Thursday, February 28, 2008

Banana, Apple, Pear ...... Alex's new words.

It's difficult to know exactly how many words Alex could say. I know he understands more than we know but when it comes to speech, he can only say what he sees.

When I read him his books, he will point at certain things that catches his eyes and say the word. Because his pronunciations are not very clear, I had to listen very carefully to be sure what he is trying to tell me. He seem to enjoy sharing this new skill with me.

His fine motor skills are also improving. He can now turn the trains "on" and put them on the tracks correctly. He would have struggled in the past and gave up without trying.

He can also zip and unzip his coat with ease. Funny how I had to learn simple things like "hand over hand" method from Early Bird Programme to teach Alex how to zip his coat. It shows that sometimes, we tend to over complicate things and doubt what we can actually do naturally.

I had a conversation with a friend a week ago about "bullying in school". She has three beautiful neuro-typical children and like most protective mothers, she is worried about her children being bullied because they are different. Her children are mixed - Caucasian and Chinese. It didn't occur to me that being a mixed child, they too can be a victim of bullying. In order to prevent this from happening, she tried to educate their classmates by introducing them to Chinese culture. During Chinese New Year, she brought mandarin oranges and snacks to their class and had a short talk about the celebration.

I think it's a really good idea and it gave me an even better idea. I spoke to a number of parents with autistic children about schooling. They had their children transferred from mainstream school to Special Need school because of bullying. Although Special Need school is a safer environment for our children, it lacks the opportunity for them to flourish in "real" society. I know I won't be here forever to protect Alex and I would prefer Alex to learn to deal with the real world in mainstream education setting.

In order for Alex and other high functioning autistic children to attend mainstream education without fear of being bullied, I intend to approach our local education authority to organise talks for school children about Autism.

Autism is not a well known disorder amongst other disabilities like down syndrome, cerebral palsy, deafness, blindness etc. Because of the lack of information, children with learning disabilities are targeted by bullies and as a result suffer from low self-esteem, depression and perhaps regression.

When one talks about autism to adults, it is automatically associated with the movie "Rain Man". The movie is about 20 years old and I am sure many youngsters have not heard of this film. Autism is not something that we talk about as a general knowledge topic, or even a family discussion among family members. Hence it is important that we pass this information to children through talks in their school. This, I believe will help them to understand the challenges that special need children encounter each day of their lives.

Children learn what they are thought and I don't believe there is an ounce of evil in them. By providing knowledge, we could better the lives of our special need children attending mainstream school.

Sunday, February 24, 2008

Orlando .... here we come!

We've booked our flight ticket to Orlando yesterday. Although we won't be going until end-November, we decided to do things early this year. This may be our only chance to go somewhere for more than two weeks before Alex starts school in January 2009.

First Orlando, visiting parks like Magic Kingdom, Animal Kingdom (maybe), Universal Studio, Sea World and hopefully Discovery Cove. There are so much to do but the most important thing is what we can do with Alex. Then, we may choose a few other destination in the East Coast of Florida and we may go to the Everglades. St. Augustine looks interesting and we may go there when we head for Tallahassee.

We said we will go to Erin's Barmitzvah this year and we are definetely going now.

OK, don't say I didn't tell you first Adrinna, I tried calling you three times yesterday but I couldn't reach you. So, I am sorry you have to find out through my blog - ha ha ha.

On our way back from Tallahassee, we may go to Tampa and one more destination in the West Coast before we had to come home.

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Alex's new words: Boat, Bird and a few more (I am having a headache now and mental block). His speech is coming along but they are still not very clear. I am not going to be too critical and let him develop on his own pace.

I also started giving him Haliborange Fish Oil (orange flavour) with Omega 3 and he loved it. I have been giving him Haliborange multi-vitamin with Omega 3 for sometime but he stopped taking them about 6 weeks ago when he wasn't well. Since then, he refused to take them and spit them out when I gave him. His appetite deteriote and was a nightmare to feed him. He wouldn't eat food he used to loved and wanted to snack on cakes and crisps most of the time.

I decided to try him with fish oil and surprisingly, he like it and I can see improvement in his appetite. He is eating better and he is talking more than he usually does.

