Journey with Imaan

Fast and slow rides

noreply@blogger.com (Dilip and Ez) — Sat, 04 Sep 2010 23:39:00 +0000

Sarah with Imaan in the playroom.

Big and small bubbles

noreply@blogger.com (Dilip and Ez) — Sat, 04 Sep 2010 23:31:00 +0000

Sarah with Imaan in the playroom - building on his motivation.

Helena with Imaan in the Playroom

noreply@blogger.com (Dilip and Ez) — Fri, 03 Sep 2010 01:13:00 +0000

Joining and connecting.

Session with Helena

ahoklah@gmail.com (Adam Dilip Mutum) — Thu, 02 Sep 2010 10:15:00 +0000

We were delighted when Sarah mentioned that a lady she knew was willing to volunteer with us. Of course we readily accepted and Helena came to visit us yesterday. Imaan takes quite a while to settle down with new people but we were pleasantly surprised that Imaan readily took to Helena. They were in the play room for around half and hour.

He also said her name "Helena! Helena!" quite clearly.

Helena has been volunteering with other Son-rise children as well and she is highly experience about the 3 E's (Energy, Excitement and Enthusiasm) and about joining (with Imaan's isms) as well.

We were also excited after learning that her MSc research looks at the Son-rise programmes carried about by various parents here in the UK. I am sure a lot of other parents and professionals are interested in her findings as well. Every time we see a professional (in autism), they will always point out that "there is no empirical proof" that the Son-Rise programme works ignoring the experiences of thousands of Son-Rise parents around the globe.

We wish Helena all the best in her research and hope to see her again soon.

If you are interested in volunteering, please visit our Volunteering page for more information.

A couple of minutes ago, we were rolling around with tears in our eyes laughing, listening to Imaan sing "Helena, Helena" to the tune of Jingle bells. Imaan can just be sooo funny!

Loving the playroom

ahoklah@gmail.com (Adam Dilip Mutum) — Tue, 31 Aug 2010 23:07:00 +0000

Twinkly Imaan

It's amazing and I never believed that it would happen this soon but my son loves his Son-Rise play room. Every morning after he has his breakfast (and sometimes while he's having it), he will pull me into the playroom and ask me to lock the door and start playing.

Initially when we started out, he was hesitant to even go into the room and once in, he would ask to go out after a while. He would look for an excuse to get out - asking for milk, saying he wanted to "wee wee" or by throwing a tantrum. Over time, he has realised that this is a great room, a fun place where mummy and daddy lights up like a Christmas tree and the word "No!" is banned.

The improvement in eye contact is another amazing development. Sometimes he just looks at me unblinking and with such intensity as if he's trying to tell me telepathically what he wants. When he says something, he quickly looks away. I guess it's difficult for him to do these two things at the same time, something which is so natural for us.

Another change we have noticed recently is that he prefers to stay at home now and cries every time I tell him that we are going to the nursery. We found this quite strange because he loves going to the nursery and when I mention that "we have to go to school now", he would rush to get changed and wait downstairs impatiently near the door.

The nursery reported that he was still throwing stuff around and including some books as well today. We just thought that this was some bad behaviour problem and a way to get attention. However, he rarely does it at home and we now think that this is an "ism" or "stimming" to handle the sensory overload and overstimulation at the nursery. Plus all the excited attention he gets when people try to stop him does not help. The staff at the nursery have tried various strategies to deal with his throwing but I guess they have a reason to be worried as the stuff he throws can hit other children around him. We are really worried to think what would happen if he continues this when he starts school in September. We know where he is going to go to and right now we are waiting for his statement to come from the City Council.

Anyway, this is his last week at his nursery and a chapter in Imaan's life ends this Friday. We are looking forward to the next chapter with gusto.

The words come tumbling out

ahoklah@gmail.com (Adam Dilip Mutum) — Sun, 29 Aug 2010 22:15:00 +0000

It's amazing how many words Imaan has picked up in the past few weeks and the wonderful part is that he been using these words meaningfully and not just randomly.

Just a few days back we were listening to some songs on my mobile via Last FM and he was actually trying his best to repeat the chorus of a song (I can't remember which) and very pleased with his effort. We both laughed a lot.

Last week, we invited Sarah to our house again. We discussed some issues and also set out some goals. In the playroom this time, Sarah built on Imaan's liking for bubbles by adding the words "small" and "big". So if he wanted small bubbles, he would have to say "I want small bubbles" or "give me small bubbles".

