Dear Diary

My little chatterbox

2010-03-14T17:00:00.002Z

It's been six months since I updated my blog. Things have changed so much that I could not believe it has only been six months. All I could say is that everything turned out the way we wanted it to. Looking back, same time last year, I have no idea what I wanted with my life. All I know is that I wanted Alex to go to a school that can help him and that I could have a decent conversation with him.

My wishes came true and it's been positive all the way but sometimes a bit too much to handle. I know .... you must be thinking, what is there to complain when everything is going your way? Well, things could get too much when you have none for such a long time.

Alex has been in Addington School for nearly two terms. I have been ferrying him to and from school everyday, tiring for sure but it's all worth it. Alex is now very independent, we noticed the change since week one in Addington. He prefers to feed himself (he is doing a great job too), sometimes dress himself, go to toilet without help and clean up after a meal (took dishes to sink ... little did we know then but now we sussed it out that he wanted to play with the tap - LOL).

His speech has improved tremendously and he could not stop talking and singing. Still not very clear but we could make out what he wanted to say. He is also very patient with us as when we do not understand what he tried to say, he will repeat a few times and when we still don't get it, he will find other ways to tell us what he wanted to say. Our son is really patient (in this instance but not others) and intelligent. For a child with autism, he is extraordinary. We are just so proud of him!

Initially, it was easier but his vocabulary kept increasing and it's very hard to gauge what he wanted to say at times. His latest obsession is motorway, holidays, hotel, airport, airplane and did I mentioned hotel and hotel and hotel?

Last week, Alex kept saying he didn't want to go to school because he wanted to go to a different airport and hotel. I told him that if he wants to go to different airport and hotels, he must go to school so that he can learn to be a pilot when he grows up. He said "Mummy, I don't want to be a pilot, I'm just a little boy" I could not stop laughing but in my heart, it was the sweetest thing I've ever heard and boy, am I proud of him. He constantly comes up with funny anecdotes and makes us laugh.

We enjoyed our son so much but to a point when it gets too much. He can't grasp the concept of indoor voice and stop talking. When he's awake, I wished he would go to bed soon but when he is asleep, I missed him and his funny moments.

Today is Mothering Sunday in United Kingdom. Jem is at work and I took Alex to the cinema to watch Alvin and the Chipmunks - the Squeakquel and then lunch at an Italian. For the first time in six years, I could finally have a decent conversation with my son in a restaurant. He was so good I could not believe my luck.

When we walked in, he said it's too noisy and I almost turn round and walk out but I thought I'll try and if he thinks it's too much to handle we can always leave. He proved me wrong and he was just fine, I am so glad we took him to places and we are starting to reap the rewards.

He did some colouring and even made fun of me several times, we talked a bit and ate and when he had enough of the "sensory overload", he asked to go home.

This is the best Mother's Day I've ever had.

I'm not helpless ... I'm just smart

2009-08-28T10:19:00.002+01:00

We were told that children with autism have learning difficulty but do they really? My guess is ... they do in some respect but not all. In fact, I think they can be very smart and manipulative if you allow them to be. Unlike neuro typical children, they can get away with almost anything because they led us to believe they are helpless and you cannot help wanting to protect them and do almost anything for them.

I said almost is because ... my Alex can be a pain in the backside at times but I can be the proudest mother when I take him out. He is almost a perfect child in the old days where children are meant to be seen and not heard. Well, only if his needs are met ... that is. He has no reason to misbehave because if he has food ... he is happy.

Now, the reason I said Alex has no learning difficulty is because ...

1) I was upstairs busy doing (something) and Alex called me for help. I told him I'm busy and ask him to do it himself. Fifteen minutes later, I came down to the lounge to find an empty carton of apple juice on the table. He inserted the straw into the carton and finished his drink. Normally, he would take the carton and give it to me and said "Mama help ... I can't".

2) His dad was in the garden and I was on my computer (as usual) Alex wanted to go to the garden and be with his dad. He said he wanted to go to the garden and I said go get your shoes, what seem like seconds later, I saw him in the garden with his shoes on. I asked Jem if he put the shoes on for him and he said he didn't. Alex put his shoes on and velcro them properly ... the only thing wrong with this ... he had the shoes on the wrong feet. Again, we were fooled by our child that he cannot put his own shoes on.

Moral of the story ... if a child wanted something bad enough, they can do almost anything. I have to really start letting my son grow and stop thinking he is helpless and has learning difficulties.

Well ... he does have learning difficulties when it comes to holding a pencil and using a scissors. We may think it's easy to hold a pencil and write or cut with a scissors but to Alex, we have to break down the movement and help him to combine the movement to make something. He can hold a pencil but he can't write. He doesn't have the strength or the grip to write. He can hold the scissors but again, he don't have the strength to push the scissors with the back of this thumb. Watching him do these simple things, I felt like I had to hold my breathe to urge him on.

I observed and learn some technique from the Occupational Therapist and will try to practice them with Alex. Sadly, his sessions come to an end next week and will pass on to the OT at his new school. Sam, his OT is great with him and she was really impressed with the things Alex could do. Alex has very good body awareness and can balance on a balance beam and ball without help. I think he learn that from walking on my back when I needed a massage - ha ha ha.

Who says I have no imagination?

2009-08-19T14:19:00.001+01:00

Mummy don't feel alright.

2009-08-11T09:11:00.002+01:00

For some reason, my son let me sleep till 8:00 this morning. He was very quiet ...

I was aware that he came into my room a few times and check on me. When I heard him came in and then out again, I realised it was late. I made a big yawn and I heard little footsteps ran up the stairs.

He gave me a big hug like usual and then he said "Mama don't feel alright". He opened my mouth and said, "mama teeth hurt" and put his fingers into my sewer mouth (ewwwwwwe) I guess he loves his mummy too much to mind.

He then said "be right back ... I go go get medsen at Tesco Warfield" a few moments later he came back and said "oh oh medsen out" I go go new Tesco and this continued with out of stock and going into Tesco Reading, Camberley etc.

I got tired of the game and said "Wow ... Mummy's OK now. He said " no no mummy tummy hurt and mummy need baha (his word for breakfast) he came back dragging a big box filled with toys and said it's food.

I thought this day never come. It's a bit delayed but it sure felt good!

The closet singer

2009-08-04T08:39:00.001+01:00

Sitting on my bed reading my novel, I heard Alex strumming his guitar and singing "apologize" by Timbaland in the room next door. Admiring my son's singing, I have the urge to give him a hug. Trying to be as quiet as I could, my floorboard betrayed me. As soon as he heard me getting off bed ... he stopped playing and was very quiet.

I found him hiding under the table with his guitar and a few cushions - he made a nest. He hid his face in the cushion when I walked in ... as if he's embarassed. When I asked him to play me a song, he just strummed the guitar (out of tune, of course) and no singing. I said, can you sing apologize again? His replied ... "I can't!"

Alex's speech is getting better and better each day. The words he uses amazes me sometimes and he has been saying a lot of "maybe tomorrow ..." I doubt he understood what he meant by that ... but then again, Alex surprises me a lot.

Last week, he said "Awww ... Not fair" when I said no to him. I can't remember what but when he said that, I laughed my socks off. It's little things like that that made my day.

In December 2007, Dr Irani said he will talk one day, we could only hope he is right. That day came but seemed like a long long time. I never lose hope, I just got really patient.

I haven't stop writing

2009-07-25T15:23:00.003+01:00

It's been almost two months since my last entry.

Trying to get back into writing mode takes time and I could understand why some writer take such a long time to write a book.

Alex's progress ... unbelievable! He is talking in sentence, sometimes very clear and sometimes not. More often than not, we can understand him. He is happy and ALWAYS TOO HUNGRY.

Summer School Holiday started this week. Last Monday was his last day at Rainbow ... it was emotional at the end. All the teachers knew they had to say goodbye to Alex one day but when the time came, they just cannot let go. I will miss them because they have been so great with Alex.

Come September, a new chapter will open for Alex. We won't know if he will be happy at Addington ... similarly to our initial reaction to Rainbow. It turned out to be the best thing that ever happened to us.

Many things happened in the last 6 weeks since my last entry. Erin came and gone, she was so good with Alex and we missed her so much. Thankfully it's not long that we'll be seeing her again. Alex and I will be flying back to Malaysia in December and so will the kids and Adrinna. It's an exciting trip since it's my 40th birthday, a complete family reunion bar Jeremy and Bill and a reunion with my old school mates that I have not seen for 23 years. We all got back in touch through Facebook and despite what people say about the social site, I think it brings people closer. I regularly write to my cousins that I haven't seen for ages and catching up on their latest news.

I am also in the midst of registering our group Friends of EarlyBird as a charity group to support parents/carers with children within the spectrum. More of this will be revealed.

I will try my very best to update Alex's progress as often as possible. Writing this blog help me through many dark hours and gave inspiration to some of my friends. I hope I can continue to inspire and continue to give hope to anyone reading this.

What a revelation!

2009-05-31T08:35:00.002+01:00

Whether you have a special need child or not, parents tend to do more than they should for their children. We fail to realise that our children have been observing us and can actually do many things if we just let them and not intervening so often because we are afraid of the mess they make.

Because of the fear of cleaning up mess, it would be easier and quicker to just do it for them. Hence, children learn early in life that .... "Hey, why bother when you have someone doing it for you?" and the "I can't" comes into the equation when you ask them to do it themselves.

Alex can do many things for different people and he won't show his cards all at once. He led me to believe that he can't do many things when he can do them with his therapist or his teachers at school.

We had breakfast this morning and I asked Alex to pour milk into his cereal. Without thinking twice, he grab the carton and then unscrew the cap .... a **PINK** in his brain suddenly remind him that mummy is watching and he said "I can't ..." with a whinny voice. If I had turned my back and not watching, he would have poured the milk and replace the cap. I told him, "you can do it, just try" he then confidently pour the milk into the bowl beautifully.

I am so proud of him.

Alex needs constant reassurance (not in a bad way) when an adult is present. Even though he knows he is allowed to do it because he has done so many times, he still need approval. Is this part of autism?

I am very lucky with Alex because he has no tantrums compared to my friends' Autistic children. And when I take him out, many people commented on how well behaved Alex was.

Could it be because he is my only child and I can afford to pour all my attention on him and meet his every needs that he is so contented and see no reason to seek attention?

What a change!

2009-05-22T15:39:00.004+01:00

Alex has been progressing so much that I find it hard to catch up and update my blog.

He is coming on so fast that even his teachers in Rainbow loves writing about him in their daily report. I can't wait to read them everyday and if he does not bring his report home, I get a bit disappointed.

Here's what they say:

On a post-it note on top of his daily report 11.05.09 " Alex made the letter H all by himself saying 'big line' and 'little line' we were really pleased with him!"

and on another note of the same day "He also said 'when the timer's finished it's carpet time' He's coming on so fast!"

Here's what's written in his daily report from 11.05.09 till 22.05.09

Monday 11.05.09 ~ Alex joined in well in PE. Needed support to curl up in a ball. We played birthday party role play - Alex was really good at picking the 'birthday girl or boy' and singing with them.

Tuesday 12.05.09 ~ Alex did cooking today. We made lemon cakes and Alex enjoyed eating his. Unfortunately, he squashed his ones to take home! We went shopping for ingredients first and there was lots of language again.

Wednesday 13.05.09 ~ We made L, E, F and H in handwriting without tears and Alex used the magnetic boards and the wooden lines. He played with 3 children from nursery. (I have no idea why they said 'without tear'. Was Alex ever unhappy doing things at school?)

Thursday 14.05.09 ~ Alex was introduced to the letter 'T' using the lines and magnetic boards. Alex practiced his handwriting. He chose to use the Doctor Set. Alex has done lots of talking.

Friday 15.05.09 ~ Alex has done lots of talking. He shared a picture ORT story - he retold the story and showed lots of humour. Alex printed 2 colour repeating pattern. Alex is almost secure with the early ORT words.

(ORT is Oxford Reading Tree. These books have no words but a few familiar characters in different scenarios. It is up to the children to make a story from what they see in the book)

Monday 18.05.09 ~ Alex is recognising lots of letters. Today, we looked at I, T, E, F, H and L. We made playdoh letters. Alex had PE with nursery and played in the nursery garden.

Tuesday 19.05.09 ~ Alex recognised again the letters I, T, E, F, H and L. We made collage letter for a display board. He played in the water with Celestine and Kyle. Done some singing in a small group with positional language. Played on bike and had a turn taking game. Alex is pedalling his trike very well.

Wednesday 20.05.09 ~ Alex drew a house using shapes, he had a go at a writing pattern but found it difficult. Alex has been pedalling the trike again today and commenting on everything.

Thursday 21.05.09 ~ Alex has had a chatty morning. He joined in social skills with good listening. Alex drew round his hands using the focus words up and down. Alex said a 5 word sentence! A good morning.

Friday 22.05.09 ~ Alex went to watch the main school assembly and sat beautifully. We went to The Oaks cooking, we made fruit salad. Then had a picnic in the garden. Alex ate lots! He shared an ORT reading book. Enjoy the half-term.

Alex is talking using 5 word sentence and that is wonderful. I never thought this day would come so soon. It's such a positive report and I am so glad that his teachers adore him but I am also sad that he will soon leave them and start at a new school. I hope his teacher at the new school will also love him as much as his teachers here.

Here's another report from his IEP (Individual Education Program) dated 19.05.09

1. Target: To pick out his name card from a choice of 4

Success: Alex can pick out his name from a choice of 4 with no adult help.

2. Target: Alex can make the initial sound /f/.

Success: Alex will make the sound /f/.

3. Target: To make a contrasting group of '1' and 'lots'

Success: Alex can put 1 or 'lots' into a hoop

4. Target: To count 3 objects reliably

Success: Alex can count up to 3 objects correctly.

Wow! I am really happy with what my little monkey can do. I know he is still way behind if he is compared to his neuro typical peers but he is getting there slowly. I am happy as long as he is happy and will not force him to do what he cannot. I will concentrate on what he can do and not criticize what he cannot.

I am not sure if all these talking and progress has anything to do with his OD (overdose) on fish oil capsules 3 weeks ago.

We normally give Alex 2 Haliborange Omega 3 fish oil capsules daily and he loves them. One morning, we found Alex smelt of orange and a nearly empty bottle. There were only 2 left and I was sure there was more. Since then, he hasn't stopped talking and singing. I don't know how many he took but I suspect more than 5 or even 10.

I don't know what to think but I am not complaining!

Addington School, here we come!

2009-05-09T23:47:00.003+01:00

After months of waiting, the news finally came.

Alex has been offered a place at Addington School in Berkshire for September 09. The school specialise in Music and ICT. We are still waiting for the official papers but I thought I'll share this news with everyone.

We decided to go for Addington instead of Meath because circumstances changed. Alex's SALT, Becca made enquiries on our behalf and is satisfied with the support they can provide Alex.

We had a good feeling about the school when we first visited them last year but decided it was our second choice when we were told that the Speech Therapist will only see Alex once every week for 30 minutes.

After our meeting on Tuesday with Nancy and Becca at Rainbow, we decided to make Addington our first choice school ... provided that they can meet his needs. We all agreed that it's the best place for Alex because of his love for music.

I am glad that the wait is over and we can all move on with our lives. I can't wait for September to come and my baby could start school for real.

Thank you for all the support from my family and friends. I love you all :-) xxx

"Bee Go Away"

2009-05-09T23:18:00.002+01:00

It was a long wait, it came and still a long way to go.

"A bee, a bee ..... Bee Go Away"

Alex, our chatterbox cannot stop talking. I am not complaining, trust me ..... His speech is coming along, and for what seemed like eternity, I can finally have a decent conversation with my son. Far from perfect I know, but he is trying his best. It's still not very clear but I try to understand and repeat what he meant to say - he tries his best to correct them when possible.

I am so proud of him and no word can describe how I feel. I have never doubted this day will come and by believing .... when it finally came, it sounded better than I imagined.

All these started when he turned five, a little at a time and then nothing much happened. Suddenly, everything came along just over a month ago. His vocabulary grew, he comment on everything he sees. He is more confident and most of all, he is so proud of himself.

To all the parents with children diagnosed with Apraxia of Speech, don't give up, believe that this day will come. No one can tell you when but when it does happen, it's the best feeling in the world.

It's not hayfever after all!

2009-05-04T09:05:00.002+01:00

Three weeks ago, Alex started sniffling loudly in the early hours of the morning. He had nose block and unable to breathe through his nose. No temperature and it only happens when the temperature changes in the morning.

I was sure it was hay fever as I recalled the same thing happened around the same time last year and a few dose of Piriton worked for him. This time, it didn't work.

We went to the GP for advise and she thinks it's hay fever as well and prescribed Cetirizine Hydrochloride. The first night was fine and he slept through. The following three nights, the sniffling came back and there's nothing I can do for him. It stinks when I cannot do anything to help make things better. By now, I needed some good nights of uninterrupted sleep.

I made another appointment for Alex to see a different GP this time and asked for a different anti-histamine as Cetirizine doesn't work for me either. I tried everything and only Desloratadine works for me. I asked the same for Alex and perhaps he would respond to this. The GP thought the same. I also asked my friend Tammy, a GP in another county for advise and she told me to try the anti-histamine for a week before I change again. For the next 7 nights, the same happened. I tried going to bed earlier to get some sleep but it's worst as I kept waking to look at the clock. And then, the sniffling begins and it's time to wake up. I was totally knackered by now.

I rang the GP the next morning to ask for a different anti-histamine and after looking at Alex's record, he prescribed Levocetirizine dihydrochloride. According to Tammy, Desloratadine and Levocetirizine are the most expensive anti-histamine and are not prescribe lightly by GP.

We tried this new drug for two days and it didn't work and I called Tammy again and she asked me to give him Calpol (paracetamol) and levocetirizine only at night to see if it works better. True enough, the sniffling went and two days later, Alex had his cough and fever.

He is now all better minus the sniffling at night. I had a few good night sleep and am happy again.

It's hard to help him when he is in his stubborn mode, he refused to blow his nose and kept saying "I can't blow". All he wanted was a hug and me, by his side. And when he started to cough, I asked him to cover his mouth when he coughs and again he said "I can't cowber".

Lack of sleep (mother) + a stubborn child = a stern warning voice and he got the message.

Alex covers his mouth every time he coughs and I believe that the stern warning voice made him realised that nicey nicey mummy meant business when she is lack of sleep.

When I grow up, I want to be .....

2009-04-21T15:48:00.003+01:00

Jeremy and I often have this talk about what we think Alex might be ... when he grows up.

