YAFAAU's blog Archives

Blog update

2006-01-28T16:34:00.000+05:00

The new blog is at http://www.yafaau.info/blog you'll find further updates there.

new Hosting at Maldivesinfo.com

2006-01-25T16:27:00.000+05:00

new Hosting transfer in progress, it might take 24hrs minimum

I hope to update blog when all the transfering is done to assure that there aren't any posts mising. So there might be difficulties in displaying the pages at the website although blog might be online.

I'm moving yafaau.info to a new free hosting at Maldivesinfo.com who is managed by my friend Ashraf Saeed who has the cheapest and value for money hosting in Maldives. His regular hosting package cost only $30 and the features are great.

a cry for hope

2006-01-24T16:40:00.000+05:00

23 January 2006

Yafaau wasn't sleepy last night so i played with him late midnight. Then around 1am prepared yafaau to sleep. I guess i played too much, he didn't sleep even at 2am! I had to get up in the morning to work so called samiya and went to bed. Just as i was going to sleep, heard Samiya saying something loud. & Guess what happened! Yafaau burst into tears and he was crying his eyes out! I'm writing this because this is the first time samiya said yafaau loud and first time we noticed yafaau crying because his mama shouted at him. aw! :) wasn't that cute? Thats yet another gr8 sign. I wasn't furious with Samiya, she was sleeping until i handed yafaau over. Sign... It was a happy and a tearful moment though. So we both talked and talked but yafaau was murmuring and complaining in his way of expressing his sadness. I tried calming him down while his mama prepared his nightly nestum. After his nightly nestum meal, slept at around 3am. Phew! A night to remember.

Mobile phone learning

2006-01-22T23:23:00.000+05:00

250 people aged 16-24 in the UK, Italy and Sweden used mobile phones to engage with learning in a three-year "M-learning" project. It was found that the method enabled most of the young people to learn, who had not previously engaged well with other forms of learning. Two-thirds wanted to continue more permanently. Report, Mobile Technologies and Learning, www.lsda.org.uk/files/pdf/041923RS.pdf

Moving places at home and in play

2006-01-22T23:09:00.000+05:00

We have observed that change is a great stimulator. Constantly, we try to keep the atmosphere and environment as stimulating as possible. Even before Yafaau can even walk or even crawl, interacting with him from different positions within the same room is animating and sometimes funny. We use different approaches like taking Yafaau to a corner of our room when his favourite music comes and variety of materials like Mobile phone and calling with funny sounds from different places.

Hmmm... I guess I also have to tell you all of Yafaau's 'favourite' sounds. Well... he loves the music shown between Television Maldives(local TV) programmes. And he adores the cute baby laugh sound which was very popular recently as a mobile ringtone(here it is)

2 months since convulsions stopped

2006-01-12T17:22:00.000+05:00

Its been 2 months today since Yafaau's convulsions stopped and Alhamdhu lillah, he havent had any since then. Even though its stopped Yafaau will still be on anti-convulsions as prescribed by our doctor.

New Nestlé Wheat and Honey[Stage 2]

2006-01-08T19:49:00.000+05:00

Update: 19 January 2006

It is noted that after starting the new type of NESTLÉ® Stage 2 Yafaau have difficulties in having bowel movements daily! He used to have bowel movements daily and maximum once in two days but after starting the new Nestum Nestlé Wheat and honey, we only noticed his bowel movements after three days! We are very serious about Yafaau's diet and changed it to the packet type of the same. That was the only new food we introduced past weeks, so after changing it he did have his normal bowel movement yesterday. We didn't change any of his regular diet which consists of rice+veggies, fruits and ice creams. Hmmm! ICE CREAM.... lets see... introducing chocolate ice cream could also be the problem here. We will see that and do an update.

8 Janyary 2006

Yafaau loves (Nestlé® Wheat and Honey[Stage 2]) and he couldnt even go to sleep at night without a portion of it. This January Wheat and Honey has been Improved with DHA and uses an exclusive technology called CHE(Cereals Hydrolyzed Enzymatically) which breaks down carbohydrates such as rice or wheat into smaller components for easy digestion. It has also increased Vitamin A from 999I.U/300μg RE per 100g to 1000I.U/300μg RE per 100g. New wheat and honey also contains Iron and Iodine as with the old one.

Vitamin A: Helps to maintain skin health and essential for the functioning of the eye.
Iron: Aids the formation of the red blood cells
Iodine: Is important for thyroid hormone formation

Source: Nestlé singapore website

Yafaau's Passports

2006-01-06T14:59:00.000+05:00

It was a total surprise to see that Yafaau's passport had the 4th of january on the date of issue! Normally passports are issued the next working day and the date of issue is this following day. A thumbs up to Dept. of Immigration on their quick public service and a special cheers for the issued date on Yafaau's PP.

3 Years Birthday

2006-01-04T17:53:00.000+05:00

Thank you for visiting Yafaau's developmental blog. Exactly three years back today at IGM Hospital Samiya gave birth to my first son, Yafaau who 'almost' died at birth. Its been three years and the developments of Yafaau we see today are endless efforts of many people. The doctors, physiotherapists, friends and family deserve a lot of credit for their advice and most importantly being there for supporting us.

This noon we went to FDI to get the passport photo for Yafaau's passport. From 15 of July last year, children under 10 years also require a passport for travelling abroad. http://www.immigration.gov.mv/childrens_pass.htm It was difficult to get the appropriate position because Yafaau still has no Head control but the first three photos we took vanished into thin air!(somehow got deleted) We tried second time and wasn't able to take an appropriate photo id. After some time they agreed to retouch the photo. They selected this cool photo id for Yafaau's Passport.

Happy New Year 2006

2006-01-03T22:17:00.000+05:00

Happy new year to all

Nov 20 Doc consultation

2005-12-20T22:41:00.000+05:00

We consulted because Yafaau had some discharge in his right ear. It turned out to be an ear infection and our doctor advised us a medicine to put in Yafaau's ear and to consult an ENT specialist in it continues to worsen within 10 days. As soon as we started this medication, its effect took positive turn. So far today he is alright insha allah.

2005-12-20T22:16:00.000+05:00

Adaptive Toys continued...

The Softwares below are compatible with Nokia Symbian Series 60 phones but there may be support for other types at their website.

1. Torch: is a free software almost everyone with a S60 phone use for its light at dark places. It also has various colours other than white like black ,yellow, white, pink, green, red and cyan which can be used as an adaptive tool for visual stimulations.
2. Mobile Baby Toy ver 1.7: is trialware from mobilebabytoy.com which has different pictures and sounds to each key of your smartphone. It can be a very good developmental toy for children. I strongly recommend it. It also has add-on sets of pictures to download when bored and I will later post how you can customize your own photos and sounds into it.

A must for every parent with a Smartphone(S60) and a kid

3.Psiloc BabyCare ver 1.3 is a noise-detecting babysitter application. When the child waking up it will call the user at predifined telephone number. A call from the user changes a smartphone into a speaker. more at http://www.psiloc.com/

Please feel free to contact me in installing any of these softwares on your Nokia Series 60 phones.

Adaptive toys

2005-12-19T17:01:00.000+05:00

"Multicolor LED magic spinning ball contains colorful LED lights

Absolutely incredible light show! 10 spinning bright LED bulbs create 32 flashing patterns!

This toy is specially adapted with a 1/8� mono headphone jack to be used with an external switch for children with special needs. The original ON/OFF button works with or without the external switch hooked up. It�s a great toy for any child.

Excellent toy for understanding cause and effect and for visual stimulation. Uses 3 AA size Batteries (Included)" ref: http://www.therapies4kids.com/home.php?pid=35

To my surprise Beyb� brought Yafaau a similar toy when he saw us using my phone with Baby Toy and Torch for visual stimulations. He said that is was available at the local market area and not so expensive too. For those wondering what Baby Toy and Torch are; they are symbian programs which can be installed to Nokia Series 60 phones which can be very useful in giving visual stimulations. I will post some details in a while, Yafaau has a usual appointment with doctor and I'm off for a while.

MR Vaccination campaign in Maldives

2005-12-14T17:10:00.000+05:00

Measles and Rubella vaccination campaign is underway throughout Maldives. It started 4 of this month yet there is no such information at their website or even Min. of Health website. Anyway Yafaau's mom had her vaccination today. We were informed about the risks involved in getting pregnant within 3 months after this vaccination. So better be careful ... ;)

For those who haven't done it, get it done by Jan 4th 2006.

