HIS THOUGHTS

Back to Pathlight

2009-01-01T22:57:00.002+08:00

After months (literally) of struggles, BJ will be back to Pathlight.

Why? Was it not a wish that we have always wanted, to integrate him into mainstream education?

I feel that I have to be answerable to many for a decision we made.

It was a selfish decision. However, I truly think that it is a good decision for now.

Come Back Kid

2008-11-18T23:31:00.003+08:00

I am back, after two years of silence. BJ has grown into a boy. Still battling autism, but more communicative and loving.

The verdict after six months

2006-11-16T22:37:00.000+08:00

Aiyah.... The verdict was passed today. BJ is not ready for mainstream.

My dream dashed for some moment. Even as I write this, my eyes are kinda teary, I am filled with a pent-up mixed emotions. To have someone tell you right in your face: "James is not ready for mainstream" came like almost, a death sentence.

The teachers are mainly concerned about his social communication skills, and his constant shutting down and withdrawal (hibernation).

Deep down, I know that perhaps BJ is not ready for mainstream yet. But to hear it from the HOD and class teacher was definitely unpleasant.

What shall I do? I cannot continue to indulge in self-pity. I am begininning to think that his autism is in fact moderately severe. And maybe that is just one reality that I have to psycho myself to accept.

Sigh, the road to acceptance is such long and winding....

Surprise Visit

2006-10-04T23:08:00.000+08:00

I had a surprise visit from BJ yesterday.

He visited me at my office just before 6pm, after he went on a fishing trip with LJpa.

He talked to me for a while.

BJ: Mum, are you going home?
Me: No dear, I have to work late today. I will go home later.
BJ: But mum, you have to eat dinner.
Me: Yes, I will eat dinner later, alright? You go home first.
BJ: Mum, we [daddy, Lauren, and BJ] will miss you!
Me: Oh..... I know, I miss you too. Daddy is waiting, can you go home with Daddy now?

How sweet! I would not have expected this kind of conversation with BJ. That made my day. And now, I am really feeling very very guilty spending time away from the family doing my master's.

My Own journey

2006-09-03T22:46:00.000+08:00

Much has been written about him, and his thoughts.

I realize tonight that if I were to go for therapy, my goal would be something like "how to bring BJ out without feeling anxious".

I felt really down when I brought BJ out. As he played with his peers, he just could not play with them. He played with himself, or lived in his "mickey playhouse" and reenacted every scene in that show.

My heart broke. No, more than that, my heart bled. My body began to experience an unknown fear, I could not let go. This is a journey less travelled. I thought I have somehow walked a good part of it. But i am wrong, I may only be at the beginning.

God, help me!

The days of young

2006-08-30T19:33:00.000+08:00

BJ saw his new born photos for the very 1st time. At least, he recognised himself - the baby fresh from the womb, with umbilical cord attached....

Then, he had the most shocked, most horrified look on his face. He asked, "Why am I hurt in the picture? Got blood, and tummyache." And he started to cry.

Man, how to explain that? I tried my best, and told him that he would never have any blood and tummy like that in his life. But, again, he couldn't comprehend.

But, that's an experience to see your baby photo. Now I permanently hide his new born photos in the drawer.....

Transitions at Pathlight

2006-07-30T22:37:00.000+08:00

Transitions are not easy.

Just heard from MR that BJ is throwing massive tantrums at home. However, MR did not tell us until tonight.

Was surprised to hear that. MR did not want BJ to cry, so she gave in to him and his requests.

Sounds like more child managing issues from the home front. May be MR should go for courses in managing children with autism.

Alright. Til I came up the solutions, I will work hard on managing his tantrums at home.

Macam stressful....

How was BJ's 1st Day of School

2006-07-23T16:59:00.000+08:00

Many have asked this question. How was he on the first day of school?

Well, he was grumpy and sleepy. Then he warmed up. And it went well....

有图为证

Pathlight week

2006-07-22T18:42:00.000+08:00

This week has been eventful....

He peed in his pants (again!!) on wednesday.

His pants were too loose that they started to slipped down his waist when he did gym on thursday. It was "jump, jump, pull up pants" sequence. (no photos)

Friday was racial harmony day. He wore his chinese boy outfit. He looked cute! Mummy made gui hua tang yuan（桂花汤圆) for him to bring to share with his friends. Mummy had her own Racial harmony day at Daybreak office, and so did Chilli Padi, where she wore a Spanish outfit and named it Eurasian.

The Handsome Ring Bearer

2006-07-17T10:57:00.000+08:00

This is BJ at rehearsal

BJ was Vien's ring bearer. The simple yet elegant wedding took place on 1 July @ Traders.
H
e was soooooo handsome in his tux. He told me he was scared. Half way through, I let go of my hands, and off he went by himself. He did better than expected, without Lauren, and managed to march down the aisle. What a proud mother was I.

The teachers/aunties were all concerned that he would freeze and not walk. But then, he managed his emotions quite well!

It was a good experience for him! Such outings help build his confidence, and esteem as well. Now, he knows what he can achieve without peeing in his pants (haha)

BJ on actual day

Pathlight!

2006-04-21T19:47:00.000+08:00

He may be going to pathlight soon.

Yes....

Another phase of his life....

His IQ Test

2006-01-26T14:30:00.000+08:00

BJ took an IQ test two days ago.

