Please Dont Stare

Before i share my story i want to tell you why i chose this logo, without hurting my son or opening myself up to hurtfull abusive members i wanted to show you what my son looks like without posting a photo of him the child in this photo is almost identical to James (my boy)

ok now i will start

Many people on here understand that my son has Marfans syndrome, he also has chronic scoliosis and restrictive lung disease (all complicatoins of marfan syndrome)
He is 169cm tall weighs 35 killos and has a severe rib hump at the moment (a rib hump is a hump on one side of the body) hes is very large because of the severity of hes scoliosis and because all of his muscles have gone to one side when he walks it looks like he is going to fall over, when he stretches out his arms  from the  tip of he's left finger to the tip of his right finger the measurement is 172cm (3cm longer than hes  body) as well as all this he has an arched palet (the roof of th mouth) and 28% lung compacity so when he talks he often has to talk slow and the words dont always come out right i wanted to paint a picture in your mind of him so you will understand

Not all children with a disability are obvious i have had people look at him then turn to me and say why arnt you feeding your son? (he eats very well)
others will stare and then whisper to whoever they are with
others will point

I know that im not the only mother going through this there is probley millions of us and fathers to thats why im asking no pleading with you to please not stare at kids with disabilities even if there disability isnt obvious they just look different  dont stare or make comments because this child and there parents i promise you are going through enough already, i know not every body is hurtfull when they stare some are just curious some are empthatic  if you like come and ask us whats wrong with our child i never take offence  i prefer this then people making assumptions

If you have taken the time to read this thank you
gypsymae gypsymae
31-35, F
43 Responses Dec 8, 2010

can someone help you? not money, just online...moral support maybe

Better still have the courage to approach and get to know both you and your son. The friend pool for most disabled children tends to be a bit shallow and there is always room for another. I am a special Ed teacher and I see this all the time. Society loses so much by throwing away what they do not understand! I am amazed by the child and the parents that stand with them. Truly Angels both.

I feel for you....I was a sickly kid when I was young and have grown into a great person thans to my Mom & Dad. Please add me we have a lot in common. Bruce

I with you :-)

I work with kids who have autism, we did a trip to the Dollar General, and you could tell when people made it obvious that they didn't like them, because they took the long way around to avoid my kids.

Hello you are a good mother thank you for the story to others that want to stare are make fun of handicap people wouldn't this way if that was your child are brother are sister would you like someone treating them me to others out there it you take the time and walk up to someone it's handicap and hello to them. I bet you would see a smile that would make their day

My bother hasn't got an outward appearance,but he is mentally challenged and has a habit of stareing at people. Rude as they are will say,.what are you looking at dummy and of course I come to his defence and calmly say,,he's never seen an A**hole before.

There is a friend of mine on here that has a unique understanding on this sort of subject. I would like to introduce you to him, his screen name is redtailfree48. If you want to talk with him, just add him and talk with him, I am sure he will give you any time of the day.<br />
<br />
He has a very strong background in a lot of subjects.

I grew up with Asperger's syndrome (High functioning autism).<br />
<br />
The kids would think it was funny to provoke me into stimming, or a rage, or what have you.<br />
<br />
You have many people who can empathise with you, people with family members with disabilities, and people with disabilities

Gypsymae and Vessa: Even though this is an old post, I only just stumbled upon it today and felt the need to comment to you both. I've only read the first page of comments so far, but the two of you really need to know this if you don't already... It takes a VERY special kind of person to raise a special needs child. Your children are blessed to have such caring parents! Many people don't have the patience or understanding to be able to handle the extra care a special needs child requires. It's obvious you are both incredibly empathetic toward your children and only want them to be happy, hence the discomfort when people stare or make comments.<br />
<br />
My younger brother has mild down syndrome (it's obvious physically, but mentally it's fairly mild). My stepfather is paralyzed and has been in a wheelchair for the last 15 years. I've spent a long time harboring anger and sadness toward people who make mean-spirited, ignorant, or plain careless comments and stared. It took me a long time to realize that I was more affected by it than my brother and stepdad were! With the security of knowing they are accepted for who they are at home, and the support of a loving family, special needs individuals seem remarkably resilient most of the time toward people such as the ones you are describing!<br />
<br />
I hope that thought eases your minds a bit. It may not be "easy" for your children to ignore the stares and the comments, but knowing that you care for them as much as you do, and having you there to support them makes all the difference in the world.<br />
<br />
God bless you both, and all the other relatives and friends of special needs individuals!<br />
<br />

thankyou puck61 but i think most people would do what i do i just wish i could do more

Thanks for this post. Both the post and the thread have been eye opening and touching for me. You're obviously a good momma and very strong.

