Today Stephen's lips look good without any more blister or ulcer. Really am thankful to my mom who nursed Stephen for last Friday night. She's always so mindful of us & her grandchildren. When Stephen came home on Sat morning, his lips look better than on Fri. Then I listen to how my mom took care of him the whole night without much sleep and I told myself I got to try to be more conscientious of my role as Stephen's mommy.

Confession: I'm not so dedicated & often a sleepyhead & dreamy person... but I try to be a bit more mindful & less of a scatterbrain these days. Helping Steph to put on an extra long-sleeve shirt & socks at night to keep him warm, secretly applying "Oral Aid" on his lips when he's sleeping & deliberately doing it at different time of the night, creating a powerpoint slide on Thomas & his Friends for him to enjoy as he listens to audio stories from Thomas series,... seems like an accomplishment. Indeed for me, I am real glad that I could be with him through these moments.

My rewards: Steph calls me "mama" more frequently upon request these days. He would also say "please" of his own without prompting when he wants me to help him with something. Yesterday I walked away from him after being "assaulted" by him (dont know why he's upset) and then he came running to me with his arms wide open and cried. I told him that it's not right to slap others and he needed to say "sorry". And he said "sorry" a few times.

A thought : Explaining to Steph after I've physically moved away from him (at the initial setting) is much more effective than staying at the same place and trying hard to tell him "this this that that"( unsuccessful attempts on several accounts). I suppose my action of walking away signals a transition for him into a different situation. That's something quite interesting. Transition... hmm... I often thought of how transitions can be incorporated into our interactions at home with Steph without being too deliberate.

Just watch the video clip from "The Autism Acceptance Project". I like what Jim Sinclair, an autistic person & advocate, wrote in his essay "Don't mourn for me".

"Approach respectfully, without any preconceptions and with openess to learn new things and you'll find a world you could never have imagined."

That's somewhat my lessons learnt from interacting with Steph. He's always giving us surprises... sometimes pleasant & other times not quite the way I would like it to be. Nonetheless, it's a test of my endurance and resilient mindset, of how weak and ugly I can be. But when I'm more willing to treat him as a person and accept him for who he is, I begin to see his strength and beauty, and also sometimes his reason for reacting the way he did.

it is tough to give stephen medicine whenever he is sick. we thank God for the maid who love him, even thought of putting medication into sweetened drink for him.

stephen's speech is moving onto what is known as"Echolalia". this is a term that describes the repetition of other peoples' words. supposing to be a sign that his speech is developing. very often he will repeat what we say therefore we are careful to use words / sentences that are meaningful to his situation so that when he use it, a positive / essential reaction takes place. this is to help him know that words have "power " to move thing. isn't that biblical? As God spoke, the world was created.

for me the 2 greatest challages now are (1)how to help him express whenever he is fustrated. now he resort to "violance" kicking and hitting pp. can be very painful. (2) how to have him walk when we are out shopping etc. often he want angel to carry him and that's very tiring. his current pram is already starting to give way. makes it hard to go places too.

my observation tell me also stephen is able to "feel" strongly the love of pp for him. of course i am in 4th position when the family is concern. maybe now 5th. the other day, he actually took deborah's hand to have deborah bring him downstair to the car instead of me. similar situation happens in sch and church too.

in sch he willingly go with teacher Hanazah (teacher for 2006). and when his teacher for 2007 was sick, he didn't even wanted to take the thomas train picture and go with the teacher that was taking over. austistic child has a issue with socialising? that makes me think again, maybe they are good at choosing who they want to be with.

His new year at sch has started. and the school got a different teacher to teach him. he is also having a 2 student to one teacher this year. last year was one to one. supposely his is improving so the teacher -student ratio went up.

was a shock to us and believe stephen too when we know that he is going to have a different teacher. i guess for me, i am happy that he got a teacher who love him as a person, not just cheers when he is able to complete a task. usually we are only happy when a task is done but we seldom celebrate the effort (effort not necessary = result). i believe he should be happy in the process of achieving the task we have set for him. so we will wait and see what happen. he still look out for his 2006 teacher. so his 2007 teacher got some catch up to do to win his trust and favour. just like me.

Dear titi , I know that you are not comfortable when you drink medicine. I know you always stick to mama, right ? Do you want to come to a tea party or not ? What food would you want?
from Jie Jie Deborah

Stephen is down with an infection from a blister on his lips. It has swelled & covers about half of his lower lip. He hasn't been going to school for the past few days. It's especially hard to medicate him as he struggles alot and would spit out the medicine. Apart from the blister, he's also coughing and the phlegm makes his breathing difficult. Really seek prayer support and hope that he'll be well soon.

