A performance for Julia.
It's home visit week again and Julia, our Earlybird trainer came with her video camera. We don't have an assignment this week and we can choose to do anything we like with Alex.
I am all bunked up (yes .... I am afraid so ...) my voice's barely there, I have dehydrated skin and I know I'll look awful on camera, well .... it's about time Jeremy appear on tele.
He sat on the floor with Alex and played with his bus and taxi (Julia had her camera on them), taking turns pushing back and forth .... yes, I am afraid it's not very interesting but it shows that Alex is capable of concentrating and able to take turns. As soon as Julia put the video camera away, Alex started to sing his little songs. It's such a funny sight to see Julia quickly aiming her camera at Alex again (it's true what they say, never work with a child or animal) trying to catch his act. I must admit, Alex is rather cute when he sings.
After the videoing, we sat down to talk about Alex's progress and what we learnt from Earlybird and if we benefited from the course.
One of the things we learned from Earlybirds is The 5 Ps (Planning and Perseverance will Produce Progress and preventing Problems) and Alex's visit to the dentist on Tuesday proved that the method worked for us.
Our last visit to the dentist was in January and the dentist could not do anything with Alex because he refused to sit on the chair and open his mouth. Alex has been grinding his teeth and we were afraid that it would eventually wear out his teeth. The dentist Dr. Kouskoura decided that we should make another appointment to put a layer of fluoride paste on his teeth. When Alex grinds his teeth, he will wear out the fluoride layer instead of his teeth. That sounded good but will Alex co-operate?
I used the 5 Ps method and prepared Alex for the appointment the night before. I told him what to expect (the bright lights, there maybe another person in the room etc), what to do when he sees the doctor (open his mouth and say ahhh) and that he must sit on the chair to have his teeth checked.
When it was our turn to see the dentist, Alex walked in with confidence and when the doctor asked him to sit on the chair, he sat on the chair. I then asked him if he remembered what I said and he said yes. In less than 15 minutes, he had his teeth checked, the fluoride paste in placed and no problem and no tantrum. All went well and I was so proud of him.
I told Julia of our experience and she was so happy for us. We have been very lucky so far ... to have met the nicest people and they obviously cared very much for us.
Julia left an hour later not before she tasted my Raspberry and blueberry lime drizzle cake ... straight out from the oven.
Thursday, March 27, 2008
Monday, March 24, 2008
A visit to the A & E
We've had a scare this afternoon and rushed Alex to Wexham Park Hospital Accident and Emergency Unit.
Alex's been coughing for the past few days and as usual, cough and cold will just away. We did what we usually do, gave him lots of fluid and rest.
This afternoon, as we got home from my friend Jane's house at around 3:00pm, Alex suddenly had a coughing fit and then when I asked him to spit, there were blood on my tissue. I quickly checked his mouth to see if there's any cut or something else but couldn't see anything. As it's Easter Monday Bank Holiday today, our GP's not available.
Jeremy rang NHS Direct to find out if we should seek immediate medical attention. After 15 minutes on the phone talking to two different people, we were told to take Alex to the A & E immediately as they don't like the sound of it. They get really concerned about a child's well being especially toddlers and wouldn't want to risk wasting time.
Within 30 minutes from hanging up, we were sitting in the Children's A & E waiting room and seen by a doctor in less that 20 minutes - that's how fast things were .... I'm impressed.
The doctor looked at Alex's throat and ears, listened to his lungs and checked his temperatures. We were told that we should not worry too much and it may be a one off incident as he has been coughing and may have injured the lining of his throat. We were given a test tube and told to monitor his progress - should he cough out blood again, we need to send the blood sample to our GP for test.
What a day! I am glad it's nothing serious but at least it gave us confidence in our national health service.
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Christine Hoh
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8:26 pm
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Friday, March 21, 2008
I'm not giving in ..... you first!
It's battle of the will with Alex lately. Everything starts with a "No" whether he wants it or not. It drives me up the wall sometimes .......
Our usual morning starts with ....... at 6:00am .... "Mummmmmm" two seconds later "Mummmmmmmmmmm" and then silent. 6:30am ... "Mum" and I will turn around and we will have our nice hug in bed. He is quiet considerate sometimes but as soon as he sees the clock turned 6:45am, he will get out of bed and run into his own room and start pulling drawers out and pouring it's contents all over the floor. I would normally let him play on his own until I hear nothing and knows that he is up to no good. By then, I will get out of bed (he knows that if he goes quiet, I will get out of bed - what a cheeky devil) and he will then have his shower, brush his teeth, change into his day clothes and then go downstairs for breakfast. He will choose his own breakfast and help me to prepare them. That's how it's always been but lately, he is one pain in the you know where.
The morning started as always but this time, when I ask him what he wanted for breakfast, he would say "No". I'll give him a few choices and he will say no to everyone of them. I had to choose one and as soon as he saw what I got him .... he'll say "No" and then look again and say "hmmm" and ate the whole thing. What a contrary boy .....
From asking him if he needed the toilet to what he wanted for dinner is always a "no" and then a "hmmmm" except when I ask him if he wanted a bath and if he wanted cake.
I forget that my son is getting older and that sometimes, he has his own mind ... but because he is not talking .... it makes it harder to change the way I treat him.
I have always thought that when he starts talking, everything would be OK but now I am not sure. We will have new sets of problems to deal with and mostly because we won't know how to treat him.
His cognitive ability is at 3.5 years old, his speech is at 18 -22 months, his fine motor abilities at the level of a 24 - 26 months child. So .... the question is
Should we treat him as a four year old or should we treat him as a 2 year old?
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Christine Hoh
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Monday, March 17, 2008
It would have been a very different tone if I have written this three hours ago.
A soak in the bath can really make a difference to one's well-being. I haven't had such a bad day with Alex since ..... May/June last year?
I really believe that we need to set some "Me" time even if it's only for half and hour. An understanding partner is essential to any family. If I hadn't had my half and hour "Me" time, I know I would be threading in dangerous water ..... I might get back to my depression mode. I have been there and WILL NOT let myself go in there again.
Anyway, I assumed we have passed the public toilet phobia stage but today proved my assumptions wrong.
I took Alex to Legoland. I thought it would be nice to take Alex out while Jeremy get some sleep after two night shifts.
We had a great time going on a few rides and then .... Alex said he wanted to pee. I took him to the toilet but as soon as he saw the toilet, he refused to go in. So, I took him to the disabled toilet next door as it's quieter and cleaner. We got in and I closed the door, he started screaming and crying inconsolably .... what was two minutes seemed like a life time in there. Meanwhile, he wet his pants and I had to take him out of the toilet. I looked at the toilet and try to do the "Iceberg" metaphor mentally but it's quiet a different story when you are all alone with a screaming child.
I can't think of anything at that moment and took him to the customer service area where there are changing facilities. I can't change him into his clean clothes when I am not sure if he had finished his business, so I asked the Customer Service Assistant if there's a quieter toilet. I told her that my son is autistic and needed some space. You cannot believe how helpful she was ..... she took us to the first aid room with a clean toilet and asked us to stay as long as we liked. Meanwhile, she came back to help console Alex bringing "Hero" badges and saying that if he uses the toilet, he'll be a "Hero". It took three people including myself to convince Alex to go sit on the toilet but we all failed miserably. I had no choice but to nip it on the butt and scooped him off the floor .... sit him on the toilet despite his screaming .... he did it and then stopped crying instantly.
We all clapped our hands and said how good he was and he was really pleased with himself. I cannot thank them enough and I must write a thank you letter to Legoland to tell them how great their employees are and how well informed they are about Autism.
After the Episode, we continued to go round the park and left an hour later. I cannot help feeling down as it's been such a long time since Alex experienced any distress or having tantrums.
I guess my feeling down escalated from Sunday when I took Alex trampolining. They changed the coach again and this time it's a young girl and I don't think she has any experience with special need children.
All the other children are much older than Alex and they have been doing this for a long time. This is only the fourth time we've been and each time a different person teaching Alex. As usual, Alex is a playful child obsess with signs and doors. He jump around looking at signs above the doors and point at them. It's quite dangerous as he was jumping all over the place and the trampolines were placed next to each other. The instructor kept asking Alex to pay attention and jump in the middle but she couldn't get his attention. I had to do something .... I got Alex's attention and managed to get him to jump in the middle for a few seconds and off he went into his own zone again. The place is echoey and I could hear my own voice kept asking Alex to "listen" and "jump". I felt like a control freak and it's not a very nice feeling.
As soon as he started to jump nicely, we had to get down again to let another child go. It's so frustrating as we had to start all over again with Alex. I know the reason why we had to keep changing as it allows the children to learn turn-taking but with Alex, he needs time to warm-up.