hi tinypixie,<br />
thankyou for your comments you are obviously a good parent to teach your kids right from wrong as for the kudos for me sweetie im just coping thats all i wish i could do more i wish i had the answers to help other parents and there kids going through the same thing but bunfortunantly im human and keeping my head above water at the moment is the hardest thing to do

@skrc4u thank you so much for your comments its funny though i dont see it as playing a role he is my son and i do whatever it takes to make him happy and healthy as the majority of mums do<br />
@norianna i was at a theme park one day and seen this beautifully well dressed child i couldnt help but stare and smile because it was so unusual for achild to be so well dressed at a theme park i looked up and seen that the child had down syndrome to be honest it was the last thing i noticed the mum seen me looking at her girl but i think because, i had a smile on my face smiled back i think thats all most mums who have a child with a disability want is for people to acknowledge that our kids are different but to smile and keep walking.<br />
you are very kind hearted obviously to work with kids with a disability and to become part of the family it must of been heartbreaking when they moved im sorry your son has aspergers but like you said he is a great kid and you can look past the disability

I take care of children with disabilities. My first family was a couple and their 4 sons. 2 of them had disabilities. One had down syndrome and the other had cerebral paulsy. It was hard, but rewarding. I fell in love with the kids and it was so hard for me when they left to Mexico. They came back and the mother tried to contact me through DSHS after the caregiver they sent her was not as patient as I was. We finally connected and I worked with them again. I don't even like to call it work, but just being part of the family. They then left to California. I still miss them sometimes. My own son has Asperger's Syndrome. You can't tell, but he does have trouble with loud noises and changes in routine. He's an awesome kid and I'll tell you something. Anyone who stares at the disabled and ogles without saying anything is clueless. Give a glance and an honest smile. That goes a long way. But ogling? That's rude. Wishing you the best Gypsy!

you have no idea how great he is thats why its so unfair he never asks for anything he is just great thankyou for your comment

@loralei thankyou so much my son is my world along side my daughter i try to be a good mum as most mums do i do my best<br />
@lisa it will be my pleasure to give him a hug from you thankyou im starting to believe that it is my purpose in life to be a voice for the disabled

people are so judgementle give ur son all the hugs for me will ya? And bless you for being such a strong person and standing up for those that may have a disability....people who make fun of others are the one that are truly disabled.......keep up ur families spirts and I wish you guys all the blessings in the world. Lisa

@plenty2question thank you for your comments standing by my son is one of my greatest happiness he is so smart loving and caring putting it simply he is the best i just want to cry because others dont see him this way i just wish that others see him this way God gave me James for a reason i have decided that the point of my life is to educate others

Than for you for sharing your story. I have worked with children and adults with disbailities for 24 years. I also have a niece and nephew with disbailities. I believe most people will stare at times out of curiosity. When I am with either the people I support or my neice or nephew in the community I really am oblivious to peoples stares or looks. I have found that my own personal acceptance and comfort and positive respectful interactions seems to put people at ease. Even in the worst situations when someone is having a bad moment screaming on the floor of a store because they don't want to leave. I just remain focused on the person and helping them work through the situation. I agree it is better for people to ask questions if they are curious because it is an opportunity to educate them and increase their comfort and level of acceptance however, our responses to the publics curious eye is also critical. When we express or show feelings of embarrassment or sadness the person with the disability recognizes that and it seems it can increase there own feelings of self doubt and embarassment. My only suggestion to everyone is keep your head smile, smile, be pleasant, and always respectful and positive in your communication and interactions. Redirect peoples questions to the person you are with, to your son if and when he is able to answer them. It is unfortunate people who are completely able bodied are mostly clueless of the strengths and gifts of people with disabilities. Not to mention have no concept of how quickly accidents can happen that can change their or their childs life and abilities. Bless you and all the parents who love and stand by their children despite the added challenges a disability can present, you and your children deserve the best services and support to ensure they enjoy the life to the fullest and can grow to live as independently as possible in the community and be contributing adults to the world. All children deserve that and that is what all parents want.

