Re: No Respect!

[Guest guest]

Lin... I'm sorry about your experience... I'm sure she wasn't INTENTIONALLY

trying to hurt you, but just ignorant, and of course, unaware of your feelings

on it. I also remembering being sick to death of feeling I owed people an

explanation for my sons behaviors... and did finally get to a point where I

didn't feel obligated to anymore.

I hope I'm not coming across as rude now, but if a stranger glanced at Trey,

and recognized that he had down's... others will too. I know you're still

dealing with it all sinking in, and the diagnosis... it'll get easier, and his

distinct features may not be a bad thing. After dealing with my MDS son for 13

years now, do you know there are actually times when I wished he looked MORE

down's?!?!?! Sounds wild, but, he is quite delayed, and his speech is limited

and slurred, and sometimes his behaviors are more like a 4 yr olds than a 13

year olds (silly noises in public, goofy faces, jumping around). Over the

years, people have said rude things to me about it, given us dirty looks...

looked

at me like i was the crappiest mother on the planet, he was also in pull ups

till 11 because of his bowel disease, so some people would catch a glimpse of

his pull up under his shirt, and just look at us like we were crazy..and that

was with some of my church members! So, I do admit to having moments where I

feel if people could " SEE " his disability better... they would be more

understanding. Of course you don't know how Trey will develop yet... and his

looks

may change as he grows... but he is who he is, and part of that is

MDS...and if people recognize that, maybe its not so bad...

she was totally off with the male's are the carriers though...there was your

opportunity to blast on her (as my 17 yr woulld say!) Sheesh!!

Angel

Mom to , 13 Mosaic Down Syndrome/Hirschsprung's Disease

Lance 17, Tyler 14, 11

Jaeda 9 and

Shayne 3

[Guest guest]

Hi--I so sympathize with you as it seems cruel to have someone point out

that your child is different in some way and then go on and on as if that

difference gives them special knowledge of your child and of how to parent them.

Ugh. It makes me want to cry or scream. At the same time, I've actually had more

of this with my child who doesn't have mosaic Down syndrome. When she was a

baby she was very petite--not unhealthy, just very low on the weight charts.

For some reason this gave everyone the right to ask me what she was eating,

if I'd thought about adding rice to her breast milk or supplementing with

formula, yada, yada, yada. Because she was my first child, I felt so sensitive

and scared and wronged each time this happened. Of course she's grown up into a

just right sized three year old, thank you very much. But I sometimes think

people just can't help themselves. They want to make a connection and don't

know how to do it gracefully. Explaining mosaic Down syndrome can be a

nightmare with people like that--I usually give it a brief try, then put up my

barriers, move on which it sounds like you did as well. I'm glad you prayed,

reached out to this support group, did what you needed to to regain your peace

of

mind. That's terrific. At least you know that no matter what you have some

power over how you respond. Sorry you had to deal with that, that any of us

have to . . . , mom to Anton (14 mo. MDS) & Forester (almost 4)

[Guest guest]

,

I am proud of the way you handled the whole situation! Some people just don't

know when to stop talking and they all wish they were an authority on things. It

probably bothered the woman that you knew more than she did! You will,

unfortunately, run into individuals throughout Trey's life who are oblivious to

their surroundings. They want to connect with you in some way just because they

think you are some sort of gem that they don't understand. Each situation will

be different and sometimes you will feel the need to explain to them what MDS is

(and that is good because they need to be educated) and then other times it is

best to not give them the time of day! If they are really interested and want to

be educated then you can educate them. If they want to just be nosy or act as an

authority on an issue they have no idea about, tell them to have a nice day and

walk away!

You are doing a fantastic job with Trey! It doesn't matter what others

think...it only matters what Trey thinks!

Kristy

Carrillo wrote:

This weekend my husband, 7-yr. old daughter, and 9 1/2 month old son went to

Wal-Mart. My husband and daughter went to get some groceries, while me and my

precious baby rallied over to the baby area to get him some supplies. As I

exited an aisle, a lady pushing a cart with her baby placed in her carrier (

about 5 months) peeks into my cart were my baby was- in his carrier. To my

surprise, she bluntly blurts out " he's so cute, he has ds. " I was in shock!

Had she not ever heard of manners, or thinking of other people's feelings? I

did not know what to say. I recently answered the resonse to " How did you

tell? " I basically have only told my immediate family, I don't feel anyone else

has to know, how will it help my baby?. Anyways, I told the lady " no " then

" yes " then found myself explaining my son's diagnosis and mds. . After, she

hit me with " take care of him. don't treat him different, don't feel sorry

for him -only when he is little,. I said, " I do take care

of him, he is treated the same as my daughter, and I do not feel sorry for him

now, nor ever. He is my son and he is the same. " She then came back with , I

have a cousin with ds, we get after her like everyone, and my uncle is not close

to her pushes her away because of the ds. I let her know that my husband loves

my son, and it was unfortunate for her cousin. She then whisperd " it's the

male- he carries it. At that point, I felt she was just out to hurt

me-emotionally. She said the male carried the gene. I had just had enough- I

wished her a good day and went my way. As I approached my husband my eyes

filled with tears, my throat with a knot, as I had just been hit by a train, I

felt like I was back to square one. I then prayed, and found the strength. My

husband said I should not have given her the time, nor did I owe her an

eplanation, she was not an expert. My family tells me I need to be stong- I am

trying. I am not in denial- but like all of you -I want the best

for my son,. I do not need anyone labeling him- he is a baby boy.

