Understand and Managing Behavior

I owe my friends the update of this talk i went.. Some of us couldn't make it but dont worry and dont feel so bad, there will be other sessions next time, so let's hope we can meet up during next sessions ok!

*that's Puan Intan (red blouse) and Dr Hasnah

The talk is a monthly event organized by Makmal Autisme UKM, and this month, on Saturday 7th April, they invited Puan Intan Miranti from ANDI Initiative to give a talk on behavior management. We (my husband and i and the kids) had planned to head back to Rembau on that very day to visit  my parents-in-law. Since they provide child care for parents attending this talk (what a convienience!), me and my husband grabbed the chance to attend it. We had and have been  attending various training and theraphy sessions by hospitals and government bodies, but never this kind of seminars where parents are also involved.. and it was such an eye opener to us! I enjoyed every second of it.. even rasa sayang nak gi toilet! (nasib baik Intan asked whether we need a break or not)! haha.. she said she can go straight till 12.30.. (i believed her! she has such energy!) but luckily i got my much needed break to the loo without missing anything! :P

    

First thing she mentioned, she is very attached to what she's doing coz there is an emotional component to it.. that makes sense so much.. i straight away relates it to my cupcakes 'business'.. how i always have hard times rejecting orders.. how people who ordered from me have developed some kind of relationships to me.. because i so love what i'm doing... i tak boleh buat sambil lewa.. mmg rasa tak puas hati sampailah customer puas hati... i still remember ade sorang tu yg tarik muka masam sebab i lupe dia nak pick-up cpcks dia ptg (and i went somewhere else masa tu.. she called and terusla i rushing balik).. sedih teringat sampai sekarang sbb dia dtg ambik dgn muka masam, i dok apologize dia pun buat dunno jek.. well, we can't please everyone.. 

Well, here are some points I noted down from the talk. I'll share these with u..

1. We are surrounded by supportive people.. most of us do.. our husband, parents, friends and even strangers who share the same situation (eg FB group Autisme Malaysia-- pls join the group if u havent, there are so many things u can learn from others!)

2. Please remember that most of the times our kids are well-behaved. 

3. Behavior is voluntary. 

4. Too often behaviors are attributed to 'autism'. (up to a point we always blame autism for everything! remember, normal kids have tantrums too... normal kids are hyper too..)

5. Pay attention to what our kids are 'trying to say' by engaging in this behavior? (my problem is Faaeq hits me when i raise my voice or when other kids try to play with him, he'll push the kid. We're still trying to handle this.. not successful yet!)

6. Kids are so smart! They use escape behavior to get away with what they dont like/dont want to do.. the escape behavior can be very tricky... e.g. hugging, kissing you, showing affection.. then kita cair and gave in.. haha.. i think this is cute! Faaeq will kiss us if he wants anything.. then we'll give in and didnt prompt him to 'say' what he wants... hmmmm

7. For handling tantrums, there are 2 stategies;

    No 1: Reactive strategies - what u do immediately when your child is having a tantrum.

              Eg, mengamuk-  time out.

    No 2: Preventive strategies - what u do BEFORE the situation to prevent tantrum or meltdown. 

              Eg, promise him if he behaves at the bank, he'll get to go to his fav toys shop

                   (this might work for older kids)

              Eg, bring his fav toy/activity book/papers if he likes to color.. when in shoppping mall, take out one by one to make him busy. ( with faaeq, we train him to understand "ok.... finish.." so he knows it's time to go home or quit what he's doing.. he will get upset la kadang2 tp x teruk sgt dah sampai guling2 atas lantai.. dia akan start pukul2 kita (sikit2) la konon marah. His teacher at Nasom says the hitting might be because of his sensory issues, he does not intentionally do it to hit.. tapi x tau lah lagi... masih lagi try nak buang habit x elok dia nie... )  

8. Give them enough physical activies so they can channel out their energy. (there are many kinds of methods and approach.. eg. Higashi method)

Ni kat autism classroom UKM..

other kids are busy playing legos and puzzles.. faaeq sibuk main kat luar.. thank you cikgu yg jaga faaeq.. x sempat ty nama.. really apprecite it!

 I might miss out some points.. but hopefully one or two will at least give u some ideas of what to google for your further read. There are so much information on the net.. we'll have to know what to read to save us time.. coz we really dont have all the time in the world as we wish... ;)

Here's some ideas my mom shared on my FB Wall.. i think it's great!

More Things To Do Instead Of Turning On The TV :)

source

 

Take care ya.. and have a great weekend!

♥edi  

A Good Week!

I can see my feet!

