Walking with Imaan

Stephen Wiltshire - the autistic genius

noreply@blogger.com (Baba, Mama and Sis) — Thu, 04 Mar 2010 15:46:00 +0000

While going through the Times supplement on Friday 26th of February, I read this piece about autistic artist Stephen Wiltshire and became engrossed in the story.

Stephen has become famous for drawing amazing detailed cityscapes from memory. The pictures are amazing and we will definitely visit his gallery in Pall Mall, London next time we visit there.

Check out the video clip below of him drawing the Tokyo cityscape from memory after a helicopter ride.

You can still get his book 'The cities' which is now out of print on Amazon. Another book "Floating Cities" was on the Sunday Times bestseller list.

Changed title of the blog

noreply@blogger.com (Baba, Mama and Sis) — Fri, 26 Feb 2010 10:21:00 +0000

My wife commented that the blog title was really boring and that we need to be creative in everything we do when we comes to our son. In other words we have to think outside the box. We can't be normal, we are not the typical normal family anyway.

Changing the title is a small step in this direction I guess - and more appropriate as we are walking with our son - small steps at a time.

Brother and sister

noreply@blogger.com (Baba, Mama and Sis) — Mon, 22 Feb 2010 18:18:00 +0000

I am really happy that my son has a really good bond with his sister. He now plays with her a lot instead of alongside her.

We have been trying to explain Imaan's condition to her and she has a lot of questions. She sometimes say "Imaan does not love me even though I love him" and we have to tell her to be patient. That Imaan does love her but doesn't know how to express it.

Here's a great clip of both of them playing. Our daughter noticed that we were copying Imaan's actions and she decided to join in as well with great success:

There was really good eye contact there before he ran away.

ABA Vs Son-Rise Programme

noreply@blogger.com (Baba, Mama and Sis) — Sat, 06 Feb 2010 00:52:00 +0000

Noticed this video clip on the Autism Center of America's blog. An intense debate going on there.

Really interesting.

Son-Rise Start-Up London: Final Day

noreply@blogger.com (Baba, Mama and Sis) — Sat, 06 Feb 2010 00:16:00 +0000

I finally got the chance to update my blog. This week has been a whirlwind of sleepless nights as I struggled to clear my backlog of work that had accumulated during the past week we were in London for the Son-Rise Start-up.

Anyway, the final day of the programme was about sharing, Q&As and a round up of what we had learnt.

Top on the list of learnings from the course for me was the change in attitude. Not to be sorry. Try to be genuinely happy and not to be affected by the situation. When ever I am faced with a situation which is not going my way, I remember William and the question "So what?" and try to remain positive, though that can be hard sometimes.

There was one session where we had to write a letter to our children, pouring out our hearts to them. It was a very emotional. I tried my best to hold it but in the end the tears just ran down my face without me even realising it.

I didn't want to share my letter to Imaan with the rest because I was afraid that the tears would start falling and it did when I listened to the other parents. Here is what I wrote:

Dear Imaan,

You have changed our live in such a beautiful way. Your smiles and laughter makes my day come alive after a hard day's work. We are so lucky to have you. Otherwise our lives would have been so different - so boring.

It has changed me for the better. I have become a better man - a real man. Now, I see the World is such a beautiful place.

You are so innocent and I am sure that you will remain your beautiful self forever. I love you so much and we will face the future together.

I wanted to end here but the words don't stop. There is so much I want to say. I can't wait for you to talk back.

I was sad and felt hopeless. Now I am a different man. I am optimistic and have bright hopes for the future. I see you as a blessing in our lives. You have made it so much richer, so much more beautiful. I can't wait to get back and get a glance from you - a smile from you.

Love,
Baba

We made loads of friends and am still in contact with several of them. The volunteers were great and we received loads of valuable advice.

Some people emailed me asking how much the whole programme cost us. Actually 80% of the total cost ($2500) was funded by Caudwell Children. That seems like a lot of money - in fact it is a lot of money and we might not have attended the programme if we hadn't received the scholarship but it was worth every penny.

The guys from Caudwell were there as well and they received a standing ovation - they deserve it.