His verbal IQ score will be low. I knew it. The examiner ask, "What is an umbrella?" He could not answer. Instead he drew and wrote the word "umbrella". I think he does not have sufficient vocabs for that kind of conversation. Likewise, question like "What is a pig" will not get an answer "an animal". If I ask Lauren, "What is a tiger?" She will say, "It's a mammal" :D

His performance score should be okay. He does look like a boy with average intelligence. I have never wanted a savant child, and I think he does not look like one as well. I just hope that he can grow up and interact with the rest of the society in a non-threatening way.

Apart from getting the results for educational placement, we have to pay a big sum (S11) for this test. So, I have to cut down the ang pow money this year!

Losing His Teddy

2006-01-20T10:34:00.000+08:00

For the first time in BJ's life, he experienced a loss. His favorite millenium teddy was lost. Aunty Melba took teddy to NTUC supermarket and left him there. When BJ came back from school, he asked for it. Only then, she remembered that she left it at the supermarket.

BJ cried for an hour non-stop. Stressful LJpa had to console him since LJmum was at school. At last, BJ understood partially, and stopped his tears. When mum got back, he narrated the same story, angrily.... Mum asked him to hug the doggie bolster that naniecheng bought him as a replacement. He agreed. He had nightmare, cried in his sleep. Even this morning, he told me the same story again.

The teddy was his favorite stuff toy. He would have missed teddy very much. Perhaps mum will try to make a teddy for BJ someday. (If mum has the time.....or during her school term break).

Poor boy. But, this is a good lesson for growing up.

BJ is a sentimental guy.....

Hair Cut

2005-12-30T19:46:00.000+08:00

Oh, it is soooo very hard to persuade BJ to go for a hair cut.

Finally, he agreed.

He had a GI Joe hair cut today. He hated it. He was angry with the hairdresser. He touched his head almost all the time.

He looked like a baby in his new hair cut....and He hated it!

Haha.... Will upload a pic when I take one "Botak" head shot. (Hee Hee)

Ten Things

2005-12-23T22:33:00.000+08:00

Somethings I read today from the mailing list.

1. Be sure to have a life other than one of autism. Everybody in your family should have some interests and other friends, totally unrelated to your child's diagnosis.

2. Find two or more babysitters who you can trust, train them to work with your child, especially around communication, safety issues and routines, then be sure you get out of the house once in a while to do grownup things!

3. Trust yourself first, then trust the professionals. You know your child best.

4. Educate yourself, not just about autism intervention but also about special education law. The sooner you do this, the sooner you will know how to advocate effectively for your child in order to be sure he or she receives an appropriate and quality program. Other parents of children with autism are invaluable for this type of help.

5. Do NOT try every "cure" you hear about. Before you put your child through anything, decide if it's worth the risk, if your family can handle it, if it makes sense, if you can handle the financial demands without other family members suffering, etc. Avoid unethical people, whose main interest is to make a buck off of our situation.

6. Get out in the community and teach your child the skills he or she needs to manage some family outings. The earlier you do this with your child, the better chance of a "normal" family life.

7. Teach him or her a new skill that you know will be difficult, when BOTH of you are ready.

8. Take vacations. A change of scenery is a good thing. The key is figuring out how to make it work so that it's not MORE work than staying home. Your family should not be cheated out of family vacations!

9. Stay in touch with friends and family members who do not have children with special needs. Talk about your children, just as most parents do when the topic comes up. Be sure to ask about their children and listen with an open heart.

10. Enjoy your child for who he or she is.

Journeying with My Child

2005-12-14T15:46:00.000+08:00

Along this journey searching for sanity for myself (as well as my family) confronting autism, I am now more at ease with myself, my fears, my worries, and my capability as a mum.

I have not much to offer my BJ. We do not have speechies and OTs to work extensively on him. We do not engage in whatever therapy that come and go. We do not live a high life where we can afford to send him to all sorts of intervention.

The initial years were tough. Plagued with guilt, and hopelessness, we onced lived in despair. We are very much happier now. Grief took a toll on us. A long while. We learned to give up our grief. we learned to turn grief into strength that carry us through difficulties. We learned to commit our grieves to God.

BJ has grown much from his initial years of non-compliance, and being in his own small little world. We share his joy when he laughs, we share his tears when he cries, we provide a shoulder for him to sleep on. We had fun together!

My heart is full of thanksgiving. Indeed. A heart full of praise.

Overgeneralization

2005-12-06T14:10:00.000+08:00

What a word - overgeneralisation. Children with autism normally do not generalize enough to know how to act consistently in varied settings and contexts. However, my BJ is overgeneralizing in this area:

HE DEMANDS AN APOLOGY FOR PEOPLE WHO WILFULLY AND ACCIDENTALLY DISTURB HIM.

Sounds strange. He demands it from his father, "Daddy, say sorry to me." Or point to someone who offended him, and tell me, "Mummy, tell XXX she cannot get angry at me."

What am I going to do with him? Headache lah!

Looks like the social scripting is in again....

The Script will look like: sometimes accidents happen when people knock into me. When they knock into me and do not say sorry, I don't have to get upset. I can walk away, and ask for a hug/eat sweet/blow bubbles. I will feel better after that.

Underestimation of His Emotional Ability

2005-11-30T20:27:00.000+08:00

Our helper Gina left. The new helper Melba came.

It was not difficult for BJ. Not at all.

Though he asked for aunty Gin, he is aware that she has left our family to work elsewhere.

We have underestimated BJ's ability to handle such difficulties and loss.

