desumon

Alpha Male
I would like to share with the parents here who just had their world crashed, that it is very important to treat to your kid like he is normal, simply because he/she do not know is is special. Together with treatments, I think it helped our boy improve.

Another thing is we have learnt to accept his condition that we are willing to talk about my boy's issue when friends ask about him. You never know friends may give you valuable information. It is also hard when strangers stare at my kid when he behaves differently. Instead of worrying about how others think of us, we better stay positive and focus on what we need to do.
 

Angelmum

Moderator
Hi all parents, I'm delighted to come across this thread!

Some time ago a friend introduced Glenn Doman's books to us and for the first time we felt very positive about what it could do for my boy. I visited their office at Midview City and the person-in-charge Lawrence advised us to find a carpenter to build a wooden inclined floor (he discourage calling it a slide). We could not find any carpenter willing to make it for us. If anyone has a lobang, appreciate if you could PM us the contact.
frosty-hello.gif
somebody offered but think now taken
http://www.mummysg.com/forums/f144/wtg-glenn-doman-method-wooden-slide-94756/

I did try acupuncture for my girl when she was around 3 years old but she struggled and moved too much so we didn't continue.
I agree with right 中西合并 treatment, it is helpful.
 

rini

New Member
Another thing is we have learnt to accept his condition that we are willing to talk about my boy's issue when friends ask about him. You never know friends may give you valuable information. It is also hard when strangers stare at my kid when he behaves differently. Instead of worrying about how others think of us, we better stay positive and focus on what we need to do.
i've been thinking whether i should tell my friends around me about my son's condition? only a few of close friends know about it. when he was2.5 yr, he can walk, play, laugh just like any normal kid except his development is slower, cant talk, cant really understand what we saying, only gesture no by shaking head and knows how to byebye and sayang, thats all. but he still look normal, nobody know he is special if i dun tell.

now he is 3, and previously admitted icu, he became very sick and when he recover, he forgot everything. now his development is move backward to abt 6mth old baby. seriously im worried that i will bump into friends outside, cos now u can tell he is very very slow.

i have become a full time mom to look after him becos his condition is life threatening and need round the clock medication, frequent admitted in icu too. many ppl thinks tat full time mom job is easy, they always comment i have very good life, no need to work, so easy job, taitai life. i really very pissed when they judge me when they dont know what kind of life im leading. my son is jus like a time bomb, always worried tat one day i might lose him. what kind of "good life" is tis?

but u are right, im worried abt how others look at me, or even pity me. tat is y ive been hesitate to let others know about his condition..
 

Angelmum

Moderator
i have become a full time mom to look after him becos his condition is life threatening and need round the clock medication, frequent admitted in icu too. many ppl thinks tat full time mom job is easy, they always comment i have very good life, no need to work, so easy job, taitai life. i really very pissed when they judge me when they dont know what kind of life im leading. my son is jus like a time bomb, always worried tat one day i might lose him. what kind of "good life" is tis?

but u are right, im worried abt how others look at me, or even pity me. tat is y ive been hesitate to let others know about his condition..
hello, flower.jpg
A lot of normal people dont understand what's life with a special needs child. Most people know Downs and Autism, other too unusual medical illness, they find it hard to understand. You've provided website, Chinese translation, they still catch no ball. :eek:11::swoon:Can be a test of EQ to be with these people.

Some people may pity us, some people just felt we're making up stories, felt diagnosis not serious, life is easy and not that challenging.... we can manage very well. Some had weird thinking that out govt giving us plenty subsidy so we don't face much financial strain. :elvis:

Not telling people in case people look at you in an odd way or ask questions that make us feel sad or frustrated will only be temporary. Your kid will continue to grow, eventually people will still know. If they ask, feel your kid is special, just tell them. Having understanding people around you, can make our lives a little better.

Lately, there are TV shows such as channel 5 "Wishes come true" hosted by Gurmit Singh. They put some people on the show, fulfilling their wishes, trying to create more awareness. More people should know there's a category of special needs people who need help, understanding and support. We dont need special eyes gazing us, we want to step out of our house and blend in. These people are not elderly people who had contributed to Spore. They may not be this country's pillar. 国家的栋梁
They and family unlikely to have a bright future.