Son-Rise Start-Up: Next 3 days highlights

noreply@blogger.com (Baba, Mama and Sis) — Fri, 29 Jan 2010 00:19:00 +0000

I can't believe it but tomorrow is the last day of the Son-Rise Start-Up programme in London. We have made several new friends. One of the thing we realised in the past 4 days is that even though all of us have autistic kids with their unique characteristics, many of us share so many similar experiences and issues. For example, Bryn (or was it Michael) mentioned something about our kids going over and suddenly taking food from stranger's plates in restaurants - something that we have experienced a couple of times, and we saw several couples looking and smiling at each other.

The second day we found out what it was like to have stims or "Isms" as the guys from Son-Rise put it. A lot of people thought it was comforting, relaxing, one lady said that it made her headache go away, I thought it was hypnotic.

The Third day I missed the morning session because I had a seminar in the University but my wife was around. I later joined her after lunch and we talked about changing our attitudes - to be unrealistic, optimistic about our kids. We discussed what we would things we would most like to achieve with our children in the next 6 months. Also helpful were the suggestions and comments from other parents about the stuff we gave the lowest points - ones which we felt would be difficult to achieve.

Just realised that as I write this, it's past midnight and now the last day. Yesterday was about getting volunteers to help us carry out the Son-Rise programme - an idea that I was not really comfortable with. I mean, how do I get people to come over to our house and spend time interacting and trying to interact with our children. Now, I have some ideas how to go about it.

Looking forward to the last day of the Start-up programme here in London.

First day at Son-Rise Start-Up programme in London

noreply@blogger.com (Baba, Mama and Sis) — Mon, 25 Jan 2010 23:10:00 +0000

Took the train from Greenwich to London Bridge in the morning - supposed to reach around 9:40am.The registrations were until 10am. However, we got lost somehow even though my wife had been at the venue before. Was halfway across the London bridge when my wife decided to ask someone and we realised that we were going in the wrong direction and further away. Finally reached the venue - Glaziers hall a few minutes lat , wet and cold. Bryn had already started and we sat in the back.

What followed was several hours long inspiring and thought provoking lectures from Bryn and her husband, William, with a short lunch break in between.

One of the things I realised was how difficult it was for us to loosen up - to express our excitement. I guess a few years of stress does that to everybody. It did feel good to be able to act weird with more than 100 other people. How were we supposed to get our son to open up to us when we were getting more and more frigid day by day? Really thankful to Bryn and William for opening our eyes.

On the way back my wife and I was discussing how we needed to change - the way we interacted and behaved with the kids, with each other and in fact our whole outlook on life. On the need to be more positive, optimistic and supportive.

Definitely looking forward to day two as well as three, four and five of the programme.

About the search for an "Autism drug"

noreply@blogger.com (Baba, Mama and Sis) — Tue, 19 Jan 2010 01:48:00 +0000

Read this article titled "The Hunt for an Autism Drug" in the online version of BusinessWeek.

This hope this results in a change in the thinking of health care professionals - I mean I hope they see autism as soemthign that can be treated and cured and not something we "just have accept and to live with".

I now believe in biomedical intervention after seeing the positive changes in my son as well as in other autistic children (based on evidence posted by other parents).

One part which I really found interesting was "President Barack Obama allocated $60 million of stimulus funds to the autism research pool and earmarked $1 billion for studies extending through 2018". Does show that the US Government thinks that this is an area of concern. I wonder whether Gordon Brown or his colleagues are thinking about this epidemic as well.

Toileting achievement

noreply@blogger.com (Baba, Mama and Sis) — Sun, 17 Jan 2010 17:22:00 +0000

Something amazing happened today. We have been trying to toilet train our son for quite sometime without much success. The problem is that he doesn't communicate when he wants to go.

What we do is take him to the toilet at regular intervals and when we see some signs - like when he rushes upstairs.

However today we had a breakthrough. He was with his mother in the bedroom when he suddenly said Poo Poo. My wife called me to take him to the toilet. When I got upstairs I found out that he was already on the toilet set with his pants off (he took it off by himself) and doing his business. When it was done he had a really pleased look on his face and clapped his hands in glee. I clapped as well and praised him and kissed him.

It's an amazing feeling. Hope he continues doing it from now on.

