Jekyll n Hyde

I'm a speech language pathologist who works with special needs children in early intervention program.People often say that Rhianna is lucky to have a mom who is an SLP.I think my profession is both a blessing AND a curse to Rhianna.

When her father is always happy with her overall progress, I often find other areas to work on.

Rhianna is doing great in kindergarten. She finished top 5 students in the 5 year old class last semester.Her academic skills is on par with her hearing peers and in some subjects,even better.So of course we are happy but I'm still worried about her social skill.

She tends to be a bit shy with new friends and she often needs plenty of warm up time.If the social situation gets too stressful for her,she will just observe and not participate or she will just play alone.

People (her father included) told me to let her be.She will develop better skills in good time.
At moments like this..inside,I will be like Dr. Jekyll and Mr.Hyde.As a mother I agree (that's Dr.Jekyll). I should accept her and give her time and enough support to develop her confidence level.
As a therapist, I itch to intervene.In the end Mr Hyde wins.

So we are trying a few things like joining more after school activities, planning more play dates and role playing different social situation.
So, no rest for the weary...my poor child.

Things that I should do..

1.Smile more and frown less.
2.Work less and play more (according to Rhianna)
3.Eat more cupcakes (according to Rhianna)
4.Take more walks
5.Kiss and cuddle my child more (Rhianna disagrees on this)
6.Laugh more
7.Worry less

That's all we could think of for now.We'll post photos of our recent road trip soon.Have a good day everyone!

A chance to help others

I always say that my daughter was sent to me for a purpose.I've learned a lot of life's lessons just by raising her.Her deafness is what makes her special.

We are so fortunate to be able to have her bilaterally implanted and to have her progress at such amazing speed.There are many others who are not so fortunate in Malaysia.We don't have insurance coverage for CI operations  here. Some children will get fundings  from the ministry of health and some from sick children's fund but it is very limited.

Recently I was approached by the group of doctors who are responsible for bringing CI technology to Malaysia.They are a group of passionate doctors and wonderful people who have been helping deaf children in Malaysia hear for over ten years.They are currently trying to propose to the government to provide more funding for CI operations so that more children will receive the benefit.

So we put together a video that chronicles Rhianna's hearing journey from the time that she was signing until the time that she is stringing many words to form complex sentences.It was amazing to see how far she has come and how hard she works to achieve all this.We hope to show people the endless possibilities for these children when they have this miraculous technology.So we are hoping to get free CIs for many more children in this country.

Now, maybe I understand God's plans better.

They are family too!

We love our pets.They are troublesome for sure but they are entertaining.I grew up with cats,rabbits,hamsters,turtles and fish and now I think my daughter is following in my foosteps.

Meet rhianna's pets :

This is Sam.He was actually my cat but Rhianna claimed him as her own.He was a fat,grumpy cat with attitude but was always so gentle with her.I thought that he hated her for stealing all the attention ( he was the 'baby' before the real baby came) but I found them sleeping like this one day.So I guess he loved her in his own way or maybe he was trying to reclaim his position as the 'baby' in the family.One could only guess.Sadly,he passed away at the age of 10 of rich cat's disease (diabetes).We still miss him.

Meet Benben.He's the sweetest (though not the brightest) cat ever.After Sam's passing,he became the object of torture for Rhianna.He would let her do anything to him.What I love about Benben is that he is a willing model.Here, he was posing for a book that I made for Rhianna to teach her about preposition.All I need to do is put him somewhere and he'll pose.He's such a good sport (or maybe not very bright).

Agent Scully aka 'the wheel of blades'

She's called Scully because she's smart and nosy.She investigates every moving things and every sound that she hears.She's also good at being invisible (a smart cat will acquire this skill to survive living with an active child)The photo is blurred because she hates people getting too close to her.If you try to cuddle her,she'll turn into 'the wheel of blades' and you might get hurt.She's the only pet that escapes Rhianna's torture.She's smart remember?

This is Spots - the baby eaters.She got the guppies from her playgroup with other CI kids.They were working on pets theme so everybody got to bring back the fish.She has 4 guppies- all named Spots (go figure).I love to watch them but I get stuck with the cleaning as the rightful owner is too young to do so.They are baby eaters seriously.One of the females was super pregnant and one day she was flat but no baby fish was seen anywhere.It disturbed me for days.I have 5 baby guppies from previous breeding though.

Nemo - the demonic fish

She's orange so she's Nemo according to Miss R.Another fish acquired through pets theme,this time from her preschool.And again,I get stuck with cleaning the tank.If you wonder why Nemo is alone,it is because she is super territorial or perhaps demonic.I tried giving her a partner twice but both times she bit the males to death.So alone she is as she prefers to be.

