First Music Class - A Disaster

i have been reading Rhianna's Cochlear Implant journey and i'm amazed at Yanti's (her mom) effort to get Rhianna to hear better. After Rhianna was diagnosed with her hearing loss, she got he cochlear implant. Yanti took a long time off work to intensively care for Rhianna. She signed her up for music and reading class, and actively went for playgroups/seminars.

i decided to enroll Afif into a music class for toddler too.

We initially went for a trial class. Us being us, we got there half an hour late. Afif being Afif, he was so amazed at a new place and busy exploring. Instead of joining in with the teacher and other kids dancing and singing, he went to bang on the wall, tried to open drawers, and busy pushing buttons at power outlet.

Totally not what i expected.

The teacher assured us that it's common for newcomers to be like that. Busy exploring and not joining in. i felt a bit better. So we signed up for the class.

Last  Saturday we went for the first class. Got there half an hour early, at the teacher's advice. Afif, as usual, busy running in the mall, went up and down the escalators (my brother and i took turn to watch him). 

At 3pm, the class started and Afif has gotten a little cranky. i guess he was tired from all the running and climbing. Again, he refused to cooperate and join the crowd. He followed instruction when he feels like it but most of the time he'd just do his own stuff. 

The teacher gave a pair of bells. He just played with it for a while and then threw it on the floor. When i picked it up, he'd cry and want it back and then proceeded to throw it on the floor. The same with plastic mirror. More throwing and crying. A couple of times, he laid on the floor and bang his head on the floor. That's the first time he did that!

It was chaotic. Music playing, 5 toddlers with parents dancing around and there i was, desperately trying to calm my child and getting him to join the fun. 

i was so depressed. What happened to my fun loving boy? My singing and dancing boy? The other parents looked at us like we're aliens. i could feel them judging me- a bad parent.

At the end of the class, the teacher told me to sign Afif up for a sign language class. She said that he can't tell me what he wants, that's why he's so angry. i felt so humiliated, especially as she done that in front of other parents. 

YES, my child is deaf. i want him to hear and speak that's why i sent him to a music class. If i want him to sign, i would've taught him sign language without you telling me to. Besides, i know he wanted milk but would you like it if i breasfeed right then and there in the class with fathers watching? Instead of saying that to her face, i kept quiet and left.

Sigh.

If it's up to me, i would never want to go back. But we paid for a semester of music class and the money would've gone to waste. We'll see how it goes next week.

Ee-Aii-Ee-Aii-Ohh

Afif will be 19 month tomorrow.

His hearing age is around 9 months.

As usual he babbles a lot. Lately he always say eyaiyaiyaii. At first i did not know what he's saying. One day, we were watching some nursery rhyme videos on YouTube and Old Macdonald song came up. He sang along and say eyaiieyaiiyaiii..

He was singing ee-aii-ee-aii-ohh all along!

Obviously without the ohh part.

Nevertheless i am so happy. That's a progress!

He also sings along a few other songs. He sings in tune which is great but no clear words yet.

He loves singing Twinkle Little Star, Itsy Bitsy Spider, Wheels on The Bus, Old Macdonald, and Head, Shoulders, knees and Toes to name a few. How do i know he's singing these? Because he made different movements with different songs. Spinning wheels, starry fingers, spidey fingers and touching his knees and toes. 

Can't wait to hear the next words that will come out from his mouth ;)

 9 hours road trip to Kota Bharu, Kelantan.

Distracted him with drawing blocks, toys and the iPad.

Took off his hearing aids as the car seat causes feedback and whistling.

Playing with his lil Aunty Delisha

Pregnancy and Labor

Just like any other couple, Idzwan and i are two people in love. 5 years in relationship and we decided to get married.

Two months into marriage, we found out that i'm pregnant. As new parents, the usual mix of emotions were there. Happy, confused, ecstatic, anxious, excited.. All at the same time. i went through rounds of morning day and night sickness. Nothing i can't handle.