MMR Conspiracy

noreply@blogger.com (Baba, Mama and Sis) — Tue, 12 Jan 2010 13:59:00 +0000

Please listen to the parents.

Caudwell Children's funding

noreply@blogger.com (Baba, Mama and Sis) — Wed, 06 Jan 2010 02:53:00 +0000

We are over the moon. Really happy to learn that our application for Scholarship to Chaudwell Children was successful. This was for The Son-Rise Program Start Up which is going to be held in London from January 26th - 30th, 2009. We still had to fork up £516 but we are trying to think positive. That means that both of us will be able to attend the programme.

Another good news is that my sister-in-law in London has agreed to look after the kids during the day, while we attend the programme.

Enhanced sensory problems

noreply@blogger.com (Baba, Mama and Sis) — Sun, 20 Dec 2009 23:20:00 +0000

Of late our son seems to have suddenly developed an increased awareness of his surroundings. In fact I was so happy to see him happily playing with his elder sister in the bedroom today. Unfortunately, there is an obvious negative side to this development - he now has enhanced sensory problems as well.

I took him and his sister to the Tesco Arena today morning and as soon as we got out of the car, he wanted to be hugged. I put him on a shopping trolley and he was fine until we entered the store. As expected there were loads of people doing their Christmas shopping and my son went into shut down mode. He closed his eyes and put his head on the trolley handle and he actually fell asleep on the trolley like that. I guess I should be glad that he didn't throw a tantrum and that was his way of dealing with all the noise and other sensations that we take for normal.

Councils closing special schools

noreply@blogger.com (Baba, Mama and Sis) — Sun, 20 Dec 2009 23:12:00 +0000

All over the UK, parents are reporting that local councils are closing special schools and pushing the children into mainstream schools. I am all for this move if it means that the mainstream schools would get more funding, more training for staff and other facilities for special children but unfortunately it does not.

Our son starts reception next year and the deadline to fill up our choice of school is fast approaching.

I was reading this article in the Guardian 'I came to see the school as a little corner of paradise' and the writer writes about one special school:

"I came to see the school as a little corner of paradise. The head teacher was a saint whose first question was always, "What does this child need?" and not, "How much will it cost?"

We recently went to our daughter's school and met up with the head teacher. She was really nice but the message we got was that the school did not have the resources and the facilities to deal with autistic children even though they do have some kids. She kept on emphasising that "a special school would be ideal".

We would have liked to send him to the same school as his elder sister but changed our mind after the meeting with the head teacher.

We did talk to people from the Coventry Autism Support Services (CASS) but it's quite funny but they are not allowed to recommend any. We only want some suggestions as to which schools are more ASD friendly. Moreover, there seems to be no way we can find out from the Coventry city council site or any other site regarding the disability policies (including ASD) of the various schools in Coventry. The Ofsted reports doesn't really tell us anything about that aspect of schools.

I am wondering whether it would be a good idea to start a website where parents of autistic children can rate schools in their area with regards to their ASD friendliness.

Research shows difference of opinion between ordinary people and medical experts

noreply@blogger.com (Baba, Mama and Sis) — Fri, 11 Dec 2009 11:17:00 +0000

Findings of a recent joint research by Egenis, a research centre at the University of Exeter, and the department of community based medicine at the University of Bristol, show that there is a real difference of opinion between ordinary people and medical experts.

Unlike (so called) experts who believe that the fast increase in number of kids diagonised as falling under ASD is "a result of changes in diagnostic practice", most people affected by autism believe that there is a real increase in the number of cases and that it is the result of effects of modern technologies and changing lifestyles.

The findings were published in the Journal Child: Care, Health and Development.

Read the report in Science Daily here.

Constipation

noreply@blogger.com (Baba, Mama and Sis) — Thu, 26 Nov 2009 00:10:00 +0000

We are now fully implementing a strict Gluten Free Casein Free (GFCF) diet. We also try to consume organic food most of the time. Of course, once our son is in the nursery. it's out of our control and organic food is perceived to be more expensive. We have also started the Scotson's therapy on our son.

However, he has been suffering from chronic constipation for about 2 weeks now. It's strange because he taking a lot more fibre now. Reading up on the net made us wonder whether this is part of what is called Yeast die-back effect.