He has grown.... He is no longer the two year old who knocked his head against the floor when Yolanda was gone.

It's been a long way, Baby James!!! I feel like celebrating now!!!

Explaining what "Death" Is

2005-11-24T14:08:00.000+08:00

How do I communicate "death" to kids? Esp to BJ?

When we explained that Daddy has to fly off to Sarawak because aunty passed away, we did not know how to tell him. Chilli Padi commented that BJ does not understand what death is. We simply told him that "Aunty died. Daddy will not see aunty again. No more aunty. Daddy sad sad."

Ren commented that he kinda knew it, because he got moody, and sad as well.

The only experience he could associate this death with, is kakak leaving.

There's difference between death and leaving. But, in some instances, they may look the same.

BJ at Dorcas Retreat

2005-11-22T15:07:00.000+08:00

BJ enjoyed the retreat, esp the children's programme.

He is such a lovable boy who enjoys the company of "older" kids playing with him. He even sat on Aunty Joyce's laps and sang with her.

He and Lauren are singing "Jesus You are My Superhero"..... Haha....

Yes, he was so thrilled with line dance..... He is going to perform "Beautiful Sunday" at his childcare's christmas party.... Yeah, I will be there.

BJ's 5 today!!

2005-11-04T20:49:00.000+08:00

BJ's five today!!!

Had a good time at his school (pm) when we celebrated his birthday. He was sooooo shy when classmates sang the birthday song to him.

His birthday is a reflection for me. It's about God's grace that He has seen the family through day after day, moment after moment. It is an enlightening moment to think about what God has done in BJ's life, and how that impacts our lives.

Definitely, BJ enjoyed his birthday. He didn't go to school this morning. We decided to keep him at home.....hey, since today is his birthday, why go school?!

Observing His Play

2005-10-25T11:54:00.000+08:00

I did classroom observation yesterday. It was, a fruitful, session. Saw what he played by himself and played with friends.

BJ is a boy of few words. But he is very attentive, a friend commented. I agree. He is always the silent observer in a group, waiting for his turn to speak or play. His gentle nature actually earns him lots of adoration!!

I wonder how he looks from Heaven's eyes? I smile as I write this. Though I raved about how depressing it is to have a child with autism, I know that God has given this special one to us.

Amen.

Being KS or Careful

2005-10-14T11:13:00.000+08:00

Most of BJ's cohort (born 2000) in his EIP has done their IQ test and are ready to be admitted to pathlight school. The school registration closed on 30 September 2005. AND, here am I, I have not done anything about it. I am thinking to defer him a year.

There are mixed comments. Some people say that I should not defer him and I should give him an opportunity to go to school with his peers. Why delay when he appears not to have an IQ problem?

As a mum, I grapple with this issue. Am I being kiasu that I want him to push him further? But, I am not definitely not doing anything about it. I am not sending him to various therapies, all we can offer are prayers, tender loving care, wisdom from God, intervention from GOD, decent EIP programme, and integration programme for him to mix with neutro-typical children. Occasional occupational therapy at KKCDU. That's all.

On the other hand, am I being careful? Am I really trying to "secure" his foundation before he enters a neuro-typical classroom of 30 children? Will I put him in EIP for another year while his peers are promoted to pathlight prep programme (K2)? I don't know.

Well..... I am rattling on.... I know...... One day this thing will come to light.... Perhaps I will be more certain.

A different Experience at the Zoo

2005-10-02T21:31:00.000+08:00

The last trip (months ago) to the zoo was not exactly a happy experience for us. We did not understand why BJ was so cranky. We didn't know what to do.

However, this Children's day's trip to the zoo was different!!

The sharity elephant's birthday bash was held at the zoo. The kids had a great time bouncing on the balloon float. BJ was raving and pointing at all the animals he saw while we were on the tram. We even went to see the giraffe feeding. A good experience for BJ and Lauren. They finally see how long the neck, and the tongue of a giraffe, and what the giraffe feeds on (leaves, carrots, apples).

They had a great time. Even BJ is keener in watching the polar bears.

I am glad that he is making sense of a zoo trip now, unlike before when he just threw a tantrum without saying anything. At least, when he is bored, he would suggest: "Can we go home now?" Then, I have to tell me how many more animals we have to see before heading home.

The zoo trip was fun....(worth my $ put in as friends of the zoo).

Am looking forward to the next zoo trip ;D

A Rather Disturbing Week

2005-09-24T20:56:00.000+08:00

BJ's teacher at ARC gave me some negative feedback about him. He seemed not "there" -- he appeared not to follow instructions, as well as peed in his pants for consecutive two days (Thursday and Friday).

Ok. When the accident happened on Thursday, I took it as an accident. Accidents do happen at times. I peed in my pants once when I was in P1, so what's the big deal, right? But he did it again Friday, after we rehearsed with him what to do when he needed to go for a pee. Hmmmm.....didn't work. HOWEVER, he is okay. He didn't pee at home. He can sleep through 10 hours without peeing. So, what's the problem???

Grrrr.....help!

I am going to have a script up again for him (and me) to surprise the "Naughty ShiShi".

It goes like this:

"When the naughty shi shi wants to surprise me by wetting my pants, I will say to him. "STOP. WAIT". I need to tell auntie Kathryn/Yoke Kheng I need to go to the toilet. I will pee in the toilet and surpise the naughty shishi. Then the naughty shishi will be gone. And I will be happy."
Inspired by the "Sneaky Poo" by Michael White, et al...

