Learning Update - 12/10/2015 - 30/10/2015

I thought it's time I started having proper account of her learning progress no matter how small it seems. Initially I've wanted to do a weekly account, but she needs more time to learn as the 'skills' get harder. 

For 3 weeks, I had her learning to trace lowercase 'c', 'a', 't' in individual worksheets and now she is tracing the word 'cat' - and identifying it with the meaning. I made the tracing worksheet myself as it is difficult to find the exact one that I had in mind. I have a few more words in mind for her to trace. My logic is that now that she is older, she might find it too childish to just trace the alphabets individually and she might not see the point in them. After she managed to trace the alphabets individually, I had her progress to words to enable her to see the usefulness of these alphabets in forming words. 

Currently, she is also learning to write 'c' independently on lined paper (with no tracing). She is still working on keeping within the lines, and differentiating between the uppercase and lowercase c when writing on lined paper. 

She is relearning her counting skills. We do this every few days to have her recognise the numbers and it's value. Currently, she is still struggling with 1,2 and 3. She will be able to write numbers 1 and 2 when I hold her hands and guide her at least one time. then she can finish the rest of the work. (It is actually fluctuating progress. Sometimes she can write the numbers 1 and 2 even if I did not touch her - but only show the number. but sometimes she seems to need the extra touch to have the confidence - I can see it in her eyes, when she wrote her first few words and looked at me for confirmation. She would smile so sweetly if she had it right) However, If I simply gave her the paper and pen, then asked her to write 1 or 2..... she usually ends up with writing the number 2. For the number 3, she is still struggling to differentiate between 2 and 3. She needs someone to at least touch her hand lightly (I usually just touch her little finger) and she would trace/write the number. I think it's just a matter of self-confidence. I will be having her trace/write all the numbers 1,2 and 3 everyday so that she doesn't forget. 

It is the same for colour identification. I tried in our mother-toungue (Chinese) to gauge her ability to tell the colours. She made a few mistakes - what else to say for English. I guess I am starting again from the beginning - to teach her all the skills that she learnt and mastered in the past few years. This time, I am determined to make it more systematic and make it a point to revise whatever we have learnt again and again - even if it means it will take longer for us to progress to new things. 

But one thing I am happy about is her attitude in learning. It has been a daily routine for us, to start working after dinner. After I had a short rest and when she sees me taking out her worksheets, she will arrange the chairs and wait for me to start. 

She manage to sit there and do her work for around 30 minutes to 1 hour, which is a great improvement. Sometimes, I'd let her have 5 minutes break in between, and she happily skipped off and came back when I called. :)

Updates.... progress in Joy (sort of)

It has certainly been quite awhile since I updated this space. I check in everyday, to go through the blogs I follow, but does not seem to feel the need to write. Rather, I am not feeling very chatty. Anyway, as usual, there always seem to be something that prompt me to write something. So here I am....

         As for progress in my daughter, I can see much improvement in her daily living skills. Improvements are good, though they do pose more problems at times. She is quite independent nowadays when it comes to changing her own clothes. She changes into her pajamas when it's almost bedtime (sometimes on her own, sometimes with a reminder from me), and when she wakes up in the morning, she would change into her day clothes - all by herself. She automatically will pick up her clothes and put them in the dirty pile. BUT - with this, she also started to exercise her preference of clothes. At times she would wear the same blouse and shorts for days, until I step in and throw them into the washing machine, at which she would reluctantly find other clothes to wear. She even knows to put the clothes she wanted to re-wear, after changing into pajamas at a place or hide them in a bag so that she can wear them again the next day. I caught her observing me, when I purposely try to get the clothes she laid nicely on the chair for the next day. The moment I touch the clothes, she ran and took them away.... hmmm.... somehow I don't mind. As she shows a character where she would protect what she wants. As long she doesn't make a fuss when I insisted on throwing them into the washing machine, I am ok. Previously she didn't or rather not know how to choose pajamas that matches in colours, now she would go and search for the matching sets first. But she knows if she can't find the matching ones, she can always wear whatever she found. So there's flexibility.

          As she is taller now, she started to cast her sights on higher places - upper parts of cabinets, top of closets and cupboards, upper part drawers... anywhere she was not able to explore before. (did I mentioned that she loves 'exploring?). She learnt to make use of chairs and stools, and even canes to climb and open doors which we kept closed with special hinge - not too sure what it's called. With her new problem solving skills, we have to be more diligent in keeping an eye on her - believe me, she can cause a real havoc. An example of an incident was at her grandmother's place. I was late from work, and she was to explore on her own while her grandmother rested. In less than 20 minutes (I was told), the grandmother began to get curious since the girl has been quiet and out of sight - that she began searching for her. Alas! This naughty girl got her hands on her uncle's new can of hair wax (put on top of the cupboard) and brought it upstairs and started to 'wax' the newly laminated living room floor, grandmother's bedroom floor, chest of drawers and her bed! When I arrive, the grandmother was exhausted from cleaning and mopping the place over and over again. - Her poor knees really hurt for the next few days. Though this incident did not surprise me at all, (she did this all the time in our own house - but we manage to minimize them by not letting her out of our sight at all) - it really shows how things will get more and more complicated as this girl grow older and older.