Stephen is down with fever, runny nose and cough. He hasn't been very "healthy" since end of last year and is almost sick at least once a week, sometimes during the weekdays and other times during the weekends. Pray that he can be well soon because it's difficult to feed him medicine plus he's not verbalising his discomfort, so it can be agonising watching him slump in one corner quietly. It's almost like watching him "suffer in silence"... not a good feeling... well, I do talk to him sometimes and tell him that I understand that he's not feeling good but it's something that he got to bear with... and the thing is he would look at me in the eyes though he doesn't say a word.

Daniel & I have been playing with Stephen at our own time with him. Daniel would sing to him "Ye Shu Xi Ai Xiao Hai Xiang Ai Wo Wo Wo" (4 stanzas). Stephen enjoys this song and would respond verbally to the "wo wo wo", "ni ni ni", etc. He would even complete the last word of each line. This song appeals to him. With me, Stephen and I have fun with "BINGO" song (from Barney). He would anticipate the clapping movement and holds his hands preparing to clap. His eyes would open up widely with enthusiasm as his lips move slightly. Very fun for both of us.

Stephen is now OK putting together a 35-piece puzzle from the Thomas The Tank Engine series and has no problems in fixing them up. He's quite good with different puzzles and doesn't need a frame or picture to guide him along.

Now for the not-so-easy areas... Moments that he's upseting me these days are his unpredictable mood swings. He can be quiet and agreeing at one moment and the next, start slapping me FOR NOTHING! It's so frustrating because he does it only on me. Somehow he can be really sweet to me and yet angry with me for the minutest thing which sometimes I've no clue. Especially when we're outside the home, I'm afraid of him being "triggered by things(???)". These are the things(???) that we have no control over. For eg, in Sun School, it could be his friend's aeroplane or a train or even food that he wants badly. When he cannot have it, THAT'S IT! I'm starting to be apprehensive in stepping into the creche and sun school classroom at times because I don't know what would trigger off his strong response.

From the perspective of the autistic child, he is not capable of differentiating between what he can have and what he cannot have. So it really calls for a great deal of sensitivity on everyone's part to accommodate. Reality is harsh and the pain not only hurts Stephen but frankly also me. Plainly put, if there's some toy or food that cannot be shared, please keep it out of sight from Stephen because the entire process of managing the aftermath is a long and tiring and "can be discouraging" process. Really seek everyone's kind understanding...

The other day Daniel shared that Stephen was imitating words from the song "Jesus loves me this I know" and the boy was singing to the music that's being played... How encouraging and sweet it is to have Stephen proclaiming that "Jesus loves him" despite his disability. Isn't it our belief that God saves whom He loves? How comforting to know that in spite of all these challenges in life, we can have the hope and assurance of a perfect body when we see Him face to face one day.

It sometimes seem so hopeless and helpless for us in this state, but when we look at life not as an end but as a passing phase from here to eternity, that someday Stephen might have a perfect body is a joy and hope that I always think of. Despite all these, I still think that we are blessed. For the love from family members, understanding given by friends and the countless comforts and joyful experiences, they are all blessings to us.

Last Sunday, Stephen came home from church with a swollen index finger. There was an open wound on his finger. Then he came down with fever for the day and next. He was very quiet and hardly cry at all even though the wound was big & deep. Now, the wound has dried up and he's feeling much better.

I'm trying to "negotiate" with Stephen on his insistence to always want me to carry him from ground floor to our home on the 4th floor. At ground level, when Stephen shows signs of wanting me to carry him, I would tell him that I would carry him when we are at the 4th floor. Then I would point at the sign that reads "1st floor". Usually he would whine and struggle along the way but I would try to encourage him to "hang on" by pointing at the signs on different levels as we make our way up. Then finally for his good behaviour (i.e. to walk up the floors ), he would be carried by his "great favourite" i.e. me at the 4th floor or course! Even though our journey up the stairs is sometimes like tug of war but I'm happy that my goal is met. :)

Today we did something different from the tug of war "thingy" as we climbed up the stairs. It was raining so heavily in the afternoon that the floors are all wet. Stephen stretched out his arms and wanted me to carry him. This time, I thought, I could carry him in case he slip and hurt himself. It was a very sweet journey for us. As I climb up the stairs with him in my arms, he gave me many kisses and smiles. Especially when I said, "You're a heavy boy and mama needs encouragement to carry you", he'll bless me with his kisses. A very blessed time together with Stephen indeed.

Stephen has taught me many lessons. I learn to stretch myself a little more in loving, accepting, accomodating, playing, keep trying, trusting, praying, making adjustments, ... so much more. Perhaps I am the greatest beneficiary!