So these are our pets which enrich our lives in so many ways.They provide my daughter with so many language learning directly and indirectly.They teach her to care for animals and the responsibilities of a pet owner.Ok,she is still learning in the second area.

p/s : there was also Kiki the stray cat who adopted us as his family.He was a free spirited cat who later became a victim of hit and run.We still remember him with love.

Glamour girl

Ever since she received the tutu skirt as a belated birthday gift,she has been prancing around in it begging to go to a ballet  class.Then,she begs to shop for new blouses with glitters to wear with the skirt (check out the pic).She's also begging for another tutu skirt (purple,this time).If I knew that this tutu skirt was going to cause me so much problem,I would have stopped my friend from buying this for her.

In another development,the new ear's progress is fast and steady.Her understanding with the new ear alone is almost similar to the old one,only that she might need some repetition at times.So I guess it is still pretty effortful to hear with that ear alone.

She's doing very well in pre school too.She counts and writes up to 30,understands quantity concept (they're starting addition soon),writes her own name independantly,recognises both upper and lower case alphabets.She reads familiar words quite well and was 'outstanding' in spelling activities according to her teacher...well,as outstanding as a 4 year old could be, I guess.

I'm glad that she's picking up a lot in school.She has many friends and gaining more language skills.She continues to amaze us everyday with different vocabulary and different pragmatic use of language.

We have reached a point where people who don't know her do not even realise that she is deaf...until they see the processors, if they could see it since the processors are pretty hidden now that she has short hair.

We still have many things to teach and show her though.Not just how to listen and speak,but how to grow into a strong individual.How to advocate for herself and have a positivite attitude.How to care for other people and give back to the community.How to live well and be happy with your life...for in the end this is what matters most.

Twisted sense of humor

We finally received a surgery date for her second implant - April 28th !


Let's not discuss about how will she bond or learn to listen again with this new device.The thought of another switch on and multiple map sessions (as exciting as they are ) will make me hyperventilate.
Let's not even talk about the surgery process.I might need a tranquiliser to calm my nerves.

Today we'll talk about sense of humour.

I am a speech therapist who has not much experience working with hearing impaired children.Aside from my student and training years,I don't really take HI cases.It's not really my cup of tea.I'm more into autism and PDD and things like that.So what did God do? He blessed me with a deaf child.Now, I really had no choice but learn all the techniques needed to teach my child.

Getting the first CI was a bit too easy for us.The government funded the whole thing and we got it fast.We also got our favourite surgeon and audiologist even though they were very busy and very much sought after.So,where's the humour in that?

It took 3 adults to hold her down and stick that damned thing to the her head while she screamed bloody murder..and that thing tend to fall off every 5 minutes or so and the whole process would start all over again.It took her quite some time (like one whole month of screaming her throat sore) to bond with her first ear and now they are inseparable.


About a month ago in preparation of this pending surgery,I upped her prebiotics,give her daily doses of multivitamins,fish oil and extra vitamin C to build better immune system and possibly avoid cough and cold episodes.
Then,God decided to be funny again and sent us some virus just when I was about to pull her out from school and keep her at home.
So now she's sniffling and coughing and on various medication trying to meet the surgery date (we'll update you whether we make or not).

I've learned a lot of lessons on this journey with my daughter.I've learned a lesson in humility.We can always make plans but God will make the final call.I've learned to take things easy,enjoy the moment and worry less.I now understand that everything happens for a purpose..even the most impossible and difficult things.We just have to find the purpose God intended and fullfill it.

And I've also learned that He has such twisted sense of humour.

Rapunzel's hair cut

Rhianna has always had long hair.After she watched the movie Tangled,she insisted that she be called Rapunzel.Recently however,her language developed more.With more language,come more ideas.With more ideas come reasoning ability.All these combined with a stubborn child resulted in a hair cut.

I love her long silky hair.She needs the long hair.Really.She's very active and a bit tomboyish so she needs the long hair to keep some girlish element.Also,I used to braid her hair tightly over the magnet piece to keep them from falling off everytime she went for her OT sessions or to the playground.

For the last few weeks however she started asking me for a hair cut.Reasons being:

1.All her classmates have short hair (except one girl but she didn't mention that,little stinker).
2.Short hair is cute (?)
3.Her name is actually Rhianna not Rapunzel (really?)
4.Everybody she knows has short hair (I'm not so sure about that)

Anybody who knows this child knows that there is no point in arguing with her.
So here are the pictures.

Setting up the length.She wanted short short!Mommy said not too short please!So we compromised on shoulder length

She wanted short bangs too

Posing with her 'cute' short hair

Again at home with her 'cute' short hair.Notice the fake butterfly tattoo on her arms? She's a future diva I told ya!

We're still around

We're still around,just a little bit busy.

