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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 48 Responses Dec 8, 2010

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He is so lucky to have u,u sound like a very strong mom.

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

You are heard, dear.
Prayers.

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.



He has a very strong background in a lot of subjects.

I grew up with Asperger's syndrome (High functioning autism).



The kids would think it was funny to provoke me into stimming, or a rage, or what have you.



You have many people who can empathise with you, people with family members with disabilities, and people with disabilities

Gypsy..you post has just changed my day..he has a great mom..I will make sure I remember your advice..thanx

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.



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!



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.



God bless you both, and all the other relatives and friends of special needs individuals!



~Coco

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,

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

Okay. I will not stare at your logo.





insightful story. Thanks for sharing.

@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

@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.

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!

Each children for his/her mother is either a hero or a heroin.You play a model of dutiful mother.I appriciate your care and out look.May God grant him physical proper and needful shape and figure.

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

((hugs))



Sorry.. He is great son to you that all that matters. Don't worry about other people think. You are have a great son. Love and guide him.

@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

@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.

Have you ever had a wizard to talk to before?

When I was 5 years old I had a bicycle accident that triggered a preexisting problem in my right hip.

at the time they called it leg perthese disease.

My problem was the ball and socket of my hip.......... the ball was wasting away and trying to disappear.

It took 8 years to stop the process .

I was on crutches....... in a wheelchair......... in one hospital for 9 months another for a year where they put me in traction.

I was away from my family during those stays.

I met a cool guy there that had the same problem that you are experiencing only he had to lay on his stomach constantly.

He didn't have the ability to walk.

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.

I didn't pay attention to them........ it was their problem not mine.

smiles

I got lucky and have no lingering effects of my problem......I even ran track and field in high school.

We play the hand we are dealt so do your best my young friend and hang in there.



Love, Light and Many wonderful Blessings,



Elf

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.

No problem. If you would like to add me that would be cool. No drama if not. Cheers

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

I will do what I can and I've updated my status as one small step

@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