We've always said that he will do fine even if he is just a shelf stacker at Sainsbury's ... as long as he's happy. It all started with him stacking his blocks and grouping his cars and planes. That was then and every so often, we change our mind. From singer songwriter (when he picks up a guitar) to City Transport Planner (when he play with his trains and airport sets). I am not joking about the CTP as when he plays with them, he planned his airport, train station, car park, petrol/gas station and hotels meticulously.

Well, after today's attempted nap time ... unsuccessfully, my son is going to be a doctor. Why? Because he said so!

I was laying next to Alex ... trying to get him to sleep. One whole hour of bribing, threatening, cajoling and nothing worked. While I was doing all that, something caught his attention. He tried to open my mouth and when I did, he looked real hard and then said "moon" meaning he wanted some light to see. I gave him my small torch and he looked inside my mouth. He then said "mama" and then he coughed. I said, "Why are you coughing?" he then repeat himself again and then ran to the back room rummaging through his toys. Guess what he came back with? A toy screwdriver in one hand and a torch in the other. He then repeat himself again.

I then knew what he meant and said "Are you saying mummy's sick?" he then said "Okah" meaning yes and I opened my mouth. Using his screwdriver, he prodded my tongue and then said "ah" and I did as told. I then asked him, are you the doctor? he said "Okah" and smiled.

I love watching my son play and I believe he will be fine .... with lots of love and encouragement, hope and believe.

So much going on and nothing happening

2009-04-12T09:47:00.002+01:00

It's been a month since I updated my blog.

Not that there isn't anything to write about but I find myself in this 'hold on' mode for the whole month waiting for something but not sure what.

Mostly it's about Alex's schooling ... waiting for the LEA to come back to us on their decision as to which school they would want to send Alex. I don't know why but my life seem to be in a 'pause' mode until I know what their decisions are. I honestly do not know which school best suit Alex.

We know he needs intensive Speech and Language support and in the past, we are very sure Meath is the right school for him. After our meeting with the Educational Psychologist at the beginning of March, he felt Meath is not the right school for Alex. We have been warned by Meath that this particular EP is not very keen to send his clients to Meath ... for what reason, I do not know. Could it be something to do with the cost or he genuinely believe it is not the right school for his clients. No one seem to be able to tell us which school is right for him.

Alex likes music, he likes humming songs and in perfect tune. Because of this, we went to see Addington school ... once, last year. We were impressed with their music programme and had a good feeling about the school. They specialist in Music and ICT.

After speaking to the Deputy Head Teacher, Addington is no longer a school that we would consider as they can only offer Alex - 30 minutes a week with the Speech and Language Therapist. The remaining support will be through a programme developed by the SALT for the teacher and teaching assistant to follow. Hence, we did not make another visit to look at the school again. Little did we know that Rainbow is the same as we have always thought that Alex has two sessions of SALT with Becca every week.

We put all our eggs in one basket - Meath. When the EP said no to the school, I questioned his ability to recommend. He spent 25 minutes with Alex and he made recommendation through Alex's medical diagnosis ASD. He thinks Alex's primary need is to support his ASD and not his speech.

I totally disagree with him as I spend all my time with my son. I know his primary need is speech and I can confidently say that. Although he is diagnosed with ASD, he is not what I call a typical child in the spectrum. I agree he demonstrated many of the autistic characteristics but it has never been a problem. He listens well, he can sit with his therapist for one whole hour to do his exercises, he has no tantrums, he is well behaved, he sleeps well, he eats well, he is happy, he is friendly but is a bit aware of strangers (that is a good thing right?) and most of all, a mother's instinct tells me that Autism is not the biggest concern here.

After the meeting, all these things went round and round my head, I was angry, I wanted to challenge him, I wanted second opinion and wanted all sorts. I know if I were to blog at that particular moment, I would have given my readers the wrong impression of me. I want my blog to give hope and positive energy to whoever reads them.

I want Alex to go to a school that can support his needs. I don't want to put him in any one special school ... just because.

I am still waiting and I have to think what my next move is. We are now in Spring Break and nothing will happen until school reopens in a weeks time.

My poor baby

2009-03-13T20:54:00.002Z

Not much to update as Alex was poorly for a whole week.

There's a Gastric bug going around and the school had to close today as a few other children were off sick because of the bug.

Alex had projectile vomiting and diarrhea and was off his food all week. Today's the first day he managed to keep his food down and smiling all day and laughing when watching his tele.

I told Mrs Goss that Alex hadn't eaten since Sunday when she rang to inform me of the school closure. Her respond was "Oh my .... it must be bad if he refuse his food. It's unheard of."

It's not a nice feeling when you see your child suffering and there isn't anything you could do for him. He was whinny and weak .... it's not at all like Alex.

I am glad that he is finally on the mends and I pray that this won't happen again.

My helpless son

2009-03-03T22:07:00.001Z

"Mama elp .... I can't ............"

It's the beginning of every sentence ... when Alex speaks. It's not that he can't do it but, my guess is that he like the sound of it.

Alex has been quite good at talking and making an effort to string sentences. Sometimes, it's quite clear and i could understand him. At times when they are not clear, it's a guessing job.

Strange but seemed like as soon as he turned five, his speech started to flourish. I can't wait for his words to come clear and we can have a proper conversation. I know he would be one interesting boy to have a conversation with.

Just the other day, he was watching tele in my room and Mickey Mouse Clubhouse, his favourite program came to an end, he cried inconsolably. I gave him a big hug and tried to make him understand that things will eventually come to an end. Then, he spotted the mirror and walked in front of it and cried even harder .... this time with surround sound "boo hoo hoo".

It was really funny, as if he was trying to see what others sees when he cries. He even tried to perfect his cry with sound effect - LOL

Little things like that makes my day. He may not be able to talk properly now but when he can, I'm sure my days would be even more interesting.

Tea Party

2009-02-19T07:56:00.004Z

Early in the morning ..... yes ... at 6:45am, my son sent an invitation to his Tea Party.

In a cup, was two GI Joes carefully placed on my chest .... while I was still asleep. It's nothing new that my son bear gifts .... I didn't bat an eyelid ... so to speak - LOL

Drifting in and out of sleep, I heard the bathroom tap turned on and then off again. Instinctively, I jumped out of bed to see what was my son doing?

He was already in his playroom, around him ..... he placed all his cups and saucers next to each other and when he saw me, he said "Mama hur" asking me to sit down. In his jar, now filled with water, he looked at me with the loveliest smile. Mummy being the joy killer, quickly empty the jar of water in the sink.

He then made me a cup of tea but half way through, he said "oh oh no milk" and then he said "go Tesco buy milk" I was really surprised with his development overnight. Although what he said wasn't very clear, I knew what he was saying to me. He also used the word "another" when previously, he would say "more".

The pretend play went on with making me toast and then ran out of butter andBovril. He kept saying that he wants to go Tesco to get butter and Bovril. He walked to our room and came back with milk, butter and Bovril .... pretending that he went to Tesco.

It was the best breakfast ever ..... I'm still hungry though

**********************************************************

Alex went to his Occupational Therapy treatment yesterday and did very well. I managed to video his session but I need to wait for clearance from Ann's Boss before I could upload the video. However, if anyone would like to watch it, please leave me your email address and I will send it to you directly.

Oh Oh

2009-02-15T07:42:00.003Z

"Oh Oh" and he ran out of the dining room.

We came down to make him juice this morning and while I was in the kitchen, Alex said "Oh Oh" and I said "I don't like the sound of that .... what did you do?"

He held my hand and led me to the dining room and there it was ....... my beautiful lilies are droopy.

Well duh Mummy .... cut flowers do need water you know!

After six years of not having cut flowers in the house, I totally forgotten that you have to constantly check if there's water in the vase.

No it wasn't for Valentines. My friend came for lunch last Sunday and she brought me Lilies. They are lovely and filled the house with it's beautiful fragrance. I may consider having cut flowers in the house again .... since I bought a lovely vase earlier this week.

So .... oh oh is not always ... I did something mummy but more like you didn't do anything.

Be careful of what you wish for

2009-02-14T08:30:00.001Z

I shouldn't be complaining as I have wish for this day to come.

Alex talking ..... and he can't stop!

He repeats, he tried to talk, he sings, he hums and he never stops until he goes to bed.

For the past few days, he has been using "ermmm" for everything you ask him. A few examples here that cracks me up. It may not sound that funny to parents with neuro typical children but it works for me.

We went to see my in-laws a few days ago because the family dog had to be put down because of old age. My in-laws were devastated and we took Alex to see them before school. Our little bod is a back seat driver and a very bossy one too. He tells me where to go by pointing at the direction and say "that way". On this occasion, we asked him which way to go .... and he said "ermmmm .... that way" all the way until we reached out destination.

He came to my bed this morning and gave me a kiss. He then said "mama go make apple juice" (this .... he has mastered and anyone could understand what he's saying) I played a trick on him and said "give me a very good reason why I should get out of my warm bed to the cold kitchen to get you a drink?" He looked confused ..... think for a bit and then he answered "ermmmmmm .... dada go make apple juice" I could not stop laughing and it was hilarious.

Well, since he asked nicely, Jeremy had to get up to make him juice. Well done mummy, another way to dodge responsibility and confuse your five year old.

Too many words Mummy .... but it was funny!

I'm all grown up and getting good at talking

2009-02-10T09:18:00.003Z

I don't think I am like ordinary people when it comes to waking up in the morning .... that is until Alex came along.

In a perfect situation, your hear the birds singing, you open your eyes slowly and with a smile .... a little yawn and then a stretch.

OK ... mine is like #####Mummmmmmm ###### Click Clack Clock ######## Bang ##### Eyes popped opened and jump out of bed and run downstairs!

Well ... lucky for me it's not a typical morning but today sure is one that I just described. My son decided to grow up overnight making his own juice and breakfast.

When I came into the kitchen (I was still groggy), he already took the juice carton out of the fridge, and trying to fill his bottle with it. He looked at me with a smile and said "elp".

I helped him with the juice and he said "Bar" mean breakfast bar. I gave him the bar and the juice, he went upstairs with them. I followed and then he sat on the floor and said "mama hur" means mama sit and pointing on the chair. He then hand me the bar and said "bar". I said .... "what do you say?" He said "Mama (very carefully) ooo ppe (pause) pish open bar" He made sure that he said please and I was delighted and over the moon (smile).

Alex is getting better at talking, although not very clear but he made a good attempt every time. When he watch tele, he will repeat what is said .... not very clearly but he did a great job. I am so proud of him.

Happy Birthday Mum

2009-02-04T13:13:00.002Z

Alex's finally back to school after two days of school closure.

The taxi was late to pick him up and while I was trying to contact the driver, my phone rang and it was Adrinna on the other end. I had to call her back as the taxi arrived immediately afters.

We talked for awhile about calling my mum today ... singing the same birthday song to her - ha ha ha .... what are the odds? Well ... I only knew two and that would be 50/50 but having two siblings singing the same song? Hmmmmm

After talking to my sister, I feel a bit melancholic and homesick. I haven't seen my mum for three years and that is a long time for a daughter to do. I hate it when I can't give her a hug on her special day or take her out for lunch or dinner or spend the day with her doing nothing. I missed my mum!

Jem and I decided that I should take Alex home with me this summer but I told him I cannot arrange for anything until we have confirmation that Meath is offering him a place in September.

As a mum now, I realised how much we sacrifice for our children and never once thought that we needed anything in return. I know that my mum wouldn't want anything from us but having all her children by her side. She didn't say so .... she knew it would be selfish for her to ask.

I do hope that everything will fall into place with no obstacles and I can go home to see my mum and dad and my sisters and brother and nieces and nephews. For once, I craved for a noisy house where all the people that matters to me are together.

I pray .....

The wait is over!

2009-02-03T21:58:00.002Z

Well .... the wait is finally over ... Alex's Occupational Therapy is finally happening.

He is now officially in the system and will have a weekly appointment to see an OT for treatment. We waited 22 months for this and it's finally happening.

Twelve months wait to see an OT for assessment and another 10 months wait to see an Occupational Therapist an hour a week ..... I don't know for how long. The country is short of OT and twenty two months wait is considered on target. At least that's one less thing to worry for now.

Alex had his first OT appointment today with Sam and Ann.

Sam gave Alex a few exercises to do and he impressed the both of them. The last time Sam assessed Alex, he was way behind with his fine motor skills, not able to write or follow through with his assignment and a very short attention span.

Alex is able to sit through the whole 45 minutes of the appointment this morning and performed every single task with good listening, talking and concentration.

He started with colouring, and we noticed that he used two hands but preferred the left one. Sam commented that ... since he preferred the left hand, we should encourage him to use the left one every time he picks up a pencil. This is to help the brain to concentrate on one hand to perform that particular task. He was then asked to copy what Sam was doing, drawing a line from top to bottom which he did brilliantly, and then across .... needed some help and then drawing a circle which he did a wonderful job.

He was also asked to draw a head with eyes, nose and mouth. Alex wanted Sam to draw the ears, body and leg as well .... Sam and Ann was really impressed with him. Ann commented that she can't wait to work with him. Both Jem and I was so proud of him .... we sat through the whole thing watching our son work his magic on these women.

Then came beading ... big beads and small beads ..... he sat there doing marvelously and his face was full of concentration. Both Jem and I could not help but gave a small chuckle as he look so cute with his serious face. He looked like a surgeon performing brain surgery - ha ha ha

After that came a few more dexterity test i.e using a scissor, picking small items, holding it in his palm etc. Finally physical movements starting with catching and throwing a ball and star jumps.

Conclusion: They need to concentrate on these areas - holding a pencil, holding a scissor and body awareness/balancing.

I think I missed out a few things as they did so much with him in such a short time. I guess we will get a report on today's assessment. His next appointment is on the 18th of this month and I hope to be able to video his session to share with anyone whose interested.

We cannot be prouder parents!

It's snowing and he's not going to school

2009-02-02T17:04:00.003Z

(Picture 4 .... uploaded in wrong order)

After much convincing and made a deal with Alex, he stood still and let me take a decent photo of him and his dad.

(Picture 3)

No Camera Please!

(Picture 2)

Look at Mummy, Alex!

(Picture 1)

This is the first decent photo of 2009. I had a hard time trying to get Alex

to look at the camera and smile. It's pure luck I got this one :-)

It's been snowing all of last night and this morning. We woke up to six inches of snow and this is the first time I have seen so much snow in 10 years of my life in UK.

Looking out the window, we saw neighbours' children playing outside with their sled and building snowman. I was a bit lazy and not so enthusiastic as Alex woke up at 5:30am and been coming in and out of our room between 5:30 and 8:00am.

By the time I decided to get out of my comfy, warm duvet .... it was about 10:30am and thought I'll ring the school to find out if school's open. Alex had the day off!

Soon after, a text came to Jem's mobile phone .... it's from the school to inform us that schools close and to listen to local radio to find out if school's still close tomorrow. I thought that was a very good idea from school ... to inform parents of school's closure. Unfortunately, it was a bit too late as most parents would have found out the hard way ... showing up at school with children and found out that they had to take the kids home again. Not so easy for working parents as they had to find last minute sitters or had to call in sick or work from home.

Find it hard to understand how can life pause when it snowed in this day and age? What about people living in countries that snow all year? There had to be a way!

Anyway, decided to wrap Alex up in layer after layers of warm clothing (I could send him to Alaska) and let him play in the backyard .... by now, it's around 7 to 8 inches of snow. He loved it!

He spent a good hour outside playing with his dad and dragging the broom around the garden making a path to walk on. He was so adorable and I could just scoop him up and eat him alive .... hmmm that didn't sound right ..... anyway, mums know what I mean :-)

I love snow!

First step to freedom

2009-01-29T20:06:00.003Z

I felt much better since my last blog. It took me a few days to get over that heavy feeling. I would like to thank everyone who wrote to me showing their concern and boosting my morale.

Let's see .... Alex definitely matured over the last week and I am so proud of him.

Last Friday, I took Alex with me to a Mummy's Group in Bracknell. We meet every Friday morning for two hours to discuss everything and anything .... sharing information on schools, treatment, etc. We all have special need children from genetic disorders to autism and down syndrome. Although our children have different difficulties, we all share one thing in common .... we want the best for our children. Having a support group gives us strength when we are weak, give us voice when we can't speak and give us courage when we are afraid. At some point, someone has gone through what you are going through ... everyone is not afraid to share and everyone benefits.

Anyway, the group provide a baby-sitting service while mummy chats and Alex was so good, he just went with the lady. He looked at me and then said "Bye bye Mummy" and didn't look back. An hour later, he came back with a drawing and was so pleased with himself. I am so proud of him as I was so afraid that he might not go. Looks like I worry too much :-)

On Tuesday morning, I had to attend *Dialogue Group* meeting. Jeremy had to work and I arranged for my cousin June to watch Alex while I go for this meeting. It was really a hectic morning for me as I had to take him to June's at Maidenhead and then drive back to Bracknell for the meeting and then back again to Maidenhead to take Alex to Rainbow in Bracknell. It was all worth it as the meeting was a very good one and I also learn that my son is happy with June.

Yippee ..... freedom at last (LOL) at least, if I need to go somewhere, June can watch him and she doesn't mind at all as she adores him. She offered many times in the past to babysit him but both Jem and I thought Alex wasn't ready.

For some reasons, we made ourselves prisoners ... always thinking that Alex will not co-operate. We didn't give him the chance to and I must say it's mostly Jem's fault. He is the most amazing father and the most protective one too. I am glad that he is what he is but sometimes it could be a bit ..... trapped.

We also received a letter from Rainbow that Alex's Review meeting is in March and a representative from the LEA (Local Education Authority) will attend this meeting too. I hope everything will go well and I will update everyone of the outcome.

*Dialogue Group*

Every member of Dialogue Group has a special need child and we meet every two months with the local authorities to discuss our concerns and how to improve services in the Borough. Bracknell is considered one of the best authorities in the country providing the best service to special need children. This is because, the Authorities listen when we speak and we all want the best for our children without being unreasonable.

Running out of steam

2009-01-21T18:08:00.002Z

It's one of those days that it's a struggle to remain positive and happy and shiny.

I have always been one to pick myself and the people around me up. I can't see the reason to remain low and unhappy when it doesn't really do anything to improve matters.

It takes a whole lot of energy and stamina to remain cheerful and looking at things in a positive way. The gloomy weather doesn't help and of course its one of those days in the month as well.

I had a call from Meadow Vale Primary to confirm our visit to their facilities on Tuesday, February 3rd. I spoke to Linda, the SALT who visited Alex at Rainbow to assess him. I asked for her honest opinion what she thinks of Alex and if there is a possibility that Alex would one day be coming back to mainstream education. I know it's hard for her to answer my question but I really need hope to keep me going.

