Need to vent: How others look at your special needs child

[yummymummy]

Anyone can share experiences of how pple treat your special needs baby/child in public?

I got very pissed with a lady who just stood by Vera's cot and stared and stared, like looking at an alien. Didn't say anything just stood there and stared. So rude!

And their favourite question is "How many months?" cos Vera looks so tiny.

I wonder if I should give them the answer they want to hear 6 months - or the real answer - 16 months - which will lead to more questions - aiyoh so small?

 

[Domique]

If I were you, I would just say 6 mths to say all the explanation to a nobody and walk away.

Ignore the ignorant people!

Anyone can share experiences of how pple treat your special needs baby/child in public?

I got very pissed with a lady who just stood by Vera's cot and stared and stared, like looking at an alien. Didn't say anything just stood there and stared. So rude!

And their favourite question is "How many months?" cos Vera looks so tiny.

I wonder if I should give them the answer they want to hear 6 months - or the real answer - 16 months - which will lead to more questions - aiyoh so small?

 

[Angelmum]

Anyone can share experiences of how pple treat your special needs baby/child in public?


And their favourite question is "How many months?" cos Vera looks so tiny.

I take gal out in a stroller, fav question is 'how old'? Common insensitive exclaimation upon seeing her in a stroller 'so big still sitting in stroller'! What can we do, nothing! Can we stare at them, YES, I DID! Some ppl never say anything but their eyes were tracing us with those kind of unfriendly or grimace expression. Some heard gal suddenly let out a yell (happens rarely but ppl dont know, thot I cant discipline gal in public) would ...... guess most ppl know the answer.

ONLY once .... an uncle said ''so big still sitting in stroller' said sorry to me when realised gal abnormal.

Do we have to pretend we are not hurt by their words or behaviour ... why shld we? We are human, we got feelings. are we suppose to confine ourselves at home just becos our kids unusual? are we to vent our anger on our child just becos they made our lives so different? I believe gov need to educate ppl, let them see more such cases on TV so ppl dont behave so tactless.

Few days ago, the social worker in gal sch told me to switch to a light weight wheel chair to avoid all these and said this is one of the way to give our child their dignity .... wheel chair cant recline and so stiff/upright!

 

[yummymummy]

why should you change to lightweight stroller just to accommodate others? Their attitude is the one that needs to be changed.

The best reaction dear parents of normal kids is to smile and (genuinely) say she's (he's) a beautiful girl/boy. If genuine, if not, please don't stare, just walk on and don't kapo.

 

[Angelmum]

please dont't stare, just walk on and dont't kapo.

ya, no need to be so curious and kpo.
ppl in Sg seldom see special needs child cos a lot afraid to bring kids out to face such situations .... hiding at home.

Sometimes got train commuters simply cant control their curiosity start chatting with me ....some even recommend I go their church for healing .... :elvis::weconfused:

wonder should I stick a handicap sign on my stroller .... .... Gal can walk but not long :err:

 

[stonston]

Actually there are larger sized strollers meant for larger size kids. If budget permits, can switch to those. I think your gal will be more comfy in those too

 

[jasobias]

Anyone can share experiences of how pple treat your special needs baby/child in public?

I got very pissed with a lady who just stood by Vera's cot and stared and stared, like looking at an alien. Didn't say anything just stood there and stared. So rude!

And their favourite question is "How many months?" cos Vera looks so tiny.

I wonder if I should give them the answer they want to hear 6 months - or the real answer - 16 months - which will lead to more questions - aiyoh so small?

U shldnt bother being nice to these pple.Next time someone is staring blatantly ..just ask..wht r u looking at ?at the how many months questions just nod n walk off.U r not obligated to share ur baby's details with strangers.N no need to feel bad abt it..u r just protecting ur child!!!

 

[yummymummy]

ya, no need to be so curious and kpo.
ppl in Sg seldom see special needs child cos a lot afraid to bring kids out to face such situations .... hiding at home.

Sometimes got train commuters simply cant control their curiosity start chatting with me ....some even recommend I go their church for healing .... :elvis::weconfused:

wonder should I stick a handicap sign on my stroller .... .... Gal can walk but not long :err:

I agree! I seldom saw special kids either while growing up, so was really bolt from the blue when I had Vera.

Yes some distant relatives came up to me and start holding my hand and started closing eyes to pray...I respect all religions, but that really surprised me!

