Thursday, May 19, 2011

His field trip

At the end of every term, his kindergarten organises a field trip. Two Fridays ago, they went to the Animal Kingdom at the Mines.

He was a bit worried about the trip, a few days beforehand and on the day itself. He said that he was worried about the bus going over bumps on the road. I think he was a bit scared going on a big bus without me. I assured him that the bus driver would be very careful because there were so many young kids on board.

I was a bit worried too, but just a bit. I was concerned about his toileting needs, if he'd remember to drink enough water and if he'd vomit during lunch. My husband was worried that he end up not eating anything for lunch.

He managed to poo before leaving the house that morning, so I knew then that he'd be alright. I packed two sets of clothes (t-shirt, shorts, underwear, socks, and handkerchiefs) just in case there was a toileting accident or vomitting. I packed a snack in case he vomitted his lunch. As for drinking his water, I asked teacher to remind him to do so. And with my concerns addresses as best I could, I went about my morning as normal, without worrying about him.

It was good to hear that he enjoyed himself. It was his first field trip without me. Last year, he missed the first trip due to illness, and he went for the second trip with mummy tagging along (upon teacher's request).

He told me the various animals he saw - a black & white tiger, peacock, parrot, a sun bear, turtles - and that the snake he touched (he said he squeezed it) felt like rubber. I was very pleased that he remembered the animals that he saw!

It was hard understanding him when he was naming the animals (as I had no point of reference) and he often got frustrated with me! I know I've got to be more diligent on doing the oral motor exercises.

He said that he ate all his nuggets (they had McD's Happy Meal for lunch) and didnt vomit. Hurray! That entitled him to a sticker as a reward! I was pleased because that was the first time he ate without me around, in front of his teacher and friends, used his fingers, and finished it all!

A few months earlier, I was having issues getting him to eat his snack during snack time in class. I think he was put off because he vomitted a few times during snack. Teacher was also putting a bit of pressure on him to eat, for the right reasons (to avoid gastric) but in a manner that backfired. He ended up refusing to eat any snack. That's a different story, for another time.

On the following Monday, I checked with teacher on some facts (albino tiger?) and how he was. She said he was fine, and that she was surprised he managed to walk the whole trip. That's my son - if he's interested, he'll walk and walk and not feel tired.

Here's to more enjoyable field trips in the future...and his growing confidence!

Wednesday, May 18, 2011

Day trip to Genting

My helper had been stressing up everyone at home. On Monday, I ended up having to send her to the agency for counselling yet again. This time I left her there for 2 nights.

Since it was a public holiday yesterday and we needed to destress, we decided to take a day trip to Genting, the theme park in the highlands. After all, my son had been hankering to "go somewhere" for some weeks now. I guess he too needed a break from school, homework, maths class, mummy's maths coaching, therapy sessions.


On the drive there, I began to breathe easy. The sight of the lush forests, beautiful green mountains, and clear blue skies, helped me to momentarily forget all the stressors of life - my helper, his entrance assessment, my abdominal pain, his delays...

My son thoroughly enjoyed himself. He went on a total of 10 outdoor rides and an indoor ride, out of which, he went on three all by himself. He is growing up, slowly becoming more confident of himself, slowly becoming more like a "normal" kid.

The staff manning the rides which he took by himself were kind enough to assist him when I asked for help, explaining that he is slightly OKU. It was simple things like assisting him to buckle the seat belt, get in and out, get unstuck after a bumper car after collision, but was much appreciated especially when we know how bad customer service is in our country.

It was by far, the most relaxing day trip to Genting for me. It's relatively easier to care for him. No need to bring bottles, cups, spoon, milk powder to feed him; no worry of vomitting; no need to carry him.

It's been ages since our last holiday (myself & my son), and even though it was only a day trip, it was still a very good break indeed!

Monday, May 16, 2011

"My Child is Autistic" - A book review

As a blogger (and a mom who is encouraging her son to read), I’m actually not someone who likes to read books. It takes me many months if not years to finish a thin novel, if at all. However, when I started to read the book “My Child is Autistic”, I couldn’t put it down for 2 solid hours and only stopped because I had to pick up my son.

It was easy to read, and very captivating. It is in no way a clinical account or written in a textbook-like manner. It was written from the heart. The book is a very honest and brave account of what it was like for a mother to raise up her severely autistic son.

While it was written to give hope to other parents whose child has been diagnosed with autism, it was certainly not sugar coated as there were heartbreaking moments where I felt her pain.

The author Renitha shares with the readers what she did to help her son become who he is today. Her son is today, an 8 year old boy attending school for typically developing children, who is socially aware, full of emphaty, loves his taekwondo, excels in maths, swims, plays the piano and has a bright future to look forward to.