2005-12-14T16:41:00.000+05:00

I would like to point out the great efforts by Dr Niyaf in his blog about the various issues that are very useful and informative. His posts include:

Tea and iron absorption
Common childhood problems
Developmental milestones: birth to 2 years
Loose stools in a 3 week old baby
Henna (Heena faih) and G6PD deficiency
Jaundice in newborn babies
The H5N1 bird flu (Avian influenza): being prepared to prevent panic and disaster.
Your question: Additional vaccines
Your question: Panadol for fever in an infant
Readers' question: infant walker safety

2005-12-07T20:00:00.000+05:00

"Khaassa Ehee", radio programme by VOM.

A new radio programme by the national radio, Voice Of Maldives is being broadcasted these days with the assistance of Ministry of Higher... Social security and CARE Society of Maldives. Today's topic on this programme was Cerebral Palsy. It was very odd though to use the term "Nukulhedhey(disable)" rather than "Khaassa Ehee(special needs)" specially when the name of this programme is "Khassa Ehee". I am informed by a friend in this field that there are discussions among involved organisations/ministries on using a common term.

2005-12-05T19:48:00.000+05:00

MR Vaccination campaign underway

Department of public health website states and I quote "Facts and figures on health are gathered and used to demonstrate impact of health on development. Interested NGOs are encouraged and assisted to participate in health education and promotion programs." Ref http://www.dph.gov.mv/health_promotion.htm The MR Vaccination campaigne is on full throttle and there is no information about it in DPH website? Unfortunately their new website's comments doesn't work and when I called they mentioned that there would never be any information at their new website! Read about MR vaccination from Haveeru website: http://www.haveeru.com.mv/?page=details&find=&tbl=online&id=31817

2005-12-04T01:04:00.000+05:00

Marking World Disablity day

Surprise! surprise! Last night I was invited to a meeting to CARE society where I found out that it was the World Disability day! I somehow noted down in my mobile that it was 8th of this December. Anyway CARE society's meeting included launching of their new awareness publications and posters. When I asked how it would be distributed Ijaa(one of CARE Founder member) mentioned "it will be distributed where it is needed most" that is, where awareness on disability is needed most. Lets see...

2005-12-02T10:56:00.000+05:00

Precautionary tests/Yafaau's interaction/New photos

Last week Yafaau had fever and was very moody and was not very playful as any child would be. We showed to our Doctor and found out as we expected that he had adominal discomfort which let to excessive crying and fever. Routine urine and culture were done and I got the report of routine which was alright and discussed to our doctor. We also wanted to do a liver function test and hopefully get the report today. The culture report will be finished tomorrow. Amazingly without any harsh medication except gripe water Yafaau is alright now. His fever was only for a day and crying has also stopped. He is back to normal.

We are very pleased to say that Yafaau's interaction with us has increased within this month and he loves sounds. We would also like to mention here that when one comes in front of Yafaau without making any sounds, he gives a wonderful smile! not really focusing but this gives us a lot of hope in further increasing his visual stimulation.

I'm currently categorizing Yafaau's photo album and adding some new photos which were unavailable at the time of upload. All the new photos are ready but I have limited internet connection available. Please do check for updates at http://www.yafaau.info/gallery or see new images at http://www.yafaau.info/gallery/search.php?search_new_images=1

2005-11-28T15:35:00.000+05:00

Yeah, right!

2005-11-21T15:14:00.000+05:00

No convulsions since November 12th

We are very glad that Yafaau�s convulsions have ceased! We use a very strict schedule on his medication and note down all his convulsions non-stop since Yafaau was last admitted in Hospital for fever. Since August 25th we have been recording all his convulsions and it never occurred after his last one which occurred this November 12th morning 4:30am (5 times). This was the same day we went to Kuda Bandos trip with our cousins and Grandma.

2005-11-11T21:30:00.000+05:00

On the Occasion of the 37th Republic Day Nov 11 2005

First, I would like to take this opportunity to wish all our visitors on this very special occasion of the Republic day.

I scheduled new Medical info in the Med Info section of Yafaau's website but I'm unable to do any uploads due a new configuration on office pc. Some of the information that I intended to include were:

* New printable PDF files(all articles on medinfo section)
* Parents advice on therapists and case managers; PARNET Winter/Spring 2004 bulletin
* Stress techniques for Parents; PARNET Winter/Spring 2004 bulletin

I will try to do this update asap.

2005-11-07T21:11:00.000+05:00

Stress techniques for parents
by Dr. Ann Edworthy

Stress occurs when we feel that we cannot cope with a situation. There should be no shame attached to being stressed as we are all likely to experience extreme stress at sometime in our lives. Half a million people in the UK experience work related stress at a level that is making them ill. It should not be surprising, therefore, to find that parents caring for a disabled child have reported generally high levels of stress as they have additional issues/concerns to deal with (including communicating with the medics; applying for the financial support from the state; sleepless nights, practicalities of holidays; respite care etc.).

1. Adopt a healthy lifestyle.

2. Adopt the right attitude.

3. Be positive.

4. Learn to relax.

5. Progressive muscular relaxation.

6. Time management.

7. Methods such as yoga and meditation (you will need to join a class)*.

Read details at : http://forum.yafaau.info/viewtopic.php?t=77

2005-11-07T20:31:00.000+05:00

Back to Care Society for PT

After having frequent visits to IGMH Physio, we came to know that they really haven't started assessments of any chair yet! Our visits are only for PT so we discussed with ourselves and we wanted to go to Care Society for PT and we'll do special seat assessment when IGMH Physiotherapy department is ready.
------------------------------------------------------------------------------------------------

New Forum Articles: Exjade (Deferasirox) approved by FDA in US
http://forum.yafaau.info/viewtopic.php?t=76 Posted by Dr Niyaf

2005-10-28T12:12:00.000+05:00

Cerebra news/articles at Yafaau's forum

I have got the permission from Cerebra(http://www.cerebra.org.uk) to publish articles that could be useful for the Maldivian Cerebral Palsy comminity from their PARNET bulletin. You will find articles at http://forum.yafaau.info/index.php?c=6 Articles include: Research on 'Protecting premature babies, IVF and low birthweight' etc.

Parent advice for therapists and case managers

First, last and always, operate with empathy (this was mentioned by dozens of respondents); Practice �walking in the shoes� of the family or the individual; get to know what their day-to-day reality is like.
Please do not assume that difficult behaviors � especially in children � are a result of emotional disturbance, abuse, or neglect without helping the family rule out any medical, neurological or biochemical causes.
Smash the belief that the presence of a child with a disability wreaks havoc in a family, leading to depression, marital breakup, etc. More than anything I would want you to understand that it is not the child but the society that causes families to break apart. Please take the blame away from the kids.... Read more

2005-10-26T14:11:00.000+05:00

Who's gonna interpret the EEG?

I was asked by Dr. Ismail to give an EEG a try to see if there was any changes and asked me to consult a new doctor at IGMH whom he says can interpret EEG. I got the EEG today evening and was informed that this doctor was on duty. I took an appointment(late appointments remained) rightaway and found out that the doctor was infact a Neuro Surgeon. Well anyway, its worth showing him and maybe know what his advices would be. It turned out as I thought, he was quick to admit that it wasn't his field and that it was a Paediatric Neurologists opinion that we must seek. I totally agree with him. As this consultation took place without Yafaau, he wanted to see Yafaau 'when we come to hospital next time'. I asked him if it was ok to visit him tomorrow and we agreed.

2005-10-25T14:16:00.000+05:00

Neuro Surgeon, Dr Arumugam Mani

He noted Yafaay's severe spasticity of neck and limbs as tension dystonia. After close observation he recommended to try Beclofen for spasticity. Also pointed out the contracture of Yafaau's ankles. His opinions were physiotherapy, special seat and splints... He did mention about the convulsions that the Video I showed was actual fit but some movements were actually involuntary spasms.