Fingers crossed.

STILL MISSING KAKAK (Episode 3)

2005-09-22T12:21:00.000+08:00

This morning, BJ made a comment.

"Aunty Gina get married, then kakak will take care of James, lauren, Papa and Mummy."

I asked, "Why?"

"Because kakak loves James".

Hmmm.....I said, "kakak is the one getting married. She is not coming back".

"I DON'T WANT". Major protest.

Came Gina, and BJ said, "Aunty Gina, you get married ah."

He is still missing kakak.

"I am sad. I want paper" (To write and draw is his way of coping with loss)

I dunno how long this will continue....I know no one can replace his kakak.

Oooooooo.....grief work.

Trying on the Page Boy's outfit

2005-09-20T15:46:00.000+08:00

Jessie, my colleague, lent me a Page Boy's outfit.

My greatest worry -- how to get BJ to wear it when he dislikes long sleeves shirt, long pants, and the bowtie?

Well, my worry is over. When i tried it out on him, he didn't fuss at all. I showed him in a mirror, how handsome he can be.

Now, the next step -- is to write a script for "How to be a page boy?"

It would be something along these lines....

1. Hold Lauren's hand and walk into the sanctuary.
2. The music will start.
3. Look at Leon kor kor.
4. Walk with Lauren to Leon kor kor
5. Don't look down on the floor, but look at Leon kor kor.
6. At the end of the walk way, sit down with Lauren on the bench.
7. Wait until the end of wedding.
8. Walk out of the sanctuary with Lauren
(I will have to source pics as well to prepare him).

As you see, children with autism learn best with pictures and step-by-step, concrete instructions. I hope this script will work out fine.....

I am soooo excited!! Now, gotta get an outfit for my chilli padi that won't eccentuate her tummy.

Ten Things Every Child with Autism Wishes You Knew

2005-09-16T13:38:00.000+08:00

By Ellen Notbohm

Here are 10 things every child with autism wishes you knew.

1. I am a child with autism.
I am not "autistic." My autism is one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings and many talents, or are you just fat (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)?

2. My sensory perceptions are disordered.
This means the ordinary sights, sounds, smells, tastes and touches of everyday life that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you, but I am really just trying to defend myself.
A "simple" trip to the grocery store may be hell for me. My hearing may be hyperacute. Dozens of people are talking at once. The loudspeaker booms today's special. Muzak whines from the sound system. Cash registers beep and cough. A coffee grinder is chugging. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can't filter all the input, and I'm in overload! My sense of smell may be highly sensitive. The fish at the meat counter isn't quite fresh, the guy standing next to us hasn't showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they're mopping up pickles on Aisle 3 with ammonia. ... I can't sort it all out, I'm too nauseous.
Because I am visually oriented, this may be my first sense to become overstimulated. The fluorescent light is too bright. It makes the room pulsate and hurts my eyes. Sometimes the pulsating light bounces off everything and distorts what I am seeing. The space seems to be constantly changing. There's glare from windows, moving fans on the ceiling, so many bodies in constant motion, too many items for me to be able to focus - and I may compensate with tunnel vision. All this affects my vestibular sense, and now I can't even tell where my body is in space. I may stumble, bump into things, or simply lay down to try and regroup.

3. Please remember to distinguish between won't (I choose not to) and can't (I'm not able to).
Receptive and expressive language are both difficult for me. It isn't that I don't listen to instructions. It's that I can't understand you. When you call to me from across the room, this is what I hear: "*&^%$#@, Billy. #$%^*&^%$&*" Instead, come speak directly to me in plain words: "Please put your book in your desk, Billy. It's time to go to lunch." This tells me what you want me to do and what is going to happen next. Now it's much easier for me to comply.

4. I am a concrete thinker.
I interpret language literally. It's very confusing for me when you say, "Hold your horses, cowboy!" when what you really mean is "Please stop running." Don't tell me something is a "piece of cake" when there is no dessert in sight and what you really mean is, "This will be easy for you to do." When you say, "It's pouring cats and dogs," I see pets coming out of a pitcher. Please just tell me, "It's raining very hard." Idioms, puns, nuances, double entendres and sarcasm are lost on me.

5. Be patient with my limited vocabulary.
It's hard for me to tell you what I need when I don't know the words to describe my feelings. I may be hungry, frustrated, frightened or confused, but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation, or other signs that something is wrong. There's a flip side to this: I may sound like a little professor or a movie star, rattling off words or whole scripts well beyond my developmental age. These are messages I have memorized from the world around me to compensate for my language deficits, because I know I am expected to respond when spoken to. They may come from books, television or the speech of other people. It's called echolalia. I don't necessarily understand the context or the terminology I'm using, I just know it gets me off the hook for coming up with a reply.

6. Because language is so difficult for me, I am very visually oriented.
Show me how to do something rather than just telling me. And please be prepared to show me many times. Lots of patient repetition helps me learn. A visual schedule is extremely helpful as I move through my day. Like your day planner, it relieves me of the stress of having to remember what comes next, makes for smooth transitions between activities, and helps me manage my time and meet your expectations. Here's a great web site for learning more about visual schedules.

7. Focus and build on what I can do rather than what I can't do.
Like any other human, I can't learn in an environment where I'm constantly made to feel that I'm not good enough or that I need fixing. Trying anything new when I am almost sure to be met with criticism, however constructive, becomes something to be avoided. Look for my strengths and you'll find them. There's more than one right way to do most things.