         As for her feeding herself, it depends on her mood or rather the type of food served. When she is back from school, she will usually feed herself 'coz she's really hungry and keep out of her sight. For dinner at our own home, she would sometimes want me to feed her or she would not eat at all - especially if the food is not her favourite. I had to insist on her feeding herself at least half of her plate before I feed her - or if I'm feeling lazy, I'll let her off for not finishing her food. Scolding her will not solve anything - and I do have to pick my battles with her.

        She has learnt to bathe herself too, with someone (grandmother or me) sitting outside the bathroom giving instructions - clean here, clean there...etc... hopefully she will progress to cleaning herself without instructions soon. She knows to take her bath towel and head to the bathroom with minimum prompt. Perhaps this is partly because she does feel hot and stuffy in school uniform for the whole morning.

       We usually have to pack at least 5 sets of the children' daily clothes to bring to my mil since they bathe there during school days. At first I tasked my son to find and pack the clothes every Sunday/Monday. However, since my girl now has preference of what clothes she would like to wear, she sometimes would take out her clothes (packed by brother) and change with her favourite ones. That's good, right? At times when she did not like the choice of clothes at grandmother's place, she would comply by wearing whatever she has and change them when she got home. I don't mind this, as it's better than her previous behaviour of insisting not to wear anything she didn't like that we had to let her re wear her school uniform (after bath) and change her when we got back home.

         Another skill/ compliance that makes my life easier is that she will respond when ever we asked if she needs to go to the toilet when we are not at home. As a habit, she would go to the toilet before we go out. But if we are out and about, which we often are, I'll just have to remember to ask her if she needs to go... she will quickly pull us/ or run to the direction of the toilet. At times when we forgot to ask, she would simply pull us to the toilet direction. Now I'll just have to figure out how to get her in the toilet and close the door for her business. Plus we are still working on her learning to wipe herself after toilet.

        Though I could not say that she has improved in her speech, we will sometimes get short forms of certain words that she wanted to say. We are still working on her in this area - as she is really stubborn in imitating sounds or producing sounds that we wanted her to learn. We had to be be creative to get her to pronounce/ say certain words all throughout the day so as not to make her feel that we are 'working' on her speech. But one thing I am happy with is that she willingly respond with some sounds/any sounds, if I am searching for her. If I was resting on the sofa, and I can't see her anywhere from my position, I'll just call out, and she would respond.

       Most of the time she is very compliant to my requests. If I need a rest after work, and her brother is not around to help me keep an eye on her, I'll ask her to sit on the swing with her favourite toy or book (the swing positioned strategically where I can see her from my resting position). AS I drifted in and out of my naps, she will be sitting on the swing until she sees that I am awake.

        Her interest in music seem to increase, though not in a way that I know how to handle. I haven't manage to figure out how to expand on this. Whenever she listens to songs a few times, she would be able to hum along the exact tune. She may not sound the same lyrics, but she would hum them with her own lyrics.... wah, wah, wah,.... lalala, papapa... etc.... Any idea how to expand on this?

    What else.... for her academics, she has shown some interests in maths and colouring. She is still not writing independently, but as I gently hold her hands when doing her maths exercises, she has the strength in the movement of the numbers she is writing. She is still working on addition of 0 - 5 with visual help. As for colouring, she knows not to colour out of the line, but still not able to control the strength. At times when I am not free, and she is feeling hardworking, she would put her colouring book or her maths book on the dining table. I usually do work with her on my own work table, but her brother does work on the dining table. I like to keep the dining table free from books when it's not 'school' time. - So I guess she knows that by putting the books on the dining table, she will get my attention. (just a wishful thought). Whenever I am coaching her brother with school work or spelling, she seemed to pay attention and would sometimes came near to peek at her brother's work. Plus she loves to flip through her brother's kindergarten books. We just have to be careful not to let her tear them apart. We have not manage to get her to mend this habit. Her own school books are in such state. sigh

      Since we are getting to the end of the school year, it is time for me to gear up with some preparation to teach her more consistently - I'll have around 6 weeks to work with her during the school holiday before she enters Primary 3.

Updates on Joy....

I have been itching to write something about my daughter, but somehow whenever I wanted to start.... there's no words. I have no idea where to start or even what to write. I wanted to write something different, something that can lift my spirits, that makes me realize that - oh! she seemed a changed person!

     But, that's not the case. On the other hand, I am a changed person. In a short period of time I turned from a career driven wife and mother, into a worker - who is only satisfied with the small increment in salary each year, while watching the others climbing up the ladder to 'success'. Yes, 'success' as defined by different individuals. I used to be one of them, where success was defined by how big is your salary and how great is your position at work. I still remember myself during those years. The years before the diagnosis...

     I wrote about my first few years after the diagnosis here, here,here,here,here,here,here and here. 

     As I went through the posts I wrote over the years, I wondered to myself - 4 years? It seemed so long...

     Don't get me wrong. Though it's been hard on me and hubs, we still managed to find beauty and joy in the little things. God has blessed us abundantly. Our life has not been the 'hell' that we initially thought it would be. On better days, we chose to look on the bright side, and saw miracles happening - everyday. Yes, with the bleak 'future' deemed on these children with autism, I see miracles whenever I see her learning something new. 