She then played with him using a small cart and got him to say "fast ride" or "slow ride" if he wanted to be pushed fast or slow respectively. After Sarah left, we have been playing the same game with him and trying to get him to say the same. He's nearly there.

What is the Son-Rise Program?

noreply@blogger.com (Dilip and Ez) — Sat, 28 Aug 2010 01:26:00 +0000

We get this question a lot.

Most of the professionals that are involved with our son seem to have heard about it but they only seem to have a vague idea about what it is all about. The only thing they know is that it involves intensive one-to-one interaction. However, the Son-Rise programme is much more than that.

The Son-Rise programme was developed by Barry Neil Kaufman and Samahria Lyte Kaufman after they helped their severely autistic son, Raun, to recover and lead a normal life.

It is a 1-1 therapeutic modality to help your child develop and grow in an environment where the cornerstone is love and acceptance and the primary focus is on socialisation. It is parent-directed where parents are seen as the child’s best resource unlike other therapies (such as ABA), relationship-based and child centred.

The programme is based on a volunteer network who works as a team to enable more time to be given to a child through the talents and personalities of the different volunteers. The programme is run in the Son-Rise playroom which is designed to be as distraction free as possible and act as a human greenhouse to nurture and grow your child.

The Son-Rise Development Model

The development model is based on the fact that there are 5 areas of development that need to be met for you to be a socially successful child/adult, and includes:

Self-Help: Toileting, feeding, dressing etc
Cognitive: Maths, reading, reasoning etc
Social: Eye contact, communication, Interactive Attention Span, Flexibility
Gross Motor: Limb mobility & co-ordination balance etc
Fine Motor: Hand/eye co-ordination, sensory perception etc.

Son-Rise believes that autism, at its core, is a neurological challenge where children have difficulty relating and connecting to those around them. For this reason, the Son-Rise program focuses on social development (no. 3 above) as without a child having these skills [or the 4 fundamentals (Eye contact, communication, Interactive Attention Span, Flexibility) as they call them] then their ability to learn the other development areas (i.e. no 1, 2, 4 & 5 above) will be seriously hampered. It therefore follows that once the child is successful in the 4 fundamentals they should then easily be able to develop in the other areas, but that the first focus should be social interaction.

Son-Rise has a social curriculum which bands your child from stage 1-5 reflective of how successful they are in the 4 Fundamentals. When a child reaches stage 5 of the social curriculum this would be equivalent of a neuro-typical child of the same age and the point when we would start to re-integrate Imaan into school, hopefully mainstream.

To go through the stages, goals are set for each of the fundamentals so that everyone working with Imaan is working towards the same goal. This is obviously the ultimate aim with Imaan.

Son-Rise Training

We have both attended the Start Up (January 2010) and New Frontiers (June 2010) courses. Both courses were 5 day programmes and equates to a total of 70 hours, intensive training by the Son-Rise teachers from the Autism Treatment Center of America (Home of Son-Rise) in Massachutes, USA.

Here are some AMAZING practical strategies that you can apply straight away with your child. These strategies can be applied to any kid regardless whether they have autism or not.

And here are some answers to some FAQs about son-rise.

noreply@blogger.com (Dilip and Ez) — Sun, 22 Aug 2010 08:23:00 +0000

The amazing story of Carly Fleischmann, a girl with Autism who can't speak but found another way to communicate via her computer.

Check out Carly's website.

Diagnosis is just the beginning

noreply@blogger.com (Dilip and Ez) — Fri, 20 Aug 2010 23:01:00 +0000

Sally Bercow, who's the mother of a "six-year-old son with high-functioning autism" writes that "Autism diagnosis is only the first step". She was commenting on the recent news that autism can be diagnosed with a brain scan.

I totally agree with her. The diagnosis was just the beginning in this journey with our son as well.

Imaan saying more words today!

noreply@blogger.com (Dilip and Ez) — Fri, 20 Aug 2010 22:59:00 +0000

While we were playing a horsey game involving Imaan riding me like a horse on my back, he said:

'Horsey up'
'Horsey down' and
'Horsey go'

Also:

Yummy, Baba, Cocoa pops, Ice cream, Yogurt, Milk, Blow, Bubble, Pizza, Wee-wee, Computer, Night-night, Bye bye, Pink bear, Help please, Apple, Out!
and he counted from 1 to 13... :)

YOU ARE TRULY BRILLIANT IMAAN!