Although my son is not autistic, it was very easy to relate to many issues that she faced. My son too has gross motor, fine motor and speech issues. While the steps that she took to help her son’s issues may not work for all kids, as she repeatedly emphasised, I would certainly try some of them.

Feeling alone in one’s journey to help your special needs child can be rather crushing. It is hard to connect with other parents who are able to understand as we all lead busy lives and have various constrains. In a way, I do not feel alone in my journey, having read the book. It certainly didn’t matter that I’m in Malaysia while the author is in UK and it didn’t matter that my son does not share the same diagnosis as hers.

She is an absolutely amazing mom for not only surviving the tough early years of bringing up her son, but being able to bring out the best in her son. It has given me added motivation in my effort to help my son too.

I would definitely recommend this book to any parent with a young autistic child, any parent whose young child has been diagnosed with special needs, and anyone who are friends with parents of young autistic children.

The book is reasonably priced at a recommended retail price of GBP 8.99. It is available on Amazon at: www.amazon.uk, and www.amazon.com. I’ve compared overall prices and suggest that if you are ordering from Malaysia, to buy it direct from the publisher’s website as I did, (www.authorhouse.co.uk) because it charges less for postage compared to Amazon.

While the author is my best friend from school days (and I’m so proud of her), I can honestly say that the review above is unbiased. If you get onto Amazon UK’s site, you’ll be able to read the very good reviews left by many readers of her book. This was the review from the National Autistic Society in UK, posted in Amazon UK’s site:

An excellent example of the pain, confusion and difficulties that can be involved in raising an autistic child.

Moreover, an example of how an autistic condition is not necessarily static, but that autistic children can grow and develop beyond expectations, even to the extent that their initial diagnosis effectively changes.

This book struck many chords with me and it was interesting to read the unique problems faced by one mother and how she dealt with them. Renitha also raises many interesting issues, such as the need for a non-uniform but informed approach to autism, and her understanding of the causes of autism.

The book provides a valuable insight into autistic family life and should by read by all professionals, policy makers etc, so that they understand how hard life can be for some families. Parents also need to know that there is much to hope for, that the struggle to cope with and understand their child is worthwhile, that incredible progress can be made from not just learning about autism per se, but from playing to your own and your child's strengths, from finding your own unique way to best help your child and enjoy family life.

Friday, May 13, 2011

Photos of his spelling test pages

I started off having him practice his spelling test words twice a day. Teacher gives a new list roughly every week. It started off with just 5 very easy words, out of which he already knew 3. Slowly over the months, the list became 10 words and some of the words became trickier (non-decipherable or were the "irregular words" phonetically speaking), with words like "conserve", "tasteless", "branch".

Now, he just revises his spelling once a day at most, if at all. I think he's finding it harder, and so is more reluctant to revise.

The teacher has the list on her whiteboard, so kids revise it in the mornings before class starts. I think that helps him a lot too, to be able to visually see the words often (well, if he bothers to do so cos he'd rather play with his friends in class).

I'm glad that I started him off early on phonics. Although it was seemingly a slow start for him, it was a strong foundation.

I still remember his previous year's class teacher saying that the other kids can read but he cant. At the time the comment was made, he was saying the sound of each letter, then slowly blending 3 letter words like c-a-t, cat. Meanwhile the other kids were "reading" long words like "elephant". I knew in my heart that they memorised that the long e word pasted on that precise location, on the paper stuck up on the wall, to be "elephant". I suspected that if that word was in a book, they would not know how to "read" it.

I knew it was important for him to be able to read. But I didnt know until today, just how important it is, especially in terms of getting into a school. Back then, I only wanted him to be able to read because I wanted him to be independent, and to have access to written knowledge (also part of being independent).

Being able to read better than some of his classmates has given him an important boost to his confidence.

Reading, goes hand in hand with spelling, and he is doing well there too. The kids seated at his table in class are aware of it too. One day when I came back to his class with his probiotics (he complained of tummy pains), the kids were about to start their spelling test. One girl sat at his table commented that he is good at spelling, and the other girl agreed. Hey, that's a confidence booster for sure!

Btw, he now also has Ujian Ejaan (spelling test of Bahasa Malaysia words). It's about 6 words weekly. But with suku kata, it's not too difficult for him. He does though get confused between the Malay sound for "a" and the English sound for "u".

Here's some proof that he's doing well in spelling. Though the photos are a bit grainy, you can just about make out the "Good" and "A" grades given by the teacher.

Oh, and you can see his handwriting is legible but not very nice looking. Perhaps I should take photos of his handwriting a year ago for comparison. He's come a long way in that area too.