Few days ago, Mypaper had an article of a mother caring for her 19-year old CP son full-time.... requires carrying.
Normal people need to know a homemaker is not a tai-tai. We don't enjoy life 'trapped' in the house because our child needed us. I spent 5 years as a homemaker because don't have the heart to place my girl in a domestic worker's hand. Due to financial, we had no choice but to let go and rely on domestic worker. We had to count on ourselves, money wont drop from the sky. Govt is not going to help us ease our financial burden .... lifelong commitment as special needs parents!
 

rini

New Member
View attachment 91585
A lot of normal people dont understand what's life with a special needs child. Most people know Downs and Autism, other too unusual medical illness, they find it hard to understand. You've provided website, Chinese translation, they still catch no ball. :eek:11::swoon:Can be a test of EQ to be with these people.

Some people may pity us, some people just felt we're making up stories, felt diagnosis not serious, life is easy and not that challenging.... we can manage very well. Some had weird thinking that out govt giving us plenty subsidy so we dont't face much financial strain. :elvis:

hi angelmum, yes, normal ppl dun understand. my friends tat knew about my son's condition also cant really understand. sometimes they comment something tat makes me feel like they think his illness is not tat serious, life is not tat tough. i did try to explain again and again till im quite tired of explaining already..

there's one time, my son admitted to icu, one of my friend visit him.. she told me, seeing him lying on the bed reminds her of her nephew when the nephew was younger, was also admitted to hospital cos of asthma. she said her nephew was more pitiful and heartpain cos he was crying and keep saying "want to go home".

i was like, just becos my son cant express he wants to go home, he is less pitiful and i am less heartpain? my son cant even move or breathe on his own then, with all tube on his limbs and throat and was in coma. and to her tis is actually more comforting compared to a child tat still can cry and talk?

i really feel upset and disappointed when my friends think it is not tat tough and serious with a special child. his condition is life threatening. if life threatening condition is not serious den what is consider serious?
 

Angelmum

Moderator
hi angelmum, yes, normal ppl dun understand. my friends tat knew about my son's condition also cant really understand. sometimes they comment something tat makes me feel like they think his illness is not tat serious, life is not tat tough. i did try to explain again and again till im quite tired of explaining already..

there's one time, my son admitted to icu, one of my friend visit him.. she told me, seeing him lying on the bed reminds her of her nephew when the nephew was younger, was also admitted to hospital cos of asthma. she said her nephew was more pitiful and heartpain cos he was crying and keep saying "want to go home".

i was like, just becos my son cant express he wants to go home, he is less pitiful and i am less heartpain? my son cant even move or breathe on his own then, with all tube on his limbs and throat and was in coma. and to her tis is actually more comforting compared to a child tat still can cry and talk?

i really feel upset and disappointed when my friends think it is not tat tough and serious with a special child. his condition is life threatening. if life threatening condition is not serious den what is consider serious?
Understand fully
that's why I said special needs parents will be tested on EQ. Sometimes we're so angry or frustrated yet had to control and tell ourselves, it's ok, don't take harsh or unkind words to heart.
 

desumon

Alpha Male
i've been thinking whether i should tell my friends around me about my son's condition? only a few of close friends know about it. when he was2.5 yr, he can walk, play, laugh just like any normal kid except his development is slower, cant talk, cant really understand what we saying, only gesture no by shaking head and knows how to byebye and sayang, thats all. but he still look normal, nobody know he is special if i dun tell.

now he is 3, and previously admitted icu, he became very sick and when he recover, he forgot everything. now his development is move backward to abt 6mth old baby. seriously im worried that i will bump into friends outside, cos now u can tell he is very very slow.

i have become a full time mom to look after him becos his condition is life threatening and need round the clock medication, frequent admitted in icu too. many ppl thinks tat full time mom job is easy, they always comment i have very good life, no need to work, so easy job, taitai life. i really very pissed when they judge me when they dont know what kind of life im leading. my son is jus like a time bomb, always worried tat one day i might lose him. what kind of "good life" is tis?

but u are right, im worried abt how others look at me, or even pity me. tat is y ive been hesitate to let others know about his condition..

Hi Rini,

I'm sorry to hear abt your son's condition. I also have encountered friends who think my boy's condition is not serious and nothing much to worry abt. But i do have several friends who understand what we are going through. It is mainly becos I explained my boy's condition in detail and build their awareness on such special kids. When i cannot join any social events, at least my friends know why and wont call me anti-social. On the other hand, if they know lesser, they will likely assume things. And if u avoid the issue it will be worse.