     Back to the present time, we are still struggling. Struggling with the everyday life - at work and at home. Struggling to learn to cope as both my children are growing older each year, each forming their own personality. Struggling as I try to understand and struggling to guide my daughter to learn what she needs to know - in life skills and knowledge. Struggling as the son is slowly beginning to realize and sometimes resent the sister's condition. Struggling with the biological clock inside me, still yearning for another baby, yet too afraid to have. Struggling to cope, keeping my mouth shut - from sharing stories at home with colleagues - as they never seemed to understand - thinking that I overreacted to everything. Struggling to live a normal life - as only could be defined by us.
Don't get me wrong. I know every other family will have their own struggles. My family is not THAT unique. But then, we all learn to cope. And when the struggle become a norm, it will be less of a burden and more of a blessing. 

     My daughter has improved greatly. I have been told that by the few who have the chance to meet her 4 years ago. Yes, I nodded. Yes. She improved. But she has not improved to the phase where she is accepted without discrimination in mainstream schools, be seen as different and well - just difficult, don't bother me with her kinda attitude as shown by others towards her. They can say all the right things, but I have learnt not to even heed them - as I could see the change of expressions and tone when I asked for any little favour concerning her. - Yeah - when she doesn't bother them, all is well. 

     If I could shield her from these people, I would. But I have to face reality, that I could not shield her forever. My heart ache for her when I see her in situations like this. But she has to learn to adapt to the community - however difficult it is for me, I am sure, it's harder for her. 

     Arrgghh.... this post must be the most disorganized post I have written. (I doubt others were organized). I just type whatever that comes to my mind. I might return and do some editing, but what the heck - I am going to post this and share this out. - I might not read this post again in another few months. Besides, I am not writing for the money. So, my apologies to those who find this a bore and a waste of their time. 

Digging in...

I am blessed....

          Yes, I am blessed. I feel blessed. I am very thankful to God for all that He has made possible in  my life. 

        I am saying this though I am not feeling well myself, my children have not fully recovered from flu, and hubby is overworked. Why this sudden burst of faith?

             Well, God has opened my eyes and taught me to be grateful with what we have. I was waiting outside my daughter's occupational therapist office when an old grandfather started chatting with me. His grandson is having speech therapy and later to go for occupational therapy as well. He told me that he and his wife is solely responsible for this grandson of 5 years old, since his parents divorced. The father has since gotten married again and had 2 more children. And he never gave his parents money for taking care of his son. As for the mother, the grandparents were not willing to part with the grandson though she is willing to care for him herself.... but she works full time with no one else to look after her son while she is at work, unless of course she gets a nanny. Well, the background aside, the grandfather is worried about his grandson who has been diagnosed with autism. 

             When the grandson came out of the Speech Therapist office, he had to wait for his appointment for Occupational Therapy. And I get to observe him.... He can talk very clearly, though his grandfather said that he tend to repeat words by himself. And he can write and read. I am impressed as he wrote numbers, the alphabets and Chinese characters on a piece of paper another lady gave him. And as he wrote, he would read them out loud. AND he is only 5 years old! The grandparents never taught him all these at home. He learnt them in school. I told the grandfather that this boy has a bright future. But further explanation from the grandfather dampened my spirit. This boy, who has been drinking sweetened water his whole life, is hyperactive, has the tendency to hurt himself due to his hyperactive condition, slept only a few hours at night (that the grandparents even resorted to sleeping pills) AND the thing that saddened me most is that the grandparents cannot afford more therapies for him other than the monthly occupational therapy and speech therapy (I am not sure how often is the Speech therapy) provided by the government. Yet I strongly feel that this boy could be much better if he had more interventions. 

          As I was driving home after the therapies, I kept thinking about this boy. Though it's not nice to compare. And even worse for me to find comfort in another person's pain, I began to feel Grateful. 

          My soon to be 6 years old daughter, does not talk as fluently as this boy. She can't write nor 'read'. Yet. (I am not sure if she can read in her mind - just not out loud). She had to be taught certain things over and over again (we are still doing basics, which we have been doing in the past 3 years). 

       BUT... 

1. I am blessed that she has mild temper which makes it easier for us to cope with her.

2. I am blessed that she has improved so much in these few years, because we were able to afford her early intervention programs. I even believed the early interventions helped with her sleep at night and now I am grateful that we do not have to resort to sleeping pills.

3. I am blessed that those days of sleepless nights plus shrill screaming at night for me is now over. (she will have some sleepless nights but very far in between).

4. I am blessed with a supportive and loving husband, who has been my pillar of strength.

5. I am blessed with parents in law who are supportive and rejoices in every little achievements.

6. I feel blessed for my education, with which I am able to understand and explore the infinite possibilities to help my daughter.

7. I feel blessed for my occupation, with which I can still contribute financially, and at the same time still able to spend time with my children in the afternoons, weekends, and school holidays.

8. I am grateful that, financially we could still afford her extra therapies and learning materials. Though we are not rich, and still have to be careful with our expenses, God has truly been generous to us, by providing when we needed most.

9. I am grateful for all that she has achieved. It is through hard work and resilience both from us as parents and in herself. I can sense in her, that she is very happy with her own achievements. Whenever she was praised for doing a certain thing right, the chances of her repeating the action is quite high. She is improving in her speech, imitation and self help skills too. 

I believe there will be more to come.....  Amen.

AND....

Please keep this boy in your prayers too. May the good Lord open his father's heart to care for his own son and contribute to his emotional and financial needs. May the grandparents find ways and means to provide for his extra therapies which they know of, but unable to afford. And finally, may this boy continue to improve and be blessed. Amen.