Tuesday, May 10, 2011

School entrance assessment

It was a big day for my son. It was the day of the assessment to see if he'd be accepted into an international school (for normal kids). All kids must go through an assessment regardless of age, even little ones entering Nursery at age 3!

I didnt tell him about the assessment. The night before I merely told him that there wont be kindergarten the next day and we'd instead be visiting the big boy school. I didnt want him to be nervous or worried.

Two weeks ago, I was informed of the date of the assessment. Surprisingly I was at peace for most of the 2 weeks.

But a two days ago, I started being anxious. It didnt helpt that I wasnt sleeping properly - I still wake up several times at night to check if he's sweating (he'd catch a cold if he sweats and is not changed out of his wet pyjamas) or if he's too cold (he kicks off the blanket sometimes).

I was so tensed that I decided to cancel yesterday's therapy session. I was having a headache for 2 days running, obtaining relief from panadol. It might affect my son so I let him choose where to go yesterday afternoon. (He had been asking to "go somewhere" the past week or so. I guess he needed a break too) It was too hot for the park, so we settled for the craft place where he makes cardboard vehicles.

He was happy there, as usual! I ended up having 30mins of upper body massage at Thai Odessy which was amazing! It was painful, but it really released those knots.

We both slept fairly well last night even though I still woke often to check on him. His runny nose which was continuous for almost 2 months stopped about 5 days ago - just in time! Thank you God!

We were slightly late in leaving the house but since I had factored in extra time for the journey, we arrived early. Phew! Getting him out of the house on time in the mornings can be quite stressful at times.

We sat with another mom who was there early. I was fairly at peace while waiting and so was my son. It was a quite spot where I could observe other kids walking by. I didnt talk much to the other mom as I didnt want to be stressed. Her son was applying for entrance to Nursery (that's when I found out 3yr olds also have to sit for assessments!)

We were taken to the classroom for the assessment. Class was on going for the Reception year kids. As I entered the room, he started crying! I was very patient, spoke in a calm even voice to him, encouraging him, explaining to him, distracting him with the kids' work pinned up, with the other kids going by, with the many colourful displays in the room. He kept saying that he's not a big boy yet, that he wanted to go home. This went on for about 30mins. Not good.

All the while, the teachers in the room went about their tasks. One said that I cant be in the room when assessment was being run. Later the other said that they cant do the assessment if he's crying. I was getting worried as surely the teachers' patience was wearing thin. I explained that my son is shy, but was told that independence (being able to separate from me) was one of the things that they assess. Sigh. Surely there are kids who cry on their first day of school?

Fyi, the only other kid also taking the assessment at the same time was teary eyed but managed to be brave enough to go in without the parents and sat with the other kids while they sang.

My chance came when they broke up into groups for table based activities. I quickly moved to the one that involved reading a story book.

I asked one of the teachers if I could just leave him there with her (even though he was still scared and teary). She said, yes if I felt it would help him stop crying (ie he'd not cry if I werent around). I was risking it. It was now or never.

I squatted beside him, then behind him, very very slowly distancing myself as she started on the books with the kids. He kept on holding my hand, or checking that I was there...but as she got into the book proper, I made a quick getaway.

You see, he loves books and I think he knows that he is good at reading. That probably gave him the confidence he needed.

I stood behind the wall, outside the classroom, afraid to move for fear that he'd see me and start crying again (the wall was between 2 doors that had glass panels).

The uncle of the other kid was looking in, checking on his nephew but also checked on my son. Thank goodness for that kind soul as he understood how nerve wrecking it was. He was there to give moral support to his sis, brother in law and nephew.

The good news started flowing in. I could breathe easy.

The uncle was feeding me with little updates: He was reading...He's not crying... He was taken to the other table with the other teacher.... He was colouring.... He's doing really well...I think he'll make it... He's writing.

Suddenly, the other kid was taken out of the room by one of the teachers. Apparently, he was crying non-stop for a while. They couldn't do an assessment. Mom and dad had to console him. Eventually, he went in again, but with mom for quite a while. Mom later came out but he stayed on.

At two instances, I left the area to check out the canteen's condition during snack time. I wanted to know how crowded it might be and what was served etc.

When I came back after the second visit to the canteen, teacher was bringing him out of the class. I tried to stay out of his view as the teacher explained that they were moving to another room to continue the assessment. Though he didnt see me, he knew I was there (teacher said "oh, there's your mom!"). But he was alright. He was happy. He was smiling, wanting to show me the worksheet in his hand. My brave boy!

I waited around with the mom of the other kid entering year 1, while they continued the assessment. We chatted. After seeing my son smiling, I was less anxious, and could chat. She thought my son would surely get in. I didnt reveal his disability.