Viral Fever

At 8 weeks of pregnancy, i got a high fever with rashes all over my body and was hospitalized for 4 days. Turned out it was viral fever. The entire time, all i can think of was my baby. Please let my baby be okay. Please let my baby live. Please let my baby survive. Please, no harm on my baby. Ultrasound shows that my baby is very much alive and kicking. The obstretician assured me that the baby is okay. Not to worry. It was a relief.

Thankfully the rest of 7 months of pregnancy went smoothly. Monthly ultrasound scan and bloodworks show that my baby is thriving and healthy.

Labor Story

Week 36 of pregnancy, i was bleeding. Was taken to the labor room and it is found that i'm having irregular contraction. i truly thought i was going to deliver my baby boy on that day. i was given two steroid shots to mature the baby's lungs as the baby is not full term. After 3 days of hospitalization and being observed, i was sent home. Baby is not ready to come out yet.

At 37 weeks, my water broke at 3am. At 10am, i am still 2cm dialated and baby's heart beat began to decrease. Doctor decided we can not wait any longer and i had an emergency c-section. It turned out that the umbilical cord was short, making the baby unable to descend.

Afif Haiqal was born on 11 October 2012. Truly one of the happiest moments in our life.

Now, the reason i share Afif's birth story is to see if there's a connection between my pragnancy/labor with his hearing loss. 

The doctors suspect that the  viral fever that i had at 2 months pregnancy is the culprit. At 2 months, baby's organs are developing. An infection at that time could interrupt the process. If that's the case, we're thankful it's only his ears that are not properly developed. It could've been something more serious like his brain or heart.

Or it could've been during birth itself. As i mentioned, the umbilical cord was so short that it almost broke. The lack of oxygen supply could've been another reason to his deafness. 

Anyway these are just my theories.

Introduction

Assalammua'laikum and Hello!

This blog is dedicated to our firstborn son, Afif Haiqal.

Afif was born on a bright Wednesday morning (on 11th October 2012 to be exact) via Ceasarean section after a dramatic false alarm. He entered this world screaming and ready to pounce.

On his third day on Earth, he failed his newborn hearing test. We were told not to worry as it is normal for C-sect babies to fail his/her newborn hearing test as the amniotic fluid tend to still be in his/her ears and nose long after birth. The ears will be ok after a few months, they said. So we did not think much about it.

At around one month old, he failed the test again.

And again.

And again..

We came back for a few more test. ABR, sedated ABR, tympanometry..

All tests and check-ups bore the same result; our son has moderate to severe hearing loss.

As parents with normal hearing with no family history of anyone being born deaf, we were taken aback.
Puzzled.
Confused.
Sad.
Mad.

Why is this happening to our perfect baby?

Why our baby?

We were in denial.

He babbles and coo a lot. He talked back when we talk to him. He CAN NOT be deaf.

We went months trying to prove the test results wrong.

We went to seek second opinion at another hospital.

Still the same result. Afif has moderate-severe hearing loss.

And we can't prove the test results wrong either.

He would not respond to me calling him from behind. He would not flinch at the sound of thunder.

Though hard, we finally accepted that our son is hearing impaired.

Not deaf, just hard of hearing.

At 9 months, he got his hearing aids.

And thankfully (Alhamdulillah) he began to show hearing behavior.

That's why this blog exist.

This blog is dedicated to Afif Haiqal. So that one day he'll be able to re-live the journey, know the effort, the path we chose, the things that we do for him, with him.

So that he knows, he is perfect in his imperfection.

i also hope this blog will be a companion for parents of deaf or hard of hearing children. All the wikis and medical websites can give you information, but i find that reading other parents' experience more of a help. i hope this blog is good enough to be a reference for you.

Please know that you're not alone.

Our children will be okay.

New Friend

The past week has been a bit of emotional whirlwind for me.

Having blessed with a hearing impaired child, i'm never at ease. Most days are fine. Some days i'm in despair, panic attack, guilt.. i worry a lot. i have so many questions.

When will Afif talk?
What if Afif can't talk?
Will his future be okay?
Can he make friends?
Can he go to normal school?

More questions than i (or even his therapist) could answer.

The hardest thing is not having or knowing anyone else that have the same experience.

i missed Afif's last speech therapy because i had to present in a meeting. i never missed it and God did i feel guilty. Mr. Chenta took him for therapy and he is amazing but you know it's different when you are not there.