 

[uddermummy]

i think most people will understand if you tell them your bbs' conditions when they stare. they will prob then feel embarrassed for staring.

for the very rude ones, maybe you can tell them that it upsets you when they stare. these people, must tell them straight in the face cos any subtlety is lost on them.

some pple really never think one loh.

 

[Angelmum]

Actually there are larger sized strollers meant for larger size kids. If budget permits, can switch to those. I think your gal will be more comfy in those too

my 3 wheeler is gigantic

but in ppl's eyes, it is still a stroller meant for normal child irregardless its size. Also bot an umbrella MacLaren meant for big special needs child but not as comfy as my 3 wheeler cos cant recline.

 

[Angelmum]

for the very rude ones, maybe you can tell them that it upsets you when they stare. these people, must tell them straight in the face cos any subtlety is lost on them.

:nah: :nah:

 

[sunflowerlady]

Anyone can share experiences of how pple treat your special needs baby/child in public?

I got very pissed with a lady who just stood by Vera's cot and stared and stared, like looking at an alien. Didn't say anything just stood there and stared. So rude!

And their favourite question is "How many months?" cos Vera looks so tiny.

I wonder if I should give them the answer they want to hear 6 months - or the real answer - 16 months - which will lead to more questions - aiyoh so small?

i feel you shld ignore them..be it is 6mth or 16mths..it is really nthing gt to do with them..you dont owe anyone any explaination...so what if you told them???

it is already so rude to stare and stare so i find it is useless telling them..is frustrating to hear more question from them...

dont wori too much..juz be the best mummy for Vera.

 

[menkesdisorder]

I totally understand how you feel. I have been super annoyed whenever I bring Mathias out. I even told my husband that we should record a message on a player and blast it at those who stop to stare at him. "STOP STARING & GET LOST!!!" Do they not understand that it is already very difficult for us.... stop being so freaking ignorant and dumb. Be more sensitive to others needs. Lately I just ignore these silly people. Will not even let them bother me. I told myself I will be happy with my child when we are out. ;-)

 

[yummymummy]

I see Matthias has a nasal feeding tube? Have you considered getting a stomach g-tube? People stare less now that there's no tube on Vera's face.

 

[Angelmum]

I totally understand how you feel. I have been super annoyed whenever I bring Mathias out.

I see Matthias has a nasal feeding tube? Have you considered getting a stomach g-tube? People stare less now that there's no tube on Vera's face.

I think a lot of ppl curious but bringing inconvenience and discomfort to us is unbearable.

Lately, gal developed a habit of screaming and yelling ... husband complaining he can't tolerate. I happened to see STOMP yday, there's an insensitive stomper who cant tolerate a parent playing/tickling his child on board train. One fine day if I end up 'famous' how?

 

[menkesdisorder]

his doctors don't advice it. They did mention if he kept regurgitating then there might be a need to do that. But at the moment he is more settled and has stopped regurgitating every feed. I think they might not want to agitate him too much as his life span is a ?. From what we know, max lifespan is 3 years. No one knows as it is a very rare genetic disorder. At the moment, we can only cope when things happen. Can't predict nor do the doctors know what to expect. He just started on the feeding tube. Previously he was able to drink and eat normally but milk n food kept getting into his lungs when his mouth control deteriorated. It is part of his brain deterioration. I guess we will see what his Genetic Doctor advice before making any changes.

 

[stonston]

Actually, I think it's how society in general was brought up.

I recall during my S2 year, the literature book we did in class was Red Sky in the Morning. It's about a girl who had a baby brother with hydrocephyles (forgot the spelling). But basically the baby had swelling in his brain & would not survive past 1yo.

The book talked about how life was 'normal' without the baby, the girl's emotions & reactions as she saw her baby brother being able to do many things that normal babies could. How people stared at her when she brought her brother out for a walk. How she defended her brother with all she could. How her little brother had changed her into someone with compassion and patience. She then babysitted a girl with down syndrome and learnt to look past disabilities.

Honestly, I was only 14yo when I first read this book & it really made an impact on me. It changed my perspective on children who are special. & it made me realise that there are others out there who do not need to be treated the way they are. That's one of the reasons why I'm into education & I'm now trained as a special needs officer in school.

If you have time, do pick up that book. Recommend it to everyone. It's not their fault they do not know anything and stare. It's our fault for not educating them.

 

[susinlim]

Dear all,

I'm sorry to hear about the unpleasant situations you dear mummies face in the public.

The discussions ring very much a bell... my friend with a her baby with a feeding tube thru her nose got all the stares as well. Just to share some personal thots on our side.