2005-10-23T13:57:00.000+05:00

EEG from IGMH

With the failed attempt to do an EEG last thursday we took another appointment on sunday. We went to IGMH early in the morning as EEG technician(John) advised, because it would be easy to give him sedation and would sleep early to save more time. After sedation we were not able to put him on to sleep as easy as we thought he would be. Just as he was about to get asleep, the convulsion started! he had about 9 of them in front of John who was in shock. He was infact very sad and showed us his sympathy. After 9 high repetition of the convulsions, Yafaau went to deep sleep. As soon as the wiring connection was over John started taking EEG. As he was taking the EEG he clapped, gave some flash and pinched to see the results on paper which I guess was expected to be unfavourable.

2005-10-22T14:43:00.000+05:00

October EEG

We've started going to IGMH Physiotherapy dept. to re-adjust Yafaau's Special seat So we have interrupted going to CARE Society for PT. Asessment would take place when IGMH PT gets familiar with Yafaau. Earlier his asessment took more than a month and we had to do a visit 5 days a week. We dont know how many days this asessment will take thats the main reason for interrupting CARE PT.

Our doctor asked us to do an EEG due to the changes in the convulsions form. We almost did an EEG thursday, Yafaau woke up after the EEG technician connected the wires. So we had to make an appointment for another day that is tomorrow.

At last STO pharmacy had started to bring Rivotril 0.5mg from Roche but it was from Pakisthan. That really doesnt matter as Rivotril is imported and repacked in Pakisthan. The only difference is the medicine from Pakisthan comes in cards and through Sri lanka comes in a bottle(tablets). Now it would be a lot easier because we've been bringing Rivotril from Sri lanka for two years through people visiting there.

More about Rivotril from Rocheuk.com:
Patient Information leaflet
Summary of product characteristics

2005-10-17T16:09:00.000+05:00

Shifana had a cesarean, its a BOY :)

October 17 update:
Photos uploaded to gallery see it at http://www.yafaau.info/gallery/details.php?image_id=347 and http://www.yafaau.info/gallery/details.php?image_id=348

This morning Shifana(my cousin) went through the operating room and came out with flying colors, blue that is. It was a lovely boy, looks just like her. I do have a pic but I'll post it on the gallery later tomorrow as I have to go home now, SIL's waiting and I have to go babysit Yafaau to help SIL prepare for the breakfast.

2005-10-16T22:00:00.000+05:00

A Parent's Perspective
by Cal Lambeth

My daughter was born nine weeks prematurely after my two week stay in the hospital with ruptured membranes. She had to be resuscitated in the delivery room. She had no breathing difficulties and was soon transferred out of the intensive care nursery. Five weeks later, still a month ahead of schedule, we took her home. I remember that time as a difficult one of adjustment. She was our first baby. Things hadn't gone according to"script". I felt both she and I had been cheated out of those important nine weeks in the womb. These negative feelings were those of many new mothers and they did not relate to any anxiety about her long-term health. Rather naive, I had considered that her birth circumstances were either "do " or "die". She would be born and survive with no further problems, or she would die (probably from breathing difficulties). I was unaware of the increased risk of many disabling conditions which prematurity creates.

Over time I began to notice "things" about her. She was irritable and colicky. She couldn't seem to master breast feeding as her tongue kept thrusting out. Her head control was very poor. She kept arching her back to look over her head. For a time we all found this amusing, thinking that the ceiling fascinated her. Her right hand remained almost always clenched. Her legs seemed stiff and her feet scissored. Gradually, private little fears began to creep in, but I held them off as merely relating to her prematurity. Because of her premature birth she became involved in a study of lung maturity. This necessitated follow-up with certain health professionals over the course of the year after her birth. It was as a result of this study that we received a diagnosis. When she was about 11 months old a paediatrician at one of these meetings merely said "You're aware that she has cerebral palsy." She was described as "mild to moderate". I was absolutely
devastated. I remember clutching her and sobbing, "My poor baby!". It was like a scene
from a bad movie and I still remember it vividly. Later, doctors apologized for this rather
blunt and unprepared announcement. It seemed that they had been concerned about
her condition for some time but were monitoring it and didn't want to say anything until
they were sure of the diagnosis. Although I appreciated this goodwill, I questioned the withholding of this information. They couldn't shield me forever, and in my opinion, my daughter was losing valuable time in which to begin physiotherapy.

Thus began our lives as "Parents of a Special Needs Child". Those were bleak days. I was despondent, panic stricken, and felt that life would never be good again. My career plans were destroyed. Looking back at this time I realize how bitter and hostile I was. I found it difficult to maintain close relationships with people who had children of a similar age as my daughter. I wanted to scream when they complained that their child was "into everything" while mine lay flat on the floor, unable to sit or crawl. I also felt angry when people told me how marvelously I was coping. I felt neither marvelous, nor that I was coping well. Furthermore, it seemed that this was an indication of their view that my child was a burden. Privately, I felt this way myself at times. I suppose this all represented a fairly typical and predictable process.

Although I presented a bold front to those around me, the truth of the matter was that I was depressed and frightened. I was fortunate to have a family which offered physical help and a listening ear. Not everyone is so lucky. Furthermore, I strongly felt the need to talk to others about their own experiences. My first thought was to look up "Cerebral Palsy" in the telephone directory. I took a deep breath and called the number of the Cerebral Palsy Association, determined to be strong and in control. Shortly into the conversation I broke down, but the woman I spoke to was kind. She offered the information that her husband had CP and that they were expecting their first child. These words gave me a new sense of what the future could hold. CP was not a death sentence. My child could grow up, be happy, lead a life of purpose. At least the possibility was there. From this conversation I received information about parent support
groups which I attended for a time and found valuable. But the most important fact was that I had taken some action. This small step had helped to allay the sense of "aloneness" and had given me a renewed sense of control.

Our family is now much like any other - enjoying the excitement of new achievements and the ups and downs of child rearing. But it would be wrong to claim that all of the emotional and psychological hurdles have been overcome. As our child matures, new challenges present themselves. We are always seeking new ways to adapt her physical environment to allow greater independence. We want to encourage self-esteem, and pleasure in new achievements. We are not experts in these matters, but have learned to rely upon our common sense and the knowledge and expertise of those we trust.

from the quarterly newsletter 'InformAction'
The Ontario Federation for Cerebral Palsy
1630 Lawrence Ave. West, Suite 104, Toronto, ON, M6L 1C5
CANADA
Phone: 416-244-9686 Toll Free: 1-877-244-9686
email: ofcp@ofcp.on.ca
informaction@ofcp.on.ca

2005-10-13T02:09:00.000+05:00

CHOICES
BY MARK CAMPBELL

Choices can be long,
they can be good to make,
they can be bad to make,
they can be hard to make.
Once you make a decision,
you have to stick with it and deal with it
Because say you make a mistake
You have to deal with it as it comes.
You're the only one who has to deal with it.
It's the same thing in school
in school, in school.
The same thing all over again.
If your teacher asks you to bring your
keyboard,
your keyboard, your keyboard and
you don't,
you'll be in trouble,
in trouble, in trouble
The only way you can bring it,
bring it, bring it, bring it.
I feel happy now.
I'm happy that I'm gonna to quit soon.
Move on, move on, move on
to something else.

from the quarterly newsletter 'InformAction'
The Ontario Federation for Cerebral Palsy
1630 Lawrence Ave. West, Suite 104, Toronto, ON, M6L 1C5
CANADA
Phone: 416-244-9686 Toll Free: 1-877-244-9686
email: ofcp@ofcp.on.ca
informaction@ofcp.on.ca

2005-10-12T19:55:00.000+05:00

A Dialysis units in IGMH

A total of 7 units is now available. There was 35 ppl registered to use 3 dialysis units earlier so hopefully this achievement is a long awaited dream of the locals.

2005-10-04T00:26:00.000+05:00

CARE Society Action Plan Review meeting photos uploaded.

Ramazan Mubarak.

2005-10-03T23:35:00.000+05:00

Check this article by M. Shaheeb at Haveeru about Hospitals

http://www.haveeru.com.mv/?page=details&cat=cmwlok&id=29914

2005-09-28T17:58:00.000+05:00

July August Vadhoo Trip 2005 photos uploaded at the gallery at http://www.yafaau.info/gallery

HURAA Trip by Maldives Inflight Catering and CARE Society

2005-09-26T20:18:00.000+05:00

Our gallery is having some problems in uploading so I thought to post some thumbnails of the trip on 16th September 2005. This trip was organised by CARE Society and funded by Maldives Inflight Catering Services of Hulhule Airport. I'd like to thank them for this wonderful trip for the parents of CARE Society. The Food, Location and services was excellent and wonderful.