So, watch this space for more development.

Thursday, February 21, 2008

Bus, Moon and Jelly - what do they have in common?

The answer to the question is ..... Alex's new words - yeah!

I was playing flashcard with Alex on Tuesday morning and he said "Jelly" when he saw the picture. Then I showed him a picture of a bus, he hummed "wheels on the bus" and refused to say the word. The next card was a moon and he said "Moon" - just so proud of him.

Later in the evening, he looked out the window and turned to me ..... "Mama .... Moon" and pointed at the full moon outside our window. Wow, that's a two word sentence and he is sharing his new word with me ..... gave him lots of praise and he was so proud of himself.

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We went to Oriental City in London yesterday. Alex and I went there with Amelia, her husband David and their son Anson. Jeremy was working late yesterday, so The Cox Family came from Oxford to take us there in their car.

It was around 4:00pm when we left Bracknell and had to use the M4 to London. Half way through the journey, Alex asked to go to the toilet .... (we were in a traffic jam and there was no way we could let him go) I said "Alex, can you hold your pee until we reach London?" he nodded. Along the way, he saw many buses and he said "bus" looked at me and pointed. Two hours later, we arrived at our destination. He was still dry - Thank God!

We had dinner at the food court and yum yum yum - we had "Nasi Lemak" something I craved for .... for ages. Then, Alex couldn't hold it any longer and asked to go to the toilet.

I knew it was tricky as Alex hates public toilets. He hates the echo in the toilet, the sound of the hand dryer, the tight cubicles and most of all, the flourescent lights. I had a hard time taking his pants off as the toilet was filthy and had to do everything as quickly as possible without touching the floor ..... had to clean the toilet seat with one hand whilst holding a screaming child with another. Soon as he had done his business, he held on to me for dear life and I could feel a few bruises coming up. Oh ..... all that just to go for a pee.

At Early Bird course, we learned to use the iceberg exercise to identify why these responses may be happening and I could do this exercise mentally prior to things happening. That's why, Alex is a contented child with very little tantrum. Unfortunately, in such circumstances when we are out and he needs to go, we had to use a public toilet.

Julia, our trainer suggested that we use social stories to prepare him for such situations. On a few occasion, it worked but I could understand why he scream his lungs off yesterday. The toilet was filthy, poo all over the floor - it's pure disgrace and plainly disgusting. I would suggest the Department of Health pay a visit to this toilet beside the food court.

Apart from the horrible toilet, we enjoyed ourselves and Alex fell asleep in the car on our way home.

Monday, February 18, 2008

Alex turned four on Saturday.

We had his grandparents over for lunch and I made parsnip and apple soup and boy .... that tasted good. Cooked everything from fresh ..... not exactly, I did use Knorr vegetable stocks instead of making my own - yeah right .... as if I have time doing that!

I find it difficult to update my blog recently. Since potty trained, Alex has been really good with asking to go to the toilet. He's done that alright, 15 times just yesterday and thank god Jeremy's home to help out. I would have waved a white flag if it's just me and Alex.

Anyway, his progress is kind of slow this two weeks - so, not much to update but he is extremely cute lately. He likes singing and he adores his dad .... I am a little jealous (not really). When I see the both of them so close, my heart melts.

Spoke to my mum last week and she told me something that made me feel quite sad. My cousin's son is 10 months younger than Alex and he is still not talking. He is displaying many symptoms of autism based on what my mum told me. I told my mum to tell my cousin to get professional advice. She said that she won't because she is afraid that they may not accept the possibility.

The problem with this scenario is that people have wrong perception of autism. I wished someone would have told me earlier about autism and I would have got Alex into the system earlier. The way I see it ...... I would rather have him checked and then told it's not autism than delay in getting help if it really is.

Early intervention proved beneficial to both child and parents. In this instance, the child's future is in the hands of his parents. If they cannot accept that there is a problem with the child, no amount of outside help will benefit either of them.

Label or not, the interest of the child comes first. I am not afraid to tell people that my son is in the spectrum if I know they can help him. Any amount of help is better than none. "Ask and you shall be given".