Hello how are ya all doing? It's been pretty hectic for me this week coz Faaeq starts his school days at NASOM (National Autistic Society of Malaysia) and we have to adjust our schedule and get used to our new routine.. have to start our days as early as 6am (this is not so early for some pople, i know, but we usually wake up much later.. hehe). For me, i have to prepare food for Faaeq to bring (they dont provide food there), wake him up, bathe him, etc.. etc... with my husband's help, it's managable.. so far so good :) The biggest challenge i think is to get Imran on time coz the centre opens sharp at 7.30am (i usually reach there at 7.15, but hv to wait for a while) then rush to send imran to his school pulak! His school starts at 8am, and for this week, we usually will arrive 3-5 mins late. hmmm.... the tarffic is quite heavy along the way.. it's not that far (Setia Alam-Seksyen 7 Shah Alam) but i hate the trafffic! I wish my car comes with a 'kepak' button!  

So this is how the place looks like... many office lots are still empty coz the place is new, i think.. it's easy parking and clean environment.. the classroom is an open space where one teacher will attend  to only 3 students. It is more like individual attention and the teacher will do activities in accordance to what the child is capabale of doing.. for this week, i think they are still asssessing Faaeq.. to what extend he can do and what things they want to teach him first. From what his teacher told me, he can understand and follow simple intructions. And what he doesnt know, he'll learn after 2-3 attempts guided by the teacher. That's great! He is a bright child, I can see that he understands quite easily when i teach him, but he lost focus too soon! so, hopefully his focus will improve over time, by training and proper guides by his teachers here. And he needs to be toilet trained.. they will start doing that there.. i have tried to toilet train him and fail everytime! so it's really good if they start him at school and i follow the same method at home.   

Yesterday his teacher asked me to get him a set of color pencils and bind plain A4 papers for him to use.. just for conteng2 and coloring i think.. i got excited and even made a front cover for his papers.. hahaha... i hope the teachers wont laugh! (maknyer pulak yg excited).. i want him to recognize his book.. so i printed his photos on a paper i bought a looooongggg time ago.. i have to many colored papers and kertas yg comel2 mcm budak sekolah.. cant resist buying them at bookstores.. lepas tu simpan je x tau nak buat ape.. haha 

... and look at this sleepyhead.. abang Imran has been really great cooperating with our new routine.. all in all, it's really a great week for our family... today, the 5th day at school, i send off Faaeq after he gave me kisses on my cheeks and nose, he was smiling and walked straight into the class. Alhamdulillah...  

♥edi

Note: Tomorrow i'll be attending a talk by Puan Intan Miranti (ANDI INSTITUTE) at UKM Bangi. I'll just paste Dr Hasnah Toran's info from fb if you want to know more.. it's walk-in and pay at the entrace talk.. and the topic is not actually for parents with autistic kids je.. any parents struggling to understand and handle their kid's behavior will surely learn a thing or two :)

 

Rice Milk

This is going to be a quick note on Rice Milk..  for friends who emailed and texted me asking about Rice Milk i'm giving Faaeq, here are the photos of how the product looks like..

So far i've seen 2 types, I bought the one on the left (So Natural) at Cold Storage and the other one (Aussie Dream) is from Jusco (organic session). Both cost about rm14 (cant remember which is which, but one is rm13.90 and the other is rm12.90 kalau x silap). Since Faaeq seems to like the taste, (it actually tastes a bit like soya drink but very less sweet and plain..) so we decided to buy in bulk.. after all one box just lasts about 2-3 days je... habis! Jusco only stocks 2-3 packs on their shelf... i cant be going to jusco every week just to get these!

If you buy in bulk, the price for each 1-liter pack is about rm11.. I bought mine with Radiant Code Sdn Bhd (a wholeseller of organic food in Subang Jaya -- tq kak cuya!). u can go to their website and call their number. Specify u want to buy Rice Milk and ask them what is the minimum purchase. At first when i called, they told me they dont sell to individuals.. they only sell to companies and ask me to buy from jusco.. i said "kawan saya ada beli dgn u hari tu... bla bla bla..."  and last2 dia jual je.. . I bought November last year and the minimum box i have to buy were 4 boxes (each box contains 12 1-litre packs), so total rm500++ (cant remember the exact price). But they carry only Aussie Dream (Pure Harvest Brand).. the So Natural contains more Calcium and other nutrinets, so if u can, i think So Natural is a better option if your kid is a picky eater. Faaeq eats almost everything, so I'm not so worried about him, nutrient-wise. Just saying! 

Hope this helps!

Of this and that...

Ade masalah sikitla.. masalah malas.... hehe... so meh layan gambar jelah ekkk...

Imran with his new guitar.. march start kelas gitar dia.. before this dia belajar piano.. kat s9 ade kelas music, area McD s9 tu, Mahagony... situ ade byk cikgu2 ajar mcm2 music instruments.. boleh pilih la.. dulu masa imran nak start, dia nak belajar guitar sebenarnya.. bila try, cikgu dia kata jari dia kecik sgt and tak sesuai.. so dia suggest start dengan piano dulu... after about 2 years piano, dia dah kenal notes and boleh main la kalau tgk note music with both hands.. kire ok lah kan sbb belajar pun main2 je... this year dia dah std 2 so dah boleh pegang guitar yg 3/4 size tu... march ni start kelas.. he can't wait!