In the boat, it took 3 boats to take us all.

The MICS guys were very helpful.

Huraa, it was a beautiful day and a hot one.

The guest shops at Huraa.

All three groups in boats gathered at the Huraa harbour.

SIL's grand mother (temporarily staying in Huraa) greeted us at arrival.

Giving Breakfast to Yafaau.

Everybody loves the shades

Open ya mouth will ya!

A parent of an autistic child with his younger sister.

One of the special children singing songs.

Special teacher, Fazu handling Yafaau.

More special songs

And more�

Taking time to get introduced

The children enjoys playing with sand

Releasing tension, one of the main goals of the trip

The youth camp campus had lots of shades.

Hmmm� wonder what the plans are.

The activities start after breakfast and stops for Friday prayers followed by lunch and a dip in the sea afternoon. Phew that was really short. hehe�

Sleepy head

Still too early in the morning

The MICS guys preparing breakfast. Yes� it was great.

Following the breakfast, the events started. All the special children were involved in various events some include �linmbo' race, �goani' race, �han felhun'� etc. Parents also had fun playing �faiga thalhaa', �bashi' and many more. By the time everyone was tired, it was time for Friday prayers.

I was very delighted to see one of the older special boy attending Friday prayers and more delighted to see a local huraa guy helping him on his way back to camp by taking him on a motorcycle because the youth camp was quite far.

When I was back, the lunch was ready and Yafaau was sleeping. We took this opportunity and went to have lunch while the special parents below looked after two kids.

Well� this little guy is always sleepy.

Or maybe not!

A special family

First dip in the sea

Pa� I feel funny.

Touching his feet on the bottom

Kanifinolhu resort.

Yafaau loves splashing

Loves it

Some others having fun in the sea

I just love the sea

Preparing for the evening tea

Aw. He looks tired and sleepy

Now that the tea was over its time to pack up

Pack your bags

I have observed every special children and noticed tht they adores little children.

Distributing gifts from MICS

MICS's efforts appreciated

Say cheese Yafaau

It was extremely calm this evening

Almost all the people

Its time to go now

Mark (a consultant of CARE Society) giving out the gifts

Yafaau gets his share

Dr Niyaf! Doesn't this guy in red tees look familiar?

More gifts

A moody photo

Great! Our family

Youth campus

The walk to huraa harbour

Huraa

Slow but a steady pace

�Kulhi' at low tide

Uncle Iqbalbe and grand ma saying farewell

First boat leaves

The MICS guys

We were on the second boat

Saying farewell to huraa

Started around 5pm

huraa

Way back

Racing time

Everyone was tired and trip back seemed to be very long.

We reached Malé around 6:30 and were back at home at 7. The trip was organized well and the food was excellent as these were the guys from Maldives In-flight Catering Services. We would like to appreciate MICS for organizing this special trip and CARE Society for inviting us as it did help us in many ways.

2005-09-19T06:37:00.000+05:00

Heaven's Very Special Child

A meeting was held quite far from Earth, It's time again for another birth.
Said the Angels to the Lord above �This Special Child will need much love.
His progress may be very slow, Accomplishments he may not show.
And he'll require extra care From the folks he meets down there.
He may not run or laugh or play; His thoughts may seem quite far away.
In many ways he won't adapt And he'll be known as handicapped.
So let's be careful where he's sent. We want his life to be content.
Please Lord find the parents who will do a special job for You.
They will not realize right away the leading role they're asked to play.
But with this child sent from above comes stronger faith and richer love.
And soon they'll know the privilege given In caring for their gift from Heaven.
Their precious charge so meek and mild Is Heaven's Very Special Child.�

~ Author Unknown ~

2005-09-19T06:10:00.000+05:00

Huraa trip posts coming up soon...

2005-09-14T18:04:00.000+05:00

I was informed Last night at a parent meeting in CARE Society that there would be a picnic to Huraa this friday. It seems that this trip has been offered to CARE Society by the help from Maldives In-Flight Catering Pte Ltd.

This trip could be a great way to get to know other parents more and perhaps share experiences. There are some relatives of SIL in Huraa too, we could take some time to meet them too. Friday is not a holiday for me but I could ask someone for a substitute. We are scheduled to leave Mal� around 7:30 in the morning.

2005-09-05T10:27:00.000+05:00

Our family have been shocked and saddened by the destruction brought by Hurricane Katrina and subsequent flooding along the gulf coast in USA. We hope Linda's(From New Orleans Posted tips and comments at our forum) family are doing alright there. We have the deepest sympathy for those who have lost family and friends. Our very best wishes and encouragement goes to those who have lost so much.

Forum.Yafaau.Info :: View topic - Birth Details: "linda
New user"

2005-08-31T12:18:00.000+05:00

Dishcarged 31082005. Aspiration Pneumonia+UTI

Yafaau discharged today as his fever was not there now. He has been admitted in IGMH since 23 August. Earlier, as usual he was being treated for aspiration and later tests revealed that the had urinary infection of some kind. He was started antibiotics; ampicillin and cefotaxim which had no control over the fever so later changed it to ciplox which reduced the fever rapidly.

Our doctor saw the type of convulsion that Yafaau is having these days while he was at ward in rounds. He did prescribe diazepam(Valium) for 3 days and later stopped as he was already on Clonazepam and Sodium Valproate.

Yafaau's weight looked decreased but his fever is not there and Insha Allah he is going to be alright for this time.

2005-08-24T18:50:00.000+05:00

FEVER of 103F

Yafaau is admitted with a high fever of 103F. This monday morning Yafaau's throat was a bit reddish bu we never expected that he was going to have the highest fever he ever had. It was 101.8F then. Later in the afternoon his fever became higher an rose to almost 102F. After sponging it was reduced immediately. But we wanted to consult Dr.I****l and were able to get to him yesterday morning and he admitted Yafaau instantly for observation. He did have fever upto 103F last night and around midnight became reducing gradually while he had his good night sleep in the hospital as usual. He always sleeps well on the first day of his admission. Since then he didn't have fever till later this evening. The temp. is now 100.7F. We were told that this fever could be aspiration, viral fever or maybe urine infection. Aspiration and viral fever have been crossed but it is a bit too soon to conclude that it is urine infection.

2005-08-21T19:43:00.000+05:00

Vadhoo trip, July August 2005:

A photo from the beach

Introducing Manaal, Kudu's baby

From right: SIL's mother, y.sister Sana and cousin Surufa

2005-08-19T12:54:00.000+05:00

Your Attitude is the Key in managing problems being a parent of a CP child
Accept the child: You have to mentally prepare yourself to love and care for the child quickly. The spastic infant needs hugging and holding as much as other infants do. Get help from a special school and learn how best to handle your child.
Both parents must be involved: Shame and disappointment make some fathers try to get away from the problem. In the long run the situation will only get worse. When both parents share the responsibility, there is a greater chance of making the child adapt to his disability. There is less stress in the household.
Don�t isolate yourself: When there is a spastic child in the house it stirs many kinds of reactions in the social circle: curiosity, pity, a patronising attitude, and genuine concern. These might not be pleasant. But you have to learn to tackle these. Don�t avoid people, especially those you feel mean no harm. When asked about the handicap, explain to them in a simple and straight manner. Don�t lie about it.
Accept Help: While you should not to try to exploit anyone who is willing to help, do not get to the other extreme and feel that no one can care better for your child than yourself.
Be committed but not shackled: A spastic child needs your help more than normal children do. But that does not mean that you have to spend every waking minute at the child�s service. In India, where there are many disadvantages, there is one blessing. Members of the extended family can give support. Help can be hired. Parents should take time off for themselves each day so that caring for a spastic child does not mean complete bondage for them.
Train for social acceptance: One of the reasons for offering any child education and cultural training, is social acceptance. A CP child must be encouraged to mix with people, pick up social skills (picking up things in a super market, making a phone call, giving directions to get home �). More than pushing the child to do better in the classroom, parents must involve the child in acquiring social skills.

source: http://www.webhealthcentre.com/general/cp_parent.asp#init

2005-08-17T19:18:00.000+05:00

After the infant�s death in 2000, Beth Israel Deaconess Medical Center made a number of changes, including daily group sessions to discuss care. This team, which was not involved in the reported case, met this month. (Globe Staff Photo / David L. Ryan)
A baby's death prompts reforms in care
Boston Globe
The couple arrived at Beth Israel Deaconess Medical Center at midnight to deliver their first baby. Her sister was with them, and the three happily snapped photographs to document the momentous event. ''We were at what I thought was the best possible hospital," the woman recounted.
Liz Kowalczyk
August 17, 2005
-->

A baby's death prompts reforms in care
Rare article recounts errors and response
By Liz Kowalczyk, Globe Staff August 17, 2005
The couple arrived at Beth Israel Deaconess Medical Center at midnight to deliver their first baby. Her sister was with them, and the three happily snapped photographs to document the momentous event. ''We were at what I thought was the best possible hospital," the woman recounted.

