Audiograms: August 2014

Last two weeks we went for unaided audiogram at Klinik Audiologi UKM. Ntah kenapa hari tu Afif takut dengan puppet berlampu tu (kene respon pandang ke puppet bila dia dengar bunyi. Itu untuk menunjukkan yang dia dengar). Dia menangis dan berpeluk je masa mula-mula start test. We ended up not using the puppet, just let him draw (more like menconteng) to distract him and observe his change of facial expression/movement bila bagi dengar sound.

What's worrying is that his hearing loss seems to be progressive at the high frequency. Meaning his hearing is worse that the last time we had an unaided test.

Afif unaided test Aug 14, 2014.

i argued with Pn. Izzati about the accuracy of the test because Afif listens well and while his speech progress is not much, it does not seem to worsen. He can even pronounce shh/ (which is a high frequency sound). Pn. Izzati kata dia ulang banyak kali bunyi kat high frequency tu tapi Afif still tak respon. Lagi la mama risau :'(

We discussed about possibility of cochlea implant for Afif. Beacuse if his hearing loss is really progressive, i want to insist on him having a CI. i don't want to risk waiting and delaying him to learn to speak. Pn. Izzati suggested to run one more aided test. With both aided and unaided test, she can bring forward Afif's name in the next CI meeting.

So last week we went for another aided audiogram.

Alhamdulillah, this time he was not scared of the puppet anymore. And the more good news is, Afif's aided hearing threshold has improved from last aided test in June.

Afif aided test Aug 19, 2014.

Though relieved at this result, i'm still in doubt. Because after 8 months of consistently wearing hearing aids, and looking at the good aided hearing threshold, Afif's meaningful words are limited to Mama, meow and hai. Nothing more. 

Yes, he had produced more sounds like shh/, na/ di/ ge/ but no other meaningful words. Maybe there are certain speech sounds that he can't hear or maybe it's our teaching technique that is wrong.

At the last discussion with ENT, audiologist and speech therapist, they all agreed that Afif is progressing okay. But as a mom, i'm still worried. i'm still not satisfied.

As of today, we have decided to seek second opinion from experts from other hospitals. We feel that after hearing opinions from others, we'll be more comfortable in making decision; to continue with HA or to go for CI. At the same time, we're learning more and more to be a better speech therapist for him.

Being parents of deaf child really is exhausting. It's not the dealing with your deaf child that is exhausting; it's the pressure of making the right choice for him that is exhausting. We want the best for him but we don't know what the best is.

O' Allah. Ease our journey to make the right choice. Ease Afif's path so that he can hear and speak beautifully. Please give him the ability to hear and speak and the opportunity to learn, be accepted and have a bright future like other normal children. Amin.

Speech Learning Tools from Cochlear.com

i've been meaning to share this but kept on forgetting.

On last speech and audio discussion, Dr. Basya and Pn. Izzati suggested i view and print this printable module from Cochlear website. It has week by week activities to be carried out with your hearing impaired child. It's like a guide for doing your own speech therapy session at home.

i, of course did not know this exist and never thought of going to Cochlear website because Afif is not a CI boy. But Dr. Basya said it's okay because it's the speech lesson that matters, regardless of the baby using hearingaids or CI.

There's so many steps to get to this page so i'll just give you the link:

http://hope.cochlearamericas.com/listening-tools

Depending on your baby's hearing age, you can choose the module for babies or for toddler. Though Afif is a toddler, his hearing age is 8 months so i chose to work with Sound Foundation for Babies module. 

There are week by week module. As Afif has been wearing HA for more than 8 months, i did not start on module 1 for him. Choosing which week to start on was a bit tricky for me as week 36 module looks too advanced for him. In the end, i went through almost all of the module and decided to print week 15 onwards. Even with that, there's a few things in those module that Afif has not mastered and a few other things that he has mastered. So evaluate your child's speech and hearing and start the module according to that.

i wish i knew about this modules when he started wearing the HA. It'd be way easier for us. Anyhow, what's done is done. We'll have to work hard.

Sound Foundation for Babies: for the first 12 months of aided hearing

Sound Foundation for Toddlers: for the first second year of aided hearing

For convenience, i have saved the link under the "Informative Links on Hearing Loss in Children" tab on the right side of this blog.

 

Afif's printed module.

i put it in clear pocket by week.

A Sense of Belonging

As a hearing mother of a deaf child, i have always felt lost. I've always felt like i'm stuck, having no one to talk to, no one to ask, not knowing anyone who has been in the same shoes as i am. Any questions i have had always been directed to Afif's speech therapist, audiologists and Mr. Google. They have been so helpful but there's always this void, you know? i wanna know i'm not alone in this.

So i went on like that.

Until one fine Saturday morning, i attended a playgroup organized by Klinik Audiologi UKM. Though without my husband (who had to work), i learnt so much and finally met other parents and their deaf kids. We talked, had sharing session, and listened to a beneficial presentation by Dr. Basha while the kids are well taken care of by the facilitators.

Sadly, we rushed home as Afif has gotten cranky. i didn't get to swap numbers with any of the moms. Memang sedih la tak sempat tukar-tukar nombo phone dengan ibu-ibu yang lain.

Lucky for me, i bumped into Su while going for Afif's MRI follow up at HUKM. Su is Naurah's mother (a 2year-old hearing impaired girl) who i met during the playgroup. We talked for a while, swapped numbers and the next thing i know, i'm invited into this Telegram chat group.

*Telegram: application on the smartphone for chatting. (macam Whatsapp jugak)

Ya Allah. Bersyukur sangat di-invite dalam group ni. 

There are around 50 mothers (and the numbers are expanding) of hard of hearing children. Ada yang senior, contohnya Kak Ziba yang anaknya pakai HA, speaks well and masuk sekolah rendah biasa. Ada jugak mak-mak newbie macam aku and Su yang anak kecil lagi.. Ada yang pakai HA, CI and bone.. Ada yang dari KL, Kuantan, Kelantan, Sepang.. Setiap hari ade je topik diborak; children's development, cara terapi kat rumah, buku mana yang best, menu harian, etc.. When any of us has any questions, the others will try their best to answer. Even if sometimes i don't get a definite answer, i'm still so happy to know their experience.

Finally i don't feel like the only mother of a deaf child anymore. 

If any of you readers are a mother of a deaf child, contact me and in sha Allah, you'll be invited into this chat group too. You're not alone in this.

:)