In our circumstances, we need support from family and friends. Like asking colleagues to help cover us when we go urgent leave, or asking friends to help babysit while we run errands etc. we need to take the initiative to make our daily life easier. And we are grateful for those offering their help. As for strangers who give the negative stares, we can choose to ignore them cos they are simply strangers.
 

rini

New Member
thanks desumon and angelmum. guess i still need some time to share my son's condition. some ppl are just so insensitive. my relatives and few friends know about it still ask me question like "can he talk or understand me? huh, he cannot eat this or that? not even biscuit or porridge?" ( due to his medical prob, he's strictly on fomula milk and medication. that's all) all these questions make me feel more heartache. which mother dont want to share good food with their child? which mother dont wish to hear their child to call them mama? i dont know if i share my son's condition to evryone around me, how many more such questions i need to answer.
 

Naangfaa

Member
Hi everyone,

I am new to e forum coz recently found out I was expecting. :)

Anyway, the area of special needs is close to my heart coz I have volunteered with a day care centre for the disabled for 7 years and a teacher for children with special needs for 10 years and counting.:eek:

All I wanna say is be strong and allow your child to be as independent as possible. There may be challenging days but do hang in there coz you'll only be stronger after that.

I hope to be able to share opinions and my experiences with everyone here and to learn new things as well..looking forward to knowing all of you!:)
 
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Angelmum

Moderator
Hi everyone,

I am new to e forum coz recently found out I was expecting. :)

Anyway, the area of special needs is close to my heart coz I have volunteered with a day care centre for the disabled for 7 years and a teacher for children with special needs for 10 years and counting.:eek:

All I wanna say is be strong and allow your child to be as independent as possible. There may be challenging days but do hang in there coz you'll only be stronger after that.

I hope to be able to share opinions and my experiences with everyone here and to learn new things as well..looking forward to knowing all of you!:)

Nice to see you here.
Your experience will be helpful to some parents :Dancing_tongue:
 

mummypooh09

New Member
Hi everyone, this is the first time i post in this category. Hope that you all can share with me on my kids issues, cos i really feel quite depressed by it. Im a housewife, stop work since i married, so yeah finance is really big issues for us. I have 2 kids, my girl (3 yrs plus) n a son (22 months). So this is my story...

my daugther she got squint eye (outwards) but luckly its still mild. Went to KKH when she like 2yrs old, the eye specialist told my hubby that her quint eyes due to nasal bone that not yet fully develop. She told us to wait like 4-5 yrs old, but aft the check up i keep on watching her eyes progress... It doesn't get better at all after a year. So we went to TTSH for eye specialist, she told me its passed down genetically. So its from my hubby side >_<" i nvr knew squint can be pass down, or else it will be different thing now. So few test being done n its a positive she need eye surgery on it, but luckly i insist on pursuing the matters when she is 3. If i waited like the KKH eye's specialist (4-5 y.o) by then her sight will be damage, her 3D vision n will need a glasses. Next month my girl is going for the surgery n also a week before will do some final check up before the operation. I feel so sad to think so young yet need to do surgery, everyday my heart is crying.

Then my problem not stopping there, i went for my son's health assesment like he 20months old... The doctor refer us to KK side for further check up, cos he may have delay on his motoric n speech skills. So we did see few specialist, starting for development... N they told me yes he is having a delay on motoric n speech. Then Went for assesment on the motoric, he delayed like 4-9 months from his age sigh.... Then aft that she told me to involve him for EPIC programme, i would love to engange him but few things holding me back. First is no one can take care of my girl, so i cant leave her alone at home. Then main thing is finance, we been struggling each month just to survive... Their neccesity like milk, diaper n their daily food are priority for me. But beside all that i really want him to have some progress especially on speech. He cant say much except nenen when he wants milk, other than that he only can shake head if he dont want the thing i giving him. He can take biscuit n feed himself thou, can drink from straw, can even know how to put out his hands when wearing clothes, plus he can lift up his leg if he sees me with his socks.

Then we also saw specialist at ENT, done some audiology test... They said he have some fluid, but aft a month the fluid had dried... The doc said the fluid caused by flu, since the passage from ear to nose blocked. Nothing can be done n its common among kids til they 7 y.o
Then we also see neurology for his muscle n reflect, he said his normal. But he also comparing my son with my girl, since my girl also have slight delay. But at least she can walk without support at 18 mths, but my son been active walking up n down the bed without support just recently. Previously he only stand n walk without support on the bed n he prefer crawls. So im not so concern on his motoric skills, since he had showed me some improvement aft the few visit. But the neurologist told me, he may wanna do some test on my sons root core or smthg n may need to do brain scanning. He mentioned to me if the brain that causing all of this, he cant help... In other words no cure :'( The moment i heard that my eyes filled with tears n hugged him tightly. Sigh.... I cant afford to pay for this 2 test... Brain scan will cost more than 1k, i dont know abt the root core test.

