The Love Of My Life...My Little Angel

Tuesday, July 26, 2011

25 July 2011 - The Diagnose - Autism

25 July 2011 - Meeting with child psychiatrist Doctor Hajah Fauzi Binti Ismail at General Hospital Kuala Lumpur.
On this day, we were told that Iman is autistic... as simple as that...In a way I hated the word `autism' being spoken to me by the psychiatrist... well, to her (the psychiatrist) the word may not mean anything, may be because not involving her own child !  But to a mother (me), of course the word mean `the world', the future of my child... even though I had read a lot about it, watch videos about autistic children, in other words I tried to prepare myself but still being told that my child is autistic kind of shocking and time is definitely needed for me to digest.  The word just refused to sunk in my brain. For a moment, my world black out, in a blink of an eye I just stared at Iman...lost for word.  I was in denial.  The psychiatrist tried to ease my `disappointment'.  I told her, I am worried about Iman future.  She told me that's what she was telling me... to continue what we are doing now, early intervention - OCCT/Speech theraphy ... the question is, is it enough?  With the appointment once every 2 - 3 months ? She told me Iman is only 3, we have lots of time to prepare for her... easy for her to say huh... she reminded us that there's no cure or medicine for autism... and never believe in the products sold in the market... I knew that but surely we can do something at least to help stimulate the brain to reduce the symptoms of autism... ahhh I need support group... God help me... I read about people feeding their child with fish oil etc... I tried that before.  May be I should think about how I can make her take the fish oil ... but come to think about it, she's only 3...
At the end of the session, Iman came up to the psychiatrist with saying `hi hi bye bye' and shake and kiss her hands.  The next appointment was set in another 4 months.  At first she set for another 6 months but may be looking at me being so worried, she changed it to be in 4 months.  Is this helpful ? I just don't know..
I have a lot of thinking to be done... may Allah guide us and help us all the way.
But the most heartbreaking question was when the psychiatrist asked me `had you registered her as a disable person?'  Of course, I had not done such thing ... at least not yet... I was sad and angry !!!
The most hateful thing to know when you have a child who is autistic is the chances of your child being labeled as one..

Yesterday, Iman also attended her OCCT (before the psychiatrist session) but with a new staff because Mrs Ee was on MC.  The new staff was on his first day at work (his first job).  He (I refer to him as the boy because he's too young) apologized for not being able to do the best with Iman.  Well I told him that's okay I understand.  At first Iman refused to come in the room and there were a bit of tears.  I went in the room and she followed.  There were few people in there (well the hospital has limited space).  The other patient was a spastic 11 year old boy.  Looking at him of course I am thankful Iman was as normal as she can be.  Thank you Allah.  There, Iman cheeks were pinched, Iman's body was `massaged'.  They can't help themselves.  `Geram tengok dia, badan dia, comelnya dia'.  Iman was considered as one cute and chubby toddler.  She was kissed too... The psychiatrist also said `Comelnya bukan main lagi'. Well, the name Zarifah means beautiful and intelligent. 
As usual Iman still showing difficulty in focusing... short attention span.  Her eyes (and hands and feet) always roaming about the room looking and searching for other things she can play with instead of focusing on the things and job that she had to do with the therapist.
The boy was having a challenging time with his first `cute and chubby' patient.  There were tears and screaming during the session.
At the end of the session Iman just `pushed up' her cheek to the boy to kiss instead of her shaking hands with him as told to.  That brought smile to the other patients' relatives waiting there.

Journey home was quiet... I was thinking...I guess my husband was thinking too...
Iman fell asleep...Iman must be tired walking around the hospital while waiting to be called in and the sun was blazing hot.

Monday, July 25, 2011

25 July 2011 - Child Psychiatrist & OCCT - GHKL

This afternoon Iman will be meeting the Child Psychiatrist for the 2nd time and also attending her OCCT at GHKL.  Hopefully everything goes well and most importantly her mood is good. 

Will update later...