"You can come back and try when she is older"

".... perhaps you can come back when she is older. Then it would be easier for us to teach her." I get this as parting statement for the second time we tried to send my daughter to a learning centre in town. The first centre she went to was last year. Yesterday, after a very long consideration and asking around (and great recommendations from friend and pastor), we finally visited another learning centre in town. I was initially very relieved and happy to see the advertisement which includes "We have special needs class" printed. But I guess we had our hopes too high. In less than an half an hour (the supervisor ushered both my kids into a class for evaluation), we were told that they cannot accept my daughter. ".... perhaps you can come back when she is older. Then it would be easier for us to teach her."

It was a solemn reminder and wake up call for me. For both of us. If a learning centre who do cater for some special needs, also refuse to accept her, what other hope do we have of her going to a typical primary school? I was devastated. I was crushed. I cried. For the whole day today I felt like a walking zombie. I couldn't bring myself to smile or laugh... I don't even feel like talking. Fortunately school exam has started, I do not have to teach but only supervise the exam. The hours felt so long, my heart aching, my headache making things worse. 

I felt that there is nothing I can do. I felt like giving up. I did. For a moment, I did tell myself that - that's it. No more. I surrender. God has really overestimated me this time. I can't handle this any more. Enough is enough. 

But....

I knew I couldn't and wouldn't give up. This is my daughter. My flesh and blood. There is no way that I could just give up and let her be. 

And I know that if I didn't do anything, nobody else would. 

Please Pray for me. 

The brighter side of things....

I promised myself that I must consciously remind myself to look at the bright side of things... especially when it's about my children. Especially if it's about my children. Well, this post is just to remind myself of some of the things we (hubby and I) found amusing and can be considered improvements in our girl.

Her kindergarten teacher has been telling me that my daughter has started to observe her friends' mouth when they are reading. Previously, she would cover her ears when they have read together sessions. But the teacher slowly had her listen and sometimes even to try to sound out the words. (not often, but she did look like she is trying - with her eyes looking with concentration at the teacher's mouth and her own lips moving). The teacher is also trying to teach her to sit on the floor with her legs crossed, instead of half kneeling, and sat on her own feet. Actually I have no problem with the way she sits, but according to the teacher, she might feel painful if she sits for a long time with her sitting position (I agree) and she is much taller than her friends when she sits that way too. She sits in the front row, and naturally will block her friends. (remember that her classmates were all younger than her). Well, what I am trying to say is, my daughter really attempted to learn how to sit like her friends. The teacher is very pleased with her attempts to position her legs and all, that even though she has not been able to do it yet, the teacher is very confident that she only needs more time to practice. (I am so glad the teacher is so optimistic).

At home, we have been asking more of her. I'll ask her to go and get her own pajamas or day clothes. She will bring them to me and with minimal help, she will change her clothes and picked up her clothes to put in the laundry basket in the kitchen. While she is on her way to the kitchen, sometimes I would remind her to close the kitchen door, which she would do after she puts her clothes into the basket.

Joy is slowly getting used to climbing up and down the staircase again. (she seemed to forget this skill when she went to my parents' too often and she was not allowed to climb upstairs).

Her daddy often asked her to bring things to him. His handphone, her toys, and others. She is more willing to  get the things for him, and sometimes she even have to look for the things before bringing them to daddy. (we did not purposely put the things for her to find.)

My daughter has learnt (or is it natural for girls?) that by smiling sweetly, she could have the adults do things for her. When she wants to have snacks, she would get the container and hand it to an adult and smile sweetly with anticipation. Even when we require her to say something, sometimes she would just nod as answer and smiled. When we asked her to give us something that she is playing with, and she didn't feel like giving it to us, she would just smile sweetly and run away. - the power of a smile that I have yet to overcome. (most of the time we find it amusing that we would laugh and let her off)

hmmm.... there are more that I can't remember, but this list will do for now. Even typing these makes me feel better. Well, there's always a brighter side to things, if only you look hard for it.

Praying....

I am praying for both my kids to be well as soon as possible. The boy has just recovered from fever and flu while the girl gets the fever bug after he's better. At the same time, she also has stomach ache. Only this morning she went potty with watery poop 3 times. It's the dreadful weather these days. It has been raining everyday... and lots of people gets sick. I pray that everyone will get well as soon as possible - for a healthy and happy reunion dinner this Saturday.

Just for the record, I need to describe some of the things my girl did yesterday. My instinct told me that she was unwell when she woke up up so early in the morning. But both hubby and I just can't figure out what is wrong. She seemed a little heaty, but no fever, and her running nose has stopped after a dose of medicine the night before. Anyway, her teacher had an experience of her life.

The first incident was when she smeared her face, hair and uniform with the icing from the bread her daddy prepared for her snack in school. Gosh... the teacher learnt the hard way, not to trust her too much. (usually the teacher can trust my girl to get her snack box, open it and eat whatever she brings - all by herself (except for noodles) - but she was shocked to see her when she finally had time to take notice of her. (by the way, I think it is important to remind myself that my girl is in the 5 year olds class instead of her same age (6 year old) - some of the other students also need the teacher's help to feed and clean up.