Anyone having some issues regarding my son? If have do share with me at least i can feel usefull to my son, im so stressed up n sad thinking for both. Especially the young one. I also hope all the mummies here can pray for both of my kids, cos i dont know what im gonna be if smthg bad happens to them. Thanks for listening n God Bless U All ^_^
 

alittlefaith

New Member
Hi Mommies & Daddies, this is my first post and forum. Never thought I would join a forum for this purpose really. I have a 2yo daughter and almost 8mth old son. Our little boy has big round eyes and a smile which melts every ladies' hearts. Thus, strangers showered lots of attention on him everywhere we go and we often tease our little boy of being a lady charmer :) When he was a little bit older, I noticed that he is different from our daughter who is very active and has reached all her milestones early. I thought he is just being a quieter and less playful baby. Then he began missing his milestones... preferred to just lay around and not do anything much. Managed to flip at 6 mths and that's about it. He doesn't kick with his legs nor move a little more to reach for his toys. He is not putting any weight on both his legs and he is not crawling or sitting as he should be. PD said that he has very weak muscle tone (hands n legs) and weak reflexes. We have been referred to KK neurologist for further evaluation coming 5th Nov. I don't know what to expect and I fear for the worst.... I cant help for worry. What tests will be done and do I get a prognosis on the spot?
 
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Pocoyo80

Member
Hi alittlefaith,

I am a mummy to a special needs child and i can truly apprehend your anxiety waiting for an answer to your boy's condition. Let me share my story with my little fighter...

6 years ago, I gave birth to my 2nd boy and never expected that he would have a chromosome deletion problem. In the past, I always took for granted that since my first baby is normal and my 2nd baby will turn out healthy but I was wrong. I cried terribly during our meeting with the kkh doctors and could not at all, focus on those medical terms that were thrown on us. Me and my husband have never expected that our 2nd baby could have a life threatening condition. My son requires a heart operation at 3 mths old and it pains our heart when we saw him post opt. He had so many tube insertion on his tiny and frail body. What follows subsequently was his diagnosis on his chromosome deletion and we were told that he maybe exposed to a long list of possible symptoms that comes with this chromosome deletion. Issues like speech delay, intellectual abilities and many other negative issues were just discussed over that short 30 mins meeting with the genetics specialist at Kkh. We brought him home after 3 weeks admission at kkh and we never look back. I must say that spousal support is very important. We, women are more emotional when we come to our kids and many times, I just lose control of myself during my 6 years journey with him and just broke down easily. I cannot remember how many times I have cried over how helpless I felt over my son's condition. My husband was always at my side and my elder boy also gave me a lot of encouragement to move on. I held a full time job and during the past 6 years, we gave my son the best of all the therapies and I taught him to read, write, practice his gross and fine motor skills, scouring the Internet for help and advice to get him to do his stuff and practice. During the 6 years, we visited numerous specialists in kkh for his various issues. He was at first attending rainbow school at yishun and subsequently moved on to a mainstream child care. I have received countless complaints from childcare teachers about his problems and each time a complaint flies in, I will review what I have done with him and if I can do anything better for him to improve.

I have learnt in my 6 years journey with him that his best mentor is his mum. Although we were flashed with statistics tat my son may not be able to catch up intellectually with mainstream students. I told myself don't look at statistics, focus on what he can achieve. He is starting p1 next year and he still has many hurdles to cross but I strongly believed that every child has their potential to excel. We have to be patient and have the faith in them. I remember a mother of a special needs child once told me.....how much your child can achieve depends on how much effort u put in to nurture him. That's very true .....

Some times when I look back at the past photos, I can't help but cried. I cried for the joy to go through this journey with him....his first step, his first speech.... All these do not come easy and we treasure all these moments with him. One thing to note is that....that kkh doctors tend to flood you with a lot of general info and since every child is different, do not assume that your child will be getting all the conditions. Do your own research and open up to other parents or join support groups. They will equip you with valuable advice which even the kkh doctors can't provide.

Stay strong and positive for your boy. Take care!!
 

alittlefaith

New Member
Hi Pocoyo80,

It must have been a long tough journey for you. Sometimes I wonder if we have been chosen as special guardians because we are the stronger, resilient ones or otherwise.