She too feels that Alex is held back by his speech and not his autism as he was really happy and co-operative when working with her. She cannot see him going to mainstream school even with support from Language unit at this moment in time. All special need pupil attending mainstream must be able to cope without support for at least 40% of their time in school. Alex will not be able to cope.

Would Alex be able to come back to their facility if his speech improved after going to Meath .... say in the next two years? She hesitated for a moment and then said "Yes, perhaps and it depends if we have the place for him. We are full at the moment and it's too soon to tell". I can appreciate that but I am at my lowest ebb today, I need hope to bring me up.

It's hard to admit this but I am not all that strong. A friend asked me sometime ago, how do I remain strong and positive all the time? I told her, I cannot and it's not easy but moping won't help.

Right, I better follow my own advise now and get on with my life. STOP feeling down and put your son to bed. Read him a book, give him a hug and take a nice shower and play some wordtwist. Tomorrow will be better.

Wishing for a Crystal Ball

2009-01-18T20:43:00.000Z

Sometimes, I wish I have a Crystal Ball. I could look into it and see what my son would be like when he grows up. Can he talk? Will he lead a normal life? Have a family that adored him .... when we are no longer there?

I am not saying I want to fast forward time ... I love growing with my son and watch him blossom but I just cannot see beyond his difficulties at the moment. Just like the time when he wasn't potty trained. I worry that he may still be in nappy when he goes to school .... or when he refused to feed himself or when ............

A mother's worry mind will never rest. If we don't worry, are we fit to call ourselves mothers?

We went to Meath School again on Tuesday. We brought Alex and Mrs Dunn with us this time. Mrs Dunn is the closest to Alex among his teachers - since Day One at Rainbow. She asked questions that no other teachers would ask and you know she genuinely care and love our son.

At one point of our conversation, I said that Alex's receptive language is only mildly delayed and he understand everything we said. The Deputy Head, Ian said "I don't believe he understand everything you said" and to demonstrate that he does, Jeremy asked Alex to get him a tissue. The box was in front of the deputy head, Alex took one and looked at Ian to seek permission. When he got a nod from Ian, Alex smiled and gave the tissue to his Dad.

Ian then said that's very good but Jeremy pointed at the box, therefore Alex is just following his signal. I then asked Alex to get me a red cushion. I made sure I didn't point and Alex scan round the room and saw one by him, he took the cushion and walked to me. Ian was really impressed and Alex was very proud of himself.

To be honest, I don't really know what is best for my son. If he start his life at a special school, where will he go for secondary school? There isn't one near us which means he will have to go to a boarding school. I cannot bear that thought.

After touring the school again for Mrs Dunn's benefit, we went back to the discussion room. Mrs Dunn asked if they can see Alex in this school as every child will have to go through an assessment from Meath. Ian said he can but Alex still need to go through the assessment. Then, the crucial question came from Mrs Dunn, where will Alex go after Meath?

All of a sudden, I was awaken and Ian said that he may go to a language unit attached to a mainstream school. He thinks Alex's disability is on the milder end and his speech is holding him back.

I was really grateful to Mrs Dunn for asking the question as I wasn't brave enough to ask him myself. I was worried that he will tell me he cannot be sure as it was too early to tell. From one professional to another, he had to be honest to her. It was music to my ear and I went home feeling happier.

On Thursday, Becca rang us and spoke to Jem. She invited her colleague from the language unit from Meadow Vale Primary, a school near us, (No one told us about this school as everyone felt that the school cannot offer what Alex needed) to give a second opinion that Bracknell cannot offer the language support that Alex needed. Everyone agreed that Meath is the right place for Alex. Officially, they are not allowed to make recommendations but they all have Alex's best interest at heart. We are so grateful to everyone for helping us in this difficult period.

Becca also believe that Alex is held back by his speech and not his autism. She thinks that he is a very intelligent boy and hope Meath is the solution.

We know we are very lucky and I will never forget what everyone did for us.

Doing the right thing

2009-01-09T22:15:00.002Z

Alex came home with another great report from Rainbow.

The report read: Alex has had a good afternoon. He listened to the story well. Alex chose to play in the new home corner. He painted. A good start to the new term.

Such an encouraging report and we have faith that things will get better. I believe going away from his comfort zone and a little bit of sunshine helped our son to grow and mature.

********************************************

I went out for a movie with my girlfriend Jane, tonight. Something happened ...... I don't know how to explain this but I saw a different side of myself and discovered that Jane and I are quite similar.

Jane and I agreed to meet at the Oracles at 5:30pm and we both arrived earlier. I rang her and she was in Boots while I was just getting out of the car. We decided to meet at Debenhams. I had to cross a bridge to meet her and I saw a homeless man sitting by the bench shivering. It was -2 degree Celsius and I could see this man struggling to keep warm even with a coat on. For what reason he sat there I do not know but I had to get away from the cold. I could not stop thinking of him and I felt a certain sadness in me.

We had to cross the bridge again to go over the other side for dinner and cinema. I saw the man again and stopped. I told Jane I had to give him some money to get a coffee or something to keep warm. I could only find two pounds in the dark and gave it to him. Jane started digging as well and the man said don't worry as he doesn't want money. Jane gave him a couple of pounds as well as she couldn't find much in her purse. The man gave us a nod thanking us and I believe that if he had a choice, he wouldn't be sitting in the cold. He doesn't look like a typical homeless man .... he was well kempt but I guess there is a story behind this. I guess he could be one affected by this dreadful economy or he is down on his luck.

Anyway, we went for dinner and where we sat, Jane could see this man. He sat there for awhile and a man walked over to him and they talked for a few minutes. Jane could not sit still as she used to be a social worker and knew what its like to be homeless. We discussed if we should get this man some food as the money we gave him isn't enough to get a cup of coffee in this area. I knew she is not going to rest until she get this man some food.

When we got out of the restaurant, he was still sitting on the bench. Jane and I went the other way to get to McDonalds to get this man some food and tea. When we got the food and walked over to the bridge, the man left.

Both Jane and I were disappointed but we hope the best for this man. Perhaps, he was invited to a shelter and keep warm for the night? From the way he was dressed, this is a new thing for him. His duffel bag looked clean and his Jacket as well. Perhaps ..... he just lost his job and his home ..... I do not know but I pray that this man will be OK.

Baaack to school

2009-01-08T19:52:00.000Z

Seemed like a long time ago I last updated my blog. It's this darn weather you know.

We had the coldest weeks in 30 years and some places went as cold as -10 degree Celsius. We had our heating on all day and boy .... will we flip when the bill comes.

I can count the number of times I went out the front door since we got back ..... in one hand!

Alex is back to school today and he settled right in. His report read: Alex has had a settled afternoon. He has been more vocal, attempting a wider range of sounds. The focus letter is J. Alex ate some jelly. The focus story is Jack and the Beanstalk.

When he got back from school, Alex went to his corner and 'stim' for 5 minutes before he was ready to hug and cuddle - that was his 'me' time. School must have stimulated his rested mind, so much that he needed to do that. He begged to go to bed at six-ish but I refused to let him and delayed till seven (this is unheard of) because .... I know he will wake at five!

Alex's latest craze ..... Shaun the Sheep. He laughed like a mad man when he watch that DVD. He was first introduced to Shaun at Auntie Wendy's when we last visited her before our holidays. And when we were on the plane, Shaun was on one of the channels and again, he laughed like a mad man. When we got back and visited his grandparents, someone gave 'Pops' a Shaun DVD for Christmas and they naturally switch that on for Alex. Again, Alex laughed so hard that delighted his grandparents. They let him keep the DVD.

For the second time in two days, Alex wanted to watch Shaun .... again.

Baaaaaaaaaaa Bob the Builder to the baaaaaaack shelf!

Where are my fingers?

2009-01-02T09:02:00.002Z

2009 ...... I have a feeling that this is going to be a good year.

It's the 2nd of January today and I have 2 things to celebrate. Firstly, Alex's sleeping pattern changed since our return and he now sleeps from 8:00pm to 7:00am. Secondly, Alex wants to talk more and even played pretend.

Just this morning, or should I say half and hour ago (I am so excited that I want to share with you), Alex came to my bed and we had a cuddly moment while Daddy slept next to us. I taught Alex to count with his fingers by folding and unfolding them. It then turned into a game.

He folded all his fingers and said "Oh Oh" and I said, "Where are your fingers?" He said, "Nana Ouse". I then said, "We better ring Nana and ask for your fingers back?"

Alex said "Allo ... Nana? Can ar aff ma mm mm back? Bye bye Nana" and he unfolded his fingers and said "Ahhhhhhh" in surprise. I acted surprised and the game went on with calling Pops (his grandad) for his fingers back and then Dada, Mama, Cher Cher, Ber Er and Uncle Bill.

It was just too cute to not write about it. I am immensely proud of my son and I just want to share my joy.

Home Sweet Home

2008-12-30T20:02:00.000Z

We drove 2 hours from Tampa to Orlando to catch our flight back to London Gatwick.

Arrived at Orlando in good time. Had Dim Sum at my favourite Chinese Restaurant in International Drive (I go there every time I'm in Orlando.). The food is just as good as I remembered but cost a whole lot more than the last time I was there ... for sure.

The traffic at I4 was busy when we went for lunch. After lunch, I decided to get to the airport early instead of trying to kill time elsewhere .... and get stuck in traffic. Was a mistake as it was smooth sailing from I-Drive. We arrived wayyyyyyyyyyyyyyyyyyyy too early as our flight doesn't depart until 6:05pm. We had 5 hours before we fly and found a spot to sit and wait. Meanwhile, Jem and I took turn to go into shops to kill time. Alex on the other hand kept asking to go to the toilet. What's with this child?

Along the way, I lost my new Eddie Bauer puffer coat .... I am still mourning my lost. I have not even worn it and now it's gone. I hope the coat will go to a good home and not destroyed by the airport authority.

We did not sleep in the plane but Alex did. He had his head on Jem's lap and his feet on mine. We couldn't move but that's OK.

When we arrived at London Gatwick, we pass Immigration in a zap as our flight was mainly Americans and only a handful of Brits returning. Got our luggage in no time but had to wait a whole hour for Alex's booster seat. Tut tut tut!

OK ..... got everything and brave ourselves to face the -4 degree Celsius outside. Got on the bus and head for our car at the long stay car park.

Guess what? The car would not start. Called RAC and they got to us in 15 minutes. it turned out that the battery was low. Got the car started and we got home around 11am.

I don't know why our holidays are always stressful. I don't know why we bother to go away in the first place. Spending all that money to stress ourselves further. Need another holiday to recover from the first holiday. I say this every time and we don't learn. I guess we have the case of learning difficulties. Hmmmm ....

Well, we slept all night and woke up at 10am this morning. Did three loads of laundry and another three to go. I have not even though about cleaning the house but that is tomorrow's problem. I am not going to stress my little brain on such small matter.

Stayed in all day and didn't even look out the window. Home Sweet Home!

Hanukkah at Tampa

2008-12-27T20:14:00.000Z

After a whole day of walking yesterday, I told Jem that I have used up my quota for the next decade!

We went to IHOP (International House of Pancake) for breakfast with the Reeds. It wasn't exactly greasy spoon cafe but certainly sticky chair cafe. Adrinna had the great fortune of choosing a very sticky chair .... laced with syrup. She could hear ripping sounds when she move her butt (LOL). It was good food and not exactly cheap but then again ... nothing is cheap these days.

After breakfast, the Greens and the Reeds went separate ways and to meet up for Hanukkah lunch at Bill's mum's house in Tampa Bay.

It's a tradition that the Greens buy a new luggage each time they visit America. We did the same last year because we just love buying stuff. We brought 3 cases with us this time and packed enough for 7 days. We even used space saving bags to give us more space to pack. And that ..... was not enough!

We went to JC Penney, Sears and a luggage shop but we couldn't find a decent one for the money we are willing to part. I cannot believe how expensive luggage cost in America. The prices ranges from $100 to $1000. Both Jem and I looked at each other and thought we came to the wrong place to get what we wanted. We were tempted to walk into Macy's earlier but Jem said it will cost as much if not more. After going in and out of shops, I told Jem that we should try Macy's as we normally get what we want from the last shop. No harm done if there isn't one but have a try and who knows?

Samsonite has a sale on at Macy's and it cost $58 for a 32" wheelie Duffel Bag. I thought it was reasonable considering the silly money we saw in the other places. Next to it was a Pacific Coast 32" wheelie Duffel Bag but without a price tag on. Jem took the Samsonite to the cashier and I went after him and said that I want a price check for this one. When the cashier scanned the box, he told me it cost $39 and I could not believe my ears. I told Jem that I'm going to get this one instead of the Samsonite and he agreed. When I pay for the bag, the cashier gave me an additional 10% discount and I was over the moon.

We got what we wanted and came back to the hotel to pack our stuff as we will be leaving for Orlando early tomorrow morning.

We drove to Linda's (Bill's mum) home and found the house full of relatives. It was really busy but fun. Everyone is so friendly and we had a great time. Linda cooked very good Jewish food which was an eye opener for me and Jem. My only experience with Jewish cuisine is Bagel ..... toasted onion bagel ..... hmmmmm

Anyway, Alex played with the other children as well. He was a bit reluctant at the beginning but decided to join them after Erin took him outside with the other children. Erin is such a great girl and Alex adores her. I am so proud of my niece and I just wished she could be with Alex all the time. I know that is not possible and I can only hope that her plans to visit us next summer will come true.

We left before the Reeds and on our drive back to the hotel, Alex said "Taco Bell" when he saw the food chain. It was so funny how our son could say this so accurately when he can't say anything else. Alex could also say "Kohl" when we drive pass the department store.

We will have an early ish night and tomorrow will be a very very long day.

Boxing Day (Busch Gardens, Tampa)

2008-12-26T23:37:00.001Z

Alex got up at 5am and wanted Breakfast.

He didn't make life easy for anyone. He wanted porridge for breakfast!

Well, you could guess .... we woke the Reeds as well and they were not happy bunnies. That's the trouble with staying in a shared accommodation when you have a young child ....

Got to Busch Gardens before 10am and it was already quite busy. We were all handed a note when we entered the parking area stating that they are expecting the park to be very busy today.

It is not always possible to do thing together when you have a small child. Adrinna and family went their separate way as the children wanted to do the big rides while Alex could only do the little ones. We decided to meet up for lunch and to stay in touch using Erin's cellphone.

Our first stop .... to get a stroller. The park map is bloody useless. It is not easy to find what you want. I had to ask the Janitor to tell me where to get a stroller. When we got there, paid for a stroller, I asked if they do a quick pass for special need children. She was clueless and asked her Supervisor whom is equally clueless. He said "As far as I am aware of, we don't do special passes for anyone". Thanks bloody much!

Not being one who give up easily, I asked for direction to the information counter. Walked around quite a bit and finally found the Customer Service desk at the other entrance (main entrance). I asked the ladies behind the counter if they do special passes and they said yes.

I showed them the letter from our Pediatrician and was told that they needed to see Alex and to measure him.

Great! I had to go find Alex as he was with his dad at the other side of the park entrance. It was a long way to go back and fro and finally ... after measuring Alex and issued a special access pass, I finally get to relax. It was a very stressful morning for me.

We wanted to take the train at Nairobi Station but missed it. Had to wait 20 minutes for the next one and decided to do something else. Our first stop was Rhino Rally. It's a busy ride but we got in straight away using the pass. It was the best ride out of all the rides and Alex enjoyed the whole experience. According to Busch Garden's description "Rhino Rally transports guests aboard an off-road adventure through the wilds of Africa. Guests experience a blend of up-close animal encounters with an unpredictable safari competition."

We went to Scorpion next .... "Feel the "sting" of Scorpion's terrifying 60-foot drop and 360 degree loop at incredible speeds. You can find the Scorpion in Timbuktu...If you dare. You must be 42 inches tall to ride and other safety restrictions may apply." Alex enjoyed it so much and was laughing all the way. Jeremy and I on the other hand .... not so much. It was too jerky when it slowed down and we almost had our neck broken. This is surely a sign of old age.

We were on our way to the Congo River Rapids when we past Congo Train Station and saw that the train will be arriving in two minutes. Went for the train instead. It was a fantastic way to see the park and the animals. Shamed we didn't have our cameras as we put our belongings in the locker when we went for Scorpion.

After the train, we met the Reeds for lunch at Desert Grill in Timbuktu. Adrinna got wet and dry again after Stanley Falls Flume and the kids had fabulous time on Sheikra and Kumba (all the rides that Alex can't go and me ... chicken)

After lunch, we went separate ways again. It wasn't easy to find a ride suitable for Alex and on a full stomach. We walked around for a bit and finally really to face our challenge ..... the Congo River Rapids - the swift-flowing white water of the Congo River Rapids. Spin through a geyser, face an ominous waterfall, and other thrilling obstacles in a 12-person raft.

I was totally drenched when we came out of the ride despite wearing a poncho from head to knee. I was the wettest of the lot. We saw Adrinna and she was about to queue for the ride and took my poncho. I wished her luck!

Trying to dry myself in the hot sun, we then went for a 4D Pirate show at the Timbuktu theater. Came out with a very wet patch on my chest area. What was dried out is now wet again. Whose idea was it to go for the show???? Oh right .... it was mine. All I wanted was a place to rest my tired feet. Alex was alright .... he was pushed around in the stroller while mummy and daddy walked for miles. And ..... every so often what seemed like every five minutes, Alex asked to go to toilet and we had to go search for one. Luckily, they are never short of loo in Busch Gardens.

After the show, I took Alex to two rides while Jeremy watched and took pictures. The ever popular Carousel and Sandstorm.

Sandstorm was a popular ride for smaller children and the queue was never ending. I used the pass for this ride and had to stand at the exit to wait for an attendant to tend to us. There were no one there and I was approached by a man and told me that the queue was at the other end. A woman of Spanish descent came to my rescue as she too had a pass. She said that I could wait there with a pass and the man walked off feeling embarrassed.

I still couldn't get use to this special pass thing as I still feel that it isn't fair to the other children when they had to wait for ages while we walk in without having to wait. But, being a mother .... with a child who can't wait and flying 4,000 miles and paying lots of money to be at the park, I am prepared to face my fear and be a bit thick skin to make my child happy. After all, it was all for Alex.

We went looking for more rides suitable for Alex at the Land of Dragons but could not find it and ended up at the other end of the park in Egypt. We walked around Edge of Africa and saw many animals and shelter to rest our tired feet. I am not sure about other people but to me .... the signpost and map are useless. I can't find Land of Dragon and we are still wondering if it existed.

