Alif: We are back to square one...

Assalamualaikum wbt and a great day to all.

It has been a while since my last entry... I know. I had been busy with my studies.
Doing R programming is not a very simple task. Plus I need to read and do literature reviews. So, yes... I'm juggling and struggling the life as a PHD student. It draws me closer to my family and (masyaAllah) to my sole creator, Allah azzawajalla...

It has been really down the peak for me right now. I feel soooooooo not motivated.
I am usually a positive person.
I can motivate myself to do whatever I feel like doing...

However, after watching the proposal presentation by some postgraduate students, I know I am falling behind. If I continue like this, definitely I will not GOT.

Our meet up with Dr. Sofia Ali was not helping with my motivation at all.
I know she is the specialist and I am the parent. Apparently, whatever I do is not enough for her. I have done A LOT for Alif! If only she knows how I struggle to make time between my studies and his school!! But, she don't know and she sort of don't care!! She repeatedly say "I can only suggest, it is your child". Hellooooooo... I know Alif is my child!! I know Alif has a problem. May be a permanent problem. THAT IS WHY WE CAME TO YOU!!!!

Sorry.
I really feel like shouting.
Every time we came to see her, she is either not listening or have a don't bother attitude or being intimidating! I have thoughts of changing to another doctor, you know any??

Last 2 month, her benchmark was Alif can at least read. Alhamdulillah, I drilled him and he finished Buku Anakku No. 8. In front of Dr. Sofia he can read his book. Stuck here and there, normal for me. Then she took her Autism pamphlet, which has small writing in light blue and ask Alif to read. Alif read a few words, then stopped. I can see tears in his eyes. Come onnnnnn... He was just able to read! Dr. Sofia is breaking him into pieces, and I, in disbelief, gagged and crushed inside! What kind of doctor is she???  Her exact words, "Buku Anakku ni untuk enam tahun. Bukan standard dia. Sepatutnya umur dia ini lancar baca suratkhabar!"

YES. I KNOW. THAT'S WHY HE IS CALLED A SLOW LEARNER!

I showed a simple math operation he did when attending one of the OT session. An addition with 2 by 2 digits. She mocked me and said, "Ini tadika buat! Dia patut dah start hafal sifir". With her bad handwriting, she scribbled and ask Alif to do 29+15. Alif took his time but answers wrongly. However, the method was there. I gave credits to his math teacher and his OT therapist.

Then she taught him how but briefly, not that enthusiastic.

For me, Alif has achieved a lot for 2 months.

The OT therapist even said Alif is progressing.
Dr. Sofia didn't even ask about the outcome of the OT sessions. 

For Dr. Sofia, it's nothing.

And I thought we should cooperate, huh.

Her next assignment to us was to enroll Alif to a 3 months special dyslexia program.
I told her, before we already did plan to do that before, but when she said Alif is not dyslexic so that was a bad idea. Now, we are back to square one. She told me why not enroll Alif to pendidikan khas. There she goes again...... I have discussed with her before about this, on the first appointment. Alif is not at the level that he can join the kelas pendidikan khas. To join program inklusif, there are two sessions of school and standard 1-3 is usually in the afternoon and pendidikan khas is the morning session. So, it is impossible. Only in Sekolah Rendah Shah Alam in Seksyen 16 we can do it. However, the class is already full. It sounds simple, I can write it in a few lines. But, the matter of fact, to get all of this input takes weeks and driving to Jabatan Pendidikan Negeri Selangor at 2 different department and dealing with three schools. It is a handful.

What did Dr. Sofia say when I explained all of those things??

"Saya tak tahu semua itu. Itu awak kena tahulah segala proses dan prosedur. Dan awak sendiri buat keputusan." with a smirk on her face!! She looked at me and said, "You have to drill him to read. All the time. He has to think think think all the time. No TV. No ipad. just learn learn and learn. Inside his head is empty. No thinking inside. Read newspapers, billboards, signboards!" Seriously, I don't think Alif can cope with that. Whenever I ask Alif to read the signboards, he start spelling then when we passed the signboard and he could no longer see the words/ the signboard is now behind him, his famous word, "Entahlah...Dah tak nampak". I am not trying to make excuses. That's the reality of the situation. Even reading story books, he can read up to a max of 3 pages only. Then he quits. How can I force the horse to drink?? (Not that Alif is a horse, literally...)