Ni budak bucuk main wooden beads kat OT HUKM.. skrg ni faaeq dah boleh duduk kat meja and concentrate... kat rumah pun dia ade meja so dia dah agak biasa kalau nak buat kerja kena duduk kat meja.. we all tgh nak ajar dia ABC.. lines and shapes dia boleh trace dah.. lines dia tau buat.. circles pun tau.. other shapes kena paksa2 sket dia buat... alphabets dia boleh follow the dots.. for me dah good enough improvement dia... compared to dulu, mmg taknak langsung buat ape2...

Ni pun kat HUKM last wednesday.. kat Sensory Room.. faaeq sgt suke bilik nie sebab ade lampu gerak2, kapet pun ade lampu, pastu ade soothing music, ade aromatheraphy, and ade bubbles tu yg boleh tukar colors.. ibu pon suke.. boley tido dok sini lama2.. haha

dia dah boleh color gambar instead of just conteng.. ade purpose.. kalau dia start color kaki, kaki je dia color dulu.. then baru color parts lain... comel kan tangan dia? hehe

gambar ni dah edit la of coz.. and perasan tak angle dr atas utk nampak kurus.. hahahahaha... muke sebenarnya mengalami masalah pimples yg teruk.. dermalogica sume dah takde effect dah kalau hormon mcm ni.. it's ok lah.. lepas bersalin harap2 licin balik muka ku... hahahahaha...

Have a good weekend.. we'll be heading to Rembau tomorrow morning.. take care friends!

♥edi

Autism Vocabulary

Today I learn a new word - 'stimming'

Lately Faaeq mmg susah nak tidur.. susah maksud saya, dia akan susah nak diam and lelapkan diri... lampu dah lama tutup pun dia still nak lompat dan jerit2 sambil tergelak-gelak... mmg ni typical autistic behavior.. 'laughing excessively'... dulu masa mula2 dia gelak2 camni kitorg mmg jadi takut.. ingatkan dia kena 'kacau' ke ape kan... so adelah kitorg usahan pergi mintak air doa dengan Darul Syifa' (Bangi) dan alhamdulillah sebenarnya berkesan jugak untuk menjadikan dia tenang sikit.. saya percaya, bacaan ayat2 al-quran dan doa mmg berkesan untuk anak2.. itu pasti..sedangkan untuk kita yg 'tua' ni pun kalau kita amalkan, terbukti berkesan kan..   

Ade a few yg email sy ttg autism nie.. sebenarnya sy pun tak banyak pengetahuan ttg autism.. masih banyak mencari jawapan dan banyak persoalan.. yg saya boleh share, mcm mana sy 'detect' faaeq ni autistic, dan apa yg saya buat untuk mendapatkan bantuan dr hospital.. selain terapi2 'formal' yg saya bawa faaeq di hospital, ada juga kaedah2 'alternatif' yg kami cuba utk faaeq.. semua yang saya dan suami mampu, kitorg akan cuba.. terima kasih kpd semua yg berikan saya cadangan dan nasihat.. tak terbalas rasanya...

Mmg susah nak diagnose betul ke tak budak tu autism ataupun tu mmg 'perangai' dia.. sebenarnya sekarang ni ramai ibubapa yg cepat nak labelkan anak dia autism kalau dia hyper, ataupun lambat bercakap.. what i can say is trust yr insticts and read a lot... skrg ni mudah, ade internet semua info di hujung jari je.. cuma kena pandai pilih info yg sesuai.. kdg2 kita bw anak ke doktor untuk dapatkan jawapan, tp doktor pun tak dapat memberikan jawapan yg pasti kpd kita.. sebab saya rase doktor pun susah nak memberikan 'label' kpd anak kita sebenarnya... silap label, naye dia.. kan? hehe..

Utk yg masih tercari2 jawapan, ni ade a few symptoms yg boleh dijadikan guideline.. taken here.

ASD (Autism Spectrum Disorder)  varies widely in severity and symptoms and may go unrecognized, especially in mildly affected children.

Very early indicators that require evaluation by an expert include: (i note faaeq's development)
1. no babbling or pointing by age 1 (faaeq was babbling but no pointing)
2. no single words by 16 months or two-word phrases by age 2 (he used to say 'bu' for ibu, can wave goodbye, said 'akit' when he fell but it all sort of 'lost' when he grows older)
3. no response to name (yes)
4. loss of language or social skills (yup, he 'lost' his social skill)
5. poor eye contact (yes)
6. excessive lining up of toys or objects (faaeq shows this at a later stage, when he was about 2YO but just for a short period of time)
7. no smiling or social responsiveness. (faaeq is always smiling!)