The next thing she did was to play with the stamp pad they were using for art lessons. She saw a friend playing with it, (the teacher punished the student and puts it on her table) and the cheeky part is, she went to the teacher's table to play with the stamp pad when the teachers were busy getting the students ready for the 'train' to the toilet. When she was discovered, she had smeared her uniform with the colours from the stamp pad. The teacher tried to wash the colours off her hands and arms - perhaps she scrubbed too hard, my girl told her 'thong, thong' (pain, pain) - of course the teacher told her, she should feel the pain, since she needs to scrub hard to get the colours off. (imagine the grandmother's response when she saw the smeared school uniform)

To make things worse, my girl peed while the teacher is trying to clean her hands. Gosh - I would have lost my temper. And it happened at the busiest time - going home time.... Phew... just listening to the teacher relating all these to me make me feel tired. But deep in my heart, I think I have an answer to her behaviour. - She is not feeling well. And amist the class' busy and noisy movements to pack their bags, finishing their water bottle, and amidst the teacher's 'nagging' while trying to clean her - she just lost it - and does not know how to inform the teacher that she needs to go to the toilet. hmmmm..... Am really praying for her to get well soon.

Grandparents' Love Therapy #16

It is very, very encouraging to see my little girl showing improvements day by day. As usual, we sent her back to my parents' on Friday afternoon. And I heard her 'communicating' with my parents! Let's see:
1. She called my father 'Wai Kong (grandpapa) - two times, continuously. The first time, she said voluntarily, as she wanted grandpapa to do something, and I asked her to repeat - and she did! (previously, she called both my parents (Wai) only - the shortened form of Wai Kong (grandpapa) and Wai Po (grandmama).
2. She said 'Ban Mang (help) - when she needed help with a measuring tape she discovered.

During the two days there, Dad tried to be stern with her and require her to do handwriting practice - unfortunately, she is not in the mood to cooperate. Mom brought her out to play with the other children - she was so happy that she did not want to come back in. Oh... by the way, she spontaneously called 'Di di' (brother) when she saw a neighbour's toddler - and she looks so happy when the boy called her 'jie jie (sister).

On Saturday night, when I phoned, she just finished cleaning up. As mom answered the phone, my little girl went to her basket and brought her pajamas to grandmama. That was the first time I heard her doing this without being told to do it. That night, dad has a dinner, and will only be home quite late. After mom told her that grandpapa will sure be back, she finally went to bed. (or else, she waited in the living room, and kept looking outside - eventhough she is sleepy). She puts her feet on grandpapa's pillow (I think just for the security feeling) - and she woke up for awhile when dad needs to move her position to get his pillow.

All of us had a short nap at my parents'. A 45 minutes drive in the rain is quite exhausting (even when I am not the one driving). Besides, Joy took my hands and lead me into the bedroom to nap with her. It feels so good to be needed like this :)

At home, she spontaneously spoke so many words, that I have to try my best to remember them. Hmmm.... She said 'Yao chi - want eat' happily and climbed onto the dining chair when hubby came back with packages of food. She happily surveyed the vegetables - but today we did not buy her favourite vege. But we discovered something new! She actually tried the green broccoli, carrots and my sweet and sour soup!!!! Wow! She has always been very picky when it comes to food, and today she tried all three with no fuss. She even showed hubby that she wanted the soup in her plate (by spooning the soup herself and transferring into her plate, way to go, girl!) Later, as she is still hungry, she went to get a packet of noodles and handed it to hubby. Hubby asked her to bring it to me. She said 'yao chi, and 'chia' (meaning eat in both Chinese and Foo Chow)

Mom confirmed something I observed awhile ago - that my girl would not repeat what she has already said. Perhaps she does not think it is necessary and it is very 'rude ' of us to kept asking her to repeat her words. I am going to keep this in mind, and not to force her to repeat her words so many time....

All in all, it has been a great ending to my weekend. Gan ba teh, my girl!!!!

... He will turn my mourning into gladness; He will give me comfort and joy instead of sorrow.

~ Jeremiah 31:13

More updates

It has been quite awhile since I recorded any changes in Joy. The professionals working with Autism has been telling me that these children will always change. They will go through phases, just like any typical children, - but the only thing is, with these children, you will never know what to expect, or to predict what phase they are going into.

Good news;
Recently, Joy has been communicating her basic needs more willingly and more often. - almost everyday. We do not have to coax her to do it. It's encouraging - but I think she needs to step up and speak more words instead of the usual 'yao - want', and 'er liao - hungry'. She has mentioned 'mian mian - noodles' the other day, when she saw us cooking noodles. When hubby asked her if she wants to eat noodles, she answered 'dui - right'. And when she can't wait for the eggs to cook, she said - 'er liao - hungry'.

I saw myself how she showed her possessive streak. We were at my parents' house, and both the kids were waiting for my dad to come home. My son opened the door wide for grandpapa to come in, but as soon as he gets closer to grandpapa, Joy, who was observing from far, rushed to grandpapa, made some sounds of impatience, grabbed grandpapa's hands and pulled him away from her brother. - As a bystander watching this, I could not help but laugh. My daughter loves her grandpapa and she did not want to share him : )

She has been using tricks to lure the adults away, so that she could do something that she's not allowed to do. At home, when she wants to do something we do not allow, she would do it in increament - when she thinks we are not watching. eg, she wants to go upstairs. I remind her not to go. she would sit or play on the staircase, and slowly worked her way upstairs. She kept her eyes on me - whenever I looked at her, she would come down a little, or just stop where she is. When I wasn't watching - she would quickly climb up a few steps. If I did not comment anything - she would be upstairs. As soon as I called out to her, she would come down.