The final straw came when he jumped onto the next trampoline. It was so dangerous and I could see an accident waiting to happen as the boy using the next trampoline was an 8 year old boy with ADHD - when this boy starts jumping, he couldn't stop. I told Alex to jump properly or we go home. He thought I was joking with him and when he jumped onto the next trampoline, I saw myself calling him over and scooping him off the trampoline and took him to the corner and put his shoes on. I said nothing and pull him along and left the centre. I did not look back to see what the others were doing but I need Alex to learn consequences and to take my threats seriously.
I came home feeling down and tired. After putting Alex to bed, I went downstairs to unwind, watching some CSI and organising all the Lego pieces into colours and shapes (One might say I have a little OCD -Obsessive Compulsive Disorder) and then went to bed feeling really tired.
What went wrong? Could it be his fever? He had a mild fever tonight and I sent him to bed with a little Calpol.
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Christine Hoh
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11:31 pm
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Labels: Legoland, Sensory overload, trampoline
Friday, March 14, 2008
I am so happy I could fly ....
I've just had a call from Rainbow Resources Centre. We have been waiting for this call for what seemed like forever.
Two weeks ago, I contacted TASS to find out if they have heard anything from Rainbow - if they will offer Alex a place or we have to find an alternative . We've heard nothing from anyone since our visit to the school in November. Neel called me the following week to explain that they are not in any position to offer Alex a place as there were two other pupils who were not ready to move on to the next level. She felt that they might offer Alex a place in September and asked us to continue to request for Rainbow towards the end of the Statementing process.
Liz the head of the unit called this afternoon and asked if we are still interested to place Alex at Rainbow - I said "Yes, please" (the call was a surprise and I just reacted like a silly school girl as I didn't know what else to say - I guess she could hear the excitement in my voice).
I was told that they may be in the position to offer Alex a place after Easter break as there may be a child moving up to the next level and waiting for placement. It's quite tricky as if the school, that the child is waiting cannot take him in, Alex may not get in then. The next possible placement would be Summer Term and that would be around May/June. Well, it's way better than September.
They will have to see Alex at nursery and at home. We've scheduled a date for the home visit in April and from then, they may be in a position to tell us when they can take Alex.
Looks like everything is may be and we won't get a definite answer until the very last minute. It's quite frustrating but I could understand why - they do not want to give parents hope and then had to turn around and say "I am sorry but we cannot ....."
Anyhow, it's still good news as we have set a date for the home visit. Can't wait .....
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Christine Hoh
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Labels: Rainbow Resources Centre
Thursday, March 13, 2008
Legoland here we come.
We received a postcard from Legoland thru the mail today. They are opening this weekend in time for the Easter break in two weeks time. The last time Alex and I went there was in October last year and we came back with wet jeans.
Now that it's opening again, I can take Alex there on Mondays or Tuesdays when we have nothing better to do - ha hah a
We bought the Annual Pass last year and I can honestly say, it's one useful pass to have when you have a toddler. Not just for the rides but it's also a beautiful, clean and safe place to have a good walk.
Alex benefited a lot from going to Legoland last year. For a start, he learned to queue and take turns. Because of our regular visit to the park, he is a happier child (in the past, he seldom show emotion on his face, we find it difficult to judge whether he enjoyed himself or not) and at about the same time, he started to hug and cuddle me more compared to the last three years of his life. I am not sure whether it's a coincidence or spending time going to the park together brought out the happy Alex.
His gross motor movement improved because of the walking. Prior to Legoland, he goes every where in a stroller and when he runs, he looked very clumsy. Since dumping the strollers, Alex walked everywhere and he gradually became a very sociable child (he likes the attention from adults and he liked visitors).
I truly believe that walking makes Alex a very different child.
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Christine Hoh
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Labels: Legoland
Monday, March 10, 2008
SOB ....
My phone rang and the caller ID says "BATT HOME" and my heart sank.
Last Friday, my Ex's mum Alice called to let me know that Grandad Batt (my Ex's grandfather) was admitted into the hospital for his breathing problems. He has been in and out of the hospital a few times and mum said it's rather serious this time. The doctors suggested that he should go to a care home when they discharge him.
I meant to visit him at the hospital since Friday but Jeremy's been working all week and I have no baby sitter to watch Alex. I thought that I'll wait till Jeremy's off days and pay a visit. It didn't come soon enough and I did not get a chance to see him one more time.
Although I don't see Grandad that often, I love and care for him very much. He was a gentle man with a big heart and very very independent. Even after my ex and I have separated, Grandad still sends me Christmas and Birthday cards. They read "To my Granddaughter".
I cried ......... Grandad .... you'll be missed and you'll always have a place in my heart.
Posted by
Christine Hoh
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11:16 pm
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Sunday, March 09, 2008
Not much to update since Friday but this morning, he said "hello" and "how are you" quite clearly to my brother, Vincent over the phone.
I called home to find out the results from yesterday's Malaysian General Election and I am so happy with the results. Finally, Malaysians are doing what they were supposed to do long time ago. It's never too late and I think this will give the Government a "wake-up" call and start doing things for the people and not their own pockets.
I am not one who likes to talk about politics but I can no longer keep my silence because the Malaysia I once so proud of has gradually disappeared.
Posted by
Christine Hoh
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11:56 am
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Friday, March 07, 2008
I've got a bruised on my wrist and you know where!
Hmmmm ..... it's not me ..... it's Alex. He dragged me down while we were ice-skating. It was a straight fall and right on the base of my spine. I did not realise I had a swollen wrist until I took my gloves off. I must have tried to break the fall with my hands and must have twisted my wrist.
Anyway, I am better now after a good rub using a Chinese traditional ointment for bruise and sprains.
Alex is still not very confident standing on the ice unaided and kept leaning forward trying to grab me. This made it hard for him to balance his body, hence dragging me down with him. He is however still keen to go onto the ice again. He is much better today compared to last week - so I guess we'll just have to persevere.
I realised I haven't written much about Alex and his toys. Children with ASD are diagnosed based on the Triad of Impairments: Difficulty/Lack of Social Communication; Difficulty/Lack of Social Interaction and Difficulty/Lack of Social Imagination or flexibility of thought.
In the past, Alex would line his toys in a line and sat next to his toys stimming (flapping his arms when he is excited). Since late last year and early this year, he started "Symbolic Playing". An example of symbolic playing is when a child pretends that a banana is a telephone receiver, a box as boat or rocket etc.
I find this page very interesting - giving me an idea at what stage Alex is compared to his peers:
http://upetd.up.ac.za/thesis/available/etd-08252003-102211/unrestricted/09appendixB.pdf
Based on the checklist, Alex's symbolic play falls between Stage VIII and X roughly around 3 years to 5 years.
Examples of his recent imaginative play are
- He uses a yellow ball pretending to be a moon. He landed his toy rocket on the ball and would tell me "mama moon". He would then perform a countdown 5..4..3..2..1.. blast off (not in exact word but more like a hum);
- He put a balloon on top of a cookie jar and lift the jar and the balloon - pretending to be a hot air balloon;
- He transport his cars in a tray pretending to be a ferry and then unload the car in a line pretending to be a queue waiting to board the ferry;
- He uses his human figures from other toys and place them on a fire engine and pretend to be a fire fighter;
- He climbed inside the duvet and pretend it's a tent;
- He uses a piece of paper and place a cap on it pretending to be a train (the cap as the funnel)
I told Julia about his play and she is really impressed with his abilities. Jeremy and I often watch him play and would remark to each other "if this is not imagination, we don't know what is".
Alex is delayed in all three categories when he was first diagnosed but his Social Imagination skill is catching up really quickly. Based on the same checklist, Alex's speech falls on Stage II (similar to those of 17 to 19 months).
Children with ASD developed differently comparing to their peers. Developmental delay in some areas and advanced in others. No one can actually say that Alex's ability or development is similar to children of a certain age but it has to be broken down to different areas such as his speech ability is similar to an 18 months child or his cognitive/comprehension ability similar to those of 3.5 to 4.5 years.
We learn to appreciate each and every development that Alex achieves and what he can do now brings us so much joy because we know we did not miss any of his milestones.
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Christine Hoh
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6:22 pm
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Wednesday, March 05, 2008
A very different boy this week.
Monday 3/03/08
We took Alex to Henley on Thames for a walk. It's been exactly four years since we've been to Henley.
Our cheeky boy decided to have his own mind lately and has been very playful. Everything seemed like a game to him.