The wait is indeed tormenting now that we have a date to countdown to.

In the past, there were those moments where I get subtle hints of something not quite right, like a prick on the back of neck, didn’t pain much yet unsettling. Next week, it will no longer be plain wondering but to face the facts and reality. I had so many questions, I felt miserable and I needed so much to speak with someone then. But as I was typing this reply, my mind is a total blank.

I hope I will be able to bring good news next week:we2unsure:
 

Pocoyo80

Member
It is indeed a long tough journey and we still have a long way to go together with him. Sometimes, we just need the extra pat on the shoulder to keep things going.

I used to be a pessimistic person and will fret out over the slightest issues. When the KKH specialist told us about my son's condition, I was lucky that I did not pass out on the spot. When I look back at the early years of his life, I cannot imagine that I have so much courage to face everyone (family members, friends, etc) on his condition. As mentioned earlier, spousal support very important. No matter what happens, both you and ur husband are in it together to face what lies ahead. Have faith in ur boy. Learned to be thick skin and asked for help if in need of assistance. Just remember, having a special child is not the end of the world.

On the flip side of it, your boy could be well and fine. It could be he is just plain lazy and he is testing your patience.

You can PM me if you need to talk to someone.
 

Angelmum

Moderator
Hi alittlefaith,

I am a mummy to a special needs child and i can truly apprehend your anxiety waiting for an answer to your boy's condition. Let me share my story with my little fighter...

6 years ago, I gave birth to my 2nd boy and never expected that he would have a chromosome deletion problem. In the past, I always took for granted that since my first baby is normal and my 2nd baby will turn out healthy but I was wrong. I cried terribly during our meeting with the Kandang Kerbau Hospital doctors and could not at all, focus on those medical terms that were thrown on us.

Some times when I look back at the past photos, I can't help but cried. I cried for the joy to go through this journey with him....his first step, his first speech.... All these do not come easy and we treasure all these moments with him. One thing to note is that....that Kandang Kerbau Hospital doctors tend to flood you with a lot of general info and since every child is different, do not assume that your child will be getting all the conditions. Do your own research and open up to other parents or join support groups. They will equip you with valuable advice which even the Kandang Kerbau Hospital doctors can't provide.

Stay strong and positive for your boy. Take care!!
Hi Mommies & Daddies, this is my first post and forum. Never thought I would join a forum for this purpose really. I have a 2yo daughter and almost 8mth old son. Our little boy has big round eyes and a smile which melts every ladies' hearts. Thus, strangers showered lots of attention on him everywhere we go and we often tease our little boy of being a lady charmer :) When he was a little bit older, I noticed that he is different from our daughter who is very active and has reached all her milestones early. I thought he is just being a quieter and less playful baby. Then he began missing his milestones... preferred to just lay around and not do anything much. Managed to flip at 6 mths and that's about it. He doesn't kick with his legs nor move a little more to reach for his toys. He is not putting any weight on both his legs and he is not crawling or sitting as he should be. pediatrician said that he has very weak muscle tone (hands n legs) and weak reflexes. We have been referred to KK neurologist for further evaluation coming 5th Nov. I dont't know what to expect and I fear for the worst.... I cant help for worry. What tests will be done and do I get a prognosis on the spot?

Hi!!
It is not easy to be a special needs parent. It is tougher when you're in Spore because we do not get sufficient support, affordable therapists, cheaper medical, as well as better SPED education. I have faced disppointments and of course, I had to bite the bullet and move on.

Some people tell me not to give up and said I should give my girl better exposure and learning opportunities. They said do not stop. They said I didn't try hard. If special schools refused to do what they are suppose to do for the past 10 years, do I spend on private therapies and enrichment classes. No, I am not keen. I tell myself and people who tried to give me additional stress that by not having high expectations, no goals set for my girl, I don't get disappointments and failures. I am not really contented with the way my girl is but if nobody in history is able to talk, live independantly, why should I give myself unnecessary headaches and stress? I am worried that my girl is heading towards puberty ...
menses which means my life will be chaotic soon. How many good days do we get as special needs parents? How many days were filled with tears, anger and disappointment?

As a special needs parent, you can find all the resources from school or internet, do within your means to transform and help your child develop. But if you know your child is unable, incapable of doing what the peers are doing or what others expect, do you push her/him, as well as pushing yourself for a tough fight? Worth it? One should maintain a good fighting spirit, never give up easily .... but saying is easy. When one window is closed, another will be opened for you = opportunity??