We met the Reeds again for KaTonga, a musical of tales about animals in the jungle. It was very good and a close resemblance to Lion King the musical. I haven't seen the Lion King but I have watched their promos and it was very much like that. It was a good show and I would recommend it to anyone. Alex enjoyed the show and was really excited when the monkeys went somersaulting.

After that, we had snack and drinks with the Reeds and called it a day when Alex complaint about tummy ache. The Reeds stayed on for the rides as it was a bit quieter now.

We got lost on our way back to the hotel and Alex kept saying "Mumma go go hotel .... poo"

Alex really need a Poo and he wasn't joking. Sounded a bit yucky to mention here but he exploded when he sat his bum on the seat. That's all I could reveal - LOL

Summary: It was a good day but stressful at the beginning. I prefer Disney to Busch Gardens as Alex is still too young to fully enjoy the rides. The customer service was poor as they don't know what Autism is and couldn't be bothered to find out making a parent with special need child feeling like a beggar. Disney on the other hand, was great. Didn't need to show them Alex for measurement and was treated respectfully.

Happy Christmas and Merry Birthday????

2008-12-25T23:59:00.002Z

It's Christmas and it's also my birthday. Somehow, it doesn't felt like either.

No Christmas tree (the Reeds are Jewish), no waking up to a cold frosty morning (Florida ... what did you expect) and Road trip ..... yeah (????) lets see ..... lost count of the hours on the road from Tallahassee to Tampa.

According to my trusted (???) SatNav, it should take us 5 hours and 15 minutes (if I recall that correctly) from Tallahassee to our final destination. However ...... we stopped in Ocala for Christmas lunch at a Chinese Buffet restaurant. It was nice and I liked the food but Christmas is not Christmas without Turkey, Beef or Pork with loads of veggies and Brussels Sprouts (yucks). Gravy, trimmings, cranberry sauce and Yorkie Puddie.

After lunch, it was back on the road again. Bill drove his car with his loving wife and children sleeping while I drove our rental Toyota Corolla with my happy family. It was a long straight road and really .... it doesn't feel like Christmas at all as there were many people traveling on the road. We got bored and I overtook Bill for a bit and then he overtook me and we lost him completely.

We then relied on our trusted SatNav which hasn't failed us yet .......

As we reached Tampa, we were taken to a housing estate in some miles away from where we need to be. We were lost!

Adrinna rang and they too were lost. No SatNav nor Google Map could take anyone to this place as it is a new hotel by the airport. After getting lost a few more times and going through parts of Tampa that no tourist should see, we finally reached the hotel in one piece.

I don't know what you call this but we have two rooms with two double beds in each room, a small living area with a sofa bed and a small kitchen with microwave oven, dishwasher, hob and oven and even a waste disposal in the sink. We were quite impressed. Adrinna and family in one room and the Greens in another.

We all went down to the pool after settling in, Alex was holding onto Erin the whole time and Joshua went swimming and annoying his sister. They had fun!

It's supposedly Christmas and every where's closed. Jeremy fancied a cold beer ..... and we need stuff. Adrinna and I went out looking for milk, drinking water, food and Beer. We found Walgreens and got what we needed and more.

That was our day. It didn't felt like Christmas nor my 39th Birthday but on the brighter side of things, I had my sister's family with me and my own beloved family.

Day 7 - 15 (Tallahassee) Shop till you drop

2008-12-22T23:32:00.003Z

I cannot believe I'm saying this. Shopping is boring!

There isn't much to do besides shopping and eating in Tallahassee. It's not one of those places a tourist would go. The biggest thing that happened in Tallahassee was the 2000 Election where media around the world came to Tallahassee for the election results.

It is however, a nice place to live. People are certainly friendlier here than back home but then again, I am meeting all my sister's friends.

We had a great time here, Alex is very happy with his cousins. Erin adore Alex and Josh played with him quite a bit. We are going to miss them very much. I tried spending more time with my sister as I don't know when I will see her again.

Alex is speaking more everyday. He is stringing words forming a sentence. Just this morning, he said "Dada meh apple jui" he would previously say "Dada go go apple jui". He is using the word 'make'.

He also said "I can't get down" the other day (I sat him on the bathroom counter and he wanted to get down).

We took Alex to the park a few times and it's one of the things we can use to keep him calm. He has been very good going in and out of shops with us and when he starts getting fidgety, we'll say .... "Do you want to go to the park?" he will say "OK" and we'll then say that we will go as soon as we finish shopping. It works ... all the time.

Alex has been very close to the family golden retriever, Belle. He is not afraid of her at all and would let her lick his feet. He would sit very close to Belle and stick his feet on her nose. She'll lick him gently and he laugh.

We're so glad that Alex is enjoying himself and can't help to think what would he be like when we get home.

Only 5 days to go but it felt like a long time when you are doing nothing but shopping and eating.

Day 6 (Tallahassee) BatMitzvah

2008-12-13T22:45:00.000Z

Mazeltov Erin! and Happy Birthday!

My beautiful niece is now a young lady. I am so proud of her.

I cannot believe how time flies. My little niece turned 13 and I am not even ready to let her grow. I am extremely proud of her and I know I'll always will.

The Reeds left for the Temple early and the Greens .... as usual take their own sweet time but managed to arrive on time for once. The culprit here is of course ..... Me! I have a serious problem and that is time keeping. There are previously two important occasion that I managed to be on time. My first date with Jeremy and my wedding day.

Being on time for Erin's BatMitzvah is a good omen.

Alex had a short tantrum, refusing to go to our seats, I tried consoling, bribing and anything I could think of to make it less embarrassing .... nothing worked. My last resort .... I pulled him outside and went down on my knees .... No I wasn't begging!

I said to him sternly, "Stop this INSTANTLY! I will not have anymore of your tantrums! Go sit down and be quiet. Do you understand me?"

To my surprise and to Jeremy's .... he went to the seat quietly and remained that way until the end of the service. Two hours later, Alex is still well behaved and we were so proud of him.

After the service, we had lunch and then Disco. Alex danced with me the whole time and at one point, a little girl came to him and asked him to dance. I had to tell her that Alex is shy but thank you for asking though, she looked so disappointed and I look like the control freak mum - LOL

It was a long day but we all enjoyed the occasion.

Day 5 (Orlando - Tallahassee)

2008-12-12T23:50:00.000Z

Road trip day!

Driving over five hours and over 200 miles from Orlando to Tallahassee, we've finally arrived at our true destination.

We arrived earlier than planned to find an empty house. My sister Adrinna is busy picking up stuff from shops for the big day. Bill and Erin practising for the Big day at the temple while Josh was still at school.

It wasn't long after that everyone finally got together. It was great to see my niece and nephew. I realized how much I missed them. Alex picked up from where he left last year. He instantly bond with his cousins and soon played chasing and wrestling together.

Adrinna offered to cut Alex's hair as we failed to get this done at home. It was amazing how Alex sat so still and cooperative. She did a great job!

I didn't get to talk to Adrinna after that as she had to go to the temple again.

We went to bed early.

Day 4 (Orlando) Tornado Watch

2008-12-11T23:00:00.000Z

Looked like we planned our holiday quite well ..... so far. We did Magic Kingdom on the best day of the week.

We woke to a yucky rainy morning that turned into day ... there was a Tornado Watch. We didn't dare to venture far and went shopping at Orlando Premium Outlet Mall instead, as it was just a short drive away from our hotel.

It wasn't easy going in and out of shops on a rainy day as the shops here are like strip malls but on a larger scale. Getting from one section to the other required an umbrella, a Pancho, newspaper or whatever you can find. If you don't have either, try running for your life as the rain is not just drizzle it's RAIN.

Alex was very good ..... up to a point .... after we got all his things that is. We got him loads of clothes from Gymboree and Osh Gosh. I have to say this ..... children clothing ARE definitely more interesting in America.

By the time we finished with Alex's shopping, he was tired of going in and out of shops. If we hadn't hired a funky stroller, I don't think we could last this long. We didn't get much for ourselves as when Alex is not in the mood, there is no point for us to go on.

Before we left, I quickly ran back to Eddie Bauer to get my goose down jacket. I saw this on our way in the mall and that was the only thing I got for myself.

We ordered Chinese again and as usual, we ordered too much ..... again. Had an early night as we needed to travel early in the morning.

Day 3 (Magic Kingdom, Orlando)

2008-12-10T23:06:00.000Z

Hot, humid, lots of walking and oh so tired!

Despite all my moaning, it was all worthwhile!

The smile on Alex's face brought a lump to my throat. Watching my son laugh with joy riding on the carousel horse, made everything alright.

Our day started very early, waking at 4:00am.

At 8:00am, we were then picked up from the hotel to Marriott's Vacation Club for a supposedly 45 minutes non obligational presentation to get $100 Disney Dollars to spend.

After the presentation, we went to Magic Kingdom and arrived around noon. Although this is not the first time I've been, I was still mesmerised by the beauty of Cinderella Castle.

This visit is not about me, we decided to let Alex make all the choices for the day. Doesn't matter what mummy wants ..... it's all about Alex this time.

We started with Steam train ride around MK from main street station. Followed by Big Thunder Mountain Railroad - Alex was laughing with excitement. Our boy is an adrenalin junkie!

Had lunch and followed by The Magic Carpets of Aladdin, Jungle Cruise and Pirates of the Caribbean.

Straight after, we were just in time to catch the Parade - you were never in Magic Kingdom if you don't have photos of the parade to proof your presence - LOL

After the Parades, we headed to Cinderella Castle for Dumbo the flying Elephant and Cinderella's Golden Carousel.

Finally, at Tomorrowland - we accidentally went into Stitch's Great Escape! and pleasantly surprised by the 4D show. Alex enjoyed it so much that he was clapping and laughing all because Stitch stole a sandwich and burped on us. It smelt of onion breathe and it was awful. Because everyone said "ewe" at the same time, Alex giggled with excitement.

After Stitch, we went to Buzz Lightyear's Space Ranger Spin followed by the grand finale .... TTA (Tomorrowland Transit Authority). Sounded posh but it was just a train that go round the buildings.

It was certainly a grand finale ride as we were stuck in the train for at least 15 minutes in the dark because some crazy woman left her carriage and walk in between the tracks. They had to stop the trains to get her out. What a nightmare but thankfully, Alex is OK with it.

We planned to stay for the fireworks at 8:00pm but because it was a long day and we were tired of walking, we decided to head back to the hotel and rest. Alex was really tired as he was awake for 14 hours. We left at 6:00pm.

During our six hours at MK, we enjoyed every moment of it. We got a special pass for Alex and used the Fast track lane for almost all the rides. If we hadn't, we would only be doing half of what we did today. To fully enjoy the park, you need at least three days to do any justice to the place.

We hired a stroller for Alex and that made a big difference to our day. I would recommend Disney Parks to any special need families as it's such a friendly place to be.

Entrance to Park x 3 = $226.86
1 1/2 hrs Presentation = -$100.00
Parking at Disney = $12.00
Stroller Hire = $15.00
Lunch x 3 = $28.00
Souvenir = $5.00

Smile on Alex's face = PRICELESS!

Day 2 (Orlando)

2008-12-09T23:37:00.000Z

After much needed sleep and rest, Alex woke at 3:00am Orlando time. When Alex wakes, everyone wakes!

We all went back to sleep an hour later and woke up at 9:30am. Well rested and happier, we decided to have a quiet day to chill.

Went to Waffle House for breakfast and decided to do the tourist thing .... taking photos of our food - LOL

Went to a tacky gift shop for a walk ... the American do everything in an over sized manner - not being disrespect to my American readers but everything is much bigger compared to the Brits.

Even the gift shop is tackier than any I have seen.

After breakfast/brunch, we drove to Publix to get a few provision and dinner. We decided to pick up some fried chicken, coleslaw and potato from the deli. I have to say, the American makes food look interesting and not like us back in England with limited choice from a supermarket that is. Pick up some freshly made Sushi .... hmmmmm scrummy, just mentioning it now makes my mouth water.

Got back to the hotel for a swim and then rest. Later went for a walk by the hotel to checkout the food centre .... No biggie.

We decided to take a drive to International Drive and Jem drove this time. It was getting dark and he missed a turning and took us onto a highway and learned our way around after paying $2 for tolls.

International Drive, not what it used to look like eight years ago when I first visited Orlando. It was beautiful in some part with lights decorating the trees, looking magical. At the other end of I-Drive, tackier than anywhere I've seen in my years of travelling. The closest resemblance to the places I've visited is Phuket's Patong Beach night Market.

Don't get me wrong, it's nice just not my cup of tea. Meanwhile every bus that we passed, Alex would say "purpur ba go go airport" or "bu ba go go airport" all the way and back our drive. Our son is obsessed with airports and I bet I know where he'll work when he gets older.

It was a pleasant day 2 of our holiday.

Day 1 (London - Orlando)

2008-12-08T23:17:00.000Z

One of the most stressful day of our lives!

It was a long long long day but we cannot be prouder parents. Alex was amazing despite all the waiting, waiting and waiting.

We all woke up at around 5:30am and left the house at 7:05am. Traffic was ... Well, what do you expect on a Monday morning? It was rather awful on the M3 but as soon as we got onto the M25, it was rather smooth sailing but not for the other lot at the opposite direction.

Alex was really excited about this trip. We prep him with social stories on the transport mode. First we go on car then bus from the long stay car park to airport. Then train (monorail) to boarding gates and the airplane to Orlando in that order. However, things are never what it seem in real life and social stories especially the author mainly the mum was not up to date with the travel arrangements. She thought it was the north terminal that we are flying from. Well duh! We flew Virgin Atlantic this time which flies from the South terminal (she previously flew on other airlines).

Anyway, Mummy the control freak likes driving and drove past the entrance to the long stay car park and ended up dropping Daddy with the luggage at the terminal. Thanks to Daddy's quick thinking about social story, Alex came with mummy to the car park to board the bus to the terminal.

When we were at the terminal, Alex kept saying "choo choo" but we had to tell him that we don't go on the train at this airport. He was really disappointed but he got over it after saying "choo choo" what seem like a hundred times.

Finally, on the plane! Cannot be prouder with our pain in the backside. He was very well behaved but very fidgety too. He didn't want to sleep and trick his dad and me a few times that he wanted to poo. Well, I knew he needed to as he let go a few smellies when he sat on me. It had to be me ..... aiyah yah yah yah!

By 4:30pm, five hours flying time and after tricking us six times that he wanted to poo, it's my turn to take him to the toilet. Imagine this .... in a small cubicle, my little boy on the bog, straining away while mummy knelt to see if he's doing it, plop came a long one followed by one squirt of 'eau de poo' and another long one and another squirt. The relieve on his face while mummy turned green.

It's strange how he does it like clock work, always at around the same time, not sooner not later.

Meanwhile, mummy and daddy had to endure a whole nine hours of "airport?" his way of saying "are we there yet?" Holy mo! For one limited speech boy, he sure can drive us crazy!

Can I say finally now? No ... but it was finally landed on American soil but not pass the immigration yet. You would think that we will be welcome with open arms but No! There seem to be an attitude with these guys. Considering we are bringing money into this country, we had better treatment from immigration from Atlanta the last time but these Floridians are a different species.

Queued for an hour with 800 other Brits, it was hot and noisy and we can't wait to get to the hotel but all these while Alex was a gem.

After waiting for our luggage twice, we finally had our rental car. Zap on our SatNav and key in the hotel address. "No Match for address" I told Jem to ring the hotel but he said, "we won't miss the hotel it should be along Vineland Road." After paying two tolls at the turnpike, drove along Vineland Road twice, we were no where near Marriott's.

We had to call the hotel and was told that they are at Vineland Avenue, 12 miles from where we were. Meanwhile, it was 7pm Orlando time and 12 midnight UK time, Alex finally fell asleep on the back seat. He was awake for 19 hours and did not complain while mummy and daddy biting each others head off.

Finally! Reached the hotel, checked in, ordered Chinese for dinner and hit the pillow straight after. Don't ask me what time but all I know it's not soon enough.

We cannot be prouder parents but we are ashamed of our own behaviour for snapping at each other.

Have Bribery will travel

2008-12-06T18:13:00.002Z

Just got home from Auntie Wendy's house in Little Hampton.

It was a cold and sunny day .... we had a great day with Auntie Wendy, Sue (Jeremy's sister), Peter and George (her husband and son).

We are all very proud of Alex.

We went out for lunch at a local cafe and it was really busy. Auntie Wendy made a reservation for between 1pm and 1:30pm but because the cafe was really busy, they put her for 1:30pm without letting her know of the changes. We arrived at 1pm and had to wait a whole 30 minutes for a table.

Alex was so patient and happy while waiting. By the time we ordered and having our first course, it was 2:15pm. Alex started fidgeting and small tantrums emerging .... (he woke up at 3:45am), he was hungry and he was tired.

I told Jeremy to go to the counter to get a roll of Droste chocolate (my favourite) to calm Alex. When Jeremy got to the table with the chocolate, I let Alex hold on to them. I told him that he had to sit nicely while waiting for his Spaghetti Bolognese. He can only have his chocolate if he eats his Spag Bog. It worked wonders!

He waited patiently for his Spag Bog and then when it arrived, he refused to eat it. I took the chocolate away from him and let him have his tiny tantrum - jumping on the spot.

We all looked away and continued our lunch while he stood there looking. He calmed down and then I gave him a spoonful of the Spag Bog. He ate it, and then sat down to have some more. He ate a good 3/4 of the plate (it was a generous portion for a four year old) and then we all praised him for being good. He then said "Cho co har" .... as promised, I gave him two discs. He was really happy and we were well impressed with our new strategy - ha ha ha

Looks like bribery goes a long way ............................

Tweet tweet

2008-12-02T07:16:00.001Z

Woken to the sound of rumbling thunder?

Nope .... it's Alex dragging his toy box and stools around his bedroom.

I got up to see what the fuss is all about. What I saw put a smile on my face.

Alex stripped his bed and moved all his pillows and duvet to make a comfortable little nest on a platform next to his drawers. He dragged his toy box and stool to build a step to reach his nest.

He could have easily got onto his nest all by himself but as soon as he saw me, he said "mumma ..... I can't". He wanted me to help him up.

Alex could do anything on his own but as soon as he sees us or someone he knows pretty well, he will ask for help.

Anyway, after I helped him up, he made himself comfortable and said "tweet tweet".

It's quite strange! (I read quite a bit about autism in forums and discussions where parents share their experiences on what their children do.) Autistic individuals, mostly children like to strip their bed to make a nest on higher places. Is there a reason?