After parking my car, Jeremy went across the road to get the "Display & Park" ticket, I unbuckled Alex from his seat and he got out of the car. I told him to stand still while I take his bag from the back seat. Normally, he would wait for me to hold his hands but this time, he decided to go after his dad. It was less than 2 seconds when I realised that he wasn't standing where he should be but across the road holding his daddy's hand. Luckily it was a quiet day and there wasn't any car around. I went across the road and told him off but he thought it was funny and laughed. It's Deja Vu all over again - Alex and his "terrible two" stage.
We had lunch at the Rowing Museum and Alex asked to go to the toilet. This is a good sign as he has overcame his public toilet phobia. I had a hard time trying to get him to use a public toilet in the past and Julia suggested using social story to prepare him. I haven't had the opportunity to make one myself but have been reading "Potty Time" a book by Bear in the Big Blue House to him before bedtime. He likes the book and I think it helps in some way.
After lunch, we had a long walk to the weir and back - Alex was very good the whole time. On our way to the weir, he pointed at every "Lifesaver" hanging on the stand and insisted that we say "Lifesaver". Then on our way back to the car, he pointed at the hedges and insisted that we said "Hedge". It's a repetitive game to him and it's as if he is counting them as well.
We had a great time in Henley and decided to swing by to Costco to grab some bargain. In the past, Alex hates Costco and would wriggle and whine. He was very different today, not only did he sat nicely on the trolley, he helped with the shopping as well. I mean really helped with the shopping - he decided to put everything that I looked at in the trolley. I was shocked because, he would put them back onto the shelves in the past but this time he decided to buy them instead and when I object, he laughed. What a cheeky devil!
He also asked to use the toilet in Costco - so, it's not a coincidence that he wanted to use the toilet at the rowing museum.
Tuesday 04/03/08
Julia, our Earlybird trainer came by today with a video camera to record our home work with Alex. We were given an assignment, we had to play with Alex using the "three-way shared attention" method. We had to choose either using a book or a toy with Alex to encourage interaction, turn-takings and communication.
We chose to read a book together and Alex was communicating the whole time. Julia was really impressed with him and told us that his interaction with me and the book shows that he is more advanced than his neuro-typical peers. He could anticipate what will happen next and even took part in the story. I am just so proud of him.
Wednesday 05/03/08
A very independent boy today. I was told that he said "Good Morning" very clearly at nursery. He also attempted Stretch'n'Grow with no help from an adult and finished all his lunch all by himself. What more can I ask for?
I believe having an open mind and stay positive helped Alex's progress. We let him take his own time to develop while setting boundaries and guiding him when we see fit. It does not matter if a child is neuro-typical or having special needs, when he is ready to, there's no looking back.
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Christine Hoh
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4:12 pm
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Saturday, March 01, 2008
Ouch! Don't touch me pleazeeeeee ......
Went Ice Skating with Alex yesterday and boy ..... it hurts.
I fell once and that's because I couldn't stop but it didn't really hurt. What hurts most are my calves. As soon as I slipped into the skating boots, I could feel my calves pulling and it felt as if I have walked miles and miles. Really does show how unfit I am - need to exercise more ....
Anyway, Alex went onto the ice a few times but was hanging on to me for dear life. It's not easy to hold a small child and to skate when you are only a beginner yourself. I am supposed to feel cold with all the ice around me but I was sweating for Britain.
Alex asked to get off the ice and I left him sitting by the rink while I went off skating myself. He seemed to enjoy watching me skate and laughed whenever I come back to him. He would then wave me off and say "bye bye" and laugh again. He had a great time while I was trying to dodge the dodgy ice patches. I decided to find an instructor to give Alex private lessons to give him some confidence. After the session, I asked Alex if he like ice skating and he said yes.
On our way out, I stopped by the Reception to get information on private lessons and was told to leave my contact and one of the instructors will call me. I mentioned to the Receptionist that I need one who has experience teaching special need children. Her reaction tells me that they have never come across such a case. Well, I'll just have to wait for their call.
It's fun to do different things for a change.
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Christine Hoh
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10:12 am
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Thursday, February 28, 2008
Banana, Apple, Pear ...... Alex's new words.
It's difficult to know exactly how many words Alex could say. I know he understands more than we know but when it comes to speech, he can only say what he sees.
When I read him his books, he will point at certain things that catches his eyes and say the word. Because his pronunciations are not very clear, I had to listen very carefully to be sure what he is trying to tell me. He seem to enjoy sharing this new skill with me.
His fine motor skills are also improving. He can now turn the trains "on" and put them on the tracks correctly. He would have struggled in the past and gave up without trying.
He can also zip and unzip his coat with ease. Funny how I had to learn simple things like "hand over hand" method from Early Bird Programme to teach Alex how to zip his coat. It shows that sometimes, we tend to over complicate things and doubt what we can actually do naturally.
I had a conversation with a friend a week ago about "bullying in school". She has three beautiful neuro-typical children and like most protective mothers, she is worried about her children being bullied because they are different. Her children are mixed - Caucasian and Chinese. It didn't occur to me that being a mixed child, they too can be a victim of bullying. In order to prevent this from happening, she tried to educate their classmates by introducing them to Chinese culture. During Chinese New Year, she brought mandarin oranges and snacks to their class and had a short talk about the celebration.
I think it's a really good idea and it gave me an even better idea. I spoke to a number of parents with autistic children about schooling. They had their children transferred from mainstream school to Special Need school because of bullying. Although Special Need school is a safer environment for our children, it lacks the opportunity for them to flourish in "real" society. I know I won't be here forever to protect Alex and I would prefer Alex to learn to deal with the real world in mainstream education setting.
In order for Alex and other high functioning autistic children to attend mainstream education without fear of being bullied, I intend to approach our local education authority to organise talks for school children about Autism.
Autism is not a well known disorder amongst other disabilities like down syndrome, cerebral palsy, deafness, blindness etc. Because of the lack of information, children with learning disabilities are targeted by bullies and as a result suffer from low self-esteem, depression and perhaps regression.
When one talks about autism to adults, it is automatically associated with the movie "Rain Man". The movie is about 20 years old and I am sure many youngsters have not heard of this film. Autism is not something that we talk about as a general knowledge topic, or even a family discussion among family members. Hence it is important that we pass this information to children through talks in their school. This, I believe will help them to understand the challenges that special need children encounter each day of their lives.
Children learn what they are thought and I don't believe there is an ounce of evil in them. By providing knowledge, we could better the lives of our special need children attending mainstream school.
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Christine Hoh
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11:38 am
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Sunday, February 24, 2008
Orlando .... here we come!
We've booked our flight ticket to Orlando yesterday. Although we won't be going until end-November, we decided to do things early this year. This may be our only chance to go somewhere for more than two weeks before Alex starts school in January 2009.
First Orlando, visiting parks like Magic Kingdom, Animal Kingdom (maybe), Universal Studio, Sea World and hopefully Discovery Cove. There are so much to do but the most important thing is what we can do with Alex. Then, we may choose a few other destination in the East Coast of Florida and we may go to the Everglades. St. Augustine looks interesting and we may go there when we head for Tallahassee.
We said we will go to Erin's Barmitzvah this year and we are definetely going now.
OK, don't say I didn't tell you first Adrinna, I tried calling you three times yesterday but I couldn't reach you. So, I am sorry you have to find out through my blog - ha ha ha.
On our way back from Tallahassee, we may go to Tampa and one more destination in the West Coast before we had to come home.
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Alex's new words: Boat, Bird and a few more (I am having a headache now and mental block). His speech is coming along but they are still not very clear. I am not going to be too critical and let him develop on his own pace.
I also started giving him Haliborange Fish Oil (orange flavour) with Omega 3 and he loved it. I have been giving him Haliborange multi-vitamin with Omega 3 for sometime but he stopped taking them about 6 weeks ago when he wasn't well. Since then, he refused to take them and spit them out when I gave him. His appetite deteriote and was a nightmare to feed him. He wouldn't eat food he used to loved and wanted to snack on cakes and crisps most of the time.
I decided to try him with fish oil and surprisingly, he like it and I can see improvement in his appetite. He is eating better and he is talking more than he usually does.
So, watch this space for more development.
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Christine Hoh
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Thursday, February 21, 2008
Bus, Moon and Jelly - what do they have in common?
The answer to the question is ..... Alex's new words - yeah!
I was playing flashcard with Alex on Tuesday morning and he said "Jelly" when he saw the picture. Then I showed him a picture of a bus, he hummed "wheels on the bus" and refused to say the word. The next card was a moon and he said "Moon" - just so proud of him.
Later in the evening, he looked out the window and turned to me ..... "Mama .... Moon" and pointed at the full moon outside our window. Wow, that's a two word sentence and he is sharing his new word with me ..... gave him lots of praise and he was so proud of himself.