I suspect that autism runs in my family. My grandfather (my mum's dad) was nicknamed "Slow Boy" in his youth. My fifth uncle is also very slow when he was a child (my definition of slow is the polite version of stupid), and then there are a few uncles who are loners and dislike changes. I see this as vary degrees of the spectrum - the more I read about autism, the more I see it in my family.

The possibililty of my cousin's son being autistic is slightly higher than one without a family history of the disorder.

I know it's not polite to tell people that you think there may be a problem with their child but if you did and they take your advise on board, you may have saved them. I know I would like someone to tell me and thank god .... someone did!

Wednesday, February 13, 2008

Alex had his birthday party at nursery today.

Funny how you turn into your mum when you became one yourself.

I baked a carrot and raisin cake as a birthday cake for Alex. I also packed 18 party packs containing a pack of Madeline (small cake), a packet of mini Pringles, a pack of fruity sweets and two small toys to be given to his class mates. Alex was really excited about the whole thing and offered to help me load them into the car this morning. He is getting really good with sharing and is a very generous boy.

I learned this from my mother. When we were young, my mum used to do the same thing for us, I guess this teaches us to share and I like to believe that it also build part of our character.

Anyway, I also enrol us (Alex and me) into Parent & Toddler Ice Skating Course today. This is a six weeks course for beginners starting in two weeks time - I am really excited.

I want to do something different with Alex and I want him to experience different things, then find one that he really likes. I am not sure if he will take onto this because it requires patience and balance - he has neither at the moment.

Alex is quite clumsy in some area, I would guess that he might not be able to master the sliding movement but then again, I might be wrong because he has changed quite a bit - willing to accept changes and help since his chiropractic adjustments.

His speech is coming along - recently, he began to experiment with tonelity. Using different tonelity to address "ma ma" and "da da". It's quite cute really and we love to hear him call us in different tones. I wished I could record his words and post in here to share with you.

Yesterday, I heard him sing "wheels on the bus" using all the names he knows like "ma ma", "da da", "na na", "pop pop", "cher cher" and "kor kor". This is one big improvement!

He is also using Makaton to sign - something he never wanted to do before. He is signing book, more, toilet, juice and perhaps a few I don't understand (ha ha ha).

I am just so happy with his progress that I forgot what he was like six months ago. I had to constantly go back to my previous posts in my blog to remember the old Alex.

One month and 13 days, Alex is a very different boy. Potty trained (dry day and night), drinking from an open cup in nursery, use Makaton and extremely cheeky.

It makes waking up every morning an exciting day because, you'll never know what he will surprise you with!

Monday, February 11, 2008


My Little Chinese Boy!

This suit was tailored made for my friend Amelia's son Anson. Unfortunately, the tailor made it too small for him and fortunately, it fits Alex .... snug as a bug.

We had a potluck party on Saturday, inviting a few close friends to celebrate Chinese New Year together.

Our friend Jerome and his wife, Lucy just had a little boy - Brendan. He is one gorgeous little boy. Holding him in my arms reminded me of Alex when he was just a wee baba.

It was nice to have friends over and Alex was so excited about having his big brother Anson and big sister Brenda over. Jeremy made a mistake by telling him that they are coming on Friday night and guess what? We had no peace until they finally arrived at 1:00pm Saturday!

Anyway, our Alex is one lucky boy, he had his birthday presents early from our friends and our friends just cannot wait to see his expression when he opens the presents. We had to allow him to open them early. We have decided not to get Alex anything but deposit some money into his bank account. It's too soon after Christmas and he is still going through his Christmas presents. Buying him more toys or books would be a waste of money.

We had to be sensible although it sounded a bit mean. Anyway, I know I will get him a little something closer to his birthday and knowing me, I normally swallow my words - ha ha ha.

Sunday, February 10, 2008

Received the Assessment report from Education Psychologist. This is a summarised report and the reason I am sharing this confidential report is to give those interested an insight of the process and perhaps able to help those with a similar problem.