When she needs to change (especially her pants), I would ask her to go and find it herself from the basket. She could wear her pants quite well now. I just have to work on her taking off her shirt and wear without my help. Then perhaps teach her to match her clothes. (A phase her little brother is in now)

Bad news;
She has been playing with urine! She would put her hands or a toy into the potty. When I first discovered it, I was so angry, that I spanked her and take away the potty. Now the potty is kept in the kitchen - with the door closed all the time.
I think she did not know the difference between the urine with water. Recently she loves playing with water. She would push a chair to the kitchen wash basin and turn on the tap to play with the water. She also goes to the upstairs washroom to do this. (Now I locked the washroom all the time) I have been thinking of getting her a small pool to play with. sigh - have to add that item in the budget.

She has been licking her felt soft toys, putting them in her mouth until it's all wet. Ewww.... and she puts key chains into her mouth too. The chain part. sigh.... I have no idea how to help her in this. She would not want anything 'safe' I gave her. The other day, she eats the egg shell, right in front of hubby. MIL asked her to eat her own eggs while she goes to the washroom. She puts the shell into her mouth, and when hubby noticed it, she refused to open her mouth and instead quickly swallowed it.
Any ideas how to approach this?

Denied because he is autistic?

I have came across some articles where people with autism were denied their rights in various ways... just because they are autistic. In this post, a man was being denied his chance of having a heart transplant because he is autistic. Is there anything more disgusting than this? God created us all. Who gave these people the rights to determine who deserves the right to have a heart transplant, and in this case, who gave them rights to determine the people who do not deserve it?!!!! Did God set the rules that those with drug addiction or murder cannot enter Heaven? He is ever so loving and accepting to those who are willing to repent. People with autism did nothing wrong that made them autistic. God made them as they are. They do not deserve to be brushed aside, in any way. 

One Word.

I have only one word for some people who are supposed to be, if not the front line, are at least the second line of this battle with Autism with my girl. Here is for you. DISAPPOINTMENT!

Revision for me - 'Ten Things Every Child with Autism Wishes You Knew'

I've devoured books after books on anything related to my daughter's diagnosis. After sometime, I tend to forget some of the things I've learnt. Recently, I took them out and re-read them. One of the book I finished is .

It is written from the perspective of the children with autism. The author really worked on making outsiders understand why these children behaved in certain ways, how they think and how to help them. There are some points that relate to my daughter, while some did not. This is normal, as there is no two person with the diagnosis that has the exact same symptoms. Any way, it is a book worth reading, if you want to understand the spectrum.

Onwards to a better tomorrow!

Life will never remain static. What is the norm for today, this week, this month or this year, may not be the same tomorrow, next week, next month or next year. 

2 years back, after the birth of my son, I thought life is going to be smooth flowing, without much distractions (except for the minor ones of course). Little did I know just how wrong I was. That year, my life started to change bit by bit, as I began to see red alert here and there in my daughter. It took a total turn, the day we got her diagnosis. From a 'naive' woman who knew nothing of the disabilities in the world, whose life is only focussed on family and work, I began to aggressively learn all I can salvage from all sources anything related to my daughter's diagnosis. I 'locked' myself into my family and children more than before, spending 101% of my energy on them, and at the same time trying to  work. I now wonder how I could have survived the first year, if I did not have faith enough in God and the support from my husband. I am not a very devout Christian. I did not even go to church services regularly. But the first year after the diagnosis pushed me hard - to every church we could find, desperate to find one that could accommodate to our needs. (my girl could not sit still, let alone be quiet during a service).

Now that I've survived 2 years on the journey, I now agree that a person's personality is moulded by the environment she lives in. The inner, more aggressive, no nonsense personality in me came to the front line of the battlefield. Hubby and I have to make crucial decisions every now and then. Tough decisions that could help her for the better (or the worse). One of the latest big decision is the decision of not sending her to her special classes. So far, we have not regretted the decision.

Another decision that we made recently, is to start dieting and lose weight to a healthier range. We are both the type that eats when we are stressed. Our weight ballooned in the two years after the diagnosis. Hubby started playing basketball again and me? I started attending yoga sessions this week. It wasn't easy to leave the children with MIL, even if it's only for 2 hours, 2 days in a week. Leaving them with her once in awhile in the afternoon, when work requires, does not make me feel this way. It was about work. But sourcing out time for myself, totally for myself, makes me feel guilty. I could have used the time to teach just a little bit more? Or rest a little bit more? (yoga is tiring, and there sure will be muscle or joint pain the day after). Even sitting here, I have backache, pain in the arm muscles and stomach. I am hoping these will lessen, if I continue to attend the classes for a period of time.

But one thing for sure, I am beginning to feel that I am getting my life back on track. A diagnosis for my daughter has not ruined my life to a level where I could not get up and stand tall. A colleague once asked me, 'Why do you always look happy all the time? You did not look like you have a daughter with special needs.' My spontaneous answer to him? " Do you expect me to cry and look down hearted all the time? I have to take care of myself, so that I could take care of my children. Keeping sad or negative thoughts are not going to help me." In my heart, I knew that I am on my way to my own healing. Healing from the hurt of all the dreams that have been crushed by the diagnosis. These dreams may or may not come true, but I am bracing myself to work and live and enjoy life as much as I can, and I believe God will never give me anything that He knew I could not handle. Praise the Lord!