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We went to Oriental City in London yesterday. Alex and I went there with Amelia, her husband David and their son Anson. Jeremy was working late yesterday, so The Cox Family came from Oxford to take us there in their car.
It was around 4:00pm when we left Bracknell and had to use the M4 to London. Half way through the journey, Alex asked to go to the toilet .... (we were in a traffic jam and there was no way we could let him go) I said "Alex, can you hold your pee until we reach London?" he nodded. Along the way, he saw many buses and he said "bus" looked at me and pointed. Two hours later, we arrived at our destination. He was still dry - Thank God!
We had dinner at the food court and yum yum yum - we had "Nasi Lemak" something I craved for .... for ages. Then, Alex couldn't hold it any longer and asked to go to the toilet.
I knew it was tricky as Alex hates public toilets. He hates the echo in the toilet, the sound of the hand dryer, the tight cubicles and most of all, the flourescent lights. I had a hard time taking his pants off as the toilet was filthy and had to do everything as quickly as possible without touching the floor ..... had to clean the toilet seat with one hand whilst holding a screaming child with another. Soon as he had done his business, he held on to me for dear life and I could feel a few bruises coming up. Oh ..... all that just to go for a pee.
At Early Bird course, we learned to use the iceberg exercise to identify why these responses may be happening and I could do this exercise mentally prior to things happening. That's why, Alex is a contented child with very little tantrum. Unfortunately, in such circumstances when we are out and he needs to go, we had to use a public toilet.
Julia, our trainer suggested that we use social stories to prepare him for such situations. On a few occasion, it worked but I could understand why he scream his lungs off yesterday. The toilet was filthy, poo all over the floor - it's pure disgrace and plainly disgusting. I would suggest the Department of Health pay a visit to this toilet beside the food court.
Apart from the horrible toilet, we enjoyed ourselves and Alex fell asleep in the car on our way home.
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Labels: A new word, Oriental City
Monday, February 18, 2008
Alex turned four on Saturday.
We had his grandparents over for lunch and I made parsnip and apple soup and boy .... that tasted good. Cooked everything from fresh ..... not exactly, I did use Knorr vegetable stocks instead of making my own - yeah right .... as if I have time doing that!
I find it difficult to update my blog recently. Since potty trained, Alex has been really good with asking to go to the toilet. He's done that alright, 15 times just yesterday and thank god Jeremy's home to help out. I would have waved a white flag if it's just me and Alex.
Anyway, his progress is kind of slow this two weeks - so, not much to update but he is extremely cute lately. He likes singing and he adores his dad .... I am a little jealous (not really). When I see the both of them so close, my heart melts.
Spoke to my mum last week and she told me something that made me feel quite sad. My cousin's son is 10 months younger than Alex and he is still not talking. He is displaying many symptoms of autism based on what my mum told me. I told my mum to tell my cousin to get professional advice. She said that she won't because she is afraid that they may not accept the possibility.
The problem with this scenario is that people have wrong perception of autism. I wished someone would have told me earlier about autism and I would have got Alex into the system earlier. The way I see it ...... I would rather have him checked and then told it's not autism than delay in getting help if it really is.
Early intervention proved beneficial to both child and parents. In this instance, the child's future is in the hands of his parents. If they cannot accept that there is a problem with the child, no amount of outside help will benefit either of them.
Label or not, the interest of the child comes first. I am not afraid to tell people that my son is in the spectrum if I know they can help him. Any amount of help is better than none. "Ask and you shall be given".
I suspect that autism runs in my family. My grandfather (my mum's dad) was nicknamed "Slow Boy" in his youth. My fifth uncle is also very slow when he was a child (my definition of slow is the polite version of stupid), and then there are a few uncles who are loners and dislike changes. I see this as vary degrees of the spectrum - the more I read about autism, the more I see it in my family.
The possibililty of my cousin's son being autistic is slightly higher than one without a family history of the disorder.
I know it's not polite to tell people that you think there may be a problem with their child but if you did and they take your advise on board, you may have saved them. I know I would like someone to tell me and thank god .... someone did!
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Wednesday, February 13, 2008
Alex had his birthday party at nursery today.
Funny how you turn into your mum when you became one yourself.
I baked a carrot and raisin cake as a birthday cake for Alex. I also packed 18 party packs containing a pack of Madeline (small cake), a packet of mini Pringles, a pack of fruity sweets and two small toys to be given to his class mates. Alex was really excited about the whole thing and offered to help me load them into the car this morning. He is getting really good with sharing and is a very generous boy.
I learned this from my mother. When we were young, my mum used to do the same thing for us, I guess this teaches us to share and I like to believe that it also build part of our character.
Anyway, I also enrol us (Alex and me) into Parent & Toddler Ice Skating Course today. This is a six weeks course for beginners starting in two weeks time - I am really excited.
I want to do something different with Alex and I want him to experience different things, then find one that he really likes. I am not sure if he will take onto this because it requires patience and balance - he has neither at the moment.
Alex is quite clumsy in some area, I would guess that he might not be able to master the sliding movement but then again, I might be wrong because he has changed quite a bit - willing to accept changes and help since his chiropractic adjustments.
His speech is coming along - recently, he began to experiment with tonelity. Using different tonelity to address "ma ma" and "da da". It's quite cute really and we love to hear him call us in different tones. I wished I could record his words and post in here to share with you.
Yesterday, I heard him sing "wheels on the bus" using all the names he knows like "ma ma", "da da", "na na", "pop pop", "cher cher" and "kor kor". This is one big improvement!
He is also using Makaton to sign - something he never wanted to do before. He is signing book, more, toilet, juice and perhaps a few I don't understand (ha ha ha).
I am just so happy with his progress that I forgot what he was like six months ago. I had to constantly go back to my previous posts in my blog to remember the old Alex.
One month and 13 days, Alex is a very different boy. Potty trained (dry day and night), drinking from an open cup in nursery, use Makaton and extremely cheeky.
It makes waking up every morning an exciting day because, you'll never know what he will surprise you with!
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Labels: A new achievement, Chiropractic and Autism
Monday, February 11, 2008
My Little Chinese Boy!
This suit was tailored made for my friend Amelia's son Anson. Unfortunately, the tailor made it too small for him and fortunately, it fits Alex .... snug as a bug.
We had a potluck party on Saturday, inviting a few close friends to celebrate Chinese New Year together.
Our friend Jerome and his wife, Lucy just had a little boy - Brendan. He is one gorgeous little boy. Holding him in my arms reminded me of Alex when he was just a wee baba.
It was nice to have friends over and Alex was so excited about having his big brother Anson and big sister Brenda over. Jeremy made a mistake by telling him that they are coming on Friday night and guess what? We had no peace until they finally arrived at 1:00pm Saturday!
Anyway, our Alex is one lucky boy, he had his birthday presents early from our friends and our friends just cannot wait to see his expression when he opens the presents. We had to allow him to open them early. We have decided not to get Alex anything but deposit some money into his bank account. It's too soon after Christmas and he is still going through his Christmas presents. Buying him more toys or books would be a waste of money.
We had to be sensible although it sounded a bit mean. Anyway, I know I will get him a little something closer to his birthday and knowing me, I normally swallow my words - ha ha ha.
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Sunday, February 10, 2008
Received the Assessment report from Education Psychologist. This is a summarised report and the reason I am sharing this confidential report is to give those interested an insight of the process and perhaps able to help those with a similar problem.
Background Information
Alex was given a diagnosis of Autistic Spectrum Disorder (ASD) in April 2007 by Dr Irani (Consultant Paediatrician) and this was confirmed in the May, following a multi-professional assessment at the Margaret Wells-Furby Children’s Resource Centre. Subsequently, he was referred to the TASS Pre-school service and Neel Wilson began working with him. She referred Alex to the Educational Psychology Service in October 2007.
Neel Wilson wrote to the SEN Section in December 2007 to request a statutory assessment of Alex’s special educational needs. The request was agreed and this report is provided as the statutory psychological advice for that assessment.
Assessment
I discussed Alex with staff at the Teddies Nursery on 23.11.07, and with his mother Ms Hoh during a home visit on that day (Alex was ill and so not at the Nursery). I learned from the staff that initially he had been receiving five hours 1:1 support funded from the Early Years Support Grant. More recently, Amanda Waistell (Inclusion Assistant) had started working with Alex for one session per week (2½ hours) with the staff being funded for the rest. He had been isolated when he started at the Nursery but this had improved, as had his eye contact. He had begun to acknowledge the other children but was not yet interacting meaningfully with them. Alex was not yet toilet trained and was wearing nappies and training was to begin at home and in the nursery. His expressive and receptive language development were delayed and he communicated through pointing with noises, some limited use of signs, and some use of words (e.g. car, more, thank you). When I visited the home, Alex gave good eye contact to me, later accepted my tickling his tummy, said “Bye, bye” and shook my hand when I held it out to him. Given the ASD diagnosis, I formed the view that he had appropriate skills in some aspects of his social interaction.