We were discussing about it together with another friend who has no / very limited special needs background (you see, my mother friend has a girl with a disorder & me being a special ed teacher). When she heard about my mommy friend's encounter, she advised agitatedly that my mummy friend should shoot back "what is there to stare" kinda response. We on the other hand were very placid about it cos we believe LOVE is the best answer & response to all those who have not learnt or known what a SPECIAL LOVE is.

We accept and love all children as they all are: special & unique - whether they have the extra stamp of "special-ity" or not. To all the starers, we respond and reply with "I accept and love my child who is as special & unique as other children", and we answer your stares with my love of my child & with the understanding & forgiveness that you guys need to learn to see the meaning of love with more light...

 

[epicurean]

No offense but allow me to be candid. That would be an ideal response to people and strangers gawking at our special needs children but in the practical reality of special needs parents, we've got enough on our plates to worry about constantly (on a daily basis and in the long term) without having our children being treated like exhibits to be stared at.

On that note, would like to share something another special needs parent (from US) wrote:

Where Are the Parents?
By Sue Stuyvesant, Parent

Hey everyone. For those of you who don't know me (I'm only an occasional poster)
I am mom to Michelle, 9 years old, microcephalic, athetoid/spastic CP, cortical
visual impairment, seizure disorder -- and CUTE! OK, now for the reason I'm
posting.

To make a long story short, earlier this week a question was asked by some
nitwit official as to why there weren't more parents (of special needs kids)
involved in the local PTA and other issues that have come up that directly
involve our kids. His question, which was passed on to me was, "Where are the
parents?" I went home that night, started thinking - and boy was I pi**ed - and
banged this "little" essay out the next day on my lunch break. By the way, I
took copies of this to the school board meeting that night, gave it to a couple
of influential people and it WILL get around.............

Where are the parents?

They are on the phone to doctors and hospitals and fighting with insurance
companies, wading through the red tape in order that their child's medical needs
can be properly addressed. They are buried under a mountain of paperwork and
medical bills, trying to make sense of a system that seems designed to confuse
and intimidate all but the very savvy.

Where are the parents?

They are at home, diapering their 15 year old son, or trying to lift their 100
lb. daughter onto the toilet. They are spending an hour at each meal to feed a
child who cannot chew, or laboriously and carefully feeding their child through
a g-tube. They are administering medications, changing catheters and switching
oxygen tanks.

Where are the parents?

They are sitting, bleary eyed and exhausted, in hospital emergency rooms,
waiting for tests results to come back and wondering, "Is this the time when my
child doesn't pull through?" They are sitting patiently in hospital rooms as
their child recovers from yet another surgery to lengthen hamstrings or
straighten backs or repair a faulty internal organ. They are waiting in long
lines in county clinics because no insurance company will touch their child.

Where are the parents?

They are sleeping in shifts because their child won't sleep more than 2 or 3
hours a night, and must constantly be watched, lest he do himself, or another
member of the family, harm. They are sitting at home with their child because
family and friends are either too intimidated or too unwilling to help with
child care and the state agencies that are designed to help are suffering cut
backs of their own.

Where are the parents?

They are trying to spend time with their non-disabled children, as they try to
make up for the extra time and effort that is critical to keeping their disabled
child alive. They are struggling to keep a marriage together, because adversity
does not always bring you closer. They are working 2 and sometime 3 jobs in
order to keep up with the extra expenses. And sometimes they are a single parent
struggling to do it all by themselves.

Where are the parents?

They are trying to survive in a society that pays lip service to helping those
in need, as long as it doesn't cost them anything. They are trying to patch
their broken dreams together so that they might have some sort of normal life
for their children and their families.

They are busy, trying to survive!

Sue Stuyvesant 10/15/96: Permission to duplicate or distribute this document is
granted with the provision that the document remains intact.

Sue passed away in October 2003. Michelle passed away a week before she as to
turne 18 in September 2005.

 

[yummymummy]

thanks epicurean for sharing this: it is so true.

don't you realise how this special needs forum is so much less active than the normal motherhood forums? I believe it's because we are just too busy to come to the forum. I often visit the motherhood forums and think, wah, mummies out there have so much time to chat chat on forums.

Just to share an experience with a certain senior Dr. On our first visit, to see her about Vera's kidney function, she interrupted and said, "You know your child will have low IQ right?" As if that had anything to do with whether her kidneys were okay or not! We decided we'd never see her again.

My conclusion: If you can't change them, change them.