Later indicators include:
1. impaired ability to make friends with peers
2. impaired ability to initiate or sustain a conversation with others
3. absence or impairment of imaginative and social play
4. stereotyped, repetitive, or unusual use of language
5. restricted patterns of interest that are abnormal in intensity or focus
6. preoccupation with certain objects or subjects
7. inflexible adherence to specific routines or rituals.
*faaeq has almost all of the above symptoms.. erkkk!

At earlier stage , mmg faaeq mcm budak2 lain.. sama je.. but since dia ada abang, we sort of compare him (his development) with imran.. itu yg mula syak something wrong.. we have been to several doctors who dissmiss anything wrong with him, saying he might be 'just' a lil bit late.. well..

Wookeh, about that stimming... told you he has difficulities sleeping kan.. one thing he'll do before he sleeps, he'll make noises non-stop! imagine at 12midnite, he's still 'talking to himself'.. making all sorts of noise.. we were already so tired and sleepy, so tak larat nak layan dia!... turned out that is called 'stimming'.. look at the definition;

“Stimming” (v) or “Stim” (n): behaviors that are self-stimulatory/stimulate one’s senses. Some “stims” may serve a regulatory function (calming, increasing concentration, or shutting out an overwhelming sound), such as waving a string, talking to self, or humming.


There are so many verbs, nouns and adjectives to describe their behaviors, to know more, read this link.

Pretty interesting huh? At least for me, mmg menarik :)
Now i know why he makes those sounds.. just to calm himself.. sian dia :(

he used to be obsessed with ultraman. that was his arragements..

kalau ubah, siapla dia ngamuk. and he likes to 'feel' the plasticine.

I have to go. imran's been bugging me to create a facebook account for him!


♥edi

Good luck from Tokio Hotel

Puan Nora ordered this for her daughter who's sitting for her SPM... peminat tegar 'Tokio Hotel', a band group.. i never heard of this group.. i guess i dah ketinggalan zaman la.. hahahaha... anyway, sportinglah Kak Nora! Dia suruh buat as tho band tu yg wish good luck! :) Thanks Kak nora for yr order.

Some photos taken at a park in Cyberjaya last week.. nice place, nice playground.. when faaeq was lying on the ground people look at me like i'm a bad mom... well, who cares... i dont care.. they dont know faaeq is autistic.. he likes rough surfaces. he sure has sensory issues big time! the other day he painted all his fingernails red! and last night, blue! adussss... mcm pakai cat kuku.. pengsan ibu!

Hayya....

Of Park, PECS and GFCF

Yesterday was Faaeq's appoinment with his speech therapist at HUKM. We reached quite early, so my husband stopped at the park nearby, Tasik Permaisuri Cheras Playground. It is such a lovely place.. I was impressed with the extended version of the play area.. the swing, the climb, the hanging bridge... it's almost the same as Occupational Therapy's room, only larger! Much much bigger lah... best! Faaeq macam rambang mata nak main mana satu.. I especially love the swing.. Back when we were in Sydney, almost all parks there have this kind of swing... it covers 'around' the body instead of just a flat piece of rubber for the bum! hehe... I tried to put Faaeq in it.. he was hesitant at first.. macam takut je... and when i swing it, lagi ler dia takut.. he wanted to get out of it but i ignored. but after a while he seems to like it.. but still, he was not comfortable to have the strap all around his body... bila angkat dia keluar, dia mcm nak naik lagi.. tapi lari lari... ade budak lain nak naik, marah pulak... macam buai tu dia punye :P

Wei Li (Faaeq's speech therapist at HUKM) tried once again a technique called PECS (Picture Exchange Communication System). PECS is basically a way to communicate, or an aid to communicate thru pictures. A simple explaination would be Faaeq's case lah... Faaeq tak boleh cakap lagi kan.. xde speech.. so saya akan sediakan beberapa gambar (botol susu, mandi, air, dll).. bila dia nak minum susu, dia akan ambil gambar botol susu and bagi saya.. so saya faham lah yg dia nak susu :) Mmg macam simple, tp susah sebenarnya nak 'fahamkan' dia konsep yang 'dia kena bagi gambar baru dapat bende yg dia nak'.. tapi once dia tau, mcm2 gambar kita boleh sediakan, and dia tinggal pilih je gambar mana mengikut keperluan dia.. Kalau dia dapat konsep ni, at least dia takkan rase 'frustrated' kalau tak dapat ape yg dia nak.. thus reducing his tantrums and we can attend to his needs exactly as what he wants... My aim, nak toilet train Faaeq.. so once dia dah faham konsep ni, saya akan sediakan gambar toilet, so kalau dia nak kencing ke po-po ke, bagi je gambar pd saya... 