Background Information

Alex was given a diagnosis of Autistic Spectrum Disorder (ASD) in April 2007 by Dr Irani (Consultant Paediatrician) and this was confirmed in the May, following a multi-professional assessment at the Margaret Wells-Furby Children’s Resource Centre. Subsequently, he was referred to the TASS Pre-school service and Neel Wilson began working with him. She referred Alex to the Educational Psychology Service in October 2007.

Neel Wilson wrote to the SEN Section in December 2007 to request a statutory assessment of Alex’s special educational needs. The request was agreed and this report is provided as the statutory psychological advice for that assessment.

Assessment

I discussed Alex with staff at the Teddies Nursery on 23.11.07, and with his mother Ms Hoh during a home visit on that day (Alex was ill and so not at the Nursery). I learned from the staff that initially he had been receiving five hours 1:1 support funded from the Early Years Support Grant. More recently, Amanda Waistell (Inclusion Assistant) had started working with Alex for one session per week (2½ hours) with the staff being funded for the rest. He had been isolated when he started at the Nursery but this had improved, as had his eye contact. He had begun to acknowledge the other children but was not yet interacting meaningfully with them. Alex was not yet toilet trained and was wearing nappies and training was to begin at home and in the nursery. His expressive and receptive language development were delayed and he communicated through pointing with noises, some limited use of signs, and some use of words (e.g. car, more, thank you). When I visited the home, Alex gave good eye contact to me, later accepted my tickling his tummy, said “Bye, bye” and shook my hand when I held it out to him. Given the ASD diagnosis, I formed the view that he had appropriate skills in some aspects of his social interaction.

I visited Teddies Nursery again on 7.2.08. I discussed Alex with the staff (particularly with Catherine Wood, his Key Carer), observed him over a two-hour period, reviewed his East Sussex Curriculum Based Developmental Profile (CBDP) and carried out some 1:1 assessment to try to gauge the current level of Alex’s cognitive abilities.

Alex continues to attend for three mornings per week but currently also attends on Thursday afternoons while his parents are on the Early Bird course. I learned Angie Brown (Special Needs Assistant with the Speech and Language Therapy service) was working with Alex and staff for one session per week and as a consequence, Amanda Waistell had withdrawn to allow this to happen. She will resume her support once Angie Brown’s sessions have ended. The staff had received Makaton training and all the children were now learning one sign each week. Alex is still easily distracted and so at times the staff work with Alex 1:1 both in the main room and away from it. These sessions include daily work using Jolly Phonics and work on activities provided by Angie Brown. They have also set up small group games to develop Alex’s social skills and encourage contact with his peers. They had tried picture cards for use in a visual timetable but these had not worked well so they were preparing photos of Alex doing things for this purpose instead. Toilet training had been started and been quite successful, to the extent that Alex is now wearing pants rather than nappies to the nursery. Staff were preparing a photo of the toilet so Alex could have a toilet card to communicate when he needed to go. I learned later from his mother that his training at home has also been going well and he can stay dry, but currently still wears nappies at night as he can still be wet.

Alex looked at me and smiled back when he came into the room. I walked over and held my hand out and again he shook it. He went over to the carpet to join some other children who had arrived much earlier and had been playing with cars. I noticed he sat and agitated his hands and legs (‘stimming’). This happened at several points in the morning but it was not frequent or overly intrusive.

Alex was told the cars were finished, accompanied by the Makaton sign for finished, and he immediately put the car in the tray. There were many other occasions across the morning when I was clear that Alex is compliant and biddable. All the children then arrived to form a circle for registration. When Catherine said: “Morning Alex” he immediately said: “Uh-uh” (his version of morning) in reply. Alex was aware of me and regularly made good eye contact and sometimes smiled when I smiled at him. After registration, the children were asked one by one to get their coats, ready to go outside. Catherine asked a girl to take Alex to get his coat and he went off holding her hand, seemingly happily enough. When he returned, he stood outside the circle as there was no gap to allow him to enter. He stood passively and made no attempt to communicate with the children in front of him or to step through them. Similarly, when he was asked to line up, his route was partly blocked by a boy on the floor and Alex stood back passively and looked at him, rather than moving forward and so encouraging the boy to move, or moving to one side to walk round him. Catherine said she feels Alex can seem over-passive at times; for example, when he is on a bike and another child requests it, she feels he gets off because he follows instructions passively, rather than because he has finished riding it.