8. Help me with social interactions.
It may look like I don't want to play with the other kids on the playground, but sometimes it's just that I simply don't know how to start a conversation or enter a play situation. If you can encourage other children to invite me to join them at kickball or shooting baskets, I may be delighted to be included.

9. Try to identify what triggers my meltdowns.
This is termed "the antecedent." Meltdowns, blowups, tantrums or whatever you want to call them are even more horrid for me than they are for you. They occur because one or more of my senses has gone into overload. If you can figure out why my meltdowns occur, they can be prevented.

10. If you are a family member, please love me unconditionally.
Banish thoughts such as, "If he would just ..." and "Why can't she ... ?" You didn't fulfill every last expectation your parents had for you, and you wouldn't like being constantly reminded of it. I didn't choose to have autism. Remember that it's happening to me, not you. Without your support, my chances of successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are broader than you might think. I promise you I'm worth it. It all comes down to three words: Patience. Patience. Patience.
Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the gifts autism has given me. I may not be good at eye contact or conversation, but have you noticed I don't lie, cheat at games, tattle on my classmates, or pass judgment on other people? You are my foundation. Think through some of those societal rules, and if they don't make sense for me, let them go. Be my advocate, be my friend, and we'll see just how far I can go. I probably won't be the next Michael Jordan, but with my attention to fine detail and capacity for extraordinary focus, I might be the next Einstein. Or Mozart. Or Van Gogh. They had autism too.

Freelance writer and consultant Ellen Notbohm is a columnist for Autism/Asperger's Digest and co-author of 1001 Great Ideas for Teaching and Raising Children With Autism Spectrum Disorders (Future Horizons). She favors "common sense" approaches to raising her sons with autism and AD/HD. She lives in Oregon.

STILL MISSING KAKAK (II)

2005-09-12T20:55:00.000+08:00

How do you teach a ASD kid about the concept of missing someone? "Missing" is an abstract concept, I think.

BJ has managed to get a glimpse of that concept. By papa going to Hong Kong, and by kakak leaving us for good, he expresses himself verbally by saying that he misses them.

I am totally amazed. Tonight, after failed attempt to call kakak on the phone, he requested to draw. H drew a sad face with huge tear drops, with kakak in the aeroplane. Wow, that's powerful. I felt.

"Missing someone" would only make sense when you love.

"And now these three remain: faith, hope and love. But the greatest of these is love." 1 Cor 13: 13

Playground (alternate story)

2005-09-10T18:53:00.000+08:00

Brought kids to the playground. The playground's kiddos fav place. Lauren took few years to overcome the fear of crossing the hanging bridge. BJ just runs to the other side fearlessly. Noticed some difference in his experience today.

He used to slide down the straight pole pretending he's a fireman. Today, he decided that he's a pirate. Hey, it's fun.... (coz children with autism usually are rigid in play and lack imaginative play). AND he is playing pirate today!! Good job!! I do hope the next role would be something else....but definitely not pole-dancing!!!

Rigidity

2005-09-07T17:30:00.000+08:00

I wonder how to break BJ's rigidity.

He asks for paper and pencils 20 times a day.

He draws Mr Bean every now and then. He's totally fixated with Mr Bean.

I would like him to have a spectrum of interests....like other kids. Or, maybe, enjoying other activities and not only dig soil or pick up sticks at the playground to make fire (pick firewood).

Just wondering how to expand his interests....takes a long time.

I am a boy/girl - gender crisis?

2005-09-07T15:00:00.000+08:00

BJ's teacher from ARC went to his childcare for a site visit. Saw him sitting with girls during lunchtime. He does not sit with the boys. When the teacher asked the boys to take their food, BJ does not move.

What's wrong? Does BJ know that he is a boy????

I have to get the teachers to make him sit with boys now, or he may be mixed up with his gender.

What a day.....

Still missing kakak

2005-09-06T16:55:00.000+08:00

This morning, BJ took out our family photo and showed kakak to me. He wants her....

He said, "kakak fly in aeroplane go home no more kakak aunty Gina take care of BJ Lauren. I want kakak fly back come back".

I wonder whether he knows that his kakak will never come back. She is getting married to her cousin mid-September. Glad for her, sad for us.

We dearly miss her too.

Fitness training

2005-08-29T04:20:00.000+08:00

BJ has started on a fitness regime. He wants to walk and down the stairs from home. (imagine 8 storeys, huh?!)

It benefitted me....I am forced to walk instead of taking the lift.

POWER RANGER

2005-08-24T18:46:00.000+08:00

Power ranger ninja storm, mass riders Ryuki....
Posing as a mass rider, BJ charted into the room with his style, "hiaaaak", "hiaaak", went his legs and arms.....
And the mother, nearly drop dead.
Oh what a day. Boys are boys....

Chicken Fan

2005-08-24T09:56:00.000+08:00

BJ can start a chicken lover's club. I mean he just loves to eat chicken.
Last night he asked Aunty Gina (our helper/maid), "Aunty Gina, how come you never cook chicken?"
He can have chicken rice everyday.....dun matter whether chicken is steamed, braised, adobo, fried, or stewed. Chicken just tasted good!
It's great to live in a place where you can have Hainanese chix rice all the time!!!

Play

2005-08-11T13:33:00.000+08:00

One of the greatest, or great, deficit in autism is the lack of, of inappropriate, play shown. Eg, an ASD kid does not know how to play with peers, does not observe rules of games, or play solitary at the playground.