Hi Elf its Sue (gypsymae) i read your comments to him but unfortunantly he is to tired to respond when he is feeling abit better i will show him again thank you elf for always being here for my family i know you have your own stress right now so i will be praying for your happiness

Hi James....... it's me again.<br />
Have you ever had a wizard to talk to before?<br />
When I was 5 years old I had a bicycle accident that triggered a preexisting problem in my right hip.<br />
at the time they called it leg perthese disease.<br />
My problem was the ball and socket of my hip.......... the ball was wasting away and trying to disappear.<br />
It took 8 years to stop the process .<br />
I was on crutches....... in a wheelchair......... in one hospital for 9 months another for a year where they put me in traction.<br />
I was away from my family during those stays.<br />
I met a cool guy there that had the same problem that you are experiencing only he had to lay on his stomach constantly.<br />
He didn't have the ability to walk.<br />
So you see James we all have our different levels of problems......anyone who stares has a different disability........... there's is in their heads.<br />
I didn't pay attention to them........ it was their problem not mine.<br />
smiles<br />
I got lucky and have no lingering effects of my problem......I even ran track and field in high school.<br />
We play the hand we are dealt so do your best my young friend and hang in there.<br />
<br />
Love, Light and Many wonderful Blessings,<br />
<br />
Elf<br />
Your wizard friend

Agreed and this goes for all children not only the disabled maybe than our kids will grow up with a brighter future

Hi again, it's me. They don't know what caused my scoliosis, I was just one of the one's that drew the long straw so to speak. I am also only 4' 7' tall. One leg is definately more noticabally longer than the other so I wak with a limp. I have emphasyma; so when I am having a respatory flare or I am off my oxygyen and winded from walking a few feet, my words to are hard to get out and not very understandable. I was also diagnosed 3 years ago with right-sided congestive heart failure. Which is harder to treat then left-sided. I was on HOSPICE for 9 months because the doctors' thought that I wouldn't live for more than 6 months and then HOSPICE gave me three more months; that will be two years ago in May. I don't know how much longer I will live, but I do not fear, to me I know inside that death is like sleep only deeper. I don't believe in a burning hell, God is a God of love so how could he do that to His children. A human father wouldn't set his child on fire because he played with the stove. So it is only logical. Please keep me informed with what's going on in your son's life and in yours. I care.

thank you every small step will get us a long way!!!

@gforce writing this and getting the positive responses ive recieved has been great you do help me by the way by just reading it but you can help another way just try to educate others on starring at disabled kids

Hi Hon,<br />
i remember when i was pregnant with him i was looking through a book and what stuck out to me was the statistics eg 1 in 10,000 are born with this 1 in 100,000 will be born that i remember thinking ok if you put it all together there is a good chance your bady will have something wrong IDK maybe i put a curse on him my son is extremly smart and you know that annoys me the most because hes body doesnt work and hes words cant come out properly people just assume hes retarded, it hurts (you would probly understand this more than others because of your past) if you dont mind me asking what caused your scoliosis?

They took the bone graft out of my right hip which gave yet one more disability, now I can't lift my leg up to put shoes on nor tie them. In 76 they did the whole operation at one time. I think I spent three weeks in the hospital. One other very embarrassing (for me) thing about the operation was that the fusion caused it so I can't twist, which means I need help with toileting. I have so many things wrong with my body; including two terminal illnesses, that I believe that God gave me a brain and a heart as big as the world. I cry inside and out when I hear of injustices like what is happening not just to your son but to other disabled people around the world. I bet your son is very smart. I have to be honest with you, and tell you, that I didn't even know that there was a desease like Marfans until I read your story. Stay strong, be well and know that the Lord's angels are watching over you and your son. williteverend

@awaniswath thank you i have to trust that god knows what he is doing otherwise i would be in pieces<br />
<br />
@williteverend my son james is having Rods inserted but now its a two part operation the first op they remove a rib and fuse to verterbrae together he will than spend 7 to 9 days in hospital than go home for 4 days than go back in and have the rods put in and the rib they took out will be all mushed up and put ontop of the rods to eventully set like cement he will have to wherea brace im not sure how long for<br />
Im sorry your time in a nursing home was so bad i worked in Agedcare as a nurse for 6 years and would never have spoken so badly of the residents<br />
I agree with your statement that people seem to fear that they will become disabled its like they think its contagiouse i think ignorance breeds arogance personally

gypsmae, jacklynnherr1920 here: Hi. <br />
<br />
I know how painful it is to be disabled and have people sincker at you and children point and say what's wrong with them? to mommy or daddy. The same momies and daddies that never brought their children up to be accepting and to have good enough manners not to point and burst out with obnoxious sayings. What is worse is the adults. You would think that their brains are big enough to fanthom what it must be like to be disabled. Maybe it is because they are afraid that they may become disabled or that they just don't know how to react or what to say. I to have scoliosis, mine was at the 50th percintile. They did the Harrington Rod operation on me when I was eighteen back in 1976. I had to walk around for a year with a body cast from neck to hip surrounding my upper body. One day I was in a store and a mom and little boy walked by and the little boy pointed right at me and said "is that lady frankenstein?" People that were around stopped and just stared at me, I was so humilated. I've gotten over that, but I have seen terrible injustesess done to people that are disabled, like being turned down for jobs, laughed at, even spit upon. In a nursing home where I was for 1-1/2 years I watched and experienced the aides giving unfair treatment to those that couldn't do it themselves for whatever reason. I was one of them. I heard them laugh together about people who are incontinent, paralyzed, have dementia, old and dying. Thank the Lord that He gave me a way to get out of there.<br />
Tell your son that he is a special child of God. The Lord knows the numbers of hair that are on our heads ~ he knows what your child is going through ~ your child will be rewarded in the end.