All the children went outside and Alex was given a large ball which he threw with signs of pleasure. He did not look at the ball or the carer when given it. He then got onto a bike with pedals but used his feet to scoot it around. I understand from Catherine he is not yet able co-ordinate his feet when pedalling. He took a different ball from me when I held one out. He made a sound and pointed towards a slide, as if trying to show / tell me something, although he did not make eye contact with me to indicate he was establishing shared attention. I encouraged him to join me at the slide and a carer helped him climb up, saying she felt he was unable to do this yet. He then slid down the slide. When prompted via the word “more?” and the Makaton sign, he went behind the slide to climb again and I loosely supported him, as he was climbing it well. On a third occasion, he climbed up entirely by himself. I asked the carer to do nothing when he slid down and he got up and stood passively. He needed organising / encouraging to find another activity. This was the case throughout my visit, in that during this period of observation, Alex never initiated an activity for himself or engaged in spontaneous play and needed to be supported to do this. At these times, he appeared to withdraw within himself.

Throughout the time I observed Alex, there was little interaction with his peers; he did not initiate contact and the others did not initiate it with him. He went over and stood on the edge of a group playing at one point, as if interested in what was going on, but there was no contact between him and group members. Not surprisingly given the ASD diagnosis, Alex’s social skills will continue to be an area for development.

Alex’s Curriculum Based Developmental Profile (CBDP) shows his achievement so far in the six areas of the Foundation Stage i.e. Personal, Social & Emotional Development, Communication, Language & Literacy, Mathematical Development, Knowledge & Understanding of the World, Physical Development and Creative Development. On the basis of the information supplied, it was clear he had made some progress since the CBDP was started, and Alex’s current achievements are within P Levels 1 – 3. That is, he is working at levels similar to those expected for children aged from birth up to 2½ years at age 3:11 years. Of course, this evidence of delayed development needs to be set in the context of the effects of his autism.

I also assessed Alex using some scales from the British Ability Scales (second edition) (BASII). Such testing is dependent on the child having an understanding of the formality of the situation, good attention and concentration and so on, so not necessarily features present in children with autism. As such, I used the tasks in an exploratory way. However, I learned Alex can be willing to sit with relatively unfamiliar adults and co-operate. He can attend but his attention span is short and he often needs focussing, for example with verbal and visual prompts. He does not yet always look with intent and understand which aspects of a task to attend to. Not surprisingly in the context of the effects of his autism, Alex’s scores were well below average.

During our discussion on 23.11.07, Ms Hoh said she felt Alex is quite social and might manage mainstream schooling at some stage. Her main concern was his expressive language as she felt there were no issues with his understanding. She and Mr Green had scheduled visits to Holly Spring Infants, the Rainbow Resource and Kennel Lane. In a phone call I made on 3.1.08, Mr Green told me he and Ms Hoh had made these visits and that their preference was for initial placement at the Rainbow Resource. During a brief conversation with Ms Hoh at Teddies on 7.2.08, she confirmed that both she and her husband would like Alex to have place at the Resource. One reason for this choice was that the speech and language therapy input would be more intensive. As this would be part time, she would also like him to continue attending at Teddies Nursery for the rest of each day.

Educational Needs

Alex has been diagnosed as having ASD. As such, he shows developmental delay across the six areas of the Foundation Stage.

Recommended Provision

Alex would benefit from:

· Full access to the Early Years Foundation Stage curriculum, adapted to take account of his particular needs;

· On-going monitoring of his progress across the Early Years Foundation Stage curriculum at a detailed level (the CBDP will continue to be a key aid for this and when planning his learning objectives);

· Specialist nursery placement for children with ASD with opportunities for inclusion within a mainstream setting when appropriate;

· Access to staff with specialist knowledge and experience of planning and delivering educational programmes for children with ASD;

· Activities to develop his gross- and fine-motor skills;

· Activities to develop his attention and concentration spans across a range of activities;

· Activities to develop his expressive and receptive language;

· Activities to develop his social & communication skills;

· Access to advice for staff, monitoring and direct input as needed, from a speech and language therapist.