Because i'm such a control freak, i emailed his therapist. i can't rest not getting information first hand. Asking this and that. i hope she doesn't find me too bossy and nosey. My prayer has been answered when she gave me a contact number of a mom with a hearing impaired daughter.

It's just what i need.

Someone who was there, went through what i go through.
Someone who can share what she did. How she did it.
Someone who understands.

We got in touch recently. Alhamdulillah for this new friend.

She said it ain't easy.
She took time off work in the critical years.
She went for seminars/talks/classes. She sent the daughter (who was 2-4 years at that time) to music class, writing class, and various therapies.
She put of having another baby until the daughter is 6 years old.
But now, she said, it's worth it. The daughter is 7 years old and speaking and hearing well.

i'm so amazed at her effort.
i never thought of music class nor writing class for Afif (for God's sake, he's not even 2!)
i never went for talks/seminars/playgroup. Not because i don't want to, because i couldn't find one.
Though i wanted to go someplace else for therapy, i never made the move.

This new info is both a relief and a curse.
Because i feel like i'm not doing enough for my son.

Oh well.
What the use of dwelling.
Now that i know, i'll do a better job.

Must. Find. Music. Class. ASAP.
Must. Find. A. Talk/Seminar. ASAP.

Toddler Activity: Bathroom Painting

Ok so Afif loves the iPad. i came to realize that after two mornings of him getting up and out of bed and point the iPad at me. Now before you bash me, don't worry. It's not an addiction yet. Setakat ni tak pernah la lagi dia mengamuk tantrum kalo tak dapat. Phew phew..

But yaa.. Of course we have to plan stuff for him to vary his activities. Mainan banyak tapi kejap-kejap main dia bosan. Dia suka main air, aku layan la jugak kat toilet tapi susah sebab takot basah hearing aid dia. Main hide and seek pon layan. Dia layan gak crayon, pencil color and magic color tapi lelama dia ada idea conteng dinding plak (-____-) so i minimize his contact with those.

i got him this Crayola Washable Kids' Paint a few weeks ago. The first time we painted was one rainy day after he got up from his afternoon nap. Kononnya fun activity. Tapi time tu dia cranky, dia conteng sekali dua je pastu marah aku cat tapak tangan dia pastu we wrap up. So much for being artsy.

The supplies for painting activities.

 End product

Cranky kene paksa melukis

Then yesterday i had this bright idea of combining his favorite place, the toilet, and some art stuff. Maka terjadi lah bathroom painting!

Bangon pagi dan brekpes, i stripped him down. Ingatkan nak mandi la tuh. He got excited pon seeing the paint i laid on the stool in the bathroom. Then i started painting the house and tree, he followed suit. But of course, no house, tree or even stick figures from him yet. Conteng-conteng ikot suka je.

Muka puas hati main conteng-conteng

Our masterpiece.

He was so happy experimenting siap cover toilet bowl pon dia conteng. i think this activity is good to train our baby's motor skill and also to teach them colors. i even mix a few colors together to create a new color for example blue+yellow=green!

The best part is this Crayola Paint is totally washable. After our painting session, simbah air kat dinding tiles tu and gosok sikit-sikit pakai tangan je terus hilang color tu. No mess for lazy moms like me.

p/s: malam tu dia amek pencil color dan conteng dinding rumah while i was busy in the kitchen. Laki aku gelak je "siapa suruh ajar conteng toilet?" katanya. Haihhh..

18 Months

My baby is one year and a half already.

Hari Rabu haritu bawak dia gi 18 months doctor's appointment. Alhamdulillah berat dah 9.4kg (a bit on the low side), tinggi dah 78cm. Head circumference aku lupa brapa. Dr. Anthony kata semua ok and Afif ni friendly and social btol. Hehe. 

Pastu kene cucuk DPTa. Dia bagaikan dah tau nasib nak kene cucuk, takmo baring atas katil doktor. Cucuk smbil dukung je. Nasib baik nanges kejap. Pasni dokter kata takde kene cucuk dah smpai la masuk skolah nanti unless nak amek optional Hepatitis A jabs masa umur 2 tahun. 