I visited Teddies Nursery again on 7.2.08. I discussed Alex with the staff (particularly with Catherine Wood, his Key Carer), observed him over a two-hour period, reviewed his East Sussex Curriculum Based Developmental Profile (CBDP) and carried out some 1:1 assessment to try to gauge the current level of Alex’s cognitive abilities.
Alex continues to attend for three mornings per week but currently also attends on Thursday afternoons while his parents are on the Early Bird course. I learned Angie Brown (Special Needs Assistant with the Speech and Language Therapy service) was working with Alex and staff for one session per week and as a consequence, Amanda Waistell had withdrawn to allow this to happen. She will resume her support once Angie Brown’s sessions have ended. The staff had received Makaton training and all the children were now learning one sign each week. Alex is still easily distracted and so at times the staff work with Alex 1:1 both in the main room and away from it. These sessions include daily work using Jolly Phonics and work on activities provided by Angie Brown. They have also set up small group games to develop Alex’s social skills and encourage contact with his peers. They had tried picture cards for use in a visual timetable but these had not worked well so they were preparing photos of Alex doing things for this purpose instead. Toilet training had been started and been quite successful, to the extent that Alex is now wearing pants rather than nappies to the nursery. Staff were preparing a photo of the toilet so Alex could have a toilet card to communicate when he needed to go. I learned later from his mother that his training at home has also been going well and he can stay dry, but currently still wears nappies at night as he can still be wet.
Alex looked at me and smiled back when he came into the room. I walked over and held my hand out and again he shook it. He went over to the carpet to join some other children who had arrived much earlier and had been playing with cars. I noticed he sat and agitated his hands and legs (‘stimming’). This happened at several points in the morning but it was not frequent or overly intrusive.
Alex was told the cars were finished, accompanied by the Makaton sign for finished, and he immediately put the car in the tray. There were many other occasions across the morning when I was clear that Alex is compliant and biddable. All the children then arrived to form a circle for registration. When Catherine said: “Morning Alex” he immediately said: “Uh-uh” (his version of morning) in reply. Alex was aware of me and regularly made good eye contact and sometimes smiled when I smiled at him. After registration, the children were asked one by one to get their coats, ready to go outside. Catherine asked a girl to take Alex to get his coat and he went off holding her hand, seemingly happily enough. When he returned, he stood outside the circle as there was no gap to allow him to enter. He stood passively and made no attempt to communicate with the children in front of him or to step through them. Similarly, when he was asked to line up, his route was partly blocked by a boy on the floor and Alex stood back passively and looked at him, rather than moving forward and so encouraging the boy to move, or moving to one side to walk round him. Catherine said she feels Alex can seem over-passive at times; for example, when he is on a bike and another child requests it, she feels he gets off because he follows instructions passively, rather than because he has finished riding it.
All the children went outside and Alex was given a large ball which he threw with signs of pleasure. He did not look at the ball or the carer when given it. He then got onto a bike with pedals but used his feet to scoot it around. I understand from Catherine he is not yet able co-ordinate his feet when pedalling. He took a different ball from me when I held one out. He made a sound and pointed towards a slide, as if trying to show / tell me something, although he did not make eye contact with me to indicate he was establishing shared attention. I encouraged him to join me at the slide and a carer helped him climb up, saying she felt he was unable to do this yet. He then slid down the slide. When prompted via the word “more?” and the Makaton sign, he went behind the slide to climb again and I loosely supported him, as he was climbing it well. On a third occasion, he climbed up entirely by himself. I asked the carer to do nothing when he slid down and he got up and stood passively. He needed organising / encouraging to find another activity. This was the case throughout my visit, in that during this period of observation, Alex never initiated an activity for himself or engaged in spontaneous play and needed to be supported to do this. At these times, he appeared to withdraw within himself.
Throughout the time I observed Alex, there was little interaction with his peers; he did not initiate contact and the others did not initiate it with him. He went over and stood on the edge of a group playing at one point, as if interested in what was going on, but there was no contact between him and group members. Not surprisingly given the ASD diagnosis, Alex’s social skills will continue to be an area for development.
Alex’s Curriculum Based Developmental Profile (CBDP) shows his achievement so far in the six areas of the Foundation Stage i.e. Personal, Social & Emotional Development, Communication, Language & Literacy, Mathematical Development, Knowledge & Understanding of the World, Physical Development and Creative Development. On the basis of the information supplied, it was clear he had made some progress since the CBDP was started, and Alex’s current achievements are within P Levels 1 – 3. That is, he is working at levels similar to those expected for children aged from birth up to 2½ years at age 3:11 years. Of course, this evidence of delayed development needs to be set in the context of the effects of his autism.
I also assessed Alex using some scales from the British Ability Scales (second edition) (BASII). Such testing is dependent on the child having an understanding of the formality of the situation, good attention and concentration and so on, so not necessarily features present in children with autism. As such, I used the tasks in an exploratory way. However, I learned Alex can be willing to sit with relatively unfamiliar adults and co-operate. He can attend but his attention span is short and he often needs focussing, for example with verbal and visual prompts. He does not yet always look with intent and understand which aspects of a task to attend to. Not surprisingly in the context of the effects of his autism, Alex’s scores were well below average.
During our discussion on 23.11.07, Ms Hoh said she felt Alex is quite social and might manage mainstream schooling at some stage. Her main concern was his expressive language as she felt there were no issues with his understanding. She and Mr Green had scheduled visits to Holly Spring Infants, the Rainbow Resource and Kennel Lane. In a phone call I made on 3.1.08, Mr Green told me he and Ms Hoh had made these visits and that their preference was for initial placement at the Rainbow Resource. During a brief conversation with Ms Hoh at Teddies on 7.2.08, she confirmed that both she and her husband would like Alex to have place at the Resource. One reason for this choice was that the speech and language therapy input would be more intensive. As this would be part time, she would also like him to continue attending at Teddies Nursery for the rest of each day.
Educational Needs
Alex has been diagnosed as having ASD. As such, he shows developmental delay across the six areas of the Foundation Stage.
Recommended Provision
Alex would benefit from:
· Full access to the Early Years Foundation Stage curriculum, adapted to take account of his particular needs;
· On-going monitoring of his progress across the Early Years Foundation Stage curriculum at a detailed level (the CBDP will continue to be a key aid for this and when planning his learning objectives);
· Specialist nursery placement for children with ASD with opportunities for inclusion within a mainstream setting when appropriate;
· Access to staff with specialist knowledge and experience of planning and delivering educational programmes for children with ASD;
· Activities to develop his gross- and fine-motor skills;
· Activities to develop his attention and concentration spans across a range of activities;
· Activities to develop his expressive and receptive language;
· Activities to develop his social & communication skills;
· Access to advice for staff, monitoring and direct input as needed, from a speech and language therapist.
Note from mummy: I agree with most of what is written but because he was only with Alex for 2.5 hours, he hasn't seen all of Alex. Perhaps, this will help to get what we needed for Alex.
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Friday, February 08, 2008
I feel like a hypocrite.
Long ago ..... way before Alex was born, I find it difficult to understand why Mothers need 4x4 vehicles for school runs. I told Jeremy, I don't want a 4x4 even if I can afford one - they are gas-guzzlers and it's really bad for the environment.
I changed my mind since having driven the Toyota Highlander in Tallahassee last year. I now wanted a Toyota RAV4 for my next car. The reason for my change of mind is .... cars are getting bigger ... even a Mini is as tall as my car - a Ford Focus C-Max. I like a tall car, one I can drive with confidence and tall enough to see what is ahead way before a small car could. I like the way they are built - tough yet stylish. It has nothing to do with status but more for safety.
Isn't it a laugh? I am slapping myself on the cheek because I said I didn't want one before and craving for one now. The moral of the story is Never Say Never and we can't judge someone until we are in their shoes.
Despite what the environmentalist or the tree-huggers thinks, every parents wants safety for their children. Drivers on the road are getting more careless or violent and driving with your children in the car is getting more and more stressful.
If there's a car out there that isn't a 4x4 but built as tough as one and doesn't cost the earth, I will definetely be interested, but until then, I would like a Toyota RAV4 and in Maroon.
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Tuesday, February 05, 2008
It's my Nephew Joshua's Birthday today.