Could it be a characteristic of autism? Similar to hand flapping and repetitive behaviour, he find comfort in building a nest.

I wonder .......

The joy of being a mum (sometimes)

2008-12-01T08:17:00.001Z

My mornings are mostly filled with surprises and laughters (that is when I have enough sleep).

Monday morning .... The first day of December, I was half awaken by a weeping child. He came to my bed at 5:30am and wanted a hug. We cuddled abit and I fell asleep.

7:00am - I was awaken by "oh oh" and then an empty Tupperware on my face. Alex has eaten all the chocolate tea biscuit for breakfast. He then said "mumma .... Apple ju".

I knew there weren't many of those biscuit left in there as Jeremy had them in the study ... he would have eaten most of them. For all I know, Alex might just have licked all the crumbs (one of those life mysteries) off.

Anyway, back to apple juice. Got up, and on my way downstairs, I passed the study and saw ..... Bob the builder book opened, with all the shapes placed correctly. (Alex got this book from his Aunt Susan yesterday and it's one of those 3 in1 books where you can read, place shapes in certain places and press on the shapes to make sounds.) I was well impressed with my son. Further at the corner where the desk is, he placed his fire engine with it's ladder up against the chair. A fully extended measuring tape placed from the desk to the fire engine via the chair ... as if someone is trying to escape from the scene.

Well, if anyone say an Autistic child is lack of imagination, please come see Alex.

I went downstairs to get his juice and I belted out the biggest laughter I've ever made, Alex decorated my scrabble board with the tiles (picture of evidence to follow) around it.

Made his juice and went upstairs. Quickly grab the camera to collect evidence. Turned on the light and what did I see? Alex with a Hitler moustache.

If this is not joy of motherhood, I don't know what is. I count my blessings everyday for having such a delightful son and a loving husband.

2008-12-01T08:16:00.002Z

My scrabble board decorated by tiles

Fire Engine to the rescue

Bob the builder 3 in 1 Book

The rest of the shapes

I am the Boss!

2008-11-25T09:53:00.001Z

Well, he is the Boss alright. And there is nothing we can do about it. In this case anyway.

For almost three days, Alex consumed around a cup of water at the most. The reason?

We changed his bottle. Alex could drink from a cup, using a straw on just about any drinks. There is only one thing he would drink his water from - is out of his favourite Tommee Tippee straw-like teat bottle.

We tried to wean him off from that and replaced an upgraded version of his bottle but he just can't take on to it.

We persevered for two and a half days and he only manage to consume about one cup at the most. Consequently, we have a dehydrated, cranky little Alex over the weekend, yesterday and this morning.

We had to give in or we would be very bad parents. This is one thing we cannot insist upon.

I think I know the reason. Alex like drinking his water laying down or leaning against something soft, relaxing. That is his way of winding down and quality moment. For us to take that away from him doesn't feel right.

We don't take his bottle out with us and he only used them at home. I guess the bottle could stay for now ..... Until he is ready to change.

What a great day!

2008-11-21T21:20:00.002Z

I am sitting here updating my blog with a nice glass of Rose. It can't get any better than that!

Alex went to bed at about 6:45pm tonight. No tantrums, no fuss .... just so nice to have him back.

I guess the day started nicely for me as Jeremy let me stay in bed until 10am and served me my breakfast in bed. I can't stress enough, I am the luckiest woman.

Alex and I had some quality time before going to Rainbow. We danced to the music from the iPod, we shared cuddles and I just love him so much. He was so cheeky, making me laugh all day.

When he got home from Rainbow, he played with his toys, come to me occasionally asking for some attention and let me finish with my Christmas cards.

He was a bit of a sod though, when it came to dinner time. I asked him if he wanted pasta for dinner and he said yes. I cooked and when I was about to feed him, he smell his food and then ran upstairs screaming as if he was served with a bowl of poo. It was his favourite, tuna pasta and he decided today it is no longer his favourite.

Jeremy gave him a bowl of cereal instead and he sat there eating them happily. We have decided not to push or force him to eat when he obviously doesn't want to. I know if I push him, he will have a mouthful and then spit them out onto the floor. I would have more to do.

When it came to bed time, we asked if he wanted to sleep and he said no. We stop at that and let him play with his toys. Later, he came to me, sitting on my lap and snuggle up to me. He yawned and was about to fall asleep when I asked him again if he wanted to go to bed. This time he said yes and we went upstairs.

As soon as I tucked him in, he signed in makaton for book. I read him his story and then said good night. He called for me and when I sat next to him, he gave me a great big hug and then said "nite nite".

I am so proud of him and I guess it has a lot to do with my well being too. If I am all stressed up, it would have been a different outcome.

If I force him to eat his pasta, I wouldn't be sitting here sipping my wine.

Mummy the detective

2008-11-21T09:48:00.001Z

After giving much thought about this change in Alex, I decided to use the iceberg method to determine what the possible cause that is turning my son into a brat.

Much thinking and remembering, I think I know what causes the problem.

The heating!

Alex has been waking up really early in the morning and then sneak into our bed, wriggling and fidgetting, digging his cold feet into me. Rather than having two uncomfortable people and not enough sleep, one of us usually gets up (we take turns).

We were so tired of this arrangement and thought that the cause of his early rising is due to the heating. True enough it was. He has been sleeping through and waking at an acceptable hour. The downside to this is that we have the heating on all night.

It's too hot for us and Alex is sleeping on top of the duvet. His bed is right next to the radiator and it's hot hot hot. I think he is feeling hot inside and hence the temper tantrums.

I have been having sore throat and Jeremy headache for the whole duration of the heating being on all night.

We have to find a solution for this problem. Finding the right temperature is quite difficult unless we install a very expensive climate control system in the house. It's trial and errors from now on.

I want my lovely Alex back!

I don't want to go to bed

2008-11-20T22:29:00.002Z

What's new with Alex?

He doesn't want to go to bed.

It's been almost a week since he decided to make our life a little more exciting by defying us, when asked to go to bed, he will cry inconsolably, throw himself at me or jump on the spot with frustration. It's getting very stressful for me to see him acting unAlex-like.

He used to go to bed at 6:00pm. Happily and willingly go to bed as long as we read him a book. Those days are over and the new Alex emerges.

I told Mrs Dunn, his teacher at Rainbow on Tuesday about the changes in Alex. The temper tantrums and the throwing himself at me or the floor when he doesn't get what he wants. I asked her if there were any child in the nursery or Rainbow that does that, perhaps Alex saw that and copied the behavior. She said "No .... definitely not. We do not tolerate tantrums at Rainbow and none of the children does that".

She said it is actually a good thing as Alex has always been a passive child and to be able to think for himself is a positive sign. Easy for her to say .... and I told her that. She laughed.

So, I guess I should trust her and see how long this behavior will last.

Mirror Mirror on the Wall

2008-11-17T10:55:00.002Z

I don't know where he learn this from but Alex loves looking into the mirror and make different expressions and the appropriate voice to go with it.

I am not joking but he has been practicing how to whine, whinge and even cry in front of the mirror.

He even did this right in front of me leaving me speechless ... LOL

I am not sure if he practiced throwing himself on the floor crying but he did this a while ago because I said I will give him his cheese in awhile.

If this doesn't earn him an Oscar, I don't know what will!

Longest four minutes

2008-11-16T23:08:00.001Z

How do you discipline a Cheeky Monkey?

The answer is extremely difficult!

It's Sunday and it's not a day of rest for me when Jeremy is at work. I have Alex all to myself and piles of laundry needed washing.

I was in and out, up and down all day. Alex wanted my attention but I have so much to do. I feel guilty leaving him watching tv all day.

So, every so often ..... I give him hugs and tickles.

Came mid day when I sat in the lounge folding the laundry. Alex sat next to me watching and giving me that mischievious smile. I knew what he was about to do, I gave him a warning and he walk away looking back checking if I was looking.

All of a sudden, he lifted one of the folded pile and drop them on the floor and laughed. I was so angry that I screamed at him and asked him why. He looked at me and he knew what was coming. I gave him a slap on the backside and told him that he is naughty. It is not an acceptable behaviour.

I sent him to a corner and asked him to sit there for four minutes. He sat there quietly and look at me. Meanwhile, I continued with my work and watching him at the same time. He looked at me and gave me the sweetest and cutest smile.

I had to put a stern and angry face on but I was dying inside trying to stop myself laughing.

It was the longest four minutes of my life!

He sat there until the four minutes was up. I asked him if he knows he had done something wrong and he said yes. He gave me a hug and then the biggest cuddle.

It's so hard to be angry with Alex.

Too good to be true

2008-11-16T09:39:00.001Z

Since having Alex, we have never had a sleep in past 6:00am. Well unless one of us get up and let the other sleep.

Jeremy went to work early this morning, so I won't expect to get some peace after 6:00am.

Normally, it would be "ma ma baa" and then "ma ma ba ha" that's bath and breakfast.

So, when I was awakened by the sounds of click clack cluck and followed by the strumming of a guitar, I knew he was up to no good. I turned over and saw 7:45am on the clock and quickly jumped out of bed.

Ran to the room next door and guess what greet my presence?

Alex holding a bunch of colour pencil smiling. On the floor, pieces of play dough in a line all over the room and the guitar on the floor.

Jeremy's guitar has gone through a lot since Alex. Look, check and found nothing suspicious looking on the surface.

As I pick the guitar up, I heard something in the hollow. Shook it and then parts of mr, mrs and miss potato head started to fall out one by one.Balloons and pieces of tissues all been hiding in there as well.

So, this is how my son keep himself entertain while mummy is sleeping. Well, I'm glad it's nothing serious but I ache for Jeremy's guitar.

Well, bye bye sleep and hello clean the mess up now.

I was in time to catch him before he start being Picasso and put his masterpiece on my wall.

Too good to be true. There will alway be something.

2008-11-15T17:27:00.000Z

The Green Project

Click on photo to view album

God bless the Tallamys

2008-11-15T09:02:00.001Z

This one is for Andrea and her family.

I met Andrea through Rainbow and invited her to join us at Friends of EarlyBird. Alex used to be in the same class with her son Joseph.

We became good friends and have a few play dates for the children.

Andrea gave birth to her youngest son Benjamin on 12th November. Unfortunately, the baby died before birth.

God bless Andrea and her family.

Trying it on

2008-11-10T20:25:00.002Z

Alex has been a difficult child lately.

Short tantrums, refusing food, rebellion ..... anything that can make my life a little harder.

Jeremy and I made a decision to always agree with each other when parenting Alex. If one says "no" the other will say the same. If we don't agree with one's decision, we will let that go once and then discuss in private. Never ever disagree in front of Alex as he will learn to manipulate us.

For a child with ASD, Alex certainly do not have learning difficulties. He knows how to gauge our moods, look at our expressions and hatch a plan to get what he wants. A cheeky little devil in the making.

So, when daddy said no, Alex will run to mummy. As soon as he hears me say the "N" word, he will throw a tantrum. He will continue for a moment and then look up and see if he is winning the battle.

Most of the time, we can distract him with something else. If that fail, Jeremy will put a stern voice on and say "We don't do tantrums in this house". Miraculously he stopped.

Daddy is always the fun guy and mummy is always the baddie. When daddy raise his voice, he knows he is in big trouble.

Alex has been a bad eater since last week. He will smell everything before he put in his mouth. What used to be his favourite is now history. He survives on cereals, porridge and muesli.

I am not sure if getting dark earlier has any effect on his appetite. I recall he was like this, same time last year. He will only eat porridge last year but has now added Muesli into his favourite list.

I guess it's not so bad as Muesli is good for health but will he get all the nutrition he required for growing?

Alex has grown 3 cm taller over night. I only found out when his car seat needed adjustment. All his new trouser are now just right when it was a little too long last week.

I seemed to be complaining all the time .... ha ha ha

In the Summer, I said Alex is a Gannet ... can't stop eating. And when he stops eating, I worry.

Do you think children go into hibernation as well? Eat less in the winter to avoid indigestion?

Alex's first Sparkler

2008-11-06T17:11:00.003Z

Jeremy lighting the fuse

Alex didn't want to hold them. As soon as we give him one, he'll put them on the ground.

I decided to stick them on the ground while he watch.

Well, at least he held one and not totally a waste of money.

Having said that, if he enjoyed them, it doesn't really matter how he play with them. Just because traditionally, children held them up high .... doesn't mean that you can't play it any other way.

2008-11-06T17:05:00.004Z

It was too dark to see Jeremy lighting the rocket. But it gives you an idea of what it was like. I was holding Alex back and try to film this at the same time.

We enjoyed the fireworks very much.

Memory of an Elephant

2008-11-06T10:25:00.002Z

Alex never forgets. When you tell him something or should I say promise him something, he make sure you do it.

Yesterday was Bonfire Night and I told him the night before that I will get him some fireworks. The condition is .... He has to go to bed.

When he woke up, he asked for fireworks. Although he couldn't say the word, he made the sound of rockets and used the makaton sign for flower. I think he made up the sign but coincidentally similar to the makaton sign.

So, I went to Sainsburys to get them.

As soon as he walked in the house after the taxi dropped him, he asked for it again. We told him that we have to wait till it's dark outside. He waited patiently for an hour and when it was dark outside, he went searching for his Dad. Jeremy was in the toilet at the time, Alex went in and grabbed hold of his hand and said "Dada go go".

Alex then grabbed his coat and shoes and pushed his dad out the back door. What a persistent child!

We had fireworks and sparklers. Alex enjoyed them so much. It's great to see the smile on Our son's face.

The excitement was overwhelming for him. He refused to go to sleep after that. I had to bribe him by telling him that if he go to sleep, he can have the special yoghurt I bought him tomorrow. He went to sleep without complaining. Bless!

Guess what he asked for after breakfast this morning?

Alex the Train Engineer

2008-11-04T12:10:00.002Z

Taken two days ago.

Alex is getting very good with this. He had very little help from Daddy and he designed the whole thing. He likes using the curve and branched track to make his railway line.

Pie come here

2008-10-30T13:13:00.001Z

We had lunch at TGI Friday today.

After lunch, Jeremy briefly asked me if I wanted dessert and I said " no". All of a sudden Alex looked our way with glittering eyes and said "dessert".

We looked at each other and laughed and then asked him what he wants. He said "pie".

We then said to wait for Daddy to ask for the menu. All of a sudden, he shouted "pie ... Come!"

Cheeky Devil!

Also another milestone today, Alex drank the whole glass of orange juice using a straw. This is the first time he managed to do that. Call for celebration ..... Pie Come!

Discharged!

2008-10-28T21:13:00.005Z

Well, I didn't want to say anything until I am sure of it.

If I have shared this much earlier, one thing will happen and that is my sisters reading this will get panic and either write or phone me to find out. I believe it would be the latter. My sisters, bless them .... cares deeply for me and me them.

About six weeks ago, I had this constant headache in the morning. It went on for four weeks and I thought I better check with my GP. He did some test on me and then prescribe pain killers (which I didn't want to take). He told me to get my eyes tested and would refer me to Wexham Park Hospital's Neurology Clinic (just to be on the safe side).

About a week after my appointment with my GP, I received a letter from Dr Wade's Neurology Clinic confirming my appointment on Monday, 13th October. Meanwhile, I called Boots to make an appointment to see the Optician.

Monday came, dropped Alex with my in-laws and went to the hospital for my 9:40am appointment. As soon as I arrived, I went in to see Dr. Wade, did some test, looking into my eyes with a torchlight, checking my peripheral vision and reaction etc. Was told that nothing's wrong but he would like me to get a blood test and a CT Scan (just to be on the safe side). Will see me in two weeks after receiving the tests results. In and out of the appointment in less than 15 minutes. Both Jeremy and I were wayyyyyyy impressed with the National Health Service.

The next day, I went to have my eyes tested. I need glasses .... I am astigmatic. I was told that I need glasses to read and when on the computer. Boo Hoo .... after dodging glasses for over three decades, I need them now.

Blood Test, Friday 17th October. Three tubes of blood were taken and Boy ..... it hurts but not too badly.

Thursday, 23rd October - CT Scan. Again in and out of the appointment in 15 minutes. Very impressed as well.

Yesterday, 27th October. Dr Wade .... all clear and I am being discharged. I was told that I have a round head and that I have a good normal brain. No malignant growth and my blood test also showed that my cholesterol level is normal (not bad for a thirty something hitting the 4 0 next year) I told Dr Wade that I am disappointed as I thought I was a genius and having a normal brain was not good news to me. We shared a laugh and Boy ..... am I relieved!

All in all, I have to give top marks to every services I received from NHS and thanks to all the great people working for the service.

Report from Consultant Paediatrician

2008-10-26T10:37:00.003Z

Here's the latest report from Dr Irani after our last visit on Wednesday, 22nd October 2008. We received the report on Friday, 24th October 2008.

I have only praise for Dr Irani as he is efficient and understanding. He knows what it's like for parents to constantly searching for answers and he try to explain to us and assure us that we are doing the right thing for Alex.

Although the Internet is God sent, there are also many conflicting reports and very much out of date. It's best for parents to check with the Professionals before trying to make conclusions that may not benefit their child.

Dr Irani put us onto the right track with our latest doubt if Alex is Dyspraxic and may not be Autistic. If we persist that route, Alex may not get all the support he requires if the ASD label is taken away.

Here's the report:

MEDICAL DIAGNOSIS/CURRENT DIFFICULTIES:

Generalised developmental delay (Mummy's note: Thank God it's not Global Developmental Delay)
Speech and Language delay with severe phonological disorder and characteristic speech apraxia/dyspraxia
Delayed fine motor skills with poor bilateral coordination
Autism Spectrum Disorder

Alexander has made some remarkable progress with his social communication skills and has been attending the Rainbow Resource at Great Holland Primary School.

Following the recent Speech and language therapy review, you have somehow been given the impression that Alexander's improvement with his social communication skills and his prominent difficulty with speech phonology could mean that 'dyspraxia' is the unifying diagnosis to explain his difficulties. This is not correct.

In spite of recent improvement, Alexander's social communication skills remain impaired compared to another child of his age. He demonstrates ritualistic behaviours and motor mannerisms (and these were evident in the clinic today). Hence the diagnosis of Autism Spectrum Disorder is entirely appropriate.

'Dyspraxia' does not exist as a medical entity within international diagnostic classification systems, although we all understand what this means. Developmental Coordination Disorder (DCD) is a valid diagnosis for marked impairment in the development of motor coordination that significantly interferes with academic achievement or activities of daily living. However, for a diagnosis of DCD, the child should not meet criteria for Autism Spectrum Disorder and the motor difficulties should be in excess of the child's developmental delay. This is not the case for Alexander.