Meh bebel pasal milestone:

Feeding

-dah kurang memilih. Apa aku bagi dia telan je. Yayyy!

-babysitter kasi makan 2 kali kat umah dia: pagi n petang. So malam aku akan kasi jugak makan

-kalo ada lauk baby-friendly kat umah like masak kicap or sup ayam/sayur/ikan, aku bg je lauk tu dgn nasik. Kalo tak, aku masakkan porridge/sup/pasta/mi goreng.

-his current favorite is fried carrot noodle with tomato n salmon. Laju dan licin. Wan pon suka. 

-since aku masuk kerja ni, aku still pam kat office. Tp ebm tak cukup jugak utk bekal kat umah babysitter. So campur ngan FM. At times dia mmg reject FM. Babysitter akan ganti ngan Ribena or susu kotak Dutch Lady coklat.

Development

-berjalan nak laju aje tapi clumsy. Kadang tu laju sangat smpai tak sempat brake/lose balance pastu jatuh. Aku stress btol kalo jatuh n kepala benjol. Tapi lantak la asalkan tak mudarat.

-loves to sing and dance. Paling dia nyanyi n joget is twinkle twinkle little star, wheels on the bus and theme song Timmy Time. Suka tengok dia joget kat Timmy Time theme song.

-dia ni makin friendly plak aku tengok. Kalo mood baik tu jalan kat mall semua orang di lambai nya siap kata "haiii.." Dia ingat dia Prince George ke ape. Pastu suka jugak salam random people magadddd! 

-thankfully, bila strangers mcm sales girl or waitress panggil or nak dukung, dia taknak, siap nanges. 

Activities and hobby

-dah kurang obsess ngan iPad, alhamdulillah

-dia suka build tower block, sepak-sepak bola, main air (pantang tengok pintu toilet bukak, laju je masuk. Aku takleh lalai kene make sure pintu toilet tutup at all time), menconteng (takleh kasi magic color dah sebab nampak dia nak conteng sofa and dinding aritu)..

-suka pusing and spinning sampai pening huyung-hayang

-current fave dia adalah main hide and seek ngan aku. Bukan nyorok betol pon. Nyorok blakang dinding/pintu/kerusi bajet orang tak nampak. Baahaha. Suka betol dia smpai malam pon gigih kami nyorok nyorok.

-his current fave shows are Timmy Time, Tayo the Bus, Mickey Mouse Club House and Tom & Jerry. Kalo ada cerita2 ni memang kusyuk la the first 5 minit depan tv. Pastu sibok la cari remote tukar channel.

Hearing & Speech

-Hmm.. sebenarnye tak banyak progress sangat. His frequently pronounced sounds are aaaaa, mammamamma, and he can say "hai!" and "bye" fairly clearly
-dia dah pandai ada tune lagu. Paling obvious bila ada barang jatuh and we say "ah-haa tak tau siapa buat?" he will say "aa-aa a-a-a aaaaa.." in that sing song voice. Also bila nyanyi lagu Minion yang Banana tu, dia pandai jerit at certain part yang minion tu jerit. Hihi..
- but sounds like tatata, bababa, eeee, etc belom ada..
-my suspect is that maybe the hearing aids don't amplify certain sounds in the best way. We're currently in the process of taking audio tests to get full results. Will post about this later.

That's my baby.

Beli kain kat Jakel pon nak sorok-sorok kejar-kejar

Kisses for you

Ni masa favorite uncle dia, Uncle Redha nikah. Masa nikah pon dia sibok nak berkepit ngan Uncle.

Suka memanjat walaupon tak berapa terror lagi

The only way to get him to sit down at a mall: gi toy store and test toys

Nak bebas je kalo kat malls.

Ilyas nak suap Afif air

After about a year of tak berjumpa, dapat jugak bebudak ni jumpa masa makan-makan kat rumah Kak Yulie.

From left: Adam anak As, Ilyas anak Chuna, Aisyah anak Shim and Afif anak aku.

Hide and seek.