Sometimes I would talk to Deborah about the adjustments that we need to make and perhaps we should "have another boy XXX as Deborah's brother instead of Stephen". But she would always say "no". These days, she would also add in "don't tease me about this". She actually knows that I tease her... quite funny I thought. Really thank God for Deborah's presence in our family. She's really really our angel because she would often surprise us with her understanding and sense of things which happen. And it's pretty acute at times.

Last Saturday, we had a good time at the playground in the morning and at the beach in the evening. We played on the swings and see-saws. Stephen was so relaxed and happy when we played with him at the playground. At the beach, he sat on his pram quietly as I talked to him about the surrounding. Daniel and Deborah made sandcastles and both of them dug a big hole to put Deborah in it. Also, Daniel and Deborah interacted with an autistic girl and her mother while they were playing with sand. It was good fun for us all. And not to forget, there are many more "Stephens" are there who are also trying to have a relaxing good time. So, let's be mindful of how we can use concrete actions in showing that we care as we stretch ourselves a little more from being mere empathetic.

Thank God for watching over Stephen and Deborah for the past year. Both of them have grown in their different ways. Especially when Stephen needs a different sort of management, our Deborah jie jie has got to learn to accomodate di di's style of doing things.

Just a few days ago, while I was managing a very difficult Stephen, Deborah took out a book "Kevin's World" and started reading it. It's not as if I haven't read it but somehow I don't have the supersonic spirit to remember the things that I should be armed with as I manage the boy. So, that became a refreshing moment for me as I read the line to talk calmly and firmly, not to yell and don't talk too fast because it's like he's in his own world...

Then, I thought about this thing : does Stephen understand or does he not? Wonder how long I'm going to be learning this lesson as long as Stephen is with us or the other way round... Not always a breeze, not a breeze, can't even opt myself out of this. Much trying, much prayer, much trust... in things seen and not seen... need to lean on the Lord and trust in His purpose. It turned out on that day, Deborah and I had a very good time reading the book together. Each of us took on a different role as suggested by Deborah. The story had a swap in characters. Kevin became Stephen, David became Deborah and John became Caleb (On why is Caleb a character in this story, you could find out more from Deborah). Through all these, Deborah and I also strengthened our bond as both of us claim Stephen to be our baby and we agreed that we would always take care of him.

Here are some observations and thoughts on Stephen's development over the past months.

1) Language Production
Stephen has been responding positively towards our prompts for him to repeat after us. Especially when he initiates interest in something, for eg. food, he is likely to repeat "Please, I want to eat" after us more readily than before.

This evening, while I played the piano, Stephen sang "Twinkle twinkle little stars" in both English and Chinese. He would be upset when I tried playing other tunes for he would stop me from playing and reposition my hands on the keyboard.

2) Sponge
Can't think of a better image than "sponge"... I remember one morning in Nov/Dec while I was in a corner obscure from Stephen's sight, I heard him said, "t-e-d-d-y b-e-a-r ... teddy bear". I was amused that he did it a few times before I realised that he was doing so and after which he continued on for some more time.

A few days ago, at Annie's place, Stephen was looking at a flashcard and he pointed his finger at each letter as he said it "x-y-l-o-p-h-o-n-e ... xylophone". I didn't even noticed it and it was Annie who directed us to look at Stephen. After that we clapped for Stephen and said "Good job". Guess what? Stephen looked at us eye-to-eye and he smiled, and he spelt out the letters and tried to say the word again.

Moments like these are not always here for us and when they happen, they become celebrations. It's like Stephen has stepped into our world or that we've stepped into his. For a moment, it seems like we are together, not just the bodily presence, but the understanding that we share as he looks directly at us and we look back at him.

Besides these, Annie shared that she even heard Stephen singing the whole offertory song (from Sun Sch) on his own.

What does all these mean for me? What does that mean to you? I take on the voice of Stephen's mother and would appeal to some of you to consider this... you're one of his teachers at the Sun School, what would you do for this little boy who appear to be a phantom who would be taken out from the class when he become noisy? Are there other possible ways of managing this situation? Is this boy of worth to you? Are you willing to factor this boy and his condition into your class? Do you believe that he could "absorb" some things from you as his teacher? Do you realise that he is aware of his environment including you?

I cannot answer all these questions and cannot provide you with solutions to engage him fully at all times. But this thing I know - I cannot do all these by myself or just with Daniel or Deborah's involvement alone. I may choose to remain silent or choose to believe that through the voice of a third party Stephen's cause can be taken up. But, I decide to choose this platform of communicating my concern because I know that some of you care for him and are in the position to help him with the existing arrangements. Not so much as in appealing for help or extra involvement, rather to initiate this thing about having Stephen in mind when you are in the capacity to so. Much thanks if you could facilitate. Perhaps when you start doing so, you will start to notice that Stephen is real and there are actually many more Stephens in our midst.