In my opinion, it is best that we do not all get too focused upon using complex terminology to describe Alexander's difficulties, but rather focus upon what approaches would be most appropriate to meet his range of developmental and education needs.

Observing how he struggled to form the appropriate words in the clinic today, I am very supportive of the Speech and Language Therapist's observation about Alexander having an apraxic/dyspraxic speech difficulty.

Alexander also has significant difficulty with his fine motor, balance and coordination skills. Both of these would require that Alexander receives appropriate support from the therapists and also within the education setting.

I shall review Alexander's progress in my clinic in approximately a year's time. If you have any queries or concerns in the interim period, please do not hesitate to get in touch with me.

The wicked step parents

2008-10-26T07:41:00.001Z

Alex ..... Is one difficult child to talk nicely to .... sometimes.

Seriously, Jeremy and I sometimes feel like we have to shout and be stern with Alex to get our message across.

Everything is a joke to him. He doesn't know when to stop, when to listen. And when he is in such a silly mood outside, it's not always possible to talk nicely to him.

To a stranger listening, we sounded like step parents or we are talking to a dog rather than a child.

It's the only way to get our message across to Alex by simplifying language. Alex has his moments, he is not always like that but when the Autism part of him takes over, that's when we feel ashame of ourselves for talking to him like that.

Sorry Alex, mummy and daddy loves you to bits but we had to.

Report from Rainbow Resource

2008-10-25T23:27:00.003+01:00

This report was written by Mrs Dunham for Meath School visit on Tuesday, 21st October 2008.

Mrs Dunham was kind enough to accompany us to the school and was as impressed as we were. She believe that Alex will thrive at Meath and will do her utmost best to help get Alex into the school.

Meath School is a non-maintained special school run by the I CAN charity. A charity that helps children to communicate. It has consistently received outstanding result from OFSTED on all categories and is ..... quite expensive.

Here's the link to the school for those interested: http://www.ican.org.uk (click school on the left hand menu and then Meath School)

Now back to Mrs Dunham's report

Alex started Rainbow in May 2008. He is currently in his second term at Rainbow. He is diagnosed with Autism Spectrum Disorder in May 2007.

Alex is a very loving and friendly little boy who smiles a lot and tries hard to please. He likes to be close to adults and needs persuasion to play with other children. He is a little nervous of crowds of children and new events and will try to hold adults' hands and stay close to them.

At Rainbow Alex is quite passive and compliant. He will respond to prompts therefore demonstrating understanding of simple instructions. His speech is very unclear but he tries hard to reproduce the sound patterns of language - he will also sing along to the tune of a song but not the words. Alex's attempts at speech are sounds. He often needs reminding to open his mouth to make a sound clearer but understanding is usually by guesswork rather than a clear word. Through practice he has a few clear words such as "Herow" (hello), "ba ba" (bye bye), and "More choos" (more juice). However, production of these words often requires a prompt as he is just as likely to "say" the word with his mouth closed.

Alex uses a visual timetable that gives his time at Rainbow some structure. Without it he can be a bit aimless and follow adults around. He really likes chasing games and rough and tumble play. With planned activities Alex will wait to be helped but responds to lots of encouragement. At Rainbow we don't use PECS with Alex but we do use Picture symbols to support his communication. This is because his speech sounds are unclear and he will use different sounds to say the same word. Alex uses his symbols book to make choices such as choosing colour, a toy to play with or a snack. Alex does try to comment on things and respond verbally and does persist even when he is not understood. When responding Alex has developed what appears to be a stutter where he gets stuck on the first part of a word and repeats it over and over.

Alex is quite clumsy and finds it difficult to climb up a low step without support. His fine motor skills are weak and he needs support to use a pencil to make a firm mark on paper and to use scissors. (Mummy's note: Alex can climb stairs, steps and stools on his own when there is no adult present. He has this habit of asking help even when he doesn't need any. I noticed this when Alex thinks I'm not looking - his teachers fell into cheeky Alex's trap .... ha ha suckers)

The Curriculum Based Developmental Profile (CBDP) shows Alex is mainly working at between a 0 - 2.5 year level (p levels 1-3) in most areas. Physically he is working at a 2.5 - 3.5 year level (p levels 4-5). We found that he understands and can follow most simple instructions. However his huge difficulties with speech production impinge on all areas of the curriculum and it is difficult to gauge what he does and doesn't know.

Alex is very compliant and extremely willing to please. He needs intensive support with his speech and communication. He is currently undergoing a thorough speech and language assessment and the pediatrician has also been asked to carry out an assessment of his fine and gross motor skills.

Report from Speech and Language Therapist

2008-10-25T22:14:00.007+01:00

Since my last meeting with Mrs Dunham and Becca at Rainbow three weeks ago, Becca reassessed Alex and here's the Progress Report dated 17 October 2008 which I would like to share with you. Most people feel that reports should be confidential but I would like to share this because it may help someone .... someday.

BACKGROUND

Alex was given a formal diagnosis of Autism Spectrum Disorder in May 2007 following a Multi Professional Assessment.

Alex started Rainbow Resources in May 2008. Since starting in Rainbow he has received regular group and 1:1 therapy from the Speech and Language Therapist (SALT). In addition he has had his functional communication reviewed regularly by the SALT and communication programmes have been integrated into everyday activities within the resource setting.

Information for this report has been gathered from observations in the Rainbow Resources and the nursery, formal and informal assessment and discussions with Alex's Parents and Education staff.

ATTENTION AND LISTENING:

Alex is able to sit and participate in circle time and listen to stories with minimal prompting from the staff. He is able to sit and wait his turn during group activities. He participates in activities with adult support to keep him engaged and focused. Alex responds to adult direction.

VERBAL COMPREHENSION (UNDERSTANDING):

Alex's comprehension was last formally assessed in January 2008 and was found to be mildly delayed for his age. Further informal assessment and observations have been carried out since this time to assess his functional communication.

Alex has demonstrated understanding of situation requests (i.e. put your snack box in your bag) and routines within the resources environment. His understanding is aided by gesture and signing. Alex is able to follow short instructions directed to him individually and directed to a group.

Alex recognises familiar objects and their uses. He is able to understand verbs and some conceptual vocabulary including colours. He is consistently able to follow 2 information carrying word level commands i.e. "make teddy sleep" and his 3 information carrying word level understanding is emerging. (Mummy's note: Alex is able to understand more than the SALT thinks he can. His speech is limited hence it's difficult to determine how much he understands)

EXPRESSIVE LANGUAGE:

Alex is communicative and gets his message across using a combination of verbal and non verbal communication. He is able to request, choose and comment verbally using single words or two word utterances, however his speech is frequently difficult to understand and his length of verbal utterance and use of grammar is delayed for his age. He supports his speech using a Picture Communication Book, gesture, signing, intonation and pointing.

Alex smiles and laughs to express enjoyment. He is able to request help and to refuse verbally. Alex is able to say "hello" and "goodbye" verbally.

Alex continues to copy adult's utterances with both immediate and delayed echolalia.

Alex's expressive language skills are delayed and disordered when compared to his peers.

PHONOLOGY (SPEECH SOUNDS):

Alex's phonology has been assessed using the Nuffield Dyspraxia Assessment. The assessment has highlighted that Alex has a severe phonological disorder with characteristics of dyspraxia.

Alex has difficulty articulating several consonant sounds and he uses only a limited number of vowel sounds. Alex struggled to accurately and consistently sequence consonant-vowels and his rate was observed to be very slow. When naming pictures with single words he was observed to make several delayed articulation errors including missing off the ends of words (i.e. "bed" was said as "beh") and reduplicating the first syllable of a word twice (i.e. "garden" was said as "gaga"?. In addition he demonstrated several disordered characteristics including the insertion of glottal stops and distortion of vowels when naming pictures with single words.

Alex demonstrated oral motor difficulties including being unable to imitate tongue movements and lip positions on request.

SOCIAL USE OF LANGUAGE:

Alex initiates interactions with adults. He is able to use his language for a variety of reasons including requesting items, commenting on what he sees/hears, ask questions and use social language. Alex is able to use names of familiar adults and himself.

Alex will use eye contact when he is talking to an adult. Alex finds it difficult to initiate interactions with his peers appropriately and requires adult support to do so. Alex's play is frequently repetitive and he generally plays alone or watches his peers. Recently Alex has become anxious when playing in the playground or in nursery and requires a high level of adult reassurance to do so. He seeks out adult interactions over peer interactions.

SUMMARY:

Alex has a formal diagnosis of Autism Spectrum Disorder. Alex's receptive language, expressive language and social interaction are delayed and disordered when compared to his peers. Alex has a severe phonological disorder with characteristics of dyspraxia.

Total frustration

2008-10-25T19:19:00.001+01:00

It's been two weeks since I updated my blog. Two days ago, I sat down and start writing what's been happening to us. Guess what happened?

It took me 2 hours to write and finally, it was ready to publish ..... Pressed "publish now" plop ... Blue screen with an error message. Everything that I have been doing was gone because Blogger.com was under maintenance!

#*$£ .... I was so upset that I had to walk away before I smash the laptop. It's not easy to find time to sit down to write. I should have known .... Next time, write them offline and then cut and paste. There, learn something new the hard and frustrating way. I have now downloaded a new software on my iPhone and can now update my blog wherever.

Just thought I'll try it out before I write another long story and findout it's not working. Work smart this time. Will follow with account of the past two weeks.

The very bossy boy

2008-10-10T11:06:00.003+01:00

Once upon a time .... not too long ago .... just this morning in fact, a little boy name Alex has been really cheeky and bossy.

Jeremy came home from work and was about to have his shower, Alex wanted his first, so .... as usual, the young prince is priority and he had his shower. After shower, he went into his play room and start doing what he does best .... thrashing the room.

While he was "playing" Jeremy came to our room to get ready for shower and one thing led to another, we engaged into a conversation about you know who ... and his cheeky antics.

Alex heard us talking about him in the other room and came into ours and said "Da da go go go bath" and then very sternly said "go go" and hurried his dad to the bathroom.

That is one complete sentence (but with a little stuttering) and he knows what he wanted to say. We were so happy and said "Good talking, Alex" and he was so pleased with himself.

Progress .... with an attitude - LOL

2008-10-09T21:31:00.002+01:00

We received good news today.

Alex could see Dr. Irani sooner than scheduled. His secretary called today to inform us that there is a cancellation and she is able to fit Alex in. Instead of November, we could see him in 2 weeks time.

Mrs Dunham and Becca (ST) will be writing their reports to accompany our visit to Meath School in Surrey on the 21st this month. Looks like everything is in motion quicker this time round. When we get Dr. Irani's report, the Occupational Therapist report will follow and we could submit to the Local Education Authority for a revised Statement for Special Education Need.

We hope things would go smoothly and that Alex could get the help he needed as soon as possible.

2008-10-08T13:01:00.002+01:00

OMG My Niece lock me out of her BLOG.

I have a link here on my blog to my niece Erin's and guess what I found out? I wasn't invited to read her blog :-(((

I can't believe it ........... her favourite Aunt (I hope).

Anyway, I still love you very much and I still will spend all that money to come to your BarMitzvah. The only things is ..... now that I am not invited to read your blog ..... hmmmm what am I going to get you for your birthday????

You've been warned KID!!! LOL

Couldn't be sweeter

2008-10-08T11:11:00.003+01:00

Although it's 1:30 in the morning, I was half asleep and don't mind continue to do so ..... Alex came into our room and walked straight to his dad's side of bed.

This is something new as Alex comes to me all the time. Jeremy was at work all day yesterday and did not see Alex when he got home. The last time the father and son were together was when Jeremy read Alex his bedtime story on Monday night.

Alex and Jeremy are very close and I am very proud of that. I called Jeremy at work yesterday afternoon and put it on speaker phone. Without prompting Alex, he said "Hello Da da" and then "Bye Bye Da da". This is progress as I had to prompt him what to say, usually.

He came home with his daily activity report yesterday with the following comments from his teacher:

Monday: Alex practiced counting using the whiteboard, in PE we had an obstacle course, Alex practiced kicking the ball and throwing the bean bag, Alex put on his own socks and shoes after a 10 minutes stand off (ha ha ha ... that's about right)

Tuesday: Alex practiced numbers on the whiteboard. They played a turn taking game. Alex used his PECS at snack time and his speech became clearer too. They played in the shaving foam and sand.

It's great to hear that his speech is getting clearer. I read somewhere about using PECS helping children with verbal apraxia to speak clearer. It's a visual prompt that somehow convey the message better to the brain.

I read so much and did so much research that I cannot recall where I got these information.

I have been suffering from dull headaches lately and went to the GP last Friday. I wasn't told anything but was given a prescription for pain killers. I wouldn't want to take those if I can help it. I was told that he will refer me to a Neurologist in Heatherwood or Windsor but meanwhile, make an appointment to see an optician to get my eye tested.

I think my headache is due to information overload and perhaps a dash of old age on the side. Do I finally need glasses after dodging it for years? I am the only one in the family who doesn't need glasses or contact lenses. Looks like I am not that lucky after all.

Back to Alex, we had a letter from Meath School in Surrey confirming our visit date and we are bringing one of Alex's teachers with us to see if the school could offer what Alex needs.

Will update when we see the school but we have done our own research and the school received great report from OFSTED and has a very good reputation.

2008-10-04T14:53:00.001+01:00

Out of curiosity, I googled Apraxia misdiagnosed Autism. Here is an interesting article:

What is the Difference Between Apraxia and Autism?

Posted in Health & Fitness on May 5th, 2008

Apraxia and autism are two entirely different neurological disorders which can occur in a child independently of one another, or together in the same child. While autism’s symptoms can impact and impair many different systems, behaviors, and thought patterns, apraxia occurs when the child struggles to plan and carry out voluntary physical movements.

In terms of gross motor skills, apraxia may impact a child’s capabilities to stand up, sit in a chair, or catch a ball and with fine motor skills, a child may not be able to zip up a jacket, button a shirt, write or print, or even point at an object.

Children with apraxia may also struggle to produce sound patterns to make words, or even coordinate the various speech mechanisms to make the individual speech sounds such as the difference between a “g” and a “b” sound, or the hum of an “m” sound. Even when a sound is modeled, a child with apraxia may not be able to mimic the same sound.

However, though these symptoms may also cross over into autism, there remain important differences between the two conditions. For example, when a child has only apraxia it is only the motor functioning and not the social and emotional skills that are impacted, as is often not the case with autism.

Apraxia and autism can become difficult to tell from one another when the child is exhibiting symptoms of verbal apraxia (officially known as oral-motor apraxia). The reason for this is that children with either condition can be very aware of their struggle to communicate verbally, and therefore they may choose to avoid having to talk by staying away from social situations. However, in the case of verbal apraxia, if you play with your child and don’t demand speech from him or her, you may find that they begin playing actively and engage others in their play.

The child usually experiences relief from being able to socialize and have contact with others without being required to talk, which is frustrating for them and can create a fear of failure. Often, with these children, when they are allowed to select the type of play and are allowed to go without having to speak, the relief and comfort they feel can make them more open to accepting the slow introduction of new sounds and syllables, which may eventually bring about simple words into their favorite games and play. Encouragement to vocalize or verbalize should be gentle in both apraxia and autism, and should be gradual, tailored to the pace of success rather than to a schedule.

In both motor apraxia and autism, children show social interaction problems, but in the case of motor apraxia, this is normally because they are not always capable of performing the physical movements that allows them access to others. However, motor apraxia won’t usually make a child want to avoid social interaction altogether, such as failing to make eye contact, or specifically moving away from other people.

It is easy to see why there is so much confusion between apraxia and autism spectrum disorders. Especially considering children with these conditions can also both exhibit signs of over-reactivity to sensations. However, there are differences between the two and it is important to speak to your doctor or a specialist if you are unsure. Your doctor will be able to determine which condition your child may have, or if both are present.

Grab your free copy of Rachel Evans’ brand new Autism Newsletter - Overflowing with easy to implement methods to help you and your family find out about apraxia and autism and for information on levels of autismplease visit The Essential Guide To Autism.

2008-10-01T19:15:00.002+01:00

Sooner rather than later.

Last Tuesday, we received a note from Alex's teacher. She wanted to see us and asked for a convenient time. I was really worried and asked Jeremy to ring Mrs Dunham to find out what it's all about because the end of term review was scheduled for end of this month.

Mrs Dunham said that it's nothing to worried about and that she wanted to find out from us if we have any objection that they keep Alex a little longer in Rainbow. The teachers and speech therapist feels that he is not ready to join the bigger class in January due to his lack of speech.

The meeting was yesterday. I went to see Mrs Dunham and Becca (ST) alone as Jeremy had to work. The meeting was not as what I expected as it got a bit heavy towards the end. I came out feeling rather stressed and confused as I haven't had enough sleep for two days. (The sudden change of temperature caused some discomfort to Alex, sniffing all night long. Hence no sleep for Alex and mummy.)

I brought to Becca's attention last term that I suspect Alex has Apraxia of Speech. At the time, she felt that it was too early to diagnose Alex for Apraxia.

In our meeting yesterday, we discussed that Alex is way behind his peers in expressive speech and fine motor movement i.e. writing, drawing, cutting, pasting etc.

They suspect that he may be Dyspraxia and Becca asked if I have any objection if Alex were to be re-assess for Apraxia.

I can't really remember how the whole conversation came to a hint that suggested Alex may not be Autistic as he is far too social for an ASD child. Of course the teachers cannot say for sure as they are not trained to diagnose any disorder. However, they have seen and taught many children within the spectrum and could see Alex being the odd one out.

Becca feels that Alex wanted to talk and communicate unlike a typical Autistic child. She noticed that when Alex wanted to say a word or repeat a sound, they seem to jumble up and turned out a different sound - a typical example of Apraxia.

If Alex is diagnosed with Apraxia, he will need more Speech and Language Therapy. The teachers suggested a school which they feel is more appropriate for Alex as Rainbow cannot offer the type of help he required. Although we have concerns for sometime that Alex may not improve in time for mainstream school, my heart sank.

The school that they suggested is an independent school in Surrey that specialise in communication and speech. Our Local Education Authority will have to pay for the fees which means we have to review his Statement for Special Education sooner than expected. It would be more appointments, more assessments and perhaps we have to fight with the LEA for our rights to send Alex to a fee paying Independent school. I heard from other parents that it would be a hard and long road. Just when we thought Rainbow was the answer .....

I guess telling us now is better than having to complete 6 terms in Rainbow and still no improvement.

I am grateful to the teachers for making an effort to find the right help for Alex, it shows that they care.