Hospital staff noticed that her blood pressure was high, but blamed pain from her contractions. Later, a resident noticed an unusual fetal heart rate on the monitor. But she could not grab the attention of the attending physician, who had been awake for 21 hours and was running between several patients.
''There was panic in the air and panic in the room," the woman said in an article published today laying bare failures that contributed to her baby's death seven hours after her arrival. ''Looking back, had I just gotten up and yelled out in the hallway, right outside the door, I feel like that would have made something different happen."
In a remarkable example of public disclosure, Dr. Benjamin Sachs, the hospital's chief of obstetrics and gynecology, describes numerous judgment errors and miscommunications in the case in today's Journal of the American Medical Association, one of the world's most widely read medical journals. His report highlights how medical mistakes occur, often because of an accumulation of smaller miscues, and the changes his department adopted in the aftermath.
The case, which occurred in November 2000, became a ''burning platform," he wrote, resulting in ''a major reorganization of the way care is provided." The hospital hired airline pilots to train the staff in teamwork and conflict resolution and limited obstetricians' workloads. Since then, fewer mothers and their babies have suffered complications during childbirth, and legal claims also have declined, though it's not certain that the changes caused the drop.

The patient, referred to in the article only as Mrs. W, suffered massive blood loss, required an emergency hysterectomy, and spent three weeks in the hospital. In the article, Sachs apologizes to the family, putting into bold practice the growing belief that admitting mistakes and apologizing for them is essential to improving a flawed healthcare system.
''It's an extremely powerful article," said Dr. Catherine DeAngelis, the journal's editor-in-chief. ''Doctors can learn from this."
Sachs said in an interview that he decided to describe the mistakes publicly, even though doing so is risky for Beth Israel Deaconess, which delivers 5,000 babies a year, because he wanted to send a ''national message" about the necessity of owning up to terrible results and about the power of teamwork training, which many US hospitals now are adopting. Sachs recently formed a company with the hospital's malpractice insurer to train doctors at other hospitals in teamwork, consulting work he and several other Beth Israel physicians are paid for.
He also wanted to convey how proud he is of the department's doctors and nurses for ''totally changing the way we provide healthcare."
Yesterday, Paul Levy, the hospital's chief executive, sent an e-mail to staff urging them to read the journal article. It is an edited transcript of a discussion among Mrs. W and her husband, her doctors, Sachs, and specialists. The family declined to speak to the Globe, and the hospital did not make available the doctors, who also are unnamed in the article.
''I saw great suffering in this case," Sachs said in the interview. ''I met with the family on a daily basis as they sat outside the ICU. I was the recipient of their anger, their appropriate anger."
That night in November 2000, Mrs. W's regular obstetrician was not on call, but the doctor made arrangements to have her patient given the drug misoprostol, which triggers labor, because she was past her due date. Staff members gave Mrs. W the drug at 10 p.m. and sent her home, despite slightly high blood pressure. Sachs said in the article and in an interview that she should have been monitored in the hospital, but that ''it was a very busy night."
On the way home, Mrs. W felt contractions and returned to Beth Israel Deaconess.
When doctors admitted her at midnight, her blood pressure had risen even higher, raising the possibility of preeclampsia, a condition that can lead to serious complications including separation of the placenta from the uterus and even fetal death.
Between 4 and 5 a.m., doctors missed a chance to stop the tragic cascade of events, when the resident, a physician in training, did not go above the attending physician with her concerns about the baby's unusual, up-and-down heart rate. Sachs believes the physician's judgment may have been impaired because he was on duty for so long, helping create a condition called ''vigilance fatigue," or a loss of objectivity that can occur during prolonged, intense monitoring of a situation. He said doctors should have performed a caesarean-section delivery by 5:30 a.m. ''This would probably have resulted in a live birth without complications," Sachs wrote.
When doctors transferred Mrs. W to the operating room for an emergency caesarean at 6:45 a.m., they found her placenta had separated from her uterus, and her uterus had ruptured. The baby, a boy, was stillborn. In the article, Mrs. W said she remembered her husband telling her, '' 'He didn't make it.' And I said 'I know,' because I had that sense."
Sachs said he and other Beth Israel Deaconess doctors analyzed the case immediately, and he felt the hospital was responsible. He pushed for an immediate settlement, before the family sued, which Lawyers Weekly reported as $2 million in a 2001 article.
And the department began to reshape itself.
The Risk Management Foundation, the malpractice insurer for doctors at Harvard teaching hospitals, asked Sachs if he'd try an airline industry program called crew resource management, widely credited with reducing plane crashes. He hired two pilots to train the staff in such skills as the ''two-challenge rule:" a staff member who disagrees with a colleague's decision politely states his or her concerns twice -- and then seeks a superior if not satisfied. Such training could have helped the resident in Mrs. W's case go above the attending doctor.
The department set up three types of teams. The core teams treat patients, while a coordinating team led by a nurse and senior physician oversees the core teams' decisions and workload. A contingency team is activated for emergencies. The unit holds at least two team meetings a day to discuss the plan for all patients. Previously, when doctors and nurses changed shifts they updated only replacements about their specific patients. Now all staff are responsible for all patients, Sachs said.
The hospital prohibits obstetricians from caring for more than three patients in labor at once. Sachs also encourages doctors to sign up for 12-hour, rather than 24-hour, on-call shifts. But the hospital has not gone as far as to mandate the change, and he acknowledges some physicians oppose shorter shifts because they would be on call twice as often.
According to Sachs, the number of lawsuits, pre-lawsuit claims, and cases that the insurer believes could result in a claim against the hospital's obstetricians for severe complications dropped to four in the three-year period ended last September, compared with 13 for the three years before the department adopted teamwork training. Since 2000, the proportion of mothers who experienced an adverse event, either avoidable or unavoidable, dropped to 5.3 percent from 6.3 percent. The hospital's rate of adverse events during labor and delivery is the lowest among 20 other medical centers in a national database, Sachs said.
The Journal of the American Medical Association did not print these results because the hospital did not establish cause and effect through a randomized trial.
While the ''data is not definitive," agreed Dr. Allan Frankel, director of patient safety for Partners HealthCare, the parent organization of Brigham and Women's and Massachusetts General hospitals, he said highly reliable industries such as nuclear power and the airlines all consider training in teamwork essential to reducing the number of accidents. ''This will be seen as essential" in medicine, he said.
As for Mrs. W, three years after her disastrous hospitalization, she reports in the journal article that she has almost fully recovered physically but still is up and down emotionally. She and her husband have adopted a healthy child.
� Copyright 2005 Globe Newspaper Company.

Link: http://www.boston.com/yourlife/health/children/articles/2005/08/17/a_babys_death_prompts_reforms_in_care/

2005-08-16T17:18:00.000+05:00

We came back on this 13th and I started going to office today. Will try to update about Yafaau's condition asap.

2005-07-16T21:57:00.000+05:00

Gallery login Update

The problem with Gallery is still there, when loging in from the gallery takes you to a page not found! But you can log in through forum and visit gallery through the link in the forum itself.

2005-07-16T20:49:00.000+05:00

We have recieved the new book The Pathway to Wellness-How to help your brain injured child by Glenn Doman & the staff of the Institutes of the Achievement of Human Potential by mail this week. The Pathway outlines what you need to know, what to do, and what not to do in the areas of movement, intelligence, communication, social growth, nutrition, water and liquid balance, environmental factors, and medication and surgery. This powerful Pathway provides parents with the tools to really help their brain-injured child. We would like to thank www.iahp.org for sending this book to us for free. We sure will make good use of it.

iahp.org : : Straight Talk About Brain Injury: "Straight Talk About Brain Injury
Categoria: News AUTORE: JANET GAUGER
The Institutes newest book, The Pathway to Wellness?How To Help Your Brain-Injured Child, has been embraced by parents and professionals for its direct and clear look at brain injury and what parents can do to help their brain-injured children.