We have been giving him a lot of water, coconut juice as well as soya milk. However, there seem to be no change. Last week I sent an email to Linda Scotson at the Advance institute and Lily, he daughter called me up yesterday. She recommended reducing the massages to 2 minutes with 1 minute breaks. She also recommended we try out OxyPowder - a colon cleanser. Coincidentally, my wife had already ordered OxyPowder before hand.

Trying it out now. No change so far.

Update:
The Oxypowder worked but after 2 days. He had loose motion for 2 days and we stopped the Oxypowder. He's passing motion normally now.

Toilet training woes

noreply@blogger.com (Baba, Mama and Sis) — Thu, 05 Nov 2009 00:08:00 +0000

It's been a while since we first started toilet training but we are still facing problems. At home we make sure that he goes to the toilet regularly and we look out for signs - he goes up the stairs or he stops and makes a strange face and so on. The problem is that he doesn't communicate that he wants to pee or poop and if we are not careful, he would have an accident.

I guess it's really difficult for him as he has to get used to three different settings - at home and two different nurseries. And I am not sure whether everyone is following the same routine leaving him thoroughly confused.

Yesterday, the key worker at one nursery and the outreach worker from other together decided he's not ready yet and to go back to wearing nappies. I don't really want to go back to wearing nappies again as of late, he's been doing so well. In fact he hasn't had a single accident the past few weeks. A word with the Deputy director of the autism services here revealed that she also felt that it would be a step backward.

I called the nurseries and told them that I want to continue with the toilet training. One agreed but the key worker at the other nursery gave some excuses saying that they are now having mixed sessions with reception class kids and that they don't have enough staff, blah, blah. I didn't want to be rude to someone taking care of my kids but I was thinking to myself - that every school has a minimum staff to children ratio and lack of staff is clearly not acceptable, more so as their nursery is a Sure Start nursery accountable to the local council. It is not like we are sending our son for free - we are paying £115 every week and I am really disappointed.

A bad night

noreply@blogger.com (Baba, Mama and Sis) — Fri, 23 Oct 2009 09:23:00 +0000

Yesterday, my son came back from nursery. The nursery report said that he had a good day, had been interacting with other kids and repeating some new words - marble, ball, etc.

Threw the usual short tantrum as soon as he entered the house - throwing himself down on the corridor an kicking his legs and crying. He does that regularly now and I wonder whether he releasing all the pent up frustration. He became cheerful again after a hug and a bottle of milk.

Had a bath with sodium bicarbonate later and fell asleep soon after that around 7pm.

At around 1am we changed his nappies and put some warm clothes on when he suddenly woke up. He was coughing and had a blocked nose. He said "nyok, nyok" his word for milk. Gave him milk and he wanted to be cuddle. Normally even if he wakes up at night, he would go back to sleep after a short cuddled but tonight was different. He simply refused to go back to sleep.

I gave him some Medised pain an fever relief sugar free as I suspected he was having a sore throat and for the blocked nose as well.

Started crying soon after we stopped responding to his various requests - carrying him, more milk, etc. and then he started crying and screaming. My wife rubbed some relaxation massage oil over his body and while doing so thought that his tummy felt blotted and gave a hollow sound when tapped. Maybe he had a stomach ache because of wind in his tummy or the wind was because of the crying, we have no idea. However, rubbing a special baby oil, my mum in law had bought from Malaysia seemed to help. He finally fell asleep in his mother's arms around 3 am in the morning.

Woke up quite early today and he was an angel again. While eating soya yoghurt he had good eye contact and said "more" when he wanted more.

Impact of Electro Magnetic Frequencies

noreply@blogger.com (Baba, Mama and Sis) — Wed, 21 Oct 2009 11:23:00 +0000

I have read about the harmful effects of Electro Magnetic Frequencies (EMFs) and while working with Consumers International (Asia Pacific Office) in Kuala Lumpur, as the information officer, we highlighted the potential dangers of radiation from mobile phone masts in our quarterly magazine.

However, it's a bit ironic because I am a gadget freak and had wifi on 24 hours of the day in my house. I have gadgets all over the house.