Mungkin ade yang rase cara ni akan membuatkan dia lagi 'taknak bercakap'... Sebenarnya tak.. in fact, ia akan menggalakkan lagi.. bukanlah kita main tukar2 gambar je.. masa dia hulur tu, kena juga kita cakap ape yg berkaitan... lama2 dia akan keluarkan juga words tu.. :)

Sebelum ni sebenarnya Faaeq dah di ajar.. tp dia tak faham... seingat sy ade 2 kali  sessi speech theraphy Wei Li buat untuk PECS ni.. tapi tak boleh jugak.. sy pun (masa tu) rase Faaeq masih belum bersedia... sekarang, yes, he's ready! In fact, session semalam berjalan dengan jayanya! Mula2 main bubbles.. kalau Faaeq nak Wei Li tiup bubbles, dia kena bagi gambar bubbles pd Wei Li.. mula2 dia tak faham.. tp selepas bebarapa kali ajar dia, terus dia faham dah! YAY!  Wei Li tunjuk toys, Faaeq nak toys, Faaeq bagi gambar toy, Wei Li bagi toys tu pd Faaeq! YAY!

So sekarang, nak kena sediakan gambar2 utk Faaeq... First 2 pictures would be his milk bottle and bathroom.. (sebab dia suke sgt nak mandi.. balik rumah je nak mandi.. ) Lepas ni, nak mandi je kena bagi card tu utk cakap 'nak mandi'.. then kena fikir lagi apa gambar2 yg sesuai.. gambar 'makan nasi' pun ok kot.. sekarang ni, kalau nak ape2 dia cuma buat bising.. atau tarik tangan ke tpt yg dia nak..  

Lately Faaeq mcm dah boleh dengar arahan.. saya ajar dia buang diaper dia dlm bakul sampah, sekarang dia dah boleh buat sendiri.. bila nak mandi, buka baju, seluar, buka diaper, then dia akan buang dlm tong sampah. YAY! (tapi kdg2 kena marah jugakla baru buang.. sambil meloncat loncat!) So.. i think he's ready for PECS. 

.. and i think he is more responsive because of the GFCF diet. Even his teachers noticed it and told me he listens to instructions and seems to understand what they're saying.. (compared to before.. buang dunno je...) It's been almost 2 months now... ade jugak yang 'terbabas'.. hari tu Faaeq 'ditangkap' sedang menjilat chocolate dlm fridge! hahaha... last week, dia sempat habiskan separuh RotiBoy sebelum abang dia perasan.. tapi lepas tu.. tergelak2 and terlompat2 non-stop.. bila tengok dia mcm tu, sy rasa kesian dan lagi kuat semangat nak teruskan diet ni.. banyak kali dah nak give up sebenarnyer... itu cerita entry lain lah!

  
Ok, till then, Salam Aidiladha.. Order ditutup rapat sampai lepas raya haji.. mlm ni banyak kena buat cupcks.. RV, DFCC and carrot cakes.. and tomorrow is Faaeq's birthday! Alhamdulillah... 

Thanks Shafina.. a surprise birthday gift for her friend Alin :)

♥edi

Lazy Friday

I managed to make a set of cupcakes for Imran's Mualimahs (teachers) last night.... went to his school to pay his school monthly fees, gave the cupcakes to the clerk and ask her to pass to Imran's teachers. They are having some games at the dewan coz today is "Ko-ko day".. Yesterday my husband showed me an sms by his teacher, "Salam.. Kak, tahniah ye. Imran dah naik al-quran.. =)" Terharu...

  

I often write about Faaeq here but Imran is my fav son too :) He is 7 this year, an active boy and very intelligent... an origami fanatic, still.. loves to listen to my bedtime stories and learn very quickly if i teach him anything. He asks too many questions sometimes! I know he'll grow up to be a good person.. i can see he is very kind-hearted... cuma kdg2 mmg la nakal, biaselah tu budak2 kan.. :D 

I forgot to bring my cables to connect the card reader to my comp... so no cupcakes photos today.. hehe... last night i made a red velvet cake too, for an order by Farah.. pictures later :) seeing the cake makes me crave for RV pulak dahhh... hmm....

And last night too, my friend (originally we know thru blogs and fb) came to my house.. saje jln2.. since she was in town for the long Divali hols.. (she stays in JB)... Syida of http://www.warkahdarimama.blogspot.com/. Her second child, Abil has autism.. Abil is 8 years old.. When i found out about Faaeq and wrote it here, she commented and ask me whether i was a mutual friend with Sharzila, my dear friend whom i know since college.. so we exchanged emails and sms, and now it seems like we're old friends already :) Syida is dear to me coz i really relate to her stories about Abil.. she takes time to write and share her experience.. i really appreciate that. I can see so much similarities between Abil and Faaeq.. sama je... sampai2 je terus naik tangga, and later terjun dr tangga ke sofa. hahaa... mmg itu ler kerja faaeq hari2... :P

So girls.. have a great weekend, i'll be in Rembau for a birthday party. Tonite i'm baking devil's food choc cake and maybe... just maybe.... a rainbow cake? recipe dah tampal kat pintu fridge cuma x tau sempat ke tak la.. hehe..

have fun!