Methods that helped

With only over 2 years of journey with autism, I have come across various methods that claim to work for children with autism. Here are a few that have worked for Joy. (I have to give credit to her previous Autism center) These are some of the techniques I have learnt from them, and some from books I borrowed from their library.

1. ABA - Applied Behaviour Analysis
- she has learnt so much from this method, though I tend to modify it, to prevent her from feeling that '"Oh, now I have to work, mom's got the therapist look on her face." Nowadays, I will use this method spontaneously all through the day. I do not restrict her to table and chair, or in a closed room, as suggested. Initially (past 2 years) she did go through the rigid setting, to train her compliance, but it's stressful on both of us.

2. Teacch
- a programme to teach independence. I love the structure this gives, but have yet to implement it at home. It requires lots of preparation before and after. It is more or less the same as the 'workbox' system most home schooling parents have been using. (This shows how every child crave and thrive on structure, instead of just children with autism).

3. Occupational Therapy
- There are few things I've learnt from Joy's OT. But she is no longer around for Joy since last year. I managed to glean a little from her and more from books. Here are a few things we did with Joy, when needed)
- Previously, Joy started with sensitivity towards people. She disliked people touching or hugging her (except for me, or her favourite teacher). I learnt to hug her tightly, a few times everyday (though she did struggle for awhile), and after a few weeks, she is no longer too sensitive to touch. She even lets her daddy hug her. There's a theory about reactivating her senses in this, but I am very forgetful when it comes to this. What's more important is that it works for her. Hugging her tightly is not the same as hugging her as we normally do. It was real tight, with massage effect. Tight, loose, tight, loose....
- her motor exercises helped to calm her down, when she is hyperactive, or when she laughs uncontrollably. (we have swings in our living room where she can go to whenever she needs it.) We also let her jump on the bed or even the couch. Actually we have a mini trampoline for her, but I put it away since little brother tends to follow and join in the fun. He was too young at the time. hmmmm, perhaps it's time to take it out again.

4. Speech Therapy
- I learnt a lot from our speech therapist too. The most important characteristic to be a good speech therapist is lots of eagerness and enthusiasm, that could attract children's attention. One has to be patient, and truly sincere in playing with the children to help initiate speech. Yup, I did say play. In my opinion, every parent has the characteristic to be speech therapists. They just have to change their 'I'm an adult' attitude to a child's'. It takes me awhile to do that. And I am still learning - to make a fool of myself , singing, dancing, making silly noises and generally be a 'big' child myself. But of course, being a speech therapist is more than that. They have been trained in various ways and means to reach into the world of children with disabilities. It's really not easy, if you are not interested in this field.

5. Love
- This is the most important. I kiss and hug my children all the time. And I request Joy to kiss and hug me too, throughout the day. I have heart to heart talk with her (with me talking all the time), and convince her that I will not give up helping her reach her greatest potential. (of course, there are times when I am tired and resentful, but these feelings go away and quickly replaced with guilt. I love my baby girl regardless of her condition.)

6. Pray
- I am sure that God is watching over her, and guiding us and other adults around her to do whatever is appropriate to help her reach her greatest potential.

7. Brotherly love and acceptance
- I had to add this in the list. Little Jay has always looked up to his sister. He watched out for her all the time.  He is unconsciously a little therapist in our home. He talked to her, and forced her into his play (in a way only a child could do to another child), quarrelled with her and protected her. He is always aware of his sister's presence and whatever she is doing. Things that he knew we disapprove of, he would stop her or alert us. (though sometimes he'd follow, to try to get attention from us. But he would stop when we reminded him).

* this list is made only from my personal experience and point of view. It is by no means a proper guide.

Do they really care?

Do they really care? Over the two years my little girl attended the special class for Autism I have often wondered about the teachers. At times, they made me feel that they are superior in their knowledge in teaching children with special needs, and I am so inferior, that all I need to do is to leave everything to them. However, at times their conversations and attitude towards these children made me feel that it's just a job to them. Do they really care about these children, when they opted for this job? They made me feel it's just something they need to do, to earn a salary, for their living. Besides, these children hardly improves. This is the impression I get whenever I tried to discuss or share with them my daughter's achievements at home. They always seem so sceptical, as if I created these stories to convince myself of her abilities.

After a long absence of 2 months from the special class, hubby went to the centre, to bring back Joy's personal belongings, and to get the deposit back. What he described made me feel so disappointed. The teachers who taught Joy ignored him the whole 5 minutes he was there. Yup, he was there only for 5 minutes, and no one bothered to ask about my dear daughter, who was their student for the past 2 years and 4 months. Her tuition teacher also ignored him. No one bothered to even talk to him. The clerk just handed him a plastic bag of Joy's personal belongings and the deposit money.

Do they really care? If they do, I would have expected them to enquire how is Joy doing now at home. All her teachers have my handphone number, and no one bothered to call or send a message asking about her. Her tuition teacher for the past 2 years (she stopped tuition this year) never showed any concern over our decision to pull Joy out of the class. Do they really care?

* Note that previously I referred to them as Joy's therapists, but now I felt that they totally do not deserve even to be called teachers. They are just concerned with the salary they earn, to the expense of the parents of special needs who they made to believe are helpless without them. With Rm 280 only for 19 afternoons of 3 hours, and the teachers often starting late and ending early... It is not worth it, especially with the very low expectations and low motivation they have to teach these special needs children.

# When teachers are the bullies

This is a link to a video about a parent who took actions when he discovered that his son with autism was being bullied in school.