GO TEAM IMAAN! GO TEAM IMAAN!!! WOOHOOO!

Fundraising - Running a Marathon

noreply@blogger.com (Dilip and Ez) — Wed, 18 Aug 2010 16:00:00 +0000

Imaan! xxx

Ezura Ghazali (Imaan's aunt) will be taking part in the Run To The Beat, London’s Music Half Marathon (13.1 miles) in support of Imaan's Son-Rise programme.

She is looking for other people who would like to join her.

To support Ezura or obtain some information about the marathon please email ezuraghazali at gmail dot com

Goals - August 2010

noreply@blogger.com (Dilip and Ez) — Wed, 18 Aug 2010 15:09:00 +0000

GOALS

Inspire Imaan to look at you for longer

Celebrate Imaan in a variety of ways
Experiment positioning at different distances in the room and using the mirror
If Imaan is motivated and connected but not looking, ask him to look at you
If Imaan is saying a clear single word then encourage him to say a 2-3 word sentences (e.g. “give me”, “tickle me”)
Celebrate Imaan sincerely
User friendly and responsive to what he is saying
Clearly model a sentence
When Imaan is connected and motivated, ask him to say the full sentence
Experiment with using rhythm in the sentence

Motivate Imaan to lengthen his interactive attention span

Celebrate Imaan for watching / participating in the game
Use anticipation and 3Es in your game
Just do it – introduce a game
While Imaan is motivated in the game, stick to the same game (adding variations)

Helping Imaan to use communication over whining

Be comfortable with whining and tantruming
Be slow and boring, when he starts whining and tantruming
Be fast and exciting when he speaks, looks, plays, etc.

IMAAN'S MOTIVATION

• Bubbles
• Jumping
• Blanket
• Tickles
• Play-dough
• Bob the builder
• Postman Pat
• Songs: “Incy wincy spider”, “ring2 roses”, “twinkle2 little star”, “Wheel in the bus”
• Buttons/ Switches
• Throwing
• Squeezes
• Taking things apart
• Family
• Transports

Successes to date

noreply@blogger.com (Ez) — Sun, 15 Aug 2010 17:50:00 +0000

Much more eye contact, especially during self-stimulating activities. Previously his self-stimulatory activities were quite exclusive. Responds to ‘look at my eyes’ commands approximately 80% of the time.

Imaan has started saying a few words in context; Milk, Peanut Butter, Chocolate, Biscuit, Wee-wee, Poo-poo, Water, Out, Open, Light, Computer, Good night, Night night, Good Morning, Bye bye, Itchy, Scratch, Carry, Horsey, Blow, Bubble, Balloon, Ball, etc.

Started to sing rather than just humming – Ring a ring a roses, Incy wincy spider, Twinkle twinkle little star, etc.

Starts speaking in sentences: “Baba, I want milk please”, “Peanut butter please”, “I want biscuit please”, “I want bubble please”

Started imitating us playing with therapy ball, doing countdown from 5 and then acting as if flying after saying “take off”.

Loves his playroom

Sleeping through the night

90% toilet trained, out of nappies (but not at night)

Seems much more contented, less overload symptoms

Able to focus for longer periods with sustained eye contact

Looks at our mouths when we model words and tries to follow most of the time

He initiates interaction with us to join him in activities such as playing with toys.

Fighting for your child

noreply@blogger.com (Dilip and Ez) — Wed, 11 Aug 2010 00:36:00 +0000

I recently met up with a lady who also has a child with autism around the same age as my son. Her son is also starting school this September. However, I found out that her son doesn't have a statement of special educational needs nor are they planning to apply for one. I was quite surprised and asked her why?

Apparently they had been told that their son doesn't need one by the city council and that by law, schools in Coventry are supposed to be "inclusive" and make sure that all kids receive proper education regardless of whether they are with autism or are neuro-typical. She was lucky because the school she plans to send her son to has been really supportive and even going to employ someone new to help her son manage in the school. However, this is an exception rather than the rule.

Well, we had been told the same thing as well - that our son doesn't need a statement as he was not that "severe" but we were adamant that we "NEED" a statement of special educational needs because with a statement, a school would have to provide whatever is set out in the statement.