♥edi

The many stories of my life..

I have to much to tell, i dont know where to start!

This is Faaeq. He is a child with autism. He's doing great but his mom (and dad) sometimes cant help but wonder whether or not he can face the world all by himself...

As I mentioned before, we started a GFCF diet for Faaeq... Although the diet is not proven to work on all kids with autism, we're positive it is a good thing to try..we want to give it a shot. Autism is a spectrum, meaning it is very broad in the sense of how it affects the child and how the child responds to treatment. No one single treatment or therapy works for every child. That's the trick.. that's why it is up to the parents to actually figure out what is best for their child.. The same basic principle also applies to every normal child. I mean when it comes to parenting, we know what is best for our child and we do our best and make the best out of every situation.. bringing up a child to become a human being with compassion and integrity is not an easy thing to do! I'm sure all moms out there will agree with me on this!

During the first week of the diet, Faaeq's teachers at his taska told me it is easier to put him for his afternoon nap. At home, I noticed he is more playful, more eye contact (this is definately true way before we started this diet) and make more sounds than usual. Still no specific word yet.

Second week, he started humming! He was making sounds as though he is singing! Tapi tak fahamla ape dia nyanyi... but definately it is a song.. I'm guessing it's Adele's.. but.. yeah.. who knows!?

He is eating well and drinking his Rice Milk. I bought some supplements (Fish oil, Multivits) to cover whatever vitamins he's lacking, altho actually i think he is having enough with all the food he's taking. He eats chicken, loves salmon, tenggiri goreng, eggs, carrot... I'm still trying to force him to eat his greens.. still dia akan keluarkan walaupun ade sikittt je sawi dlm nasi dia.. urghhh.... he takes fruits, almost all kinds, grapes, apples, pears.. so.. i guess it's sufficient! I'm no dietition or an expert on this, i'm still learning and reading a lot about proper nutritients.. This diet means i have to eliminate all gluten which comes mainly in wheat (gandum).. if u go to supermarkets and look for food without gluten in the "biscuits/crackers aisle, i'm sure u'll find NONE! semua tak boleh makan.. either it has wheat powder, or worse, MSG. Mula2 mmg sedih... I cant buy all his fav biscuits anymore... Bye bye Pringles, Oreo, Biskut Tiger, Yoss etc etc... seriously, i was FRUSTATED! ape ni semua takleh makan? ape dia nak makan?

Then I realised, almost all of that are junk food! Pringles, Mr Potato, twisties..all contains MSG and if you notice, the mg is quite high! Mula2 mmg kitorg pun kasik je dia makan Jackel (the potato chips) sebab dlm byk2 potato chips, yg tu je takde wheat starch. They use potato starch... then later, i realised, it is very high in salt and MSG. Dahhhh takleh makan... Frust lagi :( It takes some time for Faaeq to adjust too... kat rumah dahler byk biskut... kesian dia.. ambik biskut dlm packet nak suruh buka... imagine.

But now he munches on fruits and drink juices. and because he doesnt take snacks, he eats a lot during mealtimes. A LOT of rice, i'm telling you. He eats more than me!

So far we're happy with the diet. We're still hoping we could see more positive improvements.

I told you before that he is having trouble sleeping at night. That's because now, we limit only 2 bottles of milk before he sleeps.. for the sake of his beautiful teeth (what's left after the hospital event, haha) we want to wean him off the bottle.. he doesnt need it anymore actually.. he knows how to drink from cups. In fact he can take his own water from the container and drink. His milk bottles are just for soothing him to sleep.. like teddy bears la.. ade budak peluk teddy bear, dia ni nak minum botol sampai la dia tido.. sampai 3-4 botol minum before tido, ape nyer.... pastu terbocor atas tilam hari2... :P               

 My baby sleeping in my mom's crochet blanket. I love this photo so much!

A self portrait of him.. haha.. i think he took this photo himself. so cute kan?

I just love instagr.am. I look forward to my friends entry everyday. For iphone, download it free and find me there ok! I'm Edi Cakeworm.. or whatever.. haha

Ok, cupcakes pulak :D

in progress..

 My neighbor Kak Lin ordered this (again).. she wanted the same design i did before, just with different colors- dark pink and peach. Nice! Love both colors!

Till then, have a good break, drive safe, dont show show fingers to other drivers aaa....

Most important, please be...

♥edi

When i'm feeling blue...

