An interesting article arrived on my doorstep this morning and thought I'll share with you.
What works? with individuals with Autistic Spectrum Disorders by Geoff Evans
http://www.optionsgroup.co.uk/pdfs/Options_Inst_Info_Sheet_3.pdf
I have created a new blog about NAS EarlyBird Programme. This blog is to share what we learned from the programme. The contents are from Parent Book and I will also elaborate further and include some tips from what we've done with Alex.
Dear Diary is about our day to day life and EarlyBirds - our experience is all about the course and hopefully will benefit those with interest in this topic.
I know for a fact that when Alex was first diagnosed, I was searching high and low for tips to work with Alex and all I found were information about what autism is, changing of diet but nothing about behaviour and helping our child to gain independence.
I don't know if I have helped anyone reading my blog but if it's just one person I helped, I have done my job.
To go to EarlyBirds - our experience, follow link from the left hand bar
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.
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.
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?
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.
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 .....
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.
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.
These were taken this morning and Boy ..... it's hard to take a decent photo of Alex lately. He'll try anything to not having his photo taken. Thanks to multi-shot on my camera, I managed to take a few nice ones. 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
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.
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.
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.