When it was over, I asked the teacher how he did. She said that "...he's a bright boy...academically, no problem...he could read"

However, she noted he has fine motor issues. She noted his pencil grip was odd, and probably his colouring (more like scribbles) gave it away too. She might have noticed that he pulled up his pants in an odd manner too.

She explained that it was not her decision to make whether to accept my son or not. She'd have to write her report, pass it to the principal who'd then decide. She wasnt sure if my son could keep up with his peers given the fine motor issue. We expect to hear from them end of the month.

I was disappointed. My mind was running wild replaying the morning's events, and with what if questions. I couldnt think straight.

My son's chances didnt look good even though he is academically bright. They have a long waiting list, something like a ratio of 4 kids to 1 place. They can easily pick and choose the best ones, the perfectly normal ones who are bright.

Various dealings with the school have given me the impression that they only want perfectly normal bright kids. The mom of the 5yr old kid was under that impression too. The parent who waited with me prior to the assessment was outraged that her 3 yr old needed to be assessed, and that a report needs to be written up. It's their school. How do we change the rules when there are lots more parents knocking on their door.

We headed home. We went for an early lunch and caught a movie. It was the first time I brought him to the cinema. I wasnt sure what to expect. He was fine! He loved the comfy chair, and enjoyed the movie, Rio. It helped that there was only 4 other patrons in the small screen (lots of breathing space to relax and a clear view of the screen).

I only started to calm down and feel better around 6pm, after a brief rest and a shower (and pest control fumigating our house).

It's not cast in stone yet. He still has a chance of getting in. I've a few friends praying along - thank you from the bottom of my heart!

It's in God's hands now. I will trust in Him. I give thanks for so many things: for the chance to do the assessment; that my son really did do his best; that my son has come so so so far that they only spotted his fine motor issue and think he's bright; that God has guided us thus far in helping him progress; for His peace that passes all understanding!

Even though I will be disappointed if he doesnt get in, right now, I celebrate all that my son is and all that he has achieved. He is amazing! I love him, love him, love him to bits!

Monday, May 2, 2011

Progress in his pedalling

Lately I feel more like my "old self". He's been having more activities outside the house compared to the earlier months this year - physio therapies, art & craft, etc.

About 3 Sundays ago, I started bringing him to the park in the mornings to pedal. In that first outing, I could see how he had "regressed" a bit in his pedalling ability. It was because I had stopped all physical activities for too long (4-5mths).

With his disability, hard earned progress is lost when the frequency and intensity is stopped.

However, I took heart by what his therapist had said a long time ago: It might be a case of 5 steps forward, 2 steps back, but he's still gained 3 steps forward.

We went to the Taman Tun park today cos I wanted a change of scenery from his ususal cycling venue of Desa ParkCity.

I am so happy with today exercise! He has definitely gained back what he has lost, and then some!

He mostly pedalled by himself, the entire path around the lake, with only minimal pushing from me. He also managed to pedal the fastest ever, and maintained that speed for quite a long distance.

I think he was feeling proud of his ability, for I certainly told him how impressed I was with him, and how proud I was.

He didnt want to stop at that one round, around the lake. He wanted to take on another path, the outer path that went uphill which was far more challenging. I was game for it as I certainly didnt want to put a damper on his enthusiasm.

I pushed him most of the way up the incline, but he did try his best, even to the extent of using his "power sounds".

Half way up, between the bottom of the slope and the condo, I wanted to take a break to rest but he told me "Don't give up. Keep trying. I will help you be strong and healthy"! I laughed! He was indeed helping me to be stronger cos I was pushing him uphill.

The last bit about being strong and healthy was not an original thought from him. I had several times in the past explained that exercise, sleep and proper nutrition were important elements to be strong and healthy. I'm glad that he had internalised it.

In the past I had also made a deal with him, that I won't give up helping him if he himself doesn't give up and keeps trying. I wonder if he remembered that. So I agreed to continue pushing him uphill as he was still trying his best to pedal uphill.

Nearing the condo, I had to stop. I was knackered. I told him I had to stop as I couldn't go on pushing him anymore. He still wanted to continue but relented when he tried with all his might to pedal on his own strength. I love that determination of his!

Just to put his pedalling progress in context, about a year ago, he wouldn't even have made it half way round the lake. Back then, he couldn't maintain the momentum (no stamina and strength) and would have required me to push start him many times in that short distance.

It may be a case of 5 steps forward, 3 steps back....but regaining that lost 2 steps was faster than I expected. His strength and stamina are definitely improving, with daily physiotherapy sessions (weekdays). That determination of his, if applied to other areas in his life, will get him far.