Tuesday, July 19, 2011

19 July 2011 - OOCT Serdang Hospital

This morning Iman was not so cooperative while being prepared for her appointment.  May be she still want to sleep or because we pulled her away from her cartoon to her morning bath.
However, she was happy and very cooperative during her session.  I peeped through the door and surprised to see that she was calm and sitting in her chair concentrating on whatever she was asked to do...
After the session, we talk to the officer (as usual) and were glad to be told that Iman was doing well during her cognitive training session... she knew color coding, managed to hold the pencil well, doodled (she always do that at home anyway !) and she knew the simple shapes.  We were not surprised, because we already knew that she can do that, already but still we were happy when told.  We were advised to practice more at home and start working with flash card...actually we started showing her flash card (ABC and 123) when she was still a baby (2 - 3 months old if I am not mistaken)
In a way it was a successful session today.... whatever it is, alhamdulillah...
I will always pray for the best, for my little angel.

Sunday, July 17, 2011

17 July 2011 - Iman on hunger strike ??

As for today Iman refused to eat her lunch and dinner again (+ yesterday)... making me losing my patient...
Don't know why... she only eat biscuit, so I had to feed her more milk.
Sad to see her flat tummy while she's sleeping laying on her back ...
Hope this episode ends soon...
I should try cook pasta for her, hopefully she'll eat...

Update on her speech... lately she's been saying a word with `a' before the word for example - a piano ...we've been hearing piano most of the time...saying piano while hitting on her xylophone whether with her fingers or with her toes...

19 July - yes she did eat my pasta.  I blended the celery into the sauce... another vegetable besides tomatoes

Monday, July 11, 2011

Iman's 2nd Hearing Test - 08 July 2011/Serdang Hospital

08 July 2011/Serdang Hospital - Iman had to undergo her 2nd hearing test.  This time I just gave her usual dose of milk at 5 am.  She's supposed to fast from midnight, well I was afraid that the test would start late and she would slept till late afternoon with empty tummy.  As usual she had to be sedated.
She woke up early that morning and in a good mood.  At the hospital, I had to ask for the OT gown because the shirt and pants they prepared for her didn't fit her at all.  They said they prepared the shirt according to the common size for a 3 year old kid.
At about 9.30am the doctor and nurse inserted the needle on her right hand.  I was told to leave the room so they can do the job.  The door was closed, while I waited out side.  My heart was ripped apart hearing her screaming and crying in there... After awhile i just walked in with my husband.  The needle was in, her hand bandaged, leaving the plastic tube dangling.  I saw drops of blood on the bed sheet.  Iman was still screaming and crying.  My hubby scooped her up and we went outside to calm her down.  She tried to pull the plastic tubing and I managed to stop her.  She refused to look at her right hand after that.
About 10 am, we went downstairs to the ENT clinic for the next procedure - sedation. It went smoothly, not much resistant from Iman may be because the needle is already in.  She went into slumber instantly.
Soon after that the audiologist did her job.
The result - much better than the previous test... I don't know how did it happen... was the test done before not accurate? or the test this time around was not accurate? did the machine not measuring accurately? We were not given the answer... Or may be Iman's hearing has improved ? I was puzzled !
At last the audiologist suggested we put her under different test, sedation not involed this time and I agreed instantly.  The test would be done in about six months time.  In a way, I was relieved that she doesn't have undergo this procedure again. Thank God...
Then, she was pushed back up to rest at the day care ward.  She was awake and restless and making noises.  Other patients there were curious what happened to this baby.  We tried to calm her down.  At last we resorted to make her a bottle of milk and prayed that she won't vomit.  After her 8oz dose of milk she calmed down and I put her to bed.  She went to sleep.  We were relieved.  Alhamdulillah.  My husband left for his Friday prayer.
But the calm quiet morning was disturbed when one of the staffs brought in her son, very chubby boy and very NOISY too...talking and screaming at the same time... hhhmmm... I was worried that he would awaken Iman.  Luckily Iman manage to sleep through the disturbance.  But she did open her eyes few times, she was too drowsy to fully awake.  Thank God.
We left the ward about 4.30pm that day... she was wide awake... alhamdulillah... what's left was bruised and swollen right hand...she showed us her hand and I kiss it in hope that it's less hurting... kalau Mak Tok tengok mesti sedih dia...

Here are some pictures of the day:
Poor chubby hand - where the needle was

Waiting to be sedated

After the test

Under sedation

Waiting to be pushed upstairs to the day care ward

Went to sleep after 8oz of milk

Sweet dream my sweet...

Purple bear was there too...


She slept through the noise....