@apollo that has never been proven but if you look at photos of him he is a typical marfanoid with his long face long slim body and long fingers so yes i believe he did didnt he die young though? back than the life span for a person with marfans was 40 now its about 80<br />
@hopeless thankyou that means alot to me

Well Godbless u for being such a good & brave Mom, & Godbless ur son! Anyone who stares is ignorant!

Abe lincoln had marfans.

I thought of that LC thats part of the reason i started the group to educate people that dont understand what it feels like and to help people that are going through the same thing<br />
LC you are one of the greatest people on here and its a privlidge to have you as a friend

It's a blessing that you are sharing this because I know there are others who are going through similar experiences and can very much relate to your story. <br />
Thanks for sharing a part of you with us!

no sorry you misunderstood hes rib hump is very large he's body size is very very slim there is a support group on here if you would like to know more about marfans syndrome

Marfan syndrome...? I tried "seeing" what your son's physical appearance would be if seen in life, but I don't think that I got "it" right. I don't think that I feel that I have the right to impose on somebody else's family members. Especially, if I don't know them. Is Marfan syndrome rare? He only has a 28 % lung capacity? It must be difficult for him to sleep. You wrote "hes is very large" then shortly after you wrote "have had people look at him then turn to me and say why arnt you feeding your son?" but if he is very large as you've said, then why would they ask about his nourishment level? I am not familiar with the conversion of kilos to pounds. Are 35 kilos considered heavy?

@ thebigmyth there are obvious disabilities like down syndrome or a kid in a wheel chair that people dont stare at but what about the less obvious like my son who just looks malnurished or an Autistic kid that acts a bit strange i know you wouldnt deliberetly stare but others do<br />
@mis sass i dont take offence to young kids young kids are just curious not mean and your doing a good job trying to educate your kids thank you

This is something I struggle with. I have two small children and as children do, ask questions in a not to subtle manner when they see someone who looks different to themselves. Answering their questioins in a sensitive and honest manner without offending the person they have seen is sometimes difficult. I really want my kids to understand that people are different and to accept and understand those different to themselves.

@ imogen thankyou for your help Educating people who will hopefully educate others is my goal

Hi Vessa,<br />
your problem im guessing would be close to mine with Autism children people dont understand there behaviour and these small minded people would be saying you are a bad mum for not controlling your child i know an Adult by the way that has a high leval autism he is now earning 200,000 a year hes intelligence is extreme just like most Autistic kids<br />
Im with you when you say you want to smack them but then i look at my son and think if i make a scene then he will click and get upset that would be worse, and i dont mind when people ask me whats wrong with him as long as he doesnt hear because hopefully then i can educate them,<br />
James has another problem that i havnt mentioned its a problem with one of his chromosones, chromozone 6 with him has an extra band but hes inzact problem only one other person in the world has ever had it so he is kinda like a test case i dont mention it because no one knows if its that causing problems or not no one not even the doctors know

Thanks, Gypsymae. For sharing your story and starting this group. :)<br />
I have a 13 year old with autism. And he can be fairly "obvious". And though all of our kids are different, I can identify with your story. <br />
It can be unnerving just going out in public. I used to wonder why I never saw any of the special needs children from school out in the stores or anywhere else outside of school. Now I have a better idea. It's a sad commentary on people. <br />
When kids stare, it is heartbreaking. Because I wish they would speak or smile at my son...even though he wouldn't answer. <br />
When adults stare, it is worse. Because they should just know better. And they probably realize that it is hurtful.<br />
Then, as you wrote, there are the ones who stare at me as if I am a bad mother. When we have to get up and leave a place because my son can't sit still or be quiet during a presentation. I will never understand why our kids are still stared at in this day and age of awareness. Why people haven't yet learned how to respect those who are differently abled. Even now, there are people who just don't get it. I guess it's just an overall lack of manners. <br />
Sad when I see it. <br />
Feel it.<br />
I feel for you. Meeting these people cheerfully and without anger can be so difficult. I usually want to smack them. Just ignoring it can be difficult.<br />

Imogen you have made me cry thank you for understanding i dont think people can unless they have been there themselves