BJ is one such kid. He plays solitary at the playground. His playmates are all adults. Even Lauren does not play with him, but fights with him the smallest toy, the slightest attention. Sometimes I wonder who is not keeping the rules.... (hehhehe)

However, last night was a different scenario. I have the two kids playing hide and seek. BJ can lean himself against the wall, counted to 10, and began seeking for his sister. When he found him, they had a good laugh. Then they took turn.

It was sheer delight to watch them play. Then one of them invited the adults to join them. It was again, my heart was warmed by them.

Slept well last night (me). But, not for BJ. He had too much fun that he woke up too many times. Old wives tales....Dun get your child too excited or he/she will be crying in the night.

Hmmmmmmmmmmm......but it was worth it to see him grow socially.

Plenty of room for improvement.......

Next mission for him: To train him as a page boy for Leon's wedding....
He was asked to be a page boy for a friend next year July....

Mainstream Pre-School

2005-07-22T13:41:00.000+08:00

Since last week, BJ has been going to a mainstream, integrated childcare centre, 3X a week. He went happily the first week. In the second week, he decided not to go.... But obliged on the third day.

And he kena spelling test on his third day. I could not believe it. Maybe that's why he didn't want to go to "school", but happily prepared himself for his afternoon school at Autism Resource Centre. Gee I wish I could read his mind to find out what he is thinking, esp with regards to handling new situation. Sometimes, as a mum, I worry whether he can fend for himself in the "real world". But I have to say that God has been good to us -- and His love shows through people surrounding BJ.

Of course we hope that he will be successful in all areas.... And we pray that God will grant us this wish.

Would you tell people that your child has ASD

2005-05-24T13:45:00.000+08:00

People on the shoulders-sg support group (parents with ASD children) posted a question: Would you tell people that your child has autism? This email receives so many hits! People start telling people horrifying stories of how their children have been mistreated, wronged, bullied, etc....

What's my answer to the question? YES! I will. Painfully to narrate, but when his sunday school teacher commented to others that he was problematic and has "something less" in him, I really was very angry. I called up the person-in-charge of Sunday school, told him and taught that he would support me. And his reply -- "This is how the society and people will see our children. If someone were to come to help, I will be very surprised!". And guessed how disgusted I was.

That was the turning point in my life to tell people about BJ and his condition. I find others more accepting now, more willing to look into his interest.

But, now, the children in his sunday school class start to ask me weird question. A super-intelligent genius girl came to ask me, "Why is James so funny, and he talks like a baby?" It did not take long for that girl to recognize a deficit, but it may take a while for understanding and compassion to set in. (Such is a world where talents srufaced as jewels and the underpriviledged sunk and forgotten. Sad.) Now I have work to tell other children about BJ and his autism.

How would BJ think and feel about the girl's comment? I don't know. Do I care? Yes, I do. I care a lot, a lot!

Mother's Day gift

2005-05-09T08:18:00.000+08:00

Ha...it's been a while since I blogged. Today's mother's day. Yeah, what do I want out of today?

Sure that every mum with a special needs child hopes for a miracle on Mother's Day! :)

James and Lauren made orchid pins at Sunday School today. Was about to pick them up from class, but the teacher brought them down to the sanctuary. I looked back from my seat and saw my babies. BJ ran to me with the orchid pin. We hugged, and his pecked me on my cheek. How wonderful! I have not expected that!!! Wonder whether he knows what's the significance of mother's day, or what mother's day is all about. What a kiss speaks a million words.

This afternoon he wanted to poo....He ran to the potty, sat down, and did his business. As usual, I tell him, "BJ, tell mummy when you are done." Then I read newspaper and waited for him. And, I heard noises (potty on the floor, washing sound from hose). I rushed to the toilet, and to my horror, the potty was washed clean. The "sai" and toilet paper in the toilet commo, his bottom wiped, and he tried to clean his bottom with the water from the hose.

Of course, I cleaned him with water and soap. But in my heart, I was very proud of him. He did EVERYTHING on his own. Amazing 4 year old. And, of course, I showered him with praises and compliments that he could do these self care items all by himself. (Two weeks ago, we told the paediatrician that he needs help with toileting. But proud me now, he is quite perfect in takin care of his own self care needs).

I received my mother's day gift from BJ today!

A simple faith

2005-04-24T13:48:00.005+08:00

BJ sometimes requests for a prayer before he sleeps, and/or when he wakes up. One wonders whether it is his rigid routines and his rituals. Sometimes I also wonder whether he really know what he is asking.

But, i feel that it's a simple faith that he has. The innocent, childlike request for a prayer is just heartwarming. Allen was just thrilled with Bj's spiritual development!

It was a moment of silence for me. I am completely dumbfounded.

Anxiety Normalized

2005-04-08T11:54:00.000+08:00

BJ's teacher mentioned that he was quite uncomfortable with "strangers" intruding his classroom. As a result, his anxiety was high and he got upset....

Anxiety in children with autism has been highlighted. Am just wondering whether it has been over-highlighted, and felt injustice was done. SO sms a fren to off load.... She managed to normalize it as all of us experience some anxiety given the same context (unless you are really extroverted and live on people), just that we cope with it differently.....

To tell the truth, I am quite pleased with the answer. However, am not pleased with the teacher's comment.

Is anxiety the problem? Or is overgeneralization and highlighting anxiety the real problem.

