Friday, January 15, 2010

Experience with Down Syndrome...Dedicated to Mohd Mutqiin Danial

I considered myself very lucky indeed to have the opportunity to live with a Down Syndrome (DS) person in my lifetime and I am sure there are thousands who have the same opportunity....but whether they consider themselves lucky....I don't know.

I have a Down Syndrome brother who is now 28 years old. Some of his cousins and friends are now married, highly educated, worked at large organziations and lived on their own. But for him....he's still the same guy...simple, grown up and loving.

He was born when I was in Form 1, I first saw him in July 1981 during school break, which I immediately knew my brother would be a special guy, a guy which would require me to reach beyond the ordinary.... so I had set in my mind that he will be part of us forever, now and in the hereafter.

Ever since, I had to make sure that everyone around me understands, accepts and loves him as much as they can....families and friends helped and cooperated. We can't expect a DS person to understand us better, it is us who has to sacrifice to understand them choice and no two way about it.

He has been to Mekah a few times and got lost the first time, he then went missing on 2 other occassions in Kelantan and KL.... but he will only go to places that he knew, places that he has been to, places he knew he could get help.

I'm writing just to share my experiences with those interested to know about living with a DS person. Having 28 years of experience would qualify my observations and opinions although I'm not a medical expert.

These are my thoughts;
1. They look the same, very international appearance, famous and well known
2. It goes beyond race, religion, nationality, cast, pangkat or keturunan.
3. Retarded physical and mental development
4. Likes to be loved and loved kids very much
5. They are abnormal, does not qualify for pahala / dosa.
6. Has excellent memory power
7. Could read and write if properly trained
8. Likes to be centre of attention in familiar places
9. Might not like people similar to him
10. Time is not a problem to them, waiting is not a fuss to them.
11. Likes to watch F1 races and football, knew the drivers, the team, the players and the managers too
12. Likes to swim and ride bicycles
13. Likes to, bus, trains and aeroplanes
14. Treat and talk to them like talking or treating any other normal person
15. Can be scared of unfamiliar places
16. Can be moody if what he really wants is not entertained....normally nothing extraordinary
17. Can be clumsy sometimes, need to be extra watchful....esp riding speed and hot water
18. He likes to drink lots of plain water, at least 5L per day
19. Holds on to a make sure all promises made are fulfilled
20. He can be prone to sickness and illness but always recovers
21. May need help to do some self cleaning esp body hair cut and trims, nails and ear waxes.
22. They like to look good
23. Has his own imaginary world, fine as long as not damaging
24. Can be angry at times, but always be patient
25. You need to let him know how you, angry
My advise is that treat and love DS people well and they will treat and love you well. My only hope is that no one will take advantage of his condition....but I can't guarantee that, I can only hope and pray.

I strongly believe that a DS person holds direct access to Heaven...for him and those who loved and cared for him during his lifetime.


the principal said...

kak dada,

tq for sharing...

i'm currently pursuing a diploma to qualify as a trained teacher for special needs children-autism, ADD/ADHD, dyslexia...DS is not the module, but would love to find out ways to teach them; atleast basic life skills...

DadaIQ said...

Hi Principal
Not many would want to learn about these special children. But these children need teachers who are specifically trained in this area to help them. Would love to share our experiences with you. Just let us know.

Uncle said...

Dear IQ.
Thanks for sharing! At least aku belajar 1-2 yang aku tak tahu selama ni...

DadaIQ said...

Dear Uncle,
You never know....the knowledge and awareness can be useful.

MrsNordin said...

From my observation, DS children as always surrounded by loving families. The parents want them to be included in all the other normal children's activities but they will remain "different" from the rest.

I'm sure it wasn't easy for your parents to bring him up, but given that your brother is now 25 years old, that speaks volume of your parents' commitment.

Hey, ordinary children also have their own set of problems, sometimes even worse than DS children. So, what's important is acceptance for who they are.

Thanks for sharing, IQ. This is kinda touching entry.

DadaIQ said...

Dear Mrs Nordin,
Thanks for the words...yes, they will remai different & my parents' commmitment is something I cannot describe with words...

Mat Yu said...

He love to listen Kelantan FM all the time even he's not around... :D

DadaIQ said...

Dear Mat Yu,
Yes agree....actually he can be at two places at any one time!!!

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