.. dah lama peram gambar nie... Tq my cousin Ina! buy 1 free 1 lah cake nie. hehe

Happy 1st birthday Haziq Al-Amsyar!

and some cpcks to go with the cakes. nothing fancy.. but i somehow love the stars! i think i'll do stars for faaeq's birthday too! he'll be 4 in november!

T

Tq Kak Ilah for this order. These were delivered this morning for Laiqa's 4th birthday! I remember i did her 3rd birthday cupcakes last year.. I was in a hurry so the photo was taken with my camera phone. Angry birds and pink swirls.

My son Imran's remark: Ibu, tak sangka ibu pandai lukis angry bird! *haha

Muke mengantuk bangun sahur. Bangun2 terus ke dapur pastu duduk atas meja, tunggu org makan. Pastu ikut masuk tidur semula. lawak betulla si poik* ni!
*nama manja Faaeq. nama2 manja lain ialah; Che Po, Po, Poyikkkk dan Paul. ehem.

Yesterday me and husband went to Pusat Kebajikan Masyarakat at Banting Selangor to request for an OKU card for Faaeq. It was long overdue, the hospital gave us the form last year, somehow we didnt put it as a priority to get the card until our last appmt at CDC (Child Dev Center HUKM). We went there last week. The doctor asked us why we havent registered yet, and we just couldnt give her an answer. (Dlm hati, ingatkan tak perlu?) Apparently, it is important to have the card if we want to send Faaeq to a special school, or to enroll him to a government's EIP (Early Intervention Program) and such. My husband went to Sepang's Pusat Kebajikan but they asked us to go to Banting since our address is within Banting's district. Off we went, the drive was about 45 mins from shah alam (jauhhhhhh). My husband has ensured that he completed and brought all the necessary items (photos, ic copies etc) according to the checklist on the form, given by the hospital.

We were attended by a friendly and helpful staff, and after checking all the documents, she noted that the form is the older version of what they have now. Fortunately, the only difference (according to another officer) is the photograph slot on the right hand side of the form, so they accepted it anyway. BUT, the new form also has a new checklist, and one item they added to the form is ELECTRICITY/UTILITY  BILL.. which has to be brought together and submitted for them to confirm the address. Danggg!!! we didn't have any! and the thought of having to come back to the office (which is VERY far  from our home) really got me frusttrated.

Then i remembered, there was an old electricity bill somewhere in the car, but the address was our previous house which was our rental house. Alhamdulillah the officer said she can accept that and noted on the form, that is was our rented hs and that we will be at our new address as written on the form. PHEW!!!! The hospital should have updated their forms (or the Jab Kebajikan kot.. should have) but either way, pls note that u have to bring yr bills if in case u're going to get that card. The card will be ready in a few months time, coz it has to be endorsed by the Pengarah..

The whole day yesterday after we went there, I felt low. I felt helpless. I had a bad dream last night.

But today, I got my strength back to help faaeq.
Thank you kak cuya, kak afiza and syida.  

I'll take baby steps to start a GFCF diet for faaeq. Bismillahirrahmanirrahim...

Have a great day and drive safe!

♥edi

Long Sleeves and long pants.. or so long!

Having an autistic child opens up a whole new perspective towards children behaviors for me. Looking at each child is never the same again.. when i saw a child throwing tantrums, i dont judge the parents for not being able to handle the situtiation. In fact, do you think if we do really know how to handle a situation with a child? They seem to have their mind and the world of their own, autistic or not. Sometimes i question myself, maybe I am too, the autistic one!

Faaeq is really obsessed with long sleeved shirt and long pants now. When he is home in the evening, the first thing he'll do is to take off his shorts, and struggling to take off his sleeveless top or short sleeved shirt, and find a fully covered clothes. Last Saturday, after he took his morning bath, he was really mad at me for putting on him shorts and sleeveless.. mengamuk2 sampai lah dia jumpa balik baju tidur dia dlm bakul baju kotor, and pakai semula baju tidur tu! haih. I guess he doenst like the feeling of exposed legs and arms.. the trick to get him to wear them is to let him run around in his diapers dulu lah kot...

Autistic kids seems to be extreme with sensory. And now faaeq makes so much noise humming and babling and mumbling.. he wont stop 'talking'... in his own language that is! and i read somewhere that making 'noise' is some kind of self preservation technique for an autistic child. It means when he hums and makes sounds, the outside noises and distractions can't get in. Logic. He used to cover his ears when he hears certain sounds that he doesnt like. Kdg2 lagu, kdg2 bunyik burung, kdg2 bunyi motor...

 ni time ibu nyanyikan lagu Adele kat dia. Ok la... suara ibu tak sedap eh! Grrrr...