Have started paying more attending to emf recently because of my son. Yes! We have had to re-examine our life from all perspectives ever since our son was diagonised with ASD.

Have been doing a lot of research and have heard of people who benefited form reducing the overall emf around their house. Of course, it is impossible to run away from it, for example, even if I turn off my Wifi router, I can detect around 7 networks around some with excellent signals.

Without me knowing, my wife and bought a Geomack E9001 Energetic Vitaliser - Protector (Max) from an online seller called TopGadget for £343.47. In the end it came to £394.99 with VAT and free delivery (next day). Much cheaper than elsewhere else (it's £467.00 on Amazon and £397.00 + P&P: £19.00 per unit on the Geomack site).

Lilias Ahmeira recommends the Memon devices but they are so damn costly and my wife settled with the Geomack.

How's does it work?

Well this is what the website has to say:

"The products interact with the natural electromagnetic fields eminating from the earth and create a charging energetic field that has the following characteristics: it boosts the energy levels of the inhabitants of the relevant property and this vitalising field also neutralises the harmful effects of natural electromagnetic radiation – Geopathic Stress (GS)- which has become distorted by other electromagnetic fields such as underground running water, underground cavities, certain mineral concentrations or power cables. Also the energetic field emitted by the products very efficiently combats the effects of man-made Electromagnetic Pollution (also called Electro Sress) caused by, amongst others, electrical appliances, pylons, substations, mobile phone masts, computer equipment, mobile phones and DECT cordless phones. A draining environment becomes revitalised."

My wife bought it after reading the positive reviews from other users. I was sceptical at first but she had a good argument. Rather than buying a Gucci or Prada handbag she would prefer to buy something that probably benefits the whole family especially our son (and maybe the neighbours) for a long long time.

Lilias Ahmeira speaks on Autism, Lymes and Electromagnetic Frequencies

Part 1.

Part 2.

Part 3.

Part 4.

Coconut electrolyte

noreply@blogger.com (Baba, Mama and Sis) — Mon, 19 Oct 2009 00:17:00 +0000

After reading that putting Autistic children on an electrolyte solution may help with their digestion, we went ahead and did some research to find a natural electrolyte. While searching on the net, we somehow landed on the Thriiive summit website. The summit was held in September this year and one of the issues they talked about was dehydration in autistic kids.

I found some electrolyte recipes, and one using green Coconut water particularly appealed to me because I love it. It may actually be one of the best choices for an electrolyte because of the presence of various nutrients.

We also learnt that an electrolyte drink is important when undergoing a detox programme.

Anyway, we found this brand called Zico and bought 5 cases containing 12 packs of 330ml each from a company called Live Longer and Healthier.co.uk. It cost us a total of £89.99. I think it's worth it for 60 packs of pure coconut water.

Aggressive behaviour - Is Glutamine responsible?

noreply@blogger.com (Baba, Mama and Sis) — Sat, 17 Oct 2009 21:56:00 +0000

After making tremendous progress we noticed that our son has become quite aggressive and his nursery has reported an increase in cases of hair pulling (other kids') as well. He suddenly seems to be getting sensitive to noise and other stimulations. For example, he was closing his eyes when we went outside. Whenever he got back from school, he would roll on the floor and cry. Getting him to pee in the toilet also became really difficult.

You can imagine how worried we were at these signs of regression.

We were wondering whether any of the supplements has caused the sudden change in behaviour. Our prime suspect was the BioCare MindLinx Glutamine with Probiotic bacteria food supplement.

We has done some research and it seems that Glutamine is bad for people with ASD.

According to Dr. Russell Blaylock, people with autism and/ or ADHD should avoid glutamine even for short term.(source)

Patrick Holford, the nutritionist has also added that glutamine may be contra-indicated with children with ASD. "

"Digestive enzymes provide assistance by helping to break down food making the nutrients more available for absorption and relieving the strain on the digestive system while it recovers. The amino acid glutamine is an important gut healing nutrient but may be contraindicated in autism because some autistics have protein deamination problems leading to production of ammonia which doesn’t mix well with glutamine. (source: Food for the brain)

There are feedback from parents as well:

"Within 30 minutes of taking the supplement, his behaviour changed beyond recognition. His stammer almost disappeared, his speech was clear, even his skin looked better. And after two months, that hasn't changed. The effects of serine worked on him MUCH better than Ritalin (Concerta), which we took him off. We tried adding glutamine, but he went OTT." (Source: http://www.asdfriendly.org/board/lofiversion/index.php/t6324.html).