It looks like for the next few weeks or months, I will be very busy visiting different schools and taking Alex to assessments.

No time to wait and see. It's now or ......

2008-09-28T10:46:00.003+01:00

What's the worst thing that can happen if you are contented with life?

As I was flipping through a Business Franchise magazine this morning, I realised that ..... even if you have money to invest, your Franchisor may not want you. They look for people who have a strong desire to succeed and to make more money for themselves and eventually the Franchisor.

All of a sudden, I realised that I no longer have the desire to make loads of money or to make enemies. I am way too contented with my life and having a roof over my head, food on the table and a healthy close-knit family is all I wanted in life. I have been searching almost all my adult life for that missing puzzle, what do I want in life? I've finally found it.

The worst that could happen is no Franchisor or company looking for employee with a desire to succeed would want me.

2008-09-25T11:45:00.002+01:00

Cheeky little devil.

If there's nothing interesting on television to watch, there is always Alex Green and his cheeky antics.

Two days ago, Jeremy gave Alex a bowl of grapes for snack. He finished his share and continued to watch his "Bob the Builder". I felt peckish and decided to get myself some grapes as well. I walked past Alex with my grapes and he followed me to the dining room. He look at me with the cheekiest smile I have ever seen. He look at the grapes and then took one and looked at me.

Well, being a good mum as I am (ahem), I nodded indicating that he can have one. He sat on my lap, and as I was doing my work on the laptop, he took another and another until there was two left. I was about to reach for the grapes and realised that the bowl now contained two grapes and before I could say "Alex", he took both grapes, one on each hand. He put one in his mouth and gave a wicked laugh while holding the other one. I said "Can mummy have that please" he quickly put it in his mouth and laugh again. My God .... I have a very cheeky devil here and I just could not help but laugh. I guess I should teach him some manners here and laughing doesn't help but encourage him further.

Logically, I should not encourage him by laughing but he is rather funny. He is a child and all children should have fun. It's not an offensive behaviour and I guess I could leave it till he is a bit older. But then again, if an older child did the same thing, it would have been deemed rude and an unacceptable behaviour. I guess I have to start teaching him what is acceptable and what is not .... before it's too late.

So, why do society have different rules for different people?

2008-09-22T08:50:00.003+01:00

I have my lovely son back!

Thanks to everyone who wrote to me after my last blog to encourage me to persevere.

I had such a pleasant day with my boy yesterday, despite his dad being at work all day. Just mummy and son spending the first half of the day at home and then later at his grandparents' home.

The morning started wonderfully with Alex waking at 5am and said "bye bye" to daddy before he left for work. Alex came to my bed and stayed with me until 7am (I actually had a 2 hours 'laid in') ..... unheard of!

Had breakfast, he played with his train set, I ... on my laptop and then watch a bit of recorded Greys Anatomy. Sat down and played 'Number' flash card and learn to write the number '1'. Alex knows his numbers 1 - 9 but his concentration level is slightly better than the memory of a goldfish. After 2 minutes of counting, he started to go 'silly' by purposely giving me the wrong answer and laugh. Had to wrap up as when he is in such a 'silly' mood, it's no point carrying on.

We had lunch at home, then we left for his grandparents' place in Langley. Spent about three hours there, I decided to reward my son for being so good all day. We went to McDonalds for dinner (actually, mummy's being lazy and rewarding sound far much better).

On our way to McD, we passed the hospital that Jeremy was born in. Alex said "Ma ma .... dada born". I was surprised at what he said. We told him every time we pass the hospital that his daddy was born here. This is the first time he said it to me and use the word 'born'. Although it isn't very clear but I know what he was saying.

We had our "dinner" and got home around 5:45pm ...... way past his shower time (normally at 5pm). Alex was itching to have his shower. I said "wait, mummy need a rest first OK?". He ran upstairs and started to make noises in the bathroom .... oh oh .... I know that noise .... he's up to no good.

If there is one thing to get mummy and daddy to move their butt? Make noise, lots of them and see the running.

He was in the bath tub and smiled at me. He wanted a bath instead of a shower and asked for my private bubble bath stash. As usual, mummy give in and watch her son smiling and kicking water. Alex had such a great time in the bath and asked to go to bed at 6:30pm.

Well, I am so well rest now .... Alex woke up at 6am and let me lay in till 7:00am.

2008-09-19T05:40:00.002+01:00

What Big Picture?

When you have been sleeping well for a certain period of time, being waken at wee hour of the morning for a whole 5 days and maybe counting ... you can't really blame me for contemplating to give up.

Now ... what am I talking about? Oh yes ..... Alex .... I AM NOT giving up on Alex but the supplement that supposedly able to help him develop his speech and improving his EQ (Emotional Intelligence Quotient).

According to Sue, my sister .... this supplement had helped children/adult with various disorders such as Autism, Down Syndrome, ADHD (Attention Deficit Hyperactivity Disorder), Apraxia and many other condition related to the brain and nervous system.

Marcus, my nephew who was diagnosed with Apraxia has been taking this supplement for the past three years. Everyone has seen great improvement in him especially on the behavioral aspect. Trixie, my sister, his mum is now promoting this supplement to many of her friends.

According to Sue, a few of her clients who have Down Syndrome and Autism benefited greatly from this supplement. The Autistic child who can't talk and very withdrawn can now talk fluently, the child with Down's can now hold a pen and write properly.

Now ... that's the big picture but the down side of this is ...... there will be a period of adjustment. I do not know for how long but Alex will go through a period of difficult times.

I started giving Alex 2 IQ/EQ tablets and 2 Haliborange Omega 3 capsules on Sunday, 14th September at 8:30am. He woke up at 6am his usual time. He was very cheeky and loving that day. Now that's a good thing. Went to bed at 6:30pm (about usual time).

Monday, 15th - woke up at 3:15am .... singing his lungs off, went to the toilet and used the watering can to wash my toilet bowl. I had to wake up and clean after him (which means, I was up and about from 3:30am) He ran away laughing and thinks it's funny. Very emotional all day .... a "No" would be the end of the world. Tears, tantrum, hyperactivity and a complete nightmare child compared to my usual loving, wonderful little Alex. I gave him the supplements at 8am. He went to bed at 7:30pm.

Tuesday, 16th - woke up at 4:30am ..... again singing his lungs off and went to his playroom and played for a bit. "Stimming" more than usual and stomping his feet on the floor. Very emotional again. Can't remember what he did but Jeremy gave him a light pat on the backside to tell him off, the world came to an end for Alex. He ran to me and threw himself at me. In the past, he would show no emotion when he was being told off or having a light slap on the backside. My God, what did I do to my child? I had to persevere! Went to bed at 7pm.

Wednesday, 17th - Woke up at 5am .... singing as usual and talking to himself in his usual funny language and making train sounds. Emotional, hyperactive, "stimming" and went to bed at 6:30pm.

Thursday, 18th - Woke up at 3am .... usual singing and talking. Played in the Garden all morning while his dad is weeding. Very cheeky and mischievous like a little imp. Went to school, came back, asked for a bath, kicked water in the tub and wet the whole bathroom, went to my bed and played for 30 minutes and fell asleep on my bed at 6pm. A better child but I am hoping that he will revert back to his normal sleeping pattern ... 6pm to 5am.

Friday, 19th (Today) - He woke me at 3:15am, singing out loud, came to me at 4am, asked to go to the toilet and then hijacked my bed. While he is still sleeping soundly on my bed, I am sitting here updating my blog.

It's as hard for him as it's for me. I don't know what it's doing to his brain but I am hoping this adjustment period will end NOW and I can have my lovely child back plus saying a few more words.

I will keep giving him the supplements and keep updating my blog on his progress and if this works for Alex, it may be an answer for many other Autistic individuals and their families.

No Venture No Gain ..... *sigh* .... I need my zzzzzzzzzzzzzzzzzzzzzzzzzzzzz

2008-09-14T10:51:00.002+01:00

Firemen ....... something about men in uniform.

Alex and I had a fun day out (more like mummy had a fun day) yesterday. We went to Slough Fire Station to have our car washed. My friend, Gaynor's husband Steve works there and they have organised a Charity Car Wash with the proceeds to National Autistic Society.

"I drove 20 miles to have my car washed" I told Gaynor "and this better be good." She laughed and show me where to go. There were quite a few cars there going through a manual car wash system (he he he). When you drive thru ... the first thing is a FIREMAN with a small hose washing the car down and then drive to the next part ... more FIREMEN ... at least 6 of them shampooing the car and rub down the tyres. Next, another FIREMAN with a BIG HOSE washing off the soap and suds. Finally, get the car dried up by another FIREMAN.

I am feeling hot just writing this (he he he) and it was quite an experience. Well, of course writing this is all a joke as no one is as good looking as my dearly beloved (gagging ... I know ... just in case he is reading this).

After the car wash, I asked Gaynor if Alex could have a ride on the fire engine and she shouted for Steve to take us for a tour. Alex went onto the truck and Steve let him wear his helmet. It was all fun but Alex was a bit scared of the height and kept calling for me. We left the fire station and went to see Grandpa and Grandma, 5 miles away in Langley.

Alex hummed Fireman Sam tune all morning since I told him that we were going to a fire station. When we drove past our local fire station, he asked "Ma ma?". I had to tell him that we are going to another one and he then sat quietly and enjoyed the journey.

Alex has a very good understanding of everything and is very observant. Nothing passes him without him acknowledging them. Jeremy and his father, Peter are worried that Alex may not talk as they can't see how. His grandmother and me on the other hand, are not worried and know that he will eventually talk. Men have no patience.

I still haven't heard from Rainbow if Alex is moving to the morning class. If he does, he will be with Holly, Joseph and Callum (all his friends).

2008-09-11T11:01:00.002+01:00

Things are once again back to normal.

Alex is settling in well at Rainbow. He comes back with a report from school everyday informing us of his activities for the day. He has been very vocal and learning to write numbers and letters. This week's number and letter are '1' and 'S'.

My friends' children Lia and Tomas joined Rainbow on Monday. I haven't had a chance to speak to them yet but I think Rainbow will help them as much as it helped us.

Now that Alex is settling in well, I am itching to do something with my free time. Last week, I went to a Franchise Show in Reading and found one really interesting business. The set up cost is low but there is a monthly fee to pay irregardless if you make money or not.

I know I can make it if I am prepared to put time and effort into the business, but something has to give and I am not prepared to sacrifice the time with my family. My priorities have changed and I know my sisters will say that I am mad. Why on earth would I not want to make more money when I have the opportunity?

I have done the putting all my time in making money and I have also made some money during those days. Having money and no time for your love ones? Is it really worth it?

Things happen for a reason and there will always be something else that may eventually be right for us. I know what my priorities are and just have find something that will work around them.

2008-09-05T16:29:00.002+01:00

School's finally back .... YIPPEE!!!

Haven't been able to update my blog because of the school holidays. It's a total shock for me, Jeremy and Alex .... six weeks is way too long. All routines down the drain and my housework piled up to my neck.

Yesterday was the first day of school and the three hours that we have without Alex was mainly spent on ironing and clearing the garage. We could not get anything done with Alex around as he demand for our attention - constantly. I do not like the idea of putting him in front of the TV all day but sometimes, things need doing and it's not that easy.

Anyway, back to normal and I hope to be able to update my blog regularly.

The teachers told me that they may want to change Alex to the morning session and that is a very good idea. I could structure his day better with this new arrangement if they decide to go ahead. I miss taking Alex to Legoland and if he is back to the morning session, I could take him to Legoland after school.

Alex has been saying a lot of "Air Con Duct" lately. A new word for him which he use quite often.

The stairs and escalators has been a problem for Alex lately. It all started two weeks ago, when he first refused to go on the escalator at IKEA. Then when he got home, he refused to go up the stairs. He cried - massive tantrum and insist that we carry him. It's putting a lot of strain on our back and we cannot keep carrying him when he want us to.

It's not always a problem for him ... yesterday, he went up and down the stairs no problem but then this morning, his phobia came back. I don't know if he is trying it on us or he is really scared of the stairs but we have to ride this through.

Kids .... it's one thing after another.

2008-08-25T11:27:00.002+01:00

Is he clever or all four year-old do it?

We do not have any other four year-old to compare to but as parents, we always think our children are better than others.

As usual, Alex the Gannet has been searching around for snack. I gave him a pack of chocolate biscuit in the box. Normally, I would pour the contents into a bowl. This time I decided to let him try eating from the box. The opening was a bit small and I know he would struggle. I just let things be.

A moment later, I heard him running to the kitchen and searching for something. I went to the kitchen and saw .........

Alex trying to pour the content into a bowl ...... what a clever boy!

So, is he clever or just like any four year-old? Either way, I am ecstatic!

2008-08-24T11:43:00.002+01:00

Eeyore at home.

We have a donkey at home and his name is Alex. Every time we say "No" or "Wait", Alex will make this sound "Hee Haw ... Hee Haw". We can't help but laugh.

School holidays is driving us mad especially me. Feel really bad when I put him in front of the television. We go out as much as we could but I am running out of places to take him. Everything cost money and it's hard to justify spending any.

Food prices are getting higher despite the supermarkets "lowering" their prices. Things that we normally buy don't go down as we eat lots of fresh cooked food. I could see reductions in ready meals, canned food or supermarket own brand items but they are not the things that we eat or buy.

Two weeks to Autumn term and will be celebrating when Alex goes back to school.

2008-08-17T20:53:00.000+01:00

2008-08-16T09:27:00.003+01:00

Be prepared.

I have been doing a lot of thinking about Alex's future. How my son can learn to be independent, self sufficient and be a responsible person. I found the answer ... or least for now.

I want him to join the Scouts when he is old enough but wasn't sure if the scouts would accept children with ASD. Deep down, I know Alex will learn life skills, make friends and many more if they do accept him. I decided to find out more.

I googled for "Scouts for Autistic" and surprised to find an article by the Scouting magazine from America and other Scouts organisation websites. I read the article and yes, my instinct hasn't failed me.

This article confirmed everything I believe, http://www.scoutingmagazine.org/issues/0609/a-boys.html and I decided to write an email to the Scouts in my area to find out if they will accept Alex when he turns six.

30 minutes later, I had an email from the Scouts and it read:

Hi Christine,

I need to know a bit more before I can assist you.

I need to know what area you are from as there are many Scout Groups around, some do take special needs children and others don't, this can be for a very wide variety of reasons ( see below for an idea ) that would need to be considered / taken into account when your son is old enough to join at six years old.

To give you an idea of reasons mentioned above.
Size of Beaver Colony ( how many members ).
Number of leaders / adults.
How many other special needs children already in the Colony.
Leaders views and expertise in working with special needs children.
Past experience with special needs children.
Your sons specific special needs.

The list would probably go on but don't let this put you off.

Could you please let me know the following and I can work from there

Sons name
Date of birth
Address inc postcode
School ( intended )

Hope this helps.

I replied with all the details required plus a little bit more about Alex being high functioning.

When I checked my email this morning, a reply in my Inbox almost brought tears to my eyes, tears of joy and appreciation.

Yes! Alex will be accepted if we decide to go ahead. I spoke to Jeremy when he came back this morning and I replied with our decision.

As it's not well publicised that the Scouts accepts children with special needs, many parents are not aware of this. It would be good for children with Special Needs to participate in mainstream activities and have a balance in their life.

Parents are often afraid that their children will be excluded in mainstream activities, hence they put their children in special camps for special needs. I am not saying it's a bad thing but children have to learn to adapt in real society and learning young would be an advantage.

We are not always there to hold their hands. Sometimes they fall, they have to learn to stand up and keep going.

2008-08-14T09:00:00.002+01:00

The Messenger in making.

Alex is not always a "pain in the butt". He is one extremely helpful boy and a clever one too.

I took him to Sainsburys yesterday for weekly shopping and he was very good all the way till the end until he saw the checkout. I had to turn into one last aisle by the checkout for air fresheners and this boy is like "a dog with a bone", he just won't stop .... going on and on about getting into the car.

Anyway, we got home. I unloaded the shopping bags from the car and left them in the hallway when Alex decided to help me take them to the kitchen. He dragged them (very heavy) along the hall and into the kitchen. He gave me the sweetest smile when I said thank you.

He helped me unpacked and then put them away into places he can reach. Not much later, I heard him in the bathroom upstairs and I went to check what the commotion's about.

My boy looked at me and smiled, he said "Ma ma" and pointed at the counter. He put his Dad's shaving gel he found in the shopping bags next to the old one.

What a smart boy!

This morning, while Jeremy's in the toilet doing .... his No.2. He shouted "I can't find a pencil .... I want to do my Sudoku". I was still in bed and called for Alex. "Take this to Daddy" giving him a pencil. He took the pencil to his Dad in the toilet.

Yeah ... looks like I have a little slave now - he he he

2008-08-13T10:53:00.002+01:00

A Gannet at home.

Alex has been eating non-stop and I wonder what next.

The weather is not getting any better and I ran out of outdoor places to take him. I don't really want to take him to indoor playgrounds because of his fear of noise, echo and my fear of him getting something from other kids.

He is very much home bound these few days and he eats because he is bored. He still watch Bob the Builder and he still comes to me (what seemed like every 5 minutes) for snacks. It's one thing after the other and I am getting weaker by the minute.

He still goes to bed at six-ish and wakes at 5:00 in the morning. And this time, he wants me to be awake too. I am totally lacked of sleep. I have no will to live ..... ha ha ha

I just hope school starts tomorrow!

2008-08-10T11:07:00.002+01:00

Friends of EarlyBird

I set up a group for families who have attended the NAS EarlyBird Programme about two months ago. We meet on Fridays every two weeks.

Last Friday, we had a great turn out, a new family joined us for the first time. Cara* and her husband Brian* and their three sons, all autistic. (as I am not familiar with them, I have changed their names to protect their privacy).

You would think that having one autistic child is bad enough but with three? I totally admire them as a couple and a family unit. Their first born who share my son's name is on the other end of the spectrum. I would not say that he is severely autistic but then again, observing him for about 45 minutes, I could gather that he is hard work.

Alex is a 5 1/2 years old, non-verbal child that can only sign "more" for everything. He has a tendency to run away without notice and his parents had to be very very aware of his whereabouts. He has no eye contact and when I tried to talk to him, he shrugged away and back to his own world.

Their second son, was recently diagnosed with ASD and he is on the mild end of the spectrum. Both Cara and Brian thought that their second born was neuro typical until six months ago, he was assessed and diagnosed. I didn't manage to get much information from Cara as she was busy going after Alex and I doubt she had anytime to herself.

Their youngest is 24 months and they suspect that he is on the spectrum too. He is very very much hard work and the temper tantrum is .... well, I must say that, his parents are Saints.