Also, i've read a real life experience told by an autistic person (he's an adult now and giving talks on his experience when he was small and having to deal with everyday challeges that ordinary people wont understand).. he said when he was small, he hated haircuts coz it was really painful for him! The sound of the machine, the hair fall, everything about the  haircut made him in pain.. he couldnt explain why he felt that way.. maybe it was sensory overload.. i dont know.. but that explains why faaeq will scream his lung out whenever he has his haircut. Maybe. Who knows what he's going thru. That explains why we let his hair grow long and try to minimize the haircut sessions for him. Besides, he looks so cute with long hair, kan? kehkehkeh

At Rembau. He can climb the tress, run here and there, play with sand, smoke.. i let him be. takpelah lepas tu boleh mandi.  

So I guess for the time being we just hv to deal with his latest obsession-  baju lengan panjang and seluar panjang. Bagus jugak, nyamuk tak gigit.. stylo puna de gak kot.. haha

he put his puzzle pieces in the basket and couldnt find them among the clothes :P

Autism. Ya gotta love it.

Till then, have a great day u ols!

♥edi

    

My Faaeq

Macam mana dia panjat sampai atas tu? hehehe... yang ni, ade pertolongan dr ayah dia... bukan dia panjat sendiri... tapi Faaeq ni mmg suke berada di tpt tinggi.. tak taulah kalau 'berada di tpt tinggi' tu salah satu ciri2 autism.. hm... tp saya rase ade jugak faktor dr segi makna nama dia "Faaeq", maksudnya 'Yang Tinggi Kedudukannya"... hmm.. wallahualam..

Tapi di mmg seronok kalau boleh buat aktiviti2 lasak... kalau tempat tu selamat dan tak bahaya (contoh, jauh dari trafik), mmg tak kisah dia nak memanjat, berlari dan buat je ape yg dia nak.. paling OK, kalau abang dia ade dan di main sama2... bagus sebab ade interactions.. tp abg pun ikut mood jugak.. kalau time dia rajin, mmg seronok tengok dia main sama2.. kalau time tak ok, gaduh sampai dua2 nangis!

Faaeq masih ke HUKM untuk sessi terapi (speech and  occupational theraphy).. compare dengan Putrajaya Hosp, kat HUKM mmg much better... dr segi therapist di HUKM, lebih bersedia dan ade mcm2 aktiviti yg dah difikirkan utk faaeq be4 faaeq dtg... kalau kat PH.. hmm... kdg2 rase mcm buang masa pergi.. walaupun HUKM jauh, kitorg tak kisah sebab most of his improvements (or all!) Faaeq dapat dr sessi di HUKM.

Terbaru, Faaeq boleh hulurkan tangan bile dia nak minta sesuatu... bukan senang nak bagi di faham yang dia kena 'minta' untuk dptkan sesuatu.. be4 this dia akan tarik tangan kita utk nak minta apa2.. nak susu, tarik tangan dan bwk ke tpt buat susu.. ataupun ambil botol kosong, bubuh kat tangan, pastu buat dekkkkkk je dgn harapan kita faham maksud dia nak susu. Mmgla faham.. tp bukan itu cara nak minta.. mcm mana nak ajar? After satu sessi speech theraphy di HUKM, dia dah dpt konsep tu! Balik rumah, kitorg apply masa dia nak minta susu, atau mintak apa2 je.. so sekarang, bila dia nak something, susu especially, dia sendiri akan hulur tangan dan tadah tangan dia sebagai sign language dia nak bende tu... YAY!

Termenung tengok hujan... ni pun fav spot dia.. atas bonet motor ayah :)

Sekarang kitorg pergi sessi evaluation di Jabatan Psikologi Perubatan UKM di KL. Tpt ni mmg khas utk mcm2 masalah perkembangan kanak2 dan dewasa... appmt kat sini dpt from Hosp Putrajaya sebab tak ada Child Psichologist di Hosp Putrajaya.. Sebenarnya Faaeq dah di evaluate di HUKM dulu.. oleh child psikologist.. dia kata Faaeq punya tahap autism ialah 'medium'... ASD with Hyperactivity... Tapi... setelah sessi di Jabatan Psikologi Perubatan ni (kitorg saje pergi lagi sebab nak dpt 2nd opinion.. lgpun Faaeq punya 1st evaluation dah setahun dulu.. ).. Doc kata Faaeq mungkin berada di tahap 'severe'.. apa2 pun results and report belum dpt lagi.. so tunggu yg tu dulu utk confirmkan...

bayangkan mcm mana saya rasa, bile dengar perkataan 'severe' tu...

Tak kisahla.. bagi saya, Faaeq is special in his own way.. severe or mild is just a label. I know him. He is tough to handle but he has so much to offer... LOVE especially... the other day he kissed my cheek spontaneously and looked me straight in the eyes right after. Almost menitik airmata.. dia pun mcm confuse dengan apa yg dia buat lepas tu... but I know the kiss was sincere, I take it as a thank you gesture from him, for just loving him the way he is.

Ahh.. miss pulak kat dia..