Have the teachers experienced anxiety before? Probably yes. But could they have explained it differently? I bet they have never known what GAD is and that type of suffering one has to endure inorder to get well.

My thoughts tonight. Sounds like teacher bashing.... sounds like i will write an email to them as well....

2005-03-27T18:29:00.000+08:00

Jems James

Fuss Free Holidays

2005-03-24T05:35:00.000+08:00

We went on a holiday during the school holidays. Lotsa preparation for BJ to be able to accept changes and new environment. It went well....until:
He asked us to go home on the way to the airport.
He asked us every now and then where we are going.
He asked for kakak.
I forgot to bring his visual scheduler to make him understand what we are going to do everyday.
Well, all these we have overcometh.....

The last two days were the most difficult of all. He started refusing to say "hi" to people. He shut his eyes and ears to external stimuli. (unfamiliar people, unfamiliar language, noise level). Hey, don't we do that at times? I know I do.... I could be pretty shut-in if the external environment is too overwhelming for me.....

He started verbalizing (to his limitedness, of course) that while he was bathing, he got angry, and hit his father (poor Allen), dried himself, and changed. While his anger is short and impulsive, and will apologize almost immediately, I just still do not understand how his mind works -- whether he understands when his hand goes out to box someone.

I would say that my family members are very supportive. They commented that BJ has improved tremendously!! In-laws are not that encouraging yet. We broke the news about autism to them, and yet some of them understood. Some don't. That's life....

Well, overall, the week was a memorable one. It was accident free.

assisted tech for BJ

2005-03-02T13:03:00.000+08:00

Grrrr......

This is my 3rd time writing this blog. I need assisted tech for successful blogging.

To make things simple, I would like to create (if possible) some assisted tech for BJ. The softwares out there are too ex. And, not singaporized. Just log on to www.usevisualstrategies.com/products.html to see for yourself.....

I would like words to be converted to pics, and vice-versa. I would like to strings words or pics together to form sentences which he can express, and/or which I can teach. I would like to compose a story using words and pics. People with autism think in pictures, you know. And words are merely another symbols they can use....

Maybe i should actively consult you guys.... Snooze, Yveon, Shutterbug, Invisible, and Penguin for ideas. Maybe I should write to NCSS to get some funding so that my dream may come true.

Wish me luck.

"I am SAM"

2005-03-01T14:15:00.000+08:00

Watched "I am Sam" just yesterday. Very touched. Haven't watch many good movies for ages.

Sam (Adult with ID and austistic attributes), of mental age of 7, managed to fight his way through with the State, and gained custody of his 7 year old.

What he said to his lawyer is that he felt "normal" people did not have problems like his. Sure. But "normal" people have more problems, I feel. Sometimes blessed are those who are of simple mind and heart. Blessed are those who do not worry because they do not have to. Blessed are those who live happily and do not feel that they need to compare..... Blessed are those who knows God will take care of all their needs.

Sometimes it really amazes me to see BJ in all his innocence and purity in requesting for grace before meal. He is being routine. But I think sometimes I have too many choices that I put aside my routine to talk to God.

These are special lessons we learn in life. Through people whom society labels as special needs.

This brings tears in my eyes.

Observation in His Classroom

2005-02-22T22:37:00.000+08:00

Yesterday had a chance to observe BJ in his school. There was (or still is) a bully. Or rather a boy who is totally unaware of personal boundary, and just sweeps his arms and hands all over. His arms hit and pushed BJ a few times.

How does one deal with bullies? I know, I will cry and attract attn. Bj shouted to me: He go and beat me XXXX (name of the boy). And he told his teacher, He go and beat me XXXX. Yes, BJ can complains, and can tell off his friends, "Don't taake James'....That's mine". Thanks to Lauren who also fights with him.

Last sem I heard he was totally non-verbal. (I was shocked to hear that). But now, he rattles off, and complains!

It seems tat he is finally differentiating himself from me. It's good! BUt of course, his grammar and placement of words need, a little bit, er-hmmm, modification....

Will work on that....

Goodnight everyone. Blogging time over. I shall create a blog for myself, about myself, and with myself....

rattling on....

2005-02-10T23:25:00.000+08:00

I am stressed by the demands of coming up with visual strategies to help BJ communicate better. Wow, what an extra work to do. Sometimes I hope I would have just given birth to someone who can read cues off a person's face, or have excellent auditory processing skills. Nevertheless, I will have to do it because he learns differently.

Getting the world to know that my child has autism seems to be easy for me. The idea of letting it out was too much for me to cope, at first. But there are definite benefits.... It's not due to poor parenting....

what happened since October

2005-02-03T22:48:00.000+08:00

Was out of action since last Oct. Who knows what? Close friends will say because of mood swings....
BJ has some remarkable improvements over these few months. I told me "mummy, I love you" with a big peck on my cheeks. That really made my day!!
Just today, I brought him to the playground. He played with two other kids!!! who are total strangers to him. Amazingly, he played catching, climbing up and down the slides, communicated with them via his limited vocabulary, and played in-sync! I could not describe how elated I am, because i would see him in his own world at the playground. Although the play session lasted about 10 minutes only, it was a very good start.
Am I happy? Oh yes. Yan assured me that the $$ i put in for his intensive therapy works wonders. Yes, it does. With plenty of $$. Allen says that our dear child is an expensive child from the start. He is right in that.

Because He lives

2004-10-18T22:41:00.000+08:00

I cannot remember how many times I have to cry while singing this hymn. Esp the 2nd verse that speaks about holding a new born baby part, and how the future of that child is really unknown, but hope is instilled because He lives.