Hey Josh, just want to wish you a very H A P P Y B I R T H D A Y and hope you have a fantastic day.
Lots of love from Sar Ee (Third Auntie), Uncle Jeremy and your cousin Alex.
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Monday, February 04, 2008
Alex has a friend.
Jane, my friend from Family Support came today with her two and a half year old son Nicholas.
Nicholas has cerebral palsy and is a delightful boy. He has a wicked sense of humour and not to mention looks to go with it. He is a completely different boy today compared to the times that I saw him at the centre. He was always crying and Alex's afraid of him. I could understand why .... he is a very sensitive boy like Alex and they both dislike rowdy children. Most of the other children visiting the centre has behavioural problems (almost every other child) and it upsets them.
Anyway, when Alex saw Nicholas ..... he wasn't sure what to make of the situation and stayed as far away as he could. Then came lunch time, we had a quick bite in the dining room and then Alex asked to be excused. He went out playing alone .... then Nicholas joined him. They played along side initially and then while we were chatting away in the dining room, I heard them laughing. I peeped and saw them playing together and laughing. No word could describe how I feel and I am glad that my son has a friend.
Jane and I are planning to let the boys play together once every forthnight and see how their friendship develops.
By the way, it's my mum's 75th Birthday today. Happy Birthday MUM .... I love you and miss you so much.
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Saturday, February 02, 2008
Did I wish for this? I think I did!
Not so long ago, I wished that Alex would talk or attempt to - well, my wish came true and all I need now is book myself a day in the monastery. I need peace and quiet - just 24 hours - and I'll be happy!
It's "eh eh eh" all day. Asking me to narrate his every action and wanted me to tell a story while he act the story with his cars. I know it's a fantastic progress - imaginative play and I am so happy but 8 hours of this? I know I shouldn't be complaining but when you are lack of sleep and with a head cold, it is not the best thing that ever happened to you.
Anyway, he has two new words today. "Net" and "Neck".
While watching The Mickey Mouse Clubhouse this morning, he said "net" when a picture of a net appeared on the screen. He looked at me and said "net", I just say "Well done" but not make a big fuss. He was happy and of course, I was really proud of him. Then, later in the evening, he said "mama neck" and pointed at his neck. There's a rash on his neck and I asked if he is in pain and he said "hmmm" meaning yes.
He is making more noises, sound and repeat words (although not really accurate) more often lately and that's really a good progress. But, I do need some quiet time sometime .......
Be careful of what you wished for - for it may come true and .............
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Thursday, January 31, 2008
What's with YouTube?
I have been trying to upload a video of Alex onto YouTube to share with you but it just wouldn't want to know. I tried a few times last night and then again this morning - just have to try later.
Alex learned to hum the intro of "Eye of the Tiger" and it's just so funny.
Anyway, we had our third Early Bird course today and we thoroughly enjoyed it. I would definately recommend anyone whose child been diagnosed with ASD to attend the Early Bird. This will be more beneficial to parents in the early days of diagnosis. The course really give parents the confident to work with their child/children and to understand how, what and sometimes why things happen the way they do.
Alex was diagnosed in May 2007 just after one of the Early Bird courses started. We had to wait until September for a new course to begin but there weren't enough families to start a new class. So, from September was delayed to November and then finally a confirmed date in January 2008.
While waiting for the course to start, Christina Watson one of the Early Bird trainers gave me many tips to work with Alex. That helped quite a bit and I know she wanted to tell me more but she knew I would not benefit from the course if she said too much.
Back to Early Birds, I have been practicing most of the things discussed in the first three weeks for sometime and I knew it worked. All these were either read from various books, research from the internet or tips from Christina. It seemed like a long time ago since the diagnosis and because of the knowledge we acquired from various sources, our life with Alex improved tremendously. Nevertheless, we enjoyed the last three weeks of the course and look forward to the rest.
Note to parents with children recently diagnosed with ASD:
It's not an easy thing to accept that your child is autistic but through our experience and the joy Alex gave us, I wouldn't want it any other way. You may feel sad and you are allowed to be down BUT pick yourself up as soon as you can because your child needs you.
There are three things that we have to remember:
START Accepting (Accept that there are no cure for ASD, accept all the help you can get because we cannot do it all alone);
STOP Expecting (Don't expect too much from your child. The lower your expectation, the more you get out of your child. When he's able to do the things you want him to, it gives you extreme joy)
START Believing (Have faith and believe that the days ahead will be better)
At Early Birds, we are able to share our experiences, what works for one might work for you. If it doesn't, there are always other ways to explore. The possibilities are unlimited.
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Monday, January 28, 2008
I read an article in New York Times today and found that children have an average of 6 to 10 colds a year.
Well, that put my mind to rest as I always thought it's a bit odd that Alex gets the cold so often. I thought I had a "sickly child" - ha ha ha.
I organised a play date for Alex with a friend next week and hope he'll be well by then. It's hard to organise play dates for him. Some mothers do not have such problems and seem to organise play dates for their children all the time. Alex gets invited a few times but I had to decline as he wasn't well.
To be courteous, I wouldn't like to give anyone Alex's cold.
It's hard to decide what is the right thing to do? Be sociable and then be despised because you give their children the cold or being courteous and no one knows you're alive?
Life is full of decisions and doing the right thing doesn't always do you any favour but then again, I cannot live with the consequences of making the wrong decision.
What would other mum's do? Am I thinking too much?
Here's the article I read in NY Times: http://www.nytimes.com/2007/09/29/health/29fda.html
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Saturday, January 26, 2008
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Wednesday, January 23, 2008
There's a hole in my cake.
Alex is getting funnier every day. You can't help but admire his intelligence (ha ha ha).
I baked a cake today.
Alex loves my cakes and he waited patiently for the cake to cool. He kept pointing at the cake and say "err?" and I will say "you have to wait until the cake cool down". He will walk out of the kitchen and two minutes later, asking the same question again. This continued for at least 5 times.
Dinner's almost ready and I told him to wait until after dinner. He spotted the dinner candle on the window and asked me to give it to him. I thought he wanted to play with it and I gave it to him. He then look at me and pointed at the cake, then he looked at the candle and said "err?" I laughed and told him it's not a birthday cake and I will bake one for him next month for his birthday. He walked out of the kitchen with the candle.
While waiting for dinner to get ready, I went out to sit in the lounge watching a little TV. Then, I heard "Oh my god! There's a hole in the cake". I ran to the kitchen and there it was, a hole in the cake. Alex, still holding the candle gave me a smile.
It's just so funny. I had to give him a hug and just so proud of him.
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Sunday, January 20, 2008
Boing Boing Boing ....
We took Alex to our local Sports Centre for trampolining today. He loved it and seemed to enjoy every minute of it. It was organised by East Berkshire Autistic Support Group and today was just a trial for Alex. The best part of it all was - he could do whatever he wanted - jumping or running or even screaming his lungs off. He liked hearing his own echoes when he screamed.
Did you know that ...... trampolining is a sports and is an event in the Olympics? I did not know this until today when the coach told me. There goes, learned something new today ;-)
It's still early days but if Alex really like this, we will encourage him to be trained properly. Who knows .... he may have talent in this like his cousin Joshua in Gymnastics.
I want Alex to have what I don't as a child but I don't want to be a "pushy mummy" either. It is quite difficult to draw a line as we may sometimes want to live our dreams in our children. I am never passionate about anything and can't say that I have a favourite subject. I really believe that if you start young and get support from you parents, you are more likely to stick to one thing you are good at for life.
We didn't really have the opportunity and support to pursue our dreams because there were too many of us. My mum told me once that she wished she had the means to give us lessons in Ballet, piano or violin. It's hard when you have five children to feed, roof over their head and all the other adult problems as well.
Despite not having ballet lessons or able to play a music instrument, we all turned out all right (I think). I can say for sure that my siblings turned out to be great parents and want the best for their children.
As for me ..... I think I am doing my best and hope that Alex knows that mummy loves him very much.
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Thursday, January 17, 2008
"I wished I could live in Alex's world for 24 hours" said Jeremy as we came out of the children centre.
It's D-Day, our first Early Bird Programme - a two and a half hour session of introductions. At the beginning of the session, we were told to keep everything we discussed in the programme to ourselves. There are six families including ourselves in the programme and we will be discussing and sharing information about our children. Some parents would prefer to have their children's condition kept private and you are right, I am not one of them (ha ha ha).
I guess writing a blog about Alex and my personal relationships will not qualify me as a private person. But I respect other's wish for privacy and I will not discuss their problem directly in my blog.