Rhianna is doing very well in preschool.I had a nice chat with her teacher who said that Rhianna is catching up very fast in her language skills.We just need to brush up on her pronunciation (she's due for another map next week).We're also going to do another language assessment on her to see how much has she gained.We wont be able to tell exactly where she's at in comparison to her peers as these tests are not normed (yet) in our country.But we would at least have some ideas of her language development.

We are also working on getting her a new ear which we hope would happen soon.We are now waiting for a surgery date from our Supersurgeon.We so love this surgeon for his superb skill and he is also currently one of the best in the region...So we'll wait until he's available.

So that's pretty much our update..and also, Rhianna decided that she no longer wants to be Rapunzel and had been nagging me for a haircut for over a week.So, today she got one at a salon and has been showing everyone who would look and telling everyone who would listen (on the phone) about her new hairdo.I'll try and post some pictures tomorrow.

Singing

My child talks and sings all the time..seriously.Recently,she started sleeping with her processor on so that she can sing herself to sleep.Every night as soon as I switched off the light,she will start her medley of songs.She will sing all the nursery rhymes over and over again and she sometimes change the words to make the songs sound silly and funny...then she'd giggle over her clever words.I often have to tell her to close her eyes AND her mouth and go to sleep.I tried taking off her processor and yet she still sings with or without her 'ear'.Very funny.

I've noticed that she learns songs faster now and her tunes are much more accurate.This may be the result of her weekly music class or maybe she just listens better now.

Last weekend when I was cooking in the kitchen and she was also 'cooking' and feeding her mickey mouse, I heard her telling mickey to eat the vegetables.It was very funny listening to her telling mickey that vege taste good and it's not hot or spicy so mickey should at least try it.Later on when she refused her vege,I told her the same thing using her own words and she smiled sheepishly.

Just now when she was playing with my friend's daughter after dinner,the adults were laughing at the fact that the deaf child is talking more than the hearing child.

It has been an amazing journey to get here to this place we're at and I'm looking forward to share more amazing moments with my amazing girl.

The new boy in class

Rhianna's CI often attracts many attention.It's not uncommon for us to be stopped on the street by curious people asking about the device (type 1).I like this type of curious people as it gives us an opportunity to spread some awareness about the CI.What I don't like is the staring, gawking and whispering kind of people (type 2).We have encountered many of this kind too.

When Rhianna attended the school holiday program I was quite worried of how the children would respond to her blinking ear.It turned out that the 3-4 year olds are quite oblivious to it.They just play with each other and pay no attention to her ear... until the new boy came.

He joined the program a week late and he's a year older than the rest of the group.He has to join the younger group as he speaks English as the second language.Being a 5 year old boy,he is VERY curious about Rhianna's ear.He likes her a lot and I often find them playing together.

One day when I was picking my daughter up,he cornered me and started asking question about the CI..so I thought, aah..he's type 1.

Boy: What is that? (pointing to Rhianna's ear)
Me : That's her CI.It helps her to hear.It's like her ear.
Boy: It has red light.
Me: Yes it does.

When I tried to explain further he interrupted.

Boy: What's the circle on her head?
Me: That's the headpiece.It's part of the CI
Boy: Can a boy wear it too?Does it come in different colours?
        Maybe my mom will get me one?
        Maybe I can get a white colour one?

At this point I was already laughing.Maybe he belongs in a different category altogether.
type 3 - thinks CI is cool and want one for themselves.

Not about her speech or language..

Today's post is not about her language or speech or even her hearing..
I was laughing looking at her baby photos and thinking that it would be fun to put some pictures together to see how much she has improved over the years (in the appearance department)

• She definitely didn't have a neck then.A little bit on the bald side with sumo wrestler proportion.

 

• Still pretty much the same here plus posing for the camera with the wide eyed shocked look

• Some improvement seen here.Her hair finally grew longer and oh..there's the neck!

• Definitely more improvement here.She's having the half smile and naughty twinkle in her eyes.The expression that I come to know so well and it usually means trouble!

• The emergence of cheekiness and naughtiness.Looks continue to improve as she starting to tolerate hair accessories.

• Hair continue to grow longer (If I didn't cut her hair she would have become Rapunzel in flesh and blood.).Still have that shocked look when posing for the camera.

• Trying on different "hairstyles".This is how she'd probably look like if she had curly hair. 

 

• This how she looks like now (minus the curly hair!).She has lost most of her baby fat (which makes me so sad).She's not gaining it back no matter how much I feed her..instead she's growing taller and slimmer.

It's amazing and sad how time flies.She's no longer that chubby little creature that only sleeps on my chest.She's now a preschooler always busy with her 'projects' and pretend play.She doesn't always listen to me anymore as she now has teachers who also teach her about many wonderful things.

BUT..she still thinks that mommy is as pretty as a barbie doll...woohoo!

Flu Scare !!