Looking at Cara and Brian work as a unit makes one admire their courage and patience.

I told Jeremy about them when I got home and I could feel the tears rolling down my cheek. We are so lucky that our Alex is so loving and cheeky .... always receiving hugs and making us laugh. I cannot bear to think what it feels like to have three children, in their own world and not even a hug when you are at the lowest.

Cara and Brian is a true example of what a family or a couple should be. They work together despite all the bad things thrown at them. They still manage a smile and a laugh in the very short time we were together. I hope I will see them again.

2008-08-07T08:40:00.003+01:00

He is getting increasingly frustrated.

Alex was trying very hard to speak this morning. He wanted to say bye bye da da car. What came out was "Bye bye dada ...." and repeat the whole thing again for several time. I could tell that he wanted to say bye bye da da car but when he try to make a sentence, he stuttered. Towards the end, he was in tears out of frustration and still no complete sentence.

Watching him getting frustrated made me sad but I know that this is progress. It shows that he wanted to talk and that he wanted it to be perfect.

Both Jeremy and I asked him to calm down and speak slowly by breaking down the sentence into three parts. To Alex, breaking it into three part is not a sentence and he continued to try and still couldn't get it right.

He is also getting very teary lately .... especially when we say "no" to him. His expression changes from a smile to a frown and tears in split second. It would be easier to give in to his every demand but I know better. If I allow this, he will know that he can use tears to get what he wanted and our lives would not be worth living (sigh).

Is there a funny side to this?

2008-08-06T18:37:00.002+01:00

We are back!

You may have guessed that I've been away. We took Alex to Warwick Castle and Drayton Manor over a four-day weekend. All I can say is ..... you could never ask for a better child than Alex. He was so good and considering that he is a child with ASD, he certainly cope well with changes.

We stayed in three different places, two hotels and a night at our friends home in Newport. Ate in very noisy restaurants, lots of walking and driving.

Everything went wrong from the beginning of our holiday starting with Jeremy making a mistake with his hospital appointment. When we planned the holiday, he said that his appointment was at 9am. So, we decided to leave for Warwick Castle right after his visit to the hospital. The night before, he said he made a mistake and it was 11:30am.

On Friday morning, at 10:45am, he said "Oh God ... my appointment is at 11am." We had to rush out the door and luckily, we made it in time for his appointment. Then, we realised we forgot to take Alex's letter from his doctor to get an exit pass at Drayton Manor. By the time we got everything sorted, it was already 1pm. I felt like killing someone as it was so stressful.

We realised that all our holidays starts with stress and then we needed another holiday to get over the first one. Thankfully, we all enjoyed this one.

We got home on Monday night and Alex went straight to bed after his shower, both Jeremy and I hit the bed straight after.

Tuesday morning, laundry ..... what joy! Wouldn't it be nice that we don't have to do all these after a holiday?

In the evening, I went to my friend Gaynor's Charity Curry Night in aid of National Autistic Society at another friend's restaurant. I helped her arrange this with the restaurant and she did the rest. Jeremy did not come with me as he had to babysit Alex.

Alex said "Goodnight" to me before I left and when I got home, he was fast asleep and looked like a cherub. I walked in at midnight and Jeremy was waiting for me, reading in bed.

Jeremy asked how my night was and I told him that I enjoyed it very much. We raised quite a bit of money and he said that he was very proud of me for helping Gaynor.

It was nothing, really. I was just helping a friend who is doing this for good cause. Gaynor gave up smoking at the beginning of the year and then train everyday to prepare for a 10 days trek across the Sahara.

So, in comparison, organising a curry night is just ......

Anyway, Alex came to me first thing in the morning. Gave me a big hug and kiss as if he hasn't seen me in years.

I like that feeling and may consider doing it more often.

2008-08-06T18:31:00.000+01:00

Warwick Castle - Day 1 (what's left of it)

Alex ... posing (I wished) it was just pure luck I captured this

Beautiful castle and we loved it. It would be even better if we packed a hamper for a picnic.

The main attraction for the castle this season. A trebuchet.

You can see what I meant by pure luck if we need a proper photo of Alex. As soon as he sees the camera, he'll say "Cheese" and looked away or run away. I long for the days where he smiled to the camera with his loveliest smile.

2008-08-06T18:30:00.000+01:00

Day 2 & 3 (Newport)

Stayed at Tammy and Simon's home for a night and then went to the Canal (about 15 minutes) for a walk. Left at about 1pm for Tamworth.

We had a great time with Tammy and Simon. Drank wine and chat while Alex slept upstairs.

2008-08-06T18:00:00.000+01:00

Day 4 (Thomas Land, Drayton Manor)

Although Alex had an exit pass, we used it only on one or two rides and queued for the rest. When the staff saw us queue, they came to us to let us know that we can just show up at the exit and I told them that we are aware of that but we want Alex to learn to queue.

It was a good day out and Alex loved it.

2008-07-30T10:51:00.002+01:00

Pay it forward.

I've recently found this useful website www.Freecycle.org . The Freecycle Network™ is made up of 4,557 groups with 5,525,000 members across the globe. It's a grassroots and entirely nonprofit movement of people who are giving (& getting) stuff for free in their own towns. It's all about reuse and keeping good stuff out of landfills.

Yesterday, a lady came to collect a few of the stuff I advertised for her daughter who's moving into an empty flat. I had quite a few people writing to me after that ... to ask if the items were taken. With the recent credit crunch, many people are looking into getting secondhand stuff to tie them over. I totally support reuse and recycle as the things that we have in our garage and loft can actually help many people.

Five years ago when I moved in with Jeremy, we had surplus as two household combined into one. The things are still quite new and we just couldn't part with them or we are waiting for that one fine day when we can organise a car boot sale to earn some extra cash.

Days turned to weeks and then years, the things are still there untouched. I told Jeremy about this site and tested out with the first lot by giving away Alex's high chair. He was quite reluctant at the beginning as the chair is worth quite a bit if car booted.

I was quite frustrated as I know we will never get to do a car boot and told him what I think. I think we should help people with our surplus. If we need them, they would not be in the garage or loft untouched for five years. These things are worth more to people who need them than to us as you can get pittance for your things in a car boot sale. It's demoralising ... when you pay so much for your things and sold at an obscenely low price.

The look on the lady's face tells us that she is really grateful. She said "I will return you a favour one day". I told her "Pay it forward". She smiled and left.

Jeremy overheard from the front room and came to give me a hug. He said he love me because I have a good heart. He decided to let me decide what I want to do with the things we have.

I told him, "If we can help one person a day, it makes our life worthwhile". We received so much from people helping Alex and I am so grateful. The only way I could repay that is to do good and help others.

If we live our lives only to take care of ourselves (quite rightly so). What do we leave behind when we die? I don't want fame but I know life is bigger than just me and my family.

If everyone can help one person each day, the world would be a better place.

2008-07-28T09:11:00.002+01:00

Summer Holiday ..... is it hurray or bother?

Live's upside down when it comes to school holidays .... especially the long ones.

Is it me (us) or all parents are the same? We feel that we MUST do something or go somewhere with the children when they are perfectly happy staying at home playing with their toys?

I feel I must do something with Alex when he is not going to school to stimulate his mind. I don't want him to sit at home all day watching "Bob the Builder" (his new favourite or some may call it obsession).

I've done so much with him that I can't even remember what I did with him (if that make sense).

Anyway, trying hard here to remember what we did since my last blog. Here goes .....

Wednesday .... first day of school holiday - can't remember

Thursday .... second day of school holiday - have no clue

Friday ... this I remember. Went to our Friends of EarlyBird Get-together. I set this group up two months ago and this week has the best turn up so far.

Most of our children goes to Rainbow and Alex had a great time playing with them. Watching the children play together makes one question if the Triad of Impairment is actually correct. They certainly do not lack of social imagination as they were playing monsters and boats.

Alex is one cheeky devil and liked to annoy the girls and make them scream. Holly said, Alex is a monster and so is Joseph. It made me laugh so hard.

The girls were in a tent and then Alex joined them. The girls were quite bossy especially Holly, she said "Alex take off your shoes if you want to come in". Alex being a very obedient boy do as he was told. Lily then said "Thank you for taking your shoes off, Alex". I was watching at the side while the other parents were chatting away. They were playing so politely and then, 30 minutes later, Joseph arrived and the whole politely situation is history as the number of boys equals the number of girls and all hell break loose. The boys especially Alex push the tent while the girls are still inside and made them scream. Alex then ran away laughing and then it was Joseph's turn pushing the tent. It was hilarious watching them.

Joseph is a cute little red head and he was like Alex when he joined Rainbow ... no speech. Six months later, he spoke well. I do hope Alex is like that in 6 months time.

The children played well together with no tantrums. It was a pleasant afternoon and we look forward to our next get-together in two weeks time.

After that, Alex came to Sainsburys with me and he was one helpful boy. All in all, I am very proud of my boy.

Saturday, went to Grandparent's home for lunch. After lunch, Grandad took the ornamental garden sprinkler out and spontaneously, we allow Alex to play in the garden with the sprinkler. It was really hot - about 28 degree Celsius. Took all his clothes off except his underpants. He was playing happily and the look on his face makes me want to get one for him at home.

Sunday. Jeremy went to work and we are all alone at home. I decided to take Alex to Toys'r'us to get a garden sprinkler. He led my hand and took me all over Toys'r'us aimlessly and then finally to the checkout. We didn't find one as the only one they had was twenty pounds - too much to pay for a sprinkler. Thought we might get one in Argos .... nope, they don't have one either. One final place, Homebase and found one for a tenner. Got home and hook it up ..... not working! Looks like .... we have to keep looking.

Well, that's our week, some memorable and some complete blank. It's old age I tell ya ....

2008-07-22T10:02:00.000+01:00

The product of Alex's first attempt using my camera.

2008-07-22T09:53:00.003+01:00

Breakfast with Alex.

Spur of the moment decision to take this video while Alex is having his breakfast. He started feeding himself for sometime now but haven't had the chance to video him in action.

2008-07-22T09:46:00.004+01:00

What do you do with a situation like this?

Do you celebrate with joy that he is finally showing an interest in drawing or you scream at him for drawing on your lovely wall?

I calmly took the pencil away from Alex and told him that the wall is not for drawing and showed him that he should draw in a piece of paper. I asked him if he understood. He said "OK".

I take that as a yes and he will not do it again.

2008-07-21T19:59:00.002+01:00

Found this video by accident about Apraxia of Speech or Childhood Verbal Apraxia.

A very interesting video to watch and perhaps answer some of my doubt about Alex being diagnosed with ASD.

Don't get me wrong. I am not in denial that my son is Autistic but perhaps there is a small chance that he might be misdiagnosed. Whether he is misdiagnosed or not, we benefited from the knowledge and understanding of autism.

We had the End of Term Party at Rainbow today. Meeting teachers and other parents of children going to Rainbow. I brought the subject of Apraxia of Speech to Becca, the Speech and Language Therapist. She told me that it's too early to diagnosed Alex as he just started to talk. The teachers are really impressed with his progress.

As usual, Alex stole the attention of everyone in the room. He belted out "Happy Birthday" out of nowhere and then clapped after he finished the song. Everyone joined in clapping and then he started to sing again.

Just so proud of him. He is one happy boy and everyone seem to fall in love with him.

2008-07-21T14:00:00.002+01:00

A video from yesterday's picnic.

2008-07-20T09:11:00.002+01:00

Serious business ... watching TV - DO NOT DISTURB!

I don't care if you are taking my photo .... beat it!

Finally, a laughter from the ever serious little bod.

2008-07-20T08:29:00.002+01:00

48 hours

Progress, regress and then progress again. All within 48 hours.

Alex has been really good on Friday. He went to the toilet on his own first thing in the morning. He did not make a fuss or ask for help like he usually do. I was awake by then and knew what he was doing and stayed in bed to listen. He then went to his playroom and started his morning.

I tiptoed to the toilet and check if he was doing it right. Toilet seat's up, pee in the toilet with no spillage. I checked the floor and it was dry - WOW! I couldn't believe my eyes. I then went to the playroom to see if he had his pants on, and yes he had it on. Again, WOW!

Me being me, cannot hold my joy went to his playroom and gave him a big hug and lots of praise. BIG MISTAKE .... I was not allowed to get back to bed. He insist that I stayed with him ..... 5:30am.

His grandparents came later in the morning and while we were having our chat and tea, Alex went to the toilet again .... on his own and did not ask for help. As he closed the door behind him, I ran to the toilet to listen from outside and being very quiet, I peeked inside and saw ..... Alex standing, holding his crown jewel and pee. He then shake it a bit and pull his pants up.

I was gobsmacked! All this while, I thought Alex couldn't do any of these and he always insist that I do it for him - pull his pants up.

OK, he got a standing ovation from his grandparents who probably thinks his poo smelt like roses .... (actually I do too). He was so happy and was very good all day.

All the excitement and then went to school, he came home pretty tired and went to bed earlier than usual. That means, I don't have time to do my usual ritual with him like getting him to pee an hour before bedtime and then at bedtime.

Saturday morning, he woke up at 4:30am and went straight to the toilet. He had the toilet seat up and then went to the playroom without doing anything. I was listening and was a bit surprise that nothing happened. I woke up and went to see him. He sat on the floor, semi naked, pants next to him, wet all the way. He looked at me as if in embarrassment and then gave a big hug.

I am not a bit surprise as he went to bed early. I went to check on his bed and it was soaked all over. Hooray! I have another load of laundry to wash .... what a joy!

Not a good start to the day and the rest of the day was the same ..... awful.

Alex was very demanding of my attention, he wanted me to take him to the toilet and when I said "you do it", he went to the toilet and peed on the floor and the floor mat. I was at my wits end when I saw what he did and gave him a slap on the bottom. He yelped and then gave me a big hug as if he was sorry. Alex doesn't like angry faces and he will do anything to put a smile on an angry face. As usual, he succeeded.

Another load of washing, floor mats. What a %&#$@ day.

I was really tired by 1pm and took Alex for a nap with me. He woke me at 3pm and then said "Mama ... blue sky" and then he went to pull up the blind. We stayed in bed together looking out the big window. Blue sky and clouds floating by and Alex was singing. We had a good 30 minutes of quality time, enjoying the beautiful sky.

He didn't go to bed until 10pm last night.

Woke up this morning at 5:30am - his usual time. Went to the toilet and do his stuff ... on his own and no spillage.

I guess his regression is due to a bad start in the morning. It's like waking up on the wrong side of bed for the adults. He has been dry at night for sometime now and an accident at night is quite traumatic for a four year old (I guess).

2008-07-16T19:02:00.002+01:00

I want bath!

Alex is getting more and more verbal each day and this morning, he surprised us with "I want bath".

Jeremy and I were both in bed when he said that. We both heard exactly the same thing and it was very clear. We then asked him to repeat and all he could say after that was gibberish.

I suspect Alex has Apraxia of Speech. I did a search on Google and found the following which support my suspicion. However, I cannot be certain until Alex start to talk for a period of time and has seen a Speech and Language Pathologist.

What is Apraxia of Speech

Apraxia of speech, also known as verbal apraxia or dyspraxia, is a speech disorder in which a person has trouble saying what he or she wants to say correctly and consistently. It is not due to weakness or paralysis of the speech muscles (the muscles of the face, tongue, and lips). The severity of apraxia of speech can range from mild to severe.

Developmental apraxia of speech (DAS) occurs in children and is present from birth. It appears to affect more boys than girls. This speech disorder goes by several other names, including developmental verbal apraxia, developmental verbal dyspraxia, articulatory apraxia, and childhood apraxia of speech. DAS is different from what is known as a developmental delay of speech, in which a child follows the "typical" path of speech development but does so more slowly than normal.

The cause or causes of DAS are not yet known. Some scientists believe that DAS is a disorder related to a child's overall language development. Others believe it is a neurological disorder that affects the brain's ability to send the proper signals to move the muscles involved in speech. However, brain imaging and other studies have not found evidence of specific brain lesions or differences in brain structure in children with DAS. Children with DAS often have family members who have a history of communication disorders or learning disabilities. This observation and recent research findings suggest that genetic factors may play a role in the disorder.

What are the symptoms?

People with either form of apraxia of speech may have a number of different speech characteristics, or symptoms. One of the most notable symptoms is difficulty putting sounds and syllables together in the correct order to form words. Longer or more complex words are usually harder to say than shorter or simpler words. People with apraxia of speech also tend to make inconsistent mistakes when speaking. For example, they may say a difficult word correctly but then have trouble repeating it, or they may be able to say a particular sound one day and have trouble with the same sound the next day. People with apraxia of speech often appear to be groping for the right sound or word, and may try saying a word several times before they say it correctly. Another common characteristic of apraxia of speech is the incorrect use of "prosody" -- that is, the varying rhythms, stresses, and inflections of speech that are used to help express meaning.

Children with developmental apraxia of speech generally can understand language much better than they are able to use language to express themselves. Some children with the disorder may also have other problems. These can include other speech problems, such as dysarthria; language problems such as poor vocabulary, incorrect grammar, and difficulty in clearly organizing spoken information; problems with reading, writing, spelling, or math; coordination or "motor-skill" problems; and chewing and swallowing difficulties.

The severity of both acquired and developmental apraxia of speech varies from person to person. Apraxia can be so mild that a person has trouble with very few speech sounds or only has occasional problems pronouncing words with many syllables. In the most severe cases, a person may not be able to communicate effectively with speech, and may need the help of alternative or additional communication methods.

I hope I am wrong and this is only a temporary phase.

2008-07-14T19:58:00.003+01:00

We've waited too long for this moment.

Alex has finally decided to talk. He is beginning to join three or four word together to form a sentence.

He said "Mama, more apple juice" two weeks ago when we went to London with Adrinna. That was that .... but then, he started to talk more over last weekend. He said "Mama go make juice" this morning and "Dada go airport" when he wanted to say that his dad is at work.

Two hours ago, he said "Mama, blue sky" and "I go bath, Dada bath" when he wanted to have his shower. He gave Jeremy a big hug and kiss and then said "Bye bye Dada" when Jeremy was leaving for work.

Sweetest words to our ears. We just cannot believe how fast he progressed since Rainbow.

Last Saturday, Nicholas came to play and Alex was sitting next to him at the beginning. They were playing their own things. As the day progresses, he exchanged toys with Nicholas and played with him. They share a giggle or two (only they knew what was so funny) and that, I think is a major milestone.

Alex is very very cheeky and he, like his Dad has a wicked sense of humour.

Our days will be very very different and I can now see the light at the end of the tunnel. Alex WILL talk and the day has come.