Having fought the battle against postnatal depression, the diagnosis of ASD in James thrown me back into depression, yes, again. These could well be one of the darkness days of my life (so far). How can I appreciate "Because He lives" when i feel my emotions as thin as a thread waiting to give away? Does mentally knowing God holding the future gives me a hope to live on? Huh, this blog is for me, not James. (trying hard to be irrelevant not to answer the question). BUT, ultimately everything is in God's hand. Sometimes His purpose is still beyond our comprehension. Well, time to read and meditate more.

A poem

2004-10-06T13:37:00.000+08:00

WHILE HE IS SLEEPING
I had a special little child not so very long ago.
Since then my life's been different in ways I could not know.
He isn't like other kids, who happily run to school.
He cannot play the games they play or understand the rules.

But when my child is sleeping he's just like you and I I sit beside his bed at night and sing a lullaby.
When others stare at this little boy it wounds me deep inside.
They cannot know how much it hurts or see the pain I hide.
And when the other children simply turn and walk away.
I watch him sitting all alone while they run around and play.
But when my child is sleeping he's just like you and me.
I hold his hand and tell him all the things that he can be.
I never thought I that I would bear a special child like this.
It broke my heart to think about all the things that we would miss.
I used to feel so sad inside and I cried a million tears I wanted so much more for him than the pity of his peers.

You see......when my child is sleeping he's just like you and I.
I say a prayer each evening "God bless this little guy."
It's hard to see your little one as he tries to understand.
And it hurts inside when other kids wont lend a helping hand.
But we've grown together in such a way that other mother's can never know.
And I wouldn't trade him for the world because I love him so.
Because, when my child is sleeping he's just like me and you.
I'm blessed to have this little child and I know he loves me too.

c. Sally Meyer 2001

The cost

2004-10-03T22:27:00.000+08:00

Have been thinking about the $$ amount that needs to go in help BJ. Peer pressure amounting. All the analyses that were supposed to help. Diet therapy. I dun do lots of these, so am I losing out, will BJ lose out if he does not get the right treatment? I simply do not have a clue. He is 1 month away from his 4th birthday. Wnat is the next milestones for him, I ponder.

Now that I teach to supplement income, there are nights when I come back to only find him fast asleep. What guilt I experience as a mum who is not there to sing lullabies.

Still confused about a lot of things. Mind not connecting with lots of information and decision making processes.

Time to sleep mummy.

It's mine

2004-08-05T23:21:00.000+08:00

Just a few days ago, BJ's teachers were very concerned that BJ does not speak at all in class, and were astonished to hear our wonderful story that he talks at home.

As an aspiring psychologist to be, I understand why selective mutism was the preferred choice of his day. I probably can explain through a deficit autism model of neurological disorder, and blah blah blah.....

But perhaps, his "still water" runs deep. Hehehehehehe..... every conversation / feedback from his teacher tells me something. You cannot not communicate. (Must thank my gurus and mentors at Eaglesnest for teaching me that -- if they are comfortable with me calling them mentors)

First, he told his friends to have a "quiet mouth" when they were too loud in class. Hey, I didn't teach him that. Then, he claimed his teacher Helen as "his" (It's mine) when a classmate tried to interrupt. This little bunny is just slowly showing his true colors.

These are true joys in life.....

I believe

2004-08-03T12:29:00.000+08:00

This is not Fantasia Barrino's I believe. Nor, I believe in the Prince of Egypt. It was a gospel song I heard as a child. Popularised by Barbara Streisand, I truly believe that in somewhere in the darkness of night, a candle glows.

This song is for BJ and his friends, and all in my family.

Words and music by Erwin Drake, Irvin Graham, Jimmy Shirl, Al Stillman

I believe, for every drop of rain that falls, A flower grows...

I believe that somewhere in the darkest night, A candle glows...

I believe for everyone who goes astray, Someone will come, to show the way,

I believe, I believe...

I believe, above the storm the smallest prayer, Will still be heard...

I believe, that someone in the great somewhere, Hears every word...

Everytime I hear a newborn baby cry, Or touch a leaf, or see the sky,

Then I know why, I believe!

There were only tears welling up whenever I hear this song, or sing this song.

Dear BJ, mum believes that your great Friend is hearing every word you say, uttered, or unuttered, in the humblest moment you ask for grace before a meal. Though it seems rigid, your friend Jesus delights in what you do. Thank you Lord, for making BJ one and only unique boy.

Mummy I want you

2004-07-24T19:26:00.000+08:00

What a sweet sentence, "mummy I want you". Without tantrums. From my ASD child, who appears to experience separation anxiety whenever I send him to school.

The story began not too long ago, just in case i suffer from temporary amnesia. I must confess I still go around looking at other children, and lament that my child is not on par with his peers' language norm. But when he asserted himself and told him that he wanted me to follow him to class (by saying "mummy, come on. Follow me), and was refused by me and the teacher, and blurted, "but mummy, I want you", my world melted. What is underneath my iceberg was joy beyond all expressions.

Hmmm.... I wish i could pull him out of school that day, and gave a huge ice-cream treat.... But I told him that I understood that he may be sad to see me go, but I will come back to fetch him later. Of course I gave him that biggest hug that I could offer.

My BJ, my pooh bear, my handsome prince, you are the best. I celebrate with you in your verbal achievement. Love and kisses, mummy