Lin, mother to Trey (mds), ( 7)

---------------------------------

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[Guest guest]

hello

sounds to me you handled everything fairly well.....this so called lady needs

a major reality adjustment! what she said was indeed rude and disrespectful...no

need for her to carry on like she did ...my daughter, a will be 5 next

month and was diagnosed at 16 months with MDS... to this day, I have struggles

with people and their ignorance ....they say things like ~ well, if she has down

syndrome, why doesn't she look like it? I, like you, try to explain the best I

can ...sometimes, with no good results...wish my husband was more supportive

like yours ...mine has a major acceptance problem even after all this time &

never discusses her condition or goes to any specialists or geneticist

appointments with me ...he acts and thinks and treats the situation as if

a has a cold or something that she will outgrow or get rid of .... I tell

him you support the morons alot more often than you support your daughter LoL

......my family, however, is much more supportive... you did

well , unfortuneately, there will be more people out there you will clash with.

take care & wish all the best for you & your wonderful family

~ Tina ~

(in northern Va. mom to Bonnie 13 Connor / ADHD / learning disabilities

a almost 5 MDS / kidney reflux)

Carrillo wrote:

This weekend my husband, 7-yr. old daughter, and 9 1/2 month old son went to

Wal-Mart. My husband and daughter went to get some groceries, while me and my

precious baby rallied over to the baby area to get him some supplies. As I

exited an aisle, a lady pushing a cart with her baby placed in her carrier (

about 5 months) peeks into my cart were my baby was- in his carrier. To my

surprise, she bluntly blurts out " he's so cute, he has ds. " I was in shock! Had

she not ever heard of manners, or thinking of other people's feelings? I did not

know what to say. I recently answered the resonse to " How did you tell? " I

basically have only told my immediate family, I don't feel anyone else has to

know, how will it help my baby?. Anyways, I told the lady " no " then " yes " then

found myself explaining my son's diagnosis and mds. . After, she hit me with "

take care of him. don't treat him different, don't feel sorry for him -only when

he is little,. I said, " I do take care

of him, he is treated the same as my daughter, and I do not feel sorry for him

now, nor ever. He is my son and he is the same. " She then came back with , I

have a cousin with ds, we get after her like everyone, and my uncle is not close

to her pushes her away because of the ds. I let her know that my husband loves

my son, and it was unfortunate for her cousin. She then whisperd " it's the

male- he carries it. At that point, I felt she was just out to hurt

me-emotionally. She said the male carried the gene. I had just had enough- I

wished her a good day and went my way. As I approached my husband my eyes filled

with tears, my throat with a knot, as I had just been hit by a train, I felt

like I was back to square one. I then prayed, and found the strength. My husband

said I should not have given her the time, nor did I owe her an eplanation, she

was not an expert. My family tells me I need to be stong- I am trying. I am not

in denial- but like all of you -I want the best

for my son,. I do not need anyone labeling him- he is a baby boy.

Lin, mother to Trey (mds), ( 7)

---------------------------------

New Yahoo! Messenger with Voice. Call regular phones from your PC for low, low

rates.

[Guest guest]

Although I have had issues with nosy people, I don't think I have ever

encountered a problem explaining MDS. I simply say, some of his cells have the

extra chromosome that causes Down syndrome and the remainder of his cells are

normal. Because of the normal cells, he is not as delayed as one with Down

syndrome. (in fact, he often out smarts those who think they know everything!

lol)

Kristy

krsosno@... wrote:

Hi--I so sympathize with you as it seems cruel to have someone point out

that your child is different in some way and then go on and on as if that

difference gives them special knowledge of your child and of how to parent them.

Ugh. It makes me want to cry or scream. At the same time, I've actually had more

of this with my child who doesn't have mosaic Down syndrome. When she was a

baby she was very petite--not unhealthy, just very low on the weight charts.

For some reason this gave everyone the right to ask me what she was eating,

if I'd thought about adding rice to her breast milk or supplementing with

formula, yada, yada, yada. Because she was my first child, I felt so sensitive

and scared and wronged each time this happened. Of course she's grown up into a

just right sized three year old, thank you very much. But I sometimes think

people just can't help themselves. They want to make a connection and don't

know how to do it gracefully. Explaining mosaic Down syndrome can be a

nightmare with people like that--I usually give it a brief try, then put up my

barriers, move on which it sounds like you did as well. I'm glad you prayed,

reached out to this support group, did what you needed to to regain your peace

of

mind. That's terrific. At least you know that no matter what you have some

power over how you respond. Sorry you had to deal with that, that any of us

have to . . . , mom to Anton (14 mo. MDS) & Forester (almost 4)