Another one from the Another from Autism coach.com
"Glutamine: Glutamine enhances gut glutathione production. (Note from Autism Coach - glutamine can be problematic for some children within the autism spectrum.)".

Anyway, two days ago we decided to stop using the BioCare MindLinx supplement.

Our son is much calmer today, more aware of his surroundings and definitely has more eye contact. Maybe we started off with too high a dosage (half a tea spoon with his soya milk) but we don't want to take any chances. We have now ordered VSL3.

Till that arrives, the only probiotic he's going to get now is from his Alpro Yoghurt,

Epsom salt

noreply@blogger.com (Baba, Mama and Sis) — Thu, 15 Oct 2009 14:53:00 +0000

DHL just delivered a sack of epsom salt. We bought the sack (25 Kg) from a website called Just a soap for £36.77 (including VAT and delivery charges).

Epsom salt is the common name for magnesium sulfate. We bought this age old remedy for various ailments after reading about the beneficial effects of having baths with epsom salt on people with neurological conditions, including those in the autism spectrum.

In water, the salt is broken down into magnesium and sulfate and are absorbed into the body through the skin. Apparently, sulphate improves the body's detoxification process and also improves the uptake of nutrients. On the other hand, Magnesium, has a calming effect and important for the activity of enzymes in the body.

As far as I can tell, there are no adverse side effects of having epsom salt baths. It is not recommended for children with high blood pressure and/or kidney and/or heart problems. Drinking the water was reported to have a laxative effect.

House of Commons Public Accounts Committee report on autism

noreply@blogger.com (Baba, Mama and Sis) — Thu, 15 Oct 2009 10:24:00 +0000

The House of Commons Public Accounts Committee's report "Supporting people with autism through adulthood" identifies that GPs and primary care practitioners "do not currently have sufficient knowledge and awareness of autism". It's not surprising because my own father who's a pathologist, also indicated his lack of understanding of ASD. He only started researching autism after learning that his own grandson was diagonised with it.

The report also mentions that there are around "400,000 adults with autism in England, around half of whom have a learning disability (sometimes known as ‘low-functioning’ autism), while half do not (‘high-functioning’ autism, which includes Asperger Syndrome)".

I was shocked to learn that only around 15% of people with autism are in full-time employment. This reveals a that autistic people are being discriminated against and I am wondering whether it might be a better strategy if people with ASD did not reveal that they were autistic while searching for a job.

Read the full report here.

Some autism recovery clips

noreply@blogger.com (Baba, Mama and Sis) — Wed, 14 Oct 2009 12:26:00 +0000

I found some lips of interviews with parents and their kids who have made improvements and recovery from autism after various treatments. Most mention GFCF diet and chelation coupled with speech and language therapies.

Kale's story

Ethan's story

Grant's story

Madison's story

Baxter and Will's stories

Meeting up with Raun Kaufman

noreply@blogger.com (Baba, Mama and Sis) — Mon, 12 Oct 2009 23:26:00 +0000

My wife attended Raun Kaufman's lecture in London last weekend with her sister. She also had the chance to talk to Raun after the lecture and was quite surprised when he recommended biomedical interventions to go hand in hand with the Son-Rise programme.

She also got Raun to sign her copy of the book "Son-Rise: The Miracle Continues".

Autism is treatable

noreply@blogger.com (Baba, Mama and Sis) — Mon, 12 Oct 2009 11:09:00 +0000

Was reading this article today, which does give us a lot of hope for our son.

According to the results of The National Children's Health Survey in the US, it was found that "nearly 40% of households surveyed who had a child diagnosed with autism reported that their child did not currently have the condition".

However the bad news. The 2007 telephone survey of 78,000 households in the US reports that 1% of children (one in 100) now have the disorder. This is more than previous estimates.

What I would really like is a survey of those parents who say that their kids are now cured to find out what type of treatment they employed.

Read the Reuters report here