Afterwards, we were also told that we won't be able to get our son into a mainstream school with a special autistic unit because there was no place. We had wanted to go there because we had heard of so many good things about the unit and about the amazing teacher-pupil ratio (1:1) in the unit. Later on, we were told that there was no way we could get in as the unit was meant only for kids with higher capability and potential to integrate into a mainstream school setting - meaning our son was not good enough. So he is not severe enough to get a statement but too severe to attend the unit. So we wondered who were in the unit?

We definitely didn't want our son to go to a special school even though it looked like a fantastic place and the staff there were really friendly. We then decided that an intensive home based Son-Rise programme was the right choice and that we would be fighting the council to support that in the statement.

A second proposed statement came though the letter box several days back following our meeting with the Education officer SEN and we were left speechless when we found out that our son had got a place in the enhanced resource provision (the special autism unit) in the school. That changed everything and we had to reframe the whole letter we had written asking for funding for the home based programme.

What we want to emphasize is that authorities don't necessarily have the best interest of your child in mind after all it is just another child with autism and not their child. Most of the time, they are more concerned about saving money after all there are a lot of kids with autism and increasingly little money to go round. YOU, the parents have to fight for your child as he cannot fight for themselves. Your are a force of nature and remember that if you do not ask, you most likely won't get. if you think that things are going to fall into your laps then you are most likely mistaken.

I remember someone telling me a real situation whereby two families with autistic children lived under the same council (I can't recall where) but while one family got a funding of more than £30,000 per annum from the council for running their home based Son-rise programme, the other family got nothing even though the latter family had a child with more severe autism. I am not sure about the details but I think the difference was that the first one fought all the way for the funding, probably even going to a tribunal.

As for us, we won't stop fighting ever for Imaan becauase as I mentioned earlier, if you won't, no one else will.

Sarah with Imaan in the playroom

ahoklah@gmail.com (Adam Dilip Mutum) — Sun, 08 Aug 2010 10:05:00 +0000

Goes from "Bubble" to "I want bubble". Sorry the quality is not that great.

Barry Neil Kaufman says it's all about beliefs

ahoklah@gmail.com (Adam Dilip Mutum) — Thu, 05 Aug 2010 00:29:00 +0000

This was so inspirational, I just had to share it here with all readers of this blog. This is Barry Neil Kaufman, Co-Founder of The Option Institute & Autism Treatment Center of America, talking about happiness and personal development:

Sarah's Outreach Visit

noreply@blogger.com (Dilip and Ez) — Fri, 30 Jul 2010 01:42:00 +0000

Yesterday we had a visit from Sarah Dargue, founder and director of Autism at Home. She was certified as Son-Rise Program Child Facilitator in 2006 before she set up her own Home-Based Programme service.

My wife found out about her from another parent and the wonderful work she is doing with their son Henry. It was wonderful to have Julie, my son's key worker at the nursery as well. All of us took turns playing with Imaan in the playroom and received feedback and some suggestions from Sarah afterwards. For example, I found out that it might be a good idea to give my son some room - I was almost in his face, trying to get eye contact. His Isms (or stims) are quite short and it is quite difficult to notice them sometimes.

My wife on the other hand, was challenging him too much and needed to celebrate more.

It was amazing that Sarah was able to get my son go from "bubbles" to a 3 word sentence "I want bubbles" in a couple of minutes. According to Sarah, Imaan is really compliant and a fast learner. She added that at the rate he is going and if we keep up with the home programme, "..he's going to fly soon".

It was an amazing session and we look forward to seeing Sarah again.

2nd visit to the Advance Centre

noreply@blogger.com (Dilip and Ez) — Thu, 22 Jul 2010 23:48:00 +0000

This is our second visit to the Advance Centre for The Scotson Technique at East Grinstead, West Sussex.

Today is the last day and we have learnt several new techniques - some are much more complex than the earlier ones. This time we are building on the previous techniques - working on the lungs, thyroids, brain and of course the diaphragm.

The first day we made a big mistake - I took my son into the hyperbaric chamber while he was sleeping. Unfortunately he woke up as soon as the gas was pumped in with a hiss. I guess he was confused and scared and started crying - I would be as well if I was in his place. Well, we had to cut the session short but it still took a while to open the chamber as the pressure had to be brought down slowly. All the while he was crying and sweating. He tried everything to get me to open up - saying he wanted milk, that he wanted to pee, etc. However, we had to wait for all the air to go out and when it finally open we were both relieved.

We should have taken it a little a time and get him used to the chamber. There is no way we are going to get him into the chamber again soon. We did notice that he was really active and was even saying some new words when we got home. I felt great as well. We have heard so many parents saying positive things about Hyperbaric Oxygen Therapy (HBOT) and I definitely do want to try it out again.