This is a scenario that I have been afraid of when my daughter starts going to school. So far, I have only changed her preschool once, and is rather satisfied with her preschool now. But I know I will have this fear, every year, as she starts a new year, with a new teacher. And the cautious feelings throughout the year will never go away, as I need to be alert of any changes in my child, and keeping up with the news in school.

e,ai,e,ai,oh.... an update on speech

I can imagine my self singing the song Old MacDonald for quite some time. For the past few weeks, Joy has been 'singing' E,Ai,E, Ai, Oh. She just suddenly started with this, and I tried to help her to at least keep these sounds and expand from there. So, I have been singing the song whenever I can, and stopping at e, ai, e, ai...?? and waited for her to finish the 'oh'. : ) I am happy to report that she almost always made it. I am trying to take it slowly, and hopefully her interest in this 'song' will help her with more words.

By the way, she has been very spontaneous with using pecs again (by herself) at home for the past 2 weeks. She has the pecs book in her school bag, but I stopped implementing pecs at home for the time being, due to the little brother who likes to imitate his big sister to get our attention. Well, since she is taking the initiative to use pecs again at home, I am prepared to follow her lead, but is still trying to come up with the best ideas on how to modify the system to fit our goals for her to read the printed words instead of just depending on pictures. I have a few plans at hand that needs some practical trial and errors before we know which one is best for her.

Anyway, again I am happy to note that Joy has certain sounds that she made, such as 'eat' and 'egg' - note that these are truly in English. and 'zu' (cook), 'zhou' (go), when she wanted to eat, and she pulled us to the kitchen and asked us to 'zu egg' (cook egg). When I fetch her from her therapy, she would say 'zhou' (go) if I linger too long to talk to her therapists. She may not say these every time or everyday - but I am sure this is a start. (I seem to say this every time she starts with a few words- but I am feeling optimistic every time and I refuse to think of this as just another set up for disappointment.)

I'm glad to be of any help....but....

I am not sure if this is good or opposite. Since The Diagnosis, some colleagues who are closer to me have been very helpful and understanding. They made life easier for me, when it seems like hell. But as walls have ears (not sure of the appropriate phrase) This information about my child have spread and all of the sudden, people has been coming to me for advice or just for more information. But this is revealing too much of the world that I am not prepared to explore. I have come to realization that this community is so ....huge. While I am struggling with my own problems, I had to comfort others too. In fact, I think knowing more about my child has been more comfort to them and discomfort to me.

Now, why would I say this? It is nice to share and help others right? But it seems that everyone that comes to me for advice has VERBAL child with the diagnosis. I mean VERBAL! Guys.... my child is NON VERBAL - (at least for the time being - I have every faith that she will overcome this - GOD - I OFFER UP THIS PRAYER TO YOU. YOU ARE THE MIGHTY HEALER. PLEASE!)

It is much easier to teach a child if she is verbal. When I give these people encouragements, as their child is verbal, my heart sank. I am just so jealous of their child's ability to speak. I just can't help it. Only this afternoon, two adults came to me with different stories about 2 different children who just received their diagnosis. I shared with them my experience and how I handled it. And deep in my heart, I hoped that there will be other people who would be sharing with me - how they would handle a 5 year old non verbal child. Are you one of them? Please? Can you share?

"I did more than you have ever done...."

This phrase resonates in my mind over and over again. A man came to me this morning, trying to start a conversation about my daughter. I knew him and a little about his family, which is why I am cautious when he came to my table at work. I knew that he has a child, also with The Diagnosis. But I also knew that this person is an intimidating person.

He told me that he did a whole lot more than I could have ever imagined - for his son. - Who by the way, could at least speak and tell his parents that he needs to go to the toilet. I was thinking to myself, that did this father know that there are a whole varieties of people with autism out there? I did not even try to explain to him what I know, since he kept going on and on about perhaps he could be of help to me and my daughter. Hmmm...A lot of help he has been (after only a 5 minutes chat....) he made me feel that I have not done enough for my precious girl.

I sacrificed my career for this girl. Since she was born - with or without the diagnosis, I have made her my first priority. I transferred and change my work place, just to be nearer to home, so that I could take care of her in the afternoons. At the same time, I refused a promotion. (which equals to almost rm1000 increase in salary per month!) Then, after her diagnosis, I risked my promotion again, by requesting for adjustment in my time schedule, so that I could be with her during her therapy in the morning (during my work hours), and last year, I took a half year leave from work to be a stay at home mom, to take care and teach her at home. We have been contemplating of moving the whole family back to my home town, where my parents could help to teach her, and we would be able to send her to a much smaller school of only 6-7 students per class in primary school - but this means that I have to apply for transfer again, and get myself settled in another work place. - I have even been contemplating of going back to my parents every weekend, which means an 1 hour drive each way, so that my parents could try to engage her and teach her. But we have other plans for our boy - to join Sunday school, and hubby being in the Church choir, - which means that we will be rushing here and there, even during weekends. There will be no rest for me and hubby. What else could I do? We spent all our savings on this child. We had her on GFCF diet, which is not cheap.... and how about all those learning materials I made and bought for her? Don't they mean anything? and the PECS we have been applying and trying to modify all these while?

Anyway... I have come to the conclusion that its up to the person to think how much one is to sacrifice oneself for his children. For me, though I realised that there will always be more I could do... I could never be able to do them all. And I prefer to trust in God to do His work.