Aimy was playing a doll and wooden toys at the end of the room. Dr. Sofia looked at Aimy, and made a statement,"Sementara ajar anak awak yang ini, awak boleh ajar sekali yang itu.". I smiled and said that I was not that worried about Aimy. She's doing well in her learning and she's reading buku Anakku no 4 now. She looked at me and bluntly say,"Bukan membaca je fokus nya. Aspek lain juga kena tengok." She's sort of telling me that Alif is like that, maybe all my kids will be like that!

Give me a break. Aimy is just 4 years old and her teacher said that she is a brilliant student at CIC Suri Puteri. At that time, I was no longer smiling or I pretend to smile. I can't remember.

She gave me the number of Dyslexia Center in Subang Jaya (actually the nurse gave me the number).
I told her I stay in Shah Alam and I told her that I have been in contact with the Dyslexia Center in Shah Alam. WTH she gave me the Dyslexia Center in Subang Jaya??? She's not paying attention to details of what I say. 

I know she has lots and lots of patients, conditions worse than what Alif have. Some came to her impaired; weak; unable to hear, walk or talk. 15 - 30 minutes per patient is just not enough to make bonds with the patients.

What she forgets?

We are human. We have feelings.

It's not about you, Dr. Sofia. It's about the patient and parents.

When we explain, please listen.

Yes. I know you know that for this condition, these are the symptoms.
Just have the courtesy to listen and don't cut us in the middle of explanation. It's rude.

She reminded me of a breast cancer specialist at HUKM. And how I cried after begging her to get the data for my masters degree's dissertation. I cried in front of her room all the way back to Shah Alam.

Made me think, why specialists act that way?

Did I in anyway challenged their knowledge? Should they feel offended by me? That is not my area, not my forte.Why should they feel that way? Parents have the rights to ask, right?? Aren't we your stakeholders? 

However. I will do everything for Alif, even for any of my kids.

I will.

I will just suck it up and swallow.

After I left the room, in front of the nurse's counter to make another appointment (which she didn't tell when to meet up after that, as if she just gave up on Alif), I was overwhelmed with what just happened. I was intimidated. I was sad. I was furious. My chest was filled with mixed feelings with all the negative feelings, it hurts. I recite astaghfirullahalazim.... to calm me down, many many times. I was in vain. My eyes start to tear up. I covered it and with all the strength I have I took the date for the next appointment and left for the pharmacy.

Owh, where is the father in this picture?

He was there. He sat beside me. He listens.  He didn't comment a thing. I gave the bill to him to settle. I know I had to make the decision. I had to work hard. His hands clean, while I do the dirty work. Never bother to attend to any therapy sessions, but he was always there for Dr. Sofia's appointment, at least to pay the bills. Btw, there was another incident at the pharmacy whereby the pharmacy gave only one bottle of Notrophil even though the dose has increased. I was sceptical and ask, why there was only 1 bottle. Before it was 2 bottles. If the dose increased, certainly the number of bottles increase right?? The pharmacist was perplexed and agreed to call Dr. Sofia to confirm. Just as I suspected, it was calculated wrongly. I don't blame anyone... Not the pharmacist or Dr. Sofia. Human err. Just to share to you that we have to be extra cautious especially with medicine. That incident, should never happened. Right??

Ok.. ok... I was angry, to be honest. I was just angry that I have to pay almost RM500 every time seeing Dr. Sofia just to feel like this. Like I am the laziest mother in the world, that couldn't care about my child, that I cross my hand everyday and just let the teachers teach Alif without me helping even a bit!

She made me think I deserve to have a child with learning disability.

She made me think that Alif is the results of me being a stupid mother!

It ruined my whole day. The whole week. Even now.

Ya Allah, you gave me Alif as a test of my faith to You. I know You will not give something that we can't handle. Therefore, please give me strength to face this.

I made a phone call to Puan Muliani. After we spoke a few minutes, she remembered about Alif's case. She made a promise to contact me. Promises are just promises.

I will call her after this entry and seriously will send Alif to her special program.

Costs?? I can tell you it is quite a lot.

As I mentioned before, ANYTHING for my kids. As long as I am capable.

InsyaAllah, Allah guides and help us along the way.
That's what makes me closer to my creator... All of this...
I know Allah chose Alif to be special for a reason.
I know Allah chose me to be Alif's Mama for a reason too.
I truly believed that.