This 48-page softcover book was written by the entire staff of The Institutes in order to give parents the tools they need to provide real help to their brain-injured children.

The book includes succinct histories of eight children from around the world who have benefited directly from the programs of The Institutes. Each demonstrates improvement in specific areas covered in the book.

You can purchase the book by visiting: The Pathway to Wellness

The Pathway To Wellness?How To Help Your Brain-Injured Child, has already been published in Japanese. Plans are underway to publish it in Spanish, Italian, French, Danish, and Norwegian.

It can be purchased (in English) through the Gentle Revolution Press.

outlines what you need to know, what to do, and what not to do in the areas of movement, intelligence, communication, social growth, nutrition, water and liquid balance, environmental factors, and medication and surgery."

2005-07-11T21:53:00.000+05:00

There is a problem with logging in to the gallery. I'll try to sort out the problems soon. We are preparing to visit Yafaau's mom's island at R.Atoll for a local treatment vacation. Will post updates here at the blog.

2005-06-02T19:40:00.000+05:00

Good to see Yafaau back online. Yafaau.info is great.

2005-05-24T23:11:00.000+05:00

I think Yafaau.Org resembles as an organisation. Our website consists information about his condition. I guess Yafaau.info seem nuch more appropriate for our personal use.

Our website is under heavy construction. Please visit here for updates.

Yafaau's new website address is YAFAAU.INFO

Information about Yafaau at YAFAAU.INFO

Change all information about Yafaau from Yafaau.org to YAFAAU.INFO

2005-05-18T20:05:00.000+05:00

Unfortunately YAFAAU.ORG is not Yafaau's website anymore! It was re-registered by another party the same day I got a cc and tried to register it. My contact was unable to get any credit card to pay for the domain in these past days.

Please check this page for updates.

Message sent from mobile number 9607776688

2005-05-15T17:59:00.000+05:00

A Message was received from the mobile number 9607776688 with the message:

my messages from mobile. Sent to blogger.

If you want to send emails from your mobile, send a message like this:
"the@emailaddress.com message to person" to 07766 40 41 42. Please
see http://www.sms2email.com for more details.

2005-02-18T13:14:00.000+05:00

Yafaau has recovered from a bad fever and cold. There is a change in his sleep patterns too. He wants to sleep in an extended or streatched way so that it is easy for him to breath. He started it because he had a runny nose. We are trying but he doesnt seem to coperate. He had grown tall day by day.

While I was handling Yafaau I noticed that he dont look so tiny anymore, he is growing although he is a bit skinny. Face, eyes, hands etc... looks as if he has grown to a little boy now... if only if he could sit up :(

Due to Samiya's mothers health, Samiya's sister who was helping us cope with our life went back to her Island. Samiya is quite lonely these days. I try a lot to be the active parent but Yafaau does differenciate us. This is good, it is a positive sign.

2005-01-03T13:28:00.000+05:00

Here is the largest collection of photos on the internet about the Tsunami Tragedy in Maldives

http://www.loabigothakah.com/lgg

2004-12-27T17:17:00.000+05:00

The Earthquake that stunned Maldives 26 dec

http://www.maldivianunderground.net/tsunami/

Read the article and photos (c) Jawish Hameed.

Since 25th Yafaau has had a cold and runny nose with coughing. The electricity was cut off since then till 01:00 Midnight. As with some houses our house was among few places which had wires from STELCO blown off by short circuit.
For those who are SMS'ing us, thank you. We are doing fine, but there are people who need help. Mostly people from Islands. If you are a local, Visit Iskandhar School for volunteering. If you have local relatives try contacting family for donations. If a foreigner, thanks again for your concern. perhaps leave a message in comments for the families effected

2004-12-13T16:47:00.000+05:00

Stridor followed by coughing and fever 13122004

Yesterday we noticed Yafaau was having some kind of discomfort and was not feeling as usual. His throat sounds had increased, started coughing and today morning he had a temperature of 100F! We gave him 3ml of panadol and the fever subsided quickly so he went back to sleep.

We did not start a new food or he is not aspirated to our knowledge. We will make an appointment tonight to make sure. Last time when he acted this way admitted him and started antibiotics for his fever.

We still go to Care physio, but there is no news from IGMH regarding Yafaau's Special seat. It needs adjustments so we are not putting him in these days. With splints in use we are happy with the result as it has a positive impact on his ankles development.

A lot of things are happenning, its a busy world, because its busy I'm sometimes left alone. Sometimes I wonder I am regarded inferior by friends, but I'm not. And thats how I would be.

2004-12-01T16:16:00.000+05:00

Special Seat adjustment

Insha allah this month we are going to re-assess the Special seat and adjust some settings as Yafaau has grown taller day by day.

2004-11-19T21:43:00.000+05:00

Yafaau's Weight

We are worrying quite a lot about Yafaau's weight. He hasn't gained enough. He's only 8k and he is 1yr 10mnts now. Yafaau is still on semi-solids because he couldn't swallow solids, he chokes. We have tried many times to give him solids little by little but no progress. Its been a while though. We have stopped for about a month but am thinking of introducing some granules in the food again in the hope that he would learn how to swallow someday. We will try and try.. someday he will learn insha allah.

The physiotherapist at Care Society is on a trip to the Islands to help other children. So we do the exercises at home.

2004-11-14T16:49:00.000+05:00

Discharged EID MUBARAK. 14 Nov 2004

Yafaau discharged after 3 days. He didn't show signs of aspiration but had fever for sure and the lab tests showed he had an infection. He is ok now. There is no fever today and takes food. We were very happy because two of Yafaau's paediatricians seperately visited us at the ward. They were happy to talk and gave good advices on handling situations if he gets aspirated...

Tips on good Doctor/patient/parent relationship
Always ask questions and you will get a reply, never come out of consultations with a question in mind. Share your thoughts and what you feel with doctors, they will surely share the same.

Eid Mubarak to you all.

2004-11-12T18:40:00.000+05:00

ADMITTED: High Fever, suspected aspiration... again!

01:40AM
We decided to goto casualty because of the long holidays in line. After seeing Yafaau, docs decided to admit suspecting of aspiration.

06:50PM
Fever had subsided, the last reading was 98.6F The result of the tests confirms that there was an infection. But our doc. confirmed that it was not due to aspiration. Insha Allah we hope we'd get discharged tommorrow of there is no indication of fever again.

Last night we met one parent who's child had both kidneys failed. The child was around 6months and they had no hope for their little baby. They were to depart today to India for further evaluation. It would be hard to cope with the heartache they had knowing that they are to loose their baby soon. I tried giving the father some hope but was difficult as his knowledge of healthcare was limited as he was a hard working Islander.

We were very saddened althought we didnt know their family, island or home but we did encourage them and wished them good luck in their trip and geve some useful tips about Kerala.

When we thought of Yafaau we were happy that he is going to be with us and not like them and it gave us more hope to get our life going with Yafaau, rather than without him.

2004-11-11T18:47:00.000+05:00

Last night I had to work late because of Nov 11 decorations when Samiya rang up to me and said that Yafaau had a bad fever and is exessively crying. It was midnight when I could come home and we couldn't consult doctor at that time. And worst, today is our republic day and more holidays follows on. Couldn't contact with our Doctors by phone and even the clinics are closed. Frustrated but we are doing what we can to ease Yafaau even for a little while. We do keep a close eye on him. Making sure he never aspirates, vomit or show signs of discomfort. We give him Panadol 3ml 6hourly. Still Fever didnt subside.

2004-11-06T20:40:00.000+05:00

I would like to take this opportunity to post this article at our site. Just to remind all of the imprtance of simple things.

HOW CAN I HELP?
When a child is diagnosed with cerebral palsy, the parents face many new emotional and physical demands. In the initial years they have to learn to cope with the special needs of their child. Parents also have special needs themselves which require special understanding and support from family and friends.