We started introducing ourselves and our children. We were each given one minute to talk about our children, followed by a two minute video of our children playing with us (Sam, the organiser came by our house last week to film us playing with Alex). There were four girls and two boys in our group which was quite unusual as Autism affect more boys than girls. The ages are quite equal with 3 three year-old and 3 four year-old. Five of them are already talking quite fluently and one not talking .... hmmmm Alex.
After all the introduction by parents, I thought to myself ..... my god, we are the luckiest among us. Most of their children have terrible tantrums and outbursts (some go on for hours), Alex hardly ever and even if he does, it's for very good reason and for 30 seconds tops. Some of them only eat certain food and had to be cooked or prepared in a certain way - Alex would eat anything. Some cannot tolerate labels on their clothing and only wears cotton - Alex can't be bothered. One has "leaky gut" but since she changed her diet to gluten and casein free, problem solved. Two could talk for hours non-stop and driving their mums crazy. One is violent towards her sibling and another has an obsession with helicopters.
There are of course some good things too. One 4 year old can read anything from newspapers to supermarket posters and food label. She can't always understand what she is reading and use words in the wrong context which is quite embarrassing for the mum. Another one could complete a 70 piece jigsaw puzzle in minutes. Alex ..... could recognise all the logos that he has seen only once. He will know something is missing even if he only seen them once. He has impeccable memory.
Then, we talked about what autism is, the myth and facts, the triad of impairment etc. Things that I already know from reading and research. These things are new to Jeremy because he doesn't read much and he find this course beneficial - Good.
Towards the end, we were shown a video "A is for Autism", showing us what it's like in the mind of an autistic person. Their world is so full of information which they find it hard to digest - I could understand why they have sensory overload and zone out.
They see and perceive things differently, fascinated by opening and closing elevator doors, trains and tracks, counting, numbers and the list goes on and on. After watching the 11 minute long video, I just don't know what to think of it.
Sitting down hours later, writing this blog, I can still see the video in my mind and it's quite disturbing. There are so much going on in their mind - all at the same time? If this is what's happening in Alex's mind every minute of the day ................... sob
I don't know if this is Alex and I know every autistic individual is different, that's why it's called a spectrum.
If God ask me what is the one thing I could change about Alex? I would say, no thank you. I love him just the way he is. I am sure he is what he is for a reason and I know I will find out soon.
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Christine Hoh
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Labels: Early Bird
Tuesday, January 15, 2008
It's weird to be told that it's good that your child rebels.
I've always thought how lucky we were to have a "model child", one who doesn't whine and does whatever been told to.
Not lately though. Since his adjustments, he has been active (actively seeking us to play with him), talkative (repeat sounds that he heard us say), noisy (at precisely the moment you wanted to listen to the news), cheeky (playing tricks on us), nosy (wants to know everything and ask what, why and how), imaginative (his imaginative play is improving very quickly) and cunning (using tears to get what he wants).
Neel from TASS came today (the last time we saw her was a week before Christmas). She was really pleased to see the changes in Alex and especially impressed with his potty training success. We told her about Alex's recent changes in behavior and she said it's really good that he is making his own mind and knows what he wants. This is definitely a good change.
We also discussed a few things mainly about obtaining a Special Education Need Statement for Alex. She said we should push hard for Rainbow Resources if we feel strongly that Rainbow is the right place for Alex. If the panel agrees with our view, the Council will have to provide enough funding for Rainbow to start a new class in September 2008. That's good right?
Anyway, we were also told that the Area SENCO has temporarily stop Inclusion service on Wednesdays because Alex is having his SALT (Speech and Language Therapy) at nursery. The reason because it's costly to do both at the same time. I could see their point and it's also quite stressful for Alex when he has to do both on the first day back at nursery after a long weekend.
It costs the Council GBP 35.00 per child/session on SALT and on average, a child like Alex requires at least 5 sessions per term. Inclusion costs roughly the same and again around the same amount of sessions per term.
Neel will arrange a meeting with everyone involved with Alex including myself to discuss a new IEP (Individual Education Plan) for 2008.
Alex achieved almost all the targets created for year 2007 - able to feed himself, drinking from open cup and potty training. I must say that credit must be given to those working in Teddies as well. Alex gained a lot from going to nursery and they are really good when it comes to working with parents.
Looking back, it was an uphill struggle when I first started blogging. Potty training was the main dilemma, then came the diagnosis, after that - the acceptance and finally changing our thinking made a huge difference in Alex.
I felt so much lighter now ...... not because I lost weight due to running around after him asking if he needs to pee every so often but because my son is able to do things for himself. To me, potty training is the final milestone to achieve ...... I know, it's a long way to go .... still. But each achievement is like a piece of the puzzle - completing the big picture.
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Christine Hoh
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Saturday, January 12, 2008
Well, this is the last time I will write about poo and pee ;-)
Alex is officially potty trained. Dry during the day and will tell us when he wants to go.
No more Pampers yeah!
Potty trained in one week - not bad at all.
While filling in Alex's school admission application form two weeks ago, I was so worried that he would still be in nappy by the time he starts Reception class in 2009. Maybe this is one of the reasons that I am determined to get him trained.
I can hear the cash register sound in my head again ..... Ker Ching ...... the amount we save on nappies. I think I will use the money we save on music lesson for Alex.
I know he loves music but I am not sure which instrument would be easier for him to start with. I personally like piano or violin, but piano requires strong fingers. Alex may find it difficult because his fine motor movements are quite weak.
It's just a thought.
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Christine Hoh
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9:40 pm
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Labels: A new achievement
Friday, January 11, 2008
My sleeping Prince.
Alex had three adjustments so far and I can definitely see improvement in his sleeping pattern. He has been sleeping through the night since early this week. Going to bed at 7:00pm and waking around 6:00am to 7:00am.
He is also more social and emotional. He will say hello or bye without being prompted where previously, we had to ask him to. Only recently, he will cry when we say "No" to him and try to play the emotional card whereas, he would just accept a "no" in the past.
His imaginative play also improved (I bought him a set of toy toaster with teapot, cups, saucers and spoons) - he will put the cup to his mouth and pretend to drink. He will also stir with spoon as if he is mixing the drink. When I ask him for toast, he will take it out of the toaster and put it on a plate for me. He will also play more with his other toys instead of displaying them in rows.
Yesterday, when Alex had his third adjustment, Caroline told me that his neck now feels normal compared to when she first saw him. She will need to work on other areas now and we booked another two appointments for next week.
I am so grateful to her and I know she really wanted to help.
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Christine Hoh
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9:37 pm
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Labels: Chiropractic and Autism
I would NEVER have thought I'll do this.
I bought a child toilet seat (one of those that you fit on a standard toilet) yesterday from Mothercare. The reason behind ..... hygiene. I would never sit on public toilets unless I am really desperate for a number two. Even then, I would take time to lay at least two layers of toilet paper to cover the entire seat. I can't put my son on a dirty seat every time he needs to go?
Alex has been really good when we go out - he would tell me when he needed to go and even if he doesn't, I will ask him and take him to the toilet to avoid an accident. Buying the seat make so much sense and at the least, I know for sure that he is not sitting on a dirty toilet.
We started using the seat today and I can definitely say it's money well spent.
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Christine Hoh
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9:21 pm
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Labels: Potty Training
Thursday, January 10, 2008
This was sent to me by Alex's Chiropractor, Caroline.
http://www.icpa4kids.org/research/chiropractic/autism.htm
Case studies on children diagnosed with various conditions including Autism, ADHD, Asthma, learning disabilities and even Tourette Syndrome benefiting from Chiropractic.
Alex has two adjustments to date and according to Caroline during his last visit on Monday, there were improvements to his neck and back.
He went to bed at 7:00pm last night and slept through the night until 6:00am this morning. This is definitely an improvement because in the past, he would wake at about 11:00pm and then play for 3 hours before he goes back to sleep.
Alex did well with his potty training. Do you think there's a relation to the adjustments? I would say there are possibilities but time will tell.
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Christine Hoh
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7:14 am
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Labels: Chiropractic and Autism
Wednesday, January 09, 2008
Check this out
http://users.telenet.be/leukelinks/flash/queen.htm
Cute!
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Christine Hoh
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6:06 pm
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Day 5 of Potty Training
Dry all day ....... yippee!
It's a busy day for Alex today. Woke up at 7:00am and then breakfast, get dressed and straight to nursery by 8:30am.
Today is the first day of Speech and Language Therapy at nursery. Angie worked with him for 20 minutes and then had a long chat with me after that. She was really impressed with his development.
We discussed if we should continue with PECS (Picture Exchange Communication System) and I told her that we don't really need that because Alex is communicating fine with us. His problem is with speech and sound. She decided that we will try Jolly Phonics with him next week and Catherine, his key carer will also work with him once a week on the same. Catherine was really surprised by the level of understanding that Alex has. Of course I was not surprised because he has been doing it will us at home for some time.
