kalau keje kena ada beberapa strategi. Nanti from time to time akak ajarkan. 

So akak pen off dulu. Take care dear. Ingat Allah sayang kita. Oh ye please dengar radio ikim selalu. Kalau di tpt adik tak silap akak 91.5 FM. cari ikimfm.my dan dengar online. Also kalau nak cepat dapat link ke radio station ni like fb akak "kelab nutrisi Herbalife Norlaila" dan cari post pasal Ikim radio. FB ni bukan utk kesihatan jasmani je dik tapi tips tentang kesihatan dan sains makanan. Bidang pengajian akak. Bagi tahu kat friends di facebook you tentang kelab akak ni ye. Akak nak saham akhirat ni. Kat fb ni I ada byk post utk DUNIA & AKHIRAT. Ada BFM station juga. Enjoy listening. My favourite radio station! Boleh improve English lagi. I use to tell my students at UiTM. This is the correct channel for them to improve their English communication! 

Love you always...Ingat Allah, jaga solat, istiqomah dalam melakukan amal soleh. Jangan lupa zikir zikir zikir selalu. Ini kekuatan kita as a MUSLIM. Rugi dapat anak istimewa tapi kita tak cari peluang dekatkan diri dgn Allah.

Sekian. Wassalam. I'm waiting for your call dear!

PERSATUAN AUTISM TERENGGANU

Saya dalam rangka mewujudkan PERSATUAN AUTISM TERENGGANU. Pada 18 Dis 2014 yang lepas, saya adakan satu perjumpaan bersama ahli Persatuan Autism Dungun untuk pertama kalinya, namun mungkin kerana masa yang kurang sesuai (musim cuti sekolah) , maka tidak ramai yang dapat hadir. Ini tidak membuat saya putus asa dan mengalah. Dalam usaha menzahirkan Pusat Pendidikan Anak-anak Autism Dungun, saya telah merangka program lain yang akan dijalankan pada 16 Februari 2015 juga di UiTM Dungun, namun keahlian Persatuan ini saya buka kepada semua yang berminat, terutamanya penduduk Terengganu. 

Jadi anda boleh sms kepada saya dgn  menaip AUTISM TERENGGANU jarak NAMA jarak ALAMAT E MAIL jarak NO IC DAN HANTAR KE 011-26451058 atau e mail gambar dan latarbelakang serta butiran anak ke tjlddn7@gmail.com. Perjumpaan ke-2 akan diadakan pada awal Februari InsyaAllah.