HOW CAN RELATIVES AND FRIENDS HELP?
Talking With The Family
Keeping an open relationship with friends and relatives is one of the most effective ways to reduce the pressure on parents of a child with a disability. The following suggestions may help you to develop the type of communication that the family will appreciate:
Be open and honest about your own feelings about the child when speaking to the child's parents.
Listen actively when you talk with the child's parents (more than "hearing" what the parents have said "think about what they tell you and what they may be trying to tell you").
Keep communication lines open. Be available to talk, to listen and to encourage the child's parents. For example, arrange a time for a coffee and a chat.
Ask questions. If you do not know what parents need from you, simply ask them.
Allow more time than usual for tasks to be done. Be patient with the parent and child. The physical disability associated with cerebral palsy means that tasks take more time and less speed. For example, it takes much more time to get in and out of the house and car.
Accept the parents' honesty about the problems their child has and may face in the future. Parents will not lie about their child's disability as they have nothing to gain from it.
You may want to more fully understand the child's strengths and needs. If you feel your relationship with the parents is very close, you may consider asking the parents if you can go with them to a session with therapists or a medical practitioner.

Dealing With Denial
One of the most difficult things for parents to deal with is the denial of their child's diagnosis from family and friends. Worrying about how to deal with the reactions of their own relatives and friends creates further pressures for the parents of a child with a disability.
There are ways of reacting that can create additional burdens for the parents who are attempting to cope with the day to day reality of having a child with a disability. Some of these are:
denying that the child has a problem ("Don't worry, there is nothing wrong"), trivialising the difficulty ("He will grow out of it with time"), or hoping for unrealistic cures ("It is amazing what doctors can do these days"). With parents, denial is part of the normal reaction to the news that a child has a disability. Denial helps avoid the pain and grief associated with the diagnosis. However, with time and support a degree of acceptance can be achieved.
Even though you may not be the parent of the child, it is normal for you also to have difficulties with denial or grief over the child's disability. You may think about seeking support for your own needs and feelings in order to better support the parents and the child.
The opportunity to exchange information and to discuss feelings with relatives of other families will provide you with mutual support in the acceptance of the diagnosis of cerebral palsy. To arrange a meeting or phone contact with another family or to form a small group you may contact a Social Worker at the Cerebral Palsy Association of Western Australia by phoning 443 0211.
Therapy and Medical Appointments
Parents of children with cerebral palsy see many medical practitioners, therapists and other professional and care staff. These people have the best interests of the child at heart when suggesting therapy and courses of action to follow. As parents often face many "unknowns" with cerebral palsy, the professional expertise and advice they receive is very important to them. As a family member or friend it is important that you support the advice and efforts of the professionals that the parents trust and respect, even though you may not agree with what they are doing.
Your acceptance and support is both necessary and valuable to families with special needs.

SUPPORT AND EMPATHY
Parents of children with cerebral palsy have very real reasons for needing extra support from the people who are close to them. This includes both emotional and practical support.

Emotional Support
You can help the family by:
being there to talk, listening to the concerns and frustrations of the parents. Emotional support is the most important support that can be offered by family members.
Practical Support
You can provide reliable help to the parents on a regular basis. Offer help with:
shopping, errands, childcare, chores, and emergency situations ("being there" to look after the other children during an emergency). If you can offer to make regular visits to provide help, the commitment to reliable practical support lets the parents plan their busy schedules more smoothly. You could talk with the parents about going around once a week at a particular time and doing an hour or two of washing or gardening to lessen the load. However, every parent requires differing levels of support depending on their individual situation. The best strategy is to ask "What can I do to help?"

Empathy
Parents do not want sympathy! What they want is empathy, which is an effort by you to understand how they are feeling and what they are going through. To gain empathy, you could try imagining yourself in the parent's or the child's shoes and walking around in them for a while. Below is an outline of the additional stresses identified by parents caring for a child with cerebral palsy. The following pressures are above and beyond the daily hassles and stressful life events that all families experience. Reading them may help you to understand the family's situation better.
Frustration with not knowing what will happen with the child long term and the difficulty of finding clear answers.
Feelings of guild if not continually attending to the extra needs of the child as well as those of other members in the family.
Questioning why the child has cerebral palsy, and if it could have been prevented.
Dealing with the chronic grief and loss for the "normal" child the parent does not have.
Concern about acceptance of the child into the community (school, shopping centres, playground).
Worrying about future planning for adult life (education, employment, having a family, accommodation).
The fatigue that goes with having to continually provide the child with daily care for possibly years beyond normal expectation. Families have difficulties with feeding, dressing, toiletting, bathing, heavy lifting, play, therapy, placing splints on.
The pressure of attending many therapy sessions per week. Appointments may include 3 to 5 days per week at a treatment centre, plus specialist appointments, hospital appointments, reviews and testing.
Less choice or freedom in activities and plans as the special needs of the child must always be met (such as not being able to attend family outings because of therapy; uncertainty about choice of school in the future; will the child be able to attend the local mainstream school?)
Disappointment and frustration at not achieving developmental milestones (not sitting up at expected age, lack of feedback from child due to disability).
Risk of marital difficulties. There can be a lack of acceptance, understanding and support from one partner and additional stresses on the caregiving parent, such as sleep deprivation.
Dealing with the effects on brothers and sisters. How they are feeling or coping with difficulties? Other children may not understand why Mum and Dad spend more time with the child with a disability. Feelings of guilt, rebellion or rivalry are common.
Concern about planning more children due to the unknown causes of cerebral palsy and the unknown outcome of future pregnancies. Parents are uncertain about whether it could happen again to the next child, and whether they could cope if it did.
Feelings of being "trapped" because of the physical efforts and extra organisation needed to go out (from simple family picnics to longer, planned holidays). Traveling for all outings requires regular lifting of the child and of many pieces of equipment (walking frame, pusher, wheelchair). There are concerns about enough room in the car, finding places with appropriate facilities, wheelchair access, toilets, difficulties involved in lifting and positioning the child, accommodation, problems with eating out and specially prepared foods. All of these factors make it difficult to plan long term and makes the family less able to make a simple decision to go out.
Always having to put your own needs aside in order to cater for the extra needs of the child.
Financial difficulties (housing modifications, need for a special car, medication, respite costs, equipment, special toys).
Returning to work is difficult due to treatment and special needs of the child.
Having all of these pressures can make the role of parenting seem a difficult and unending struggle. At certain stages, the stresses can appear particularly high. However, parents won't feel all these stresses at the same time. In fact, just like in any other family, feelings of happiness, achievement and satisfaction can be, and are, enjoyed. The main message is for you to be aware of what life may be like for the family. Most burdens can be lightened by the caring support and open communication that you can provide as a relative or close friend.

WHAT CAN FRIENDS DO TO HELP?
The extended family can include friends who are not necessarily blood relatives. Close friends can offer invaluable emotional and practical support to parents. However, many close friends feel uncomfortable about asking about the child's development. In general, parents prefer their friends to be honest, open and interested in their child's developmental strengths and needs.
Don't be afraid to ask questions about cerebral palsy or the child. Be open and interested in finding out more about cerebral palsy. Follow the child's development with the parent. Remember that parents do not have as much time to socialise as they may have had before. Don't compare your own children with the child with cerebral palsy. Offer emotional or practical support to the parents when possible. Try to keep communication lines open. Make it a habit of simply phoning to say hello.

The Cerebral Palsy Association of Western Australia Ltd published an excellent description of what it is like to be a parent of a child with a disability in the November 1994 issue of the newsletter "Brand News". It is highly recommended that all relatives and friends read the "Welcome to Holland" article by Emily Perl Kingsley. A copy of "Welcome to Holland" is included here for your interest.

2004-11-01T14:17:00.000+05:00

This week we have noticed Yafaau responding more to our voice, he smiles bashfully while we talk to him. We have been talking to him since early childhood. Never stopped talking and sometimes wondered if he would ever respond. Here we are now. Yafaau is responding to our stimulation.

There were times when our relatives used to say "will he understand what you are talking?, will he ever know where you are taking?" Never underestimate these children. They will respond someday and they might just talk tomorrow. Never feel alone with these children, they are always sensing your presence.

Today I saw a referrer by dhivehiobserver and themaldivian to our site! Someone commented about us there.

2004-10-24T17:25:00.000+05:00

BLOGGER IS BACK ONLINE

After some days the Yafaau's blog is back online. I hope to keep updates at this blog frequently, about Yafaau.org.