There's somebody who said, if you can't find miracles, be ONE. He's Nick Vujicic, born without arms and legs, overcame his disability to live not just independently but a rich, fulfilling life, becoming a role model. He's now an internationally known motivational speaker bringing the message that the most important goal for anyone is to find their life's purpose despite whatever difficulties stand in their way.

Can every special needs child become a miracle or legend?

I hope those children who still have hopes to continue fighting. You give up not because you don't love your child and don't want him/her to become better. If you've tried for a few years and received many disappointment, you may want to take a step backwards. To me, it is
BE KIND to yourself and your special needs child. Forget about the preaching of others, especially those who had not been able to think and feel in your shoes. Ignore those harsh comments or unfriendly look from friends, relatives or strangers.

Just my opinion, you don't have to agree. This is how I feel (I call it enlightenment) after being a special needs mum for more than 10 years. You will find this post very demoralizing but if you know I have spent the earlier years with my girl, faced the relunctance of special school to give continous and benefical learning opportunities, not forgetting an uncaring govt ..... forced to employ a maid so as to work and have a stable income about 4 years ago, maybe you'll understand the struggle and 无奈.

Good luck!
Wish you well.
 

alittlefaith

New Member
Sorry, didn’t get a chance to post a reply.

I do not have good news (yet). After initial assessment, we were told that our boy is quite delayed in motor skills development. His motor skills are somewhat of a 4 month old baby. Social and cognitive skills seemed appropriate for his age now. Doc could not get responses from his limbs when conducting the tendon reflex test. Early deduction of his condition has to do with either muscle, nerve or brain control. We didn’t proceed with all the tests required because we went in as private patient and it is going to cost. So they book us another appointment in early Dec for the tests and meanwhile we get a referral letter from Polyclinic for subsidised rates. MRI scan is to wait till my boy is after 1yo. That’s it… another round of waiting again.

Angelmum, honestly I do not find your post demoralizing. I think any mums would want the best for their children. But sometimes we have to be realistic in managing our expectations and knowing that there are limitations to resources available. I do not believe in depending on others and as a matter of fact, our government for help simply because the answers are available for all to see. Just look at those pitiful souls around us in our daily lives… who is there to help? This brings me to the next issue or rather dilemma I have. I am in a fix whether to quit for a better job or stay at home. I am sure many special needs moms been through this too… needed the money for treatment but wants the time to fully care for your child. Still undecided… perhaps after the tests I will get a better idea on what needs to be done for my darling.

Yesterday I was asking my hubby to make a tough choice (i) would he rather our boy has normal IQ but is wheelchair bound for life, or (ii) would he prefer a mobile kid with lower IQ. Hubby chose the earlier while I chose the latter. Suddenly the thought of it made me feel so sad. Sometime I can even sense my boy’s longing to participate in our daily play activities and his frustrations of not being able to… and I wonder if my boy gets to walk, play and run with my older girl… my tears just flowed.

 
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Pocoyo80

Member
Hi alittlefaith,

It is too early to feel despair. If you say your boy's cognitive and social skills seems appropriate for his age, this provides some assurance. No matter what the MRI results turn out to be, It will still provide some form of relief for the long period of dilemma and at the same time, prepare both of you to plan for his treatment/ therapies if required. It could be a blessing that you discover his problem early and can still send your child for early intervention since he is young and all his limbs are in developing stage. I have learnt that some special needs kids were too late for early intervention as their parents were in constant denial and probably their surrounding friends and family keep assuring them that everything is ok.

We also thought about the extreme scenario when we were told of his chromosome deletion. The future looks so uncertain and bleak for him. I was constantly feeling helpless and lost. So many people gave me advices and I decided to pick myself up and go with what we think is best for him. He is your son and u know best on his weakness and strengths. If he needs help, u will just have to grit your teeth and fight the battle with him. I did not quit my job as his private therapies were very costly. But i spend all my free time and my annual leave to cater to all his needs. I just take turns with my husband to practice with him. i still remember we drew up a time table to remind ourselves on the practices that we have to go through with him at home. Besides the required therapies, my boy also has a weak immune system and he was constantly sick. Hence, therapies were always put on hold and we have limited time to practice with him. However, he still managed to take his first step at 16 mths old and his first complete sentence came about shortly after he turned 3 years old. Each time, we went back to see the genetic specialist, we can constantly see improvements in clearing his milestones. We were relieved that we started him early on early intervention and this makes a significant difference to his life.

Do not lose hope and take good care of yourself.
 
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