Last week was sick week...everybody around us was down with cold or flu.Needless to say,Rhianna also came down with her very own viral fever resulting in high temperature of over 39 degrees.
Three days,many sponge baths and fever medications later,she was better.But once the fever was gone, in came the severe coughing.

The paediatrician decided to nebulise her twice a day for two days to get rid of the phlegm and make sure that the lungs remain clear.

We are so lucky that she was such a good sport during the nebuliser episodes..or maybe she was too tired to kick a fight.



Anyways, after three trips to the paediatrician office,one trip to the ER (at night!) for rapid testing to rule out the dreaded H1N1 virus  ( negative, thank god! )...she is finally ok.
She didn't need antibiotics or antiviral whatsoever.She kicked the virus in the butt with her very own antibody and the doctors were pleased.
Well,I'm pleased..she's my strong powerpuff girl!

Oh btw,she was severely pampered and spoiled during these days that I have a hard time convincing her now that she's no longer sick and she CAN get her own juice box from the fridge and pick up the story book that has fallen off the sofa.

9 months hearing and another ear coming her way

As the months passed by,I found myself more relaxed and more able to enjoy the time with my daughter.I'm no longer counting the hearing hours each day,or calling the nursery during my working hours to see whether my child is wearing her CI or not.
 Rhianna is hearing well with her CI and she knows it.Sure,from time to time she needs rest from the device but she likes it on most of the time.And her speech and language is blooming very well..she's consistently stringing words into phrases though some words are still approximation.

What amazes me most is how well she can listen in noise..just the other day she was standing about 2 meters behind me while I was doing dishes and she was able to answer my questions with all the kitchen noise.And best of all,she can now tell me when a sound is too loud for her.
Last couple of Sunday,we were at the Aquaria watching the fish feeding session and a man was talking on the mic.Rhianna came to me and said "tak nak (pointing to the CI),bising"..(dont want,noisy).So I switched it off for a while until the announcement was over...so no more struggle for both of us.

Though our principle is mainly AVT,we still teach her some signs and lip reading skill and she has gotten really good at these skills which she uses when not wearing her CI.One of my friend was very surprised to see her following instructions and answering questions via lip reading alone and suggested that we test her hearing again,in case she has regained her hearing somehow.How I wish that!..but nope.Last we checked,she's still not responding at any frequency even with her HA on..well she used to have 80dB for 250hz but even that is gone now.

So next week,we're going to empty our piggy bankS and make the RM 58K payment (yikes!) for her new ear and schedule the surgery.Hopefully,she'll get more benefit being a bilateral CI user..

We have FIFA World cup fever!

If you visit us these days,you'll most likely find us glued in front of the TV watching the highlights of the games that we missed.If you come on game night,you'll see many adults cramping on the sofa,some maybe sitting on the floor and one little girl probably stuck somewhere between the many adults.When there's any possibility of a team scoring a goal,you'll hear many voices cheering and shouting but you wouldn't miss one small voice shouting (with correct intonation and inflection)..Goal,goal,GOOOOAL!!

dreaming in sound?

Yesterday,Rhianna spent a delightful day with her favourite person (aside from mommy!),her mama Gee who is also her godmother.They went shopping (their favourite activity!)for sweets and candies for her coming birthday party.She wasn't very happy to go home but said her tearful goodbye anyway.
Later that night when she was asleep I spent the night wrapping her presents and preparing goodie bags for the party.Then I heard a small voice mumbling something..Thinking that she was awake,I went to check on her but she was fast asleep..suddenly she waved and said "bye bye mama Gee".
How sweet is that..she was probably dreaming about her outing.That left me wondering..Is she dreaming in sound?My deaf child is TALKING in her sleep..explain that!





Rhianna and mama Gee in one of their outings together

enjoy your child!

When a child is born,every parent has certain expectations and hope.You want your child to be smart and creative,loving and kind,good looking and successful later in life.
But when your child is diagnosed with hearing loss or any other disorder,your hope and dreams seem to crumble.It's easy to lose perspectives amidst all the despair.But it's very important to remember that all hope is not lost.

There are a million things that you can teach your child.I teach my girl not to hide the device behind her hair.Though it attracts many unwanted attention and stares,I teach her to wear it with pride.I teach her that there's nothing that she cannot do if she sets her mind to it.Some things might be more difficult for her compared to others..all she has to do is work harder.I hope later she will learn not to make her handicap her disability.

There are days when I still despair.There are days when I still curse fate..not for giving me this child for she is totally delightful.I curse fate for giving her a bad deal..for all the hardship that she will have to endure.Then I have to remind myself..if I continue to despair,I would lose all the joy.The joy of loving this wonderful child that god has given me.

So for you out there..enjoy your child..enjoy every sleepless night,every temper tantrum,every cough, cold and vomit....every smile and laughter,every hug and kiss,every success and setback..everyday of his or her life.