After the recent admission in the hospital See report Our doctor informed about the option of having a GT Button in Mal�. I think for the time being it might not be a good idea to have it. I have been hearing of some parents who had GT button, regretting of having done that! Well, we'll see... I'll get some more info in this topic and decide later. Yafaau's stridor has been there since his birth and we believe that he haven't got any critical chest infections. And worry if this might cause Yafaau to avoid food orally. We are now formally trying to join CARE Society, although we were seeing the physiotherapist quite often we had to do some more assessments in joining the CDC. He is regularly on medications and our therapeutic exercises and feeling a bit norm in his life. Keep on reading here in the blog.. Insha Allah I would try to blog daily regarding progress and condition.

2004-09-17T19:03:00.000+05:00

Sorry for not blogging but there is an update on Yafaau's Forum at http://forum.yafaau.org/viewtopic.php?t=47 I hope to update that if possible. If you've read already, send us a message http://www.yafaau.org/code/smsindia.htm

2004-08-30T19:58:00.000+05:00

I got all the results from the tests today, Insha Allah we will see our doc tomorrow.

2004-08-23T17:47:00.000+05:00

These days Yafaau had been quite uncomfortable with food, We have started giving him some large granules of foods so that he can change from semi-solids to solids. But he tend to vomit quite often, specially when waking up at night. So we consulted with our doc and had some tests done.

2004-08-21T23:19:00.000+05:00

Convulsions chart for last month uploaded see chart

2004-08-09T21:15:00.000+05:00

I'm a bit busy at office, but sqeeze some time to finish the july convulsions chart.

2004-07-18T22:20:00.000+05:00

Recently Updated links

Convulsions Chart for May and June 2004 Uploaded

2004-06-07T20:27:00.000+05:00

Clonazepam Dose Increased

Last night, after discussing with doctor Yafaau's Clonazepan dose is increased to 1tab BD. His weight was 7.2kg. Still underweight but gained a little to increase the dose. These days convulsions are less but the intensity is high. Insha Allah there will be a decrease.

2004-05-12T16:21:00.000+05:00

Yafaau is recovering from fever. He didn't sleep these days so is spending most of the daytime at sleep. It will take some time for him to adjust back again.

2004-05-07T22:56:00.000+05:00

Yafaau's fever was too high that we went to hospital. When we took his temp at home it was 103F, which was same when we consulted at casualty. Yafaau was given a suppository and were advised to give him panadol and frequent sponge baths if fever was higher. The last time we showed for fever was march.

2004-05-06T17:33:00.000+05:00

This evening Yafaau is a little bit moody, mainly because he had got a temp. Which was around 99.6�F Some panadol helped in getting it down.

2004-05-01T18:28:00.000+05:00

My little Yafaau.

2004-04-19T18:00:00.000+05:00

Yafaau's special seat is now home. Day by day we are increasing the number of times and period we keep in his chair. He is little by little enjoying it altough he is a little moody today. We hope that the special seating will prevent secondary disabilities, insha allah. So you parents with similar conditions please dont wait, get a special seat and start giving physiotherapy for your child. Its never too late.

Yesterday I went to IGMH to get an appointment for my grandma and saw my little Yafaau in a notice board! :) He was in a pic about the physiotherapy dept. there. I will post that picture later this week. hehe..

2004-03-25T20:52:00.000+05:00

Overview: Infants and Young Children with Disabilities

By Barbara Kolucki, ECCD and Children's Media Consultant to the UNICEF-Maldives Office.

2004-03-25T20:38:00.000+05:00

Ukrainian Youth Association (CYM) -- Sydney

"'Podruha Christina Parasyn is enthusiastic, committed, sociable and interested in the world around her. It is only natural then to find out that she seeks out experiences in her professional life that give her the chance to learn new things, meet new people and experience difference cultures. "

2004-03-24T21:28:00.000+05:00

Testing a new talk forum for Yafaau.Org

TestForum

2004-03-22T20:13:00.000+05:00

Yafaau's chair is almost finished. But still there is some work to be done at Physio dept. about Yafaau's head control support. Which is actually not included in the Special Seating.

2004-03-19T13:44:00.000+05:00

Sorry for lack of updates. Yafaau's not having fever and is back to normal. Yesterday's Physio Session he was quite calm and happy.

We are all very sad due to the Thinadhoo Ferry Disaster, we also express our condolences to the families who lost their loved ones. With this disaster I have noted there are condolences from all around Maldives and everyone is expressing their concern on this matter. Thus, the unity of all Maldivians intact as ever before.

Check th latest Updates on Haveeru

2004-03-04T21:05:00.000+05:00

Yafaau's fever is better today than last night. There is a viral fever around Mal� which many children are getting sick. Yafaau is much better today. Doctor prescribed some antibiotics which hopefully will reduce chance of it getting worse.

2004-03-03T14:41:00.000+05:00

Yafaau is sick, this morning he was coughing. SIL just called and she said Yafaau is also having fever, vomiting and having a bad cold.

I'll try to keep you all updated on Yafaau's condition

2004-03-03T08:16:00.000+05:00

I'm a little busy right now but YAFAAU.ORG is online with the kind help from Kit and Julia Chambers from UK.

2004-02-28T09:00:00.000+05:00

I've added a new feature in the blog, "Comment This!" Now you can comment on the blog itself. :) I hope it is a useful feature

2004-02-18T21:08:00.000+05:00

What is a Seizure?

This is a good link to know about seizures.

2004-02-15T19:29:00.000+05:00

There's good news, the special seating for Yafaau had been approved by theemuge. So, today we tried to do the assessment for the chair but Yafaau was awake and quite moody as it was a time when he had woke up from a nap.

This pic belong to Motivation.org.uk

2004-02-04T14:42:00.000+05:00

childraise.com has this page about management of CP children

2004-01-30T12:54:00.000+05:00

Yafaau's Photo Slideshow

2004-01-24T20:42:00.000+05:00

2004-01-24T20:24:00.000+05:00

some pics are available at http://groups.msn.com/LifeofYafaau

2004-01-21T20:00:00.000+05:00

Our 5 Year Anniversary : )

2004-01-09T15:57:00.000+05:00

10-month-old infant dies while being anesthetized

http://www.haveeru.com.mv/?view=2&id=2735

2004-01-06T14:31:00.000+05:00

Changed physiotherapy time because Yafaau is sleeping everyday when we go to do physio. Changed time from 1:00PM to 3:00PM

2004-01-04T16:10:00.000+05:00

Its Yafaau's birthday dho. He is now a Year old! We are very happy that he is here with us celebrating his first year and thankful that his condition hasn't worsened. This day we appreciate the work of lots of people who did their best to keep Yafaau alive and treating the best they could. From his birth, Dr Niyaf, Dr Batti, Dr Afeef, Dr Venkatesh, Dr Priyanthi Molligoda, Dr M. Kunju, Dr Muzna, Dr Kumaravel, Dr Srilal DeSilva, Dr Makuloluwa, Dr Kim, Dr Niyasha, Aathika and many many nurses who even today asks about Yafaau. There are plenty more that I might have not remembered at this time but we owe all of them a big hug and are thankful for all for saving our lovely boy.

Today also Yafaau slept in physio session.

2004-01-03T20:30:00.000+05:00

Last night Yafaau was a bit moody and didn't sleep well. It seems that the old colic prblem is seen again. And today we saw him jerking like the old times! We were very cautious and took a little video from our still camera, called Dr Niyaf and he asked us to see him rightaway. When we went and showed the clip, he commented that it was infact not a problem and it doesnt seem like a seizure or a fit. We were relieved but he asked us to be on the look for a fever or similar symptoms of activity. That night Yafaau once again was crying excessively and we saw that his cry was mainly due to colic! We applied some balm and warmed his stomach and monitored his temperature periodically for fever. In the morning he was fine and back to normal. phew.. that ws close......

2004-01-01T15:27:00.000+05:00

Happy new year to all.

2003-12-16T16:51:00.000+05:00

Yafaau's is quite active this week, from what we have noticed is that he gets startled(we are not sure if this is an actual fit) when he hear loud noises. So we were talking to him on a regular basis and noticed that he responded with little smile: ) So we kept on talking but when we were wispering to him, we were amazed to find him giving us a lovely smile back. These two days we've been try to wisper and he does respond with a smile although his focus is somewhere else. But we are happy, infact very happy. We know his development would be slow but happy tht he is improving day by day.