Note from mummy: I agree with most of what is written but because he was only with Alex for 2.5 hours, he hasn't seen all of Alex. Perhaps, this will help to get what we needed for Alex.

Friday, February 08, 2008

I feel like a hypocrite.

Long ago ..... way before Alex was born, I find it difficult to understand why Mothers need 4x4 vehicles for school runs. I told Jeremy, I don't want a 4x4 even if I can afford one - they are gas-guzzlers and it's really bad for the environment.

I changed my mind since having driven the Toyota Highlander in Tallahassee last year. I now wanted a Toyota RAV4 for my next car. The reason for my change of mind is .... cars are getting bigger ... even a Mini is as tall as my car - a Ford Focus C-Max. I like a tall car, one I can drive with confidence and tall enough to see what is ahead way before a small car could. I like the way they are built - tough yet stylish. It has nothing to do with status but more for safety.

Isn't it a laugh? I am slapping myself on the cheek because I said I didn't want one before and craving for one now. The moral of the story is Never Say Never and we can't judge someone until we are in their shoes.

Despite what the environmentalist or the tree-huggers thinks, every parents wants safety for their children. Drivers on the road are getting more careless or violent and driving with your children in the car is getting more and more stressful.

If there's a car out there that isn't a 4x4 but built as tough as one and doesn't cost the earth, I will definetely be interested, but until then, I would like a Toyota RAV4 and in Maroon.

Tuesday, February 05, 2008

It's my Nephew Joshua's Birthday today.

Hey Josh, just want to wish you a very H A P P Y B I R T H D A Y and hope you have a fantastic day.

Lots of love from Sar Ee (Third Auntie), Uncle Jeremy and your cousin Alex.

Monday, February 04, 2008

Alex has a friend.

Jane, my friend from Family Support came today with her two and a half year old son Nicholas.

Nicholas has cerebral palsy and is a delightful boy. He has a wicked sense of humour and not to mention looks to go with it. He is a completely different boy today compared to the times that I saw him at the centre. He was always crying and Alex's afraid of him. I could understand why .... he is a very sensitive boy like Alex and they both dislike rowdy children. Most of the other children visiting the centre has behavioural problems (almost every other child) and it upsets them.

Anyway, when Alex saw Nicholas ..... he wasn't sure what to make of the situation and stayed as far away as he could. Then came lunch time, we had a quick bite in the dining room and then Alex asked to be excused. He went out playing alone .... then Nicholas joined him. They played along side initially and then while we were chatting away in the dining room, I heard them laughing. I peeped and saw them playing together and laughing. No word could describe how I feel and I am glad that my son has a friend.

Jane and I are planning to let the boys play together once every forthnight and see how their friendship develops.

By the way, it's my mum's 75th Birthday today. Happy Birthday MUM .... I love you and miss you so much.

Saturday, February 02, 2008

Did I wish for this? I think I did!

Not so long ago, I wished that Alex would talk or attempt to - well, my wish came true and all I need now is book myself a day in the monastery. I need peace and quiet - just 24 hours - and I'll be happy!

It's "eh eh eh" all day. Asking me to narrate his every action and wanted me to tell a story while he act the story with his cars. I know it's a fantastic progress - imaginative play and I am so happy but 8 hours of this? I know I shouldn't be complaining but when you are lack of sleep and with a head cold, it is not the best thing that ever happened to you.

Anyway, he has two new words today. "Net" and "Neck".

While watching The Mickey Mouse Clubhouse this morning, he said "net" when a picture of a net appeared on the screen. He looked at me and said "net", I just say "Well done" but not make a big fuss. He was happy and of course, I was really proud of him. Then, later in the evening, he said "mama neck" and pointed at his neck. There's a rash on his neck and I asked if he is in pain and he said "hmmm" meaning yes.

He is making more noises, sound and repeat words (although not really accurate) more often lately and that's really a good progress. But, I do need some quiet time sometime .......

Be careful of what you wished for - for it may come true and .............