Meeting with Education Officer SEN

noreply@blogger.com (Dilip and Ez) — Tue, 20 Jul 2010 08:34:00 +0000

We have a meeting with the Education Officer SEN at the Education Office, Civic centre, Coventry, today to discuss our son's proposed statement of special educational needs.

We would have liked a place at the special autism unit in Aldermoor Farm Primary School in Stoke but as it's full we feel that our son's needs can be best met by home-schooling him with the Son-Rise programme in place.

Let's see what they say.

Wish us luck.

No success with the Tree of Hope

noreply@blogger.com (Dilip and Ez) — Tue, 06 Jul 2010 23:17:00 +0000

Our next Scotson Technique session is later this month. It will cost us £500 for this session an we were hoping that that "The Tree of Hope" Children's charity would fund the treatment.

Unfortunately we received an email from them yesterday informing us that our application has been rejected.

Really makes me appreciate the Caudwell Children charity even more.

Now we got to find and come up with the £500 from some other source.

Contact Us?

noreply@blogger.com (Dilip and Ez) — Wed, 30 Jun 2010 20:55:00 +0000

Imaan, Ez, Dilip & 'pinked' Rahil at the Zoo xxx

If you would you like to talk to us about Imaan's Son-Rise programme, volunteering, fundraising, donating or anything else, do not hesitate to call us or write us an e-mail. We love to hear from you!

Ez or Dilip Mutum

0247 659 0966
0770 414 7655

E-mail:
helpforimaan@gmail.com

We live in Coventry, UK.

Preparing the Son-rise play room

ahoklah@gmail.com (Adam Dilip Mutum) — Tue, 29 Jun 2010 09:22:00 +0000

To create a dedicated play room was one of the decisions we made at "The Son-Rise Program New Frontiers" programme.

With our changed attitude we went ahead and converted our little used living room to the play room and the dining room to a living -cum dining area. And we managed all of that in just one day thanks to my sis-in-law Eju and her amazing husband - who's a terrific interior decorator. We had bought all the stuff ready on Saturday and they came over last Sunday. We worked from morning till evening and we finally have a play room.

The mirrors and shelves are from Ikea Coventry and the zero VOC white paint from Tesco Arena. I had to get some more paint from B&Q as we ran out of paint half way

Still some more work to do including installing a mirror, CCTV and soft flooring over the hideous red carpet.

Playing with another boy

ahoklah@gmail.com (Adam Dilip Mutum) — Sat, 26 Jun 2010 01:18:00 +0000

We were over joyed when we read in the nursery report that our son has been playing with another boy, cooperating and taking turns using the blocks. This has been happening for the past two day. Julie, my son's key worker has taken some of the Son-rise ideas on board and she is really doing a great job.

When he came home today, he realised that the neighbour's kids were playing in the backyard and he quick ran out taking his football. He then flung it over the wall and stood there waiting for a reaction from the kids next door. He was overjoyed and smiling when they called at him and threw the ball back.

Really happy knowing that he want's to play with other kids but sad as well because he can't talk to them.

Statement of special needs

noreply@blogger.com (Dilip and Ez) — Thu, 24 Jun 2010 08:26:00 +0000

We finally received our son's Statement of special needs yesterday. I am quite impressed as it was really punctual - no delays what so ever. Our disappointment was that the provisions were so general. Discussions with other parents who have got a statement for their child indicate that we need to fight for specific and clearly stated requirements that must be provided by the school. The only problem is that we have only 15 14 days left to agree or amend the draft they sent us.

They also recommended that we send our son to a special school as they feel that he won't be able to fit into a mainstream school - they specified Three Spires School here in Coventry. We had wanted to send him to Aldermoor farm - a mainstream school with a special unit attached to it. We have already got a place in the mainstream school but we are not sure whether there are any more spaces left at the unit.

We are now totally confused.

I want...

ahoklah@gmail.com (Adam Dilip Mutum) — Wed, 23 Jun 2010 21:26:00 +0000

"I want milk"

When my son suddenly said these words, we were so surprised that we didn't react for a few moments and he said it again and we were off celebrating. To some parents this may seem like something normal but for us, to get him to say anything is an achievement and for him to say the three words meaningfully, is a miracle.

Now we are trying to get him to say ! want .. with other words like light, out, water, etc.

Wish us luck.