Wednesday is definitely a busy day for this little boy. SALT (Speech and Language Therapy) and then Inclusion with Amanda followed by exercise class.
After nursery, I toke him to town centre for lunch at Burger King while waiting for our next appointment to see Rebecca for SALT Assessment. She spent roughly about 20 minutes with us and asking Alex standard questions from a book to assess his level of understanding. Alex was not paying attention most of the time but when prompted to pay concentrate he did better.
Base on his score, he is at the level of 30 to 42 months (2.5 to 3.5 years) but because we knew it was a long day for him and that he wasn't concentrating like he should, he would be at the level of 4 years to 4.5 years - that is very very good. He knows the meaning of heavy, heavier and heaviest which impresses Rebecca. Alex is turning four next month and this meant that his level of understanding surpassed his age.
While still at the SALT centre, Alex wanted to poo and I took him to the toilet but because the toilet was way bigger than him, he can't do it comfortably. Then I told him to hold until we get home.
As soon as we got home (15 minutes later), he ran upstairs to the toilet and I helped him with his pants.
He did it!
He was so happy that he did it and loved every minute of the praise I gave him.
Well done Alex! Mummy love you so much.
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Christine Hoh
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4:27 pm
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Labels: Potty Training, Speech and Language
Tuesday, January 08, 2008
Someone commented that my recent blog is full of crap and pee.
Well, he is right and here's another lot of poo until Alex is potty trained.
It's Day 4 of Potty Training - he has been dry all day today and even asked to go to the toilet. I am so proud of him and there isn't a word in the dictionary to describe my feeling at the moment.
There is however, a little surprise in the shower for Jeremy this evening. I put Alex on the loo and asked him to poo but he pointed at the shower cubicle and asked for a "Baah" meaning shower. I said "you have to poo or pee before you can have your baah". He immediately did a pee and then climbed off the toilet and went straight into the shower. I had to go downstairs for a drink as I haven't had one for the last three hours and asked Jeremy to shampoo him. The minute he opened the shower door, he screamed "Oh My God! Oh Alexxxx ......" I ran upstairs and see what the commotion is about and there it was, a blob of poo in the shower cubicle.
I was quite calm about the whole thing and told Alex that he cannot do it in the shower and only to do it on the toilet next time. I think he understood what I said but I wasn't sure. We'll just have to find out later.
Potty training is definitely about timing and also to consider the mental age of the child. A year ago, when Alex was turning three - that's when I started blogging, he wasn't ready for it. We gave up in the end and never really got back on track.
Because of his developmental delay, he is currently at the mental age of 18 to 22 months. For a neuro-typical child, this is the right age to potty train. Although it's hard work for the first two days of the training, I am not as stressed as the last time. Carrying him up and down put quite a bit of pressure on my back but I persevered. I think I am reaping the benefit now as he has been dried all day.
For those readers who have a special need child, don't give up because you will be so happy when you finally succeed.
Posted by
Christine Hoh
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5:07 pm
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Labels: Potty Training
Sunday, January 06, 2008
Kaboom and Plop!
What an explosive day! ha ha ha
I saw him standing real still and asked if he wanted to pee, the usual "No" was the answer but I knew well that he needed to do something, scooped him up real fast and ran him up the loo.
As soon as he sat on the toilet, he had a grimace on his face ..... and then the loud explosion, a smell and then a plop.
Ker Ching ..... felt like I just won the Jackpot. Expecting a number one but I got a number one and two at the same time .... ha ha ha
You should see the sight of relief on his face .... he was not expecting this himself but he felt good doing it out of the nappy.
He had a few accidents throughout the day though when I was busy doing other things, just didn't catch him on time. I felt like a paranoid mum most of the time but I supposed most mum's gone through the same.
You won't appreciate your mum until you are one yourself. Think of those times when she had to clean after every accidents, every puke, everything that you cannot imagine yourself doing. My mum ? Multiply that by Five.
Well, mum .... thanks for everything.
Posted by
Christine Hoh
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11:37 pm
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Labels: Potty Training
Saturday, January 05, 2008
It's exhausting!
It's Day One of Alex's proper potty training today. The first half day, I had to monitor him every 15 minutes, checked his (you know what) to see if he needed to pee. I asked him but he will always say "No" in defiance but as soon as I put him on the toilet, he peed. He's getting quite good at it except the "Mummy, I need to pee" part. He wouldn't tell me that he wanted to go .....
The second half of the day is every 30 minutes. He has been so used to doing it a little at a time in his nappy, it takes time to adjust to the idea that he can do it all at once and not so frequent.
I hope tomorrow will be easier. I could feel my body aching going up and down, in and out of the toilet all day. Lets hope he gets the idea real soon and potty trained by the end of the month.
He had his first Chiropractic treatment yesterday. He went to bed early at about 7:00pm and then woke at 11:00pm - played a bit and then back to sleep at 1:30am. Woke up at 7:30am this morning and was ultra talkative, making a lot of noises and singing all morning. I am not sure if these are due to the treatment or he has been doing it all along and I only noticed this today, because I am making a record of his progress.
One thing I noticed was that he's less tensed. In the past, when I carry him upstairs (when he fell asleep on my lap), he would go all tensed and his body will stretch so long that it's hard to carry him. But, last night was different ..... he was so relaxed and it's much easier to carry him.
His next treatment is on Tuesday next week and I will also be getting a free assessment from Caroline. I have been having backache and neck ache for sometime but like most mums, I don't complain and get on with things ignoring the pain. I should get it checked out and be sure it's nothing serious.
I don't want to wake up one day and find out that it's incurable because I didn't do anything about it earlier. When the body aches or you feel pain, it's a sign that something is not right with your body.
Next week onwards, we will all be very busy because of the long awaited "NAS Early Bird Programme". Jeremy and I will be attending this every week until April.
Alex's Speech and Language Therapy at nursery (I arranged this earlier with Angie, so that his carers at the nursery could attend and practice with him) and Assessments from different departments for Special Education Need statementing will all be happening in the same week.
On top of that, he has Chiropractic treatment twice a week, potty training ..... my oh my ....... my diary is so full, I just don't know what else I can fit in.
One word sums up the first quarter of 2008 ...... EXHAUSTION!
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Christine Hoh
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8:17 pm
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Labels: Potty Training
Thursday, January 03, 2008
Alex received his first party invitation today.
I am quite excited for Alex but worry at the same time. He hasn't been to a party before and I do not know what to expect. I can't leave him there and then pick him up later like most mums do - I think. I guess, we'll just have to find out ourselves - there's always a first time.
I called Joseph's mum to RSVP and said we will see her then.
The weather's turned really cold. It's snowing heavily in Scotland and some part of England too. No sign of snow in Bracknell but the wind factor brings the brrrrrrrrrrr out of me. I found myself hugging my duvet all day even with the heating on.
To make things worse, heating our home will be even more expensive in 2008 because of the oil prices - it was announced in the news today that raw oil prices has reached the USD 100 per barrel mark. One major energy provider NPOWER announced their intention to raise energy prices but have not reached an agreement as to how much they intended to raise. Some experts estimated a 15% increase. Not good!
There are of course some good news too - for consumer that is ...... Consumer Electrical Group DSG Retail Ltd who owns Dixon, Currys and PC World announced a poor sales performance during the Christmas season - this means, there's gonna be a BIG sale soon. Well, it makes no difference to me as we have everything we need at the moment.
It's nice to know that I am still in touch with the world - I don't want to be one of those stay at home mums that are too busy to stay in touch with the outside world. I want to be able to have a clever conversation with people when we get invited somewhere.
Alex is starting his Chiropractic treatment tomorrow afternoon and I will need to make notes of the changes and improvements.
Watch this space.
Posted by
Christine Hoh
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7:04 pm
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Tuesday, January 01, 2008
You know it would be a good year with a start like this.
Alex peed in the toilet today - make that twice. Yeah .......
I was thinking of starting potty training again sometime next week but today's achievement is by chance. I was changing his nappy when I saw that he may need to pee, I asked him "Alex, do you want to pee?" he said "hmmm hmmm" meaning yes, so I put him on the toilet and he did his business. Wow, I was so excited that I called Jeremy at work to tell him. The ever practical Jeremy started to count the amount of money we will save without nappy.
Later, after he woke from his nap, I asked him again if he wanted to pee and again he said yes. I put him on the loo and he did it again. Twice! Yessssssssssss..........
What a happy new year!
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Christine Hoh
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10:43 pm
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Labels: Pee in the pot