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

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?

Mummy don't feel alright.

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

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

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!

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!

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!

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"

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!

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 .....

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

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

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

"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

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

"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

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

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

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!

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

(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

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

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

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

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

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 ...... 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.