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Goofyluver
04-11-2007, 10:21 AM
Okay, I have been dealing with my son's disability for 10 years...why do I still let things get to me?

Yesterday, I was at work and was talking to a co-worker about her adult daughter...who has been through a lot. I don't particularly care for this co-worker, but I would never ever be rude to anyone. I was trying to relate to her and her daughter's situation. So, I shared something with her about my life. You know...give and take.

It doesn't even really matter what I shared with her. I never share personal things with people that I don't really know...or don't like for that matter. But, she then turns around to me and refers to my son as "retarded" and makes another comment equally as awful.

The kicker? My son is not MR and I have never told her he was. Both comments she made hurt me deeply...and I went home and cried.

I just don't understand why it affected me so much. I can't stop thinking about it. I went home and just cried and cried. I have been dealing with my DSs disability for a long time. But, occasionally, things come up and I greave again. I don't even know why I let it affect me so much.

Does anyone else just have times where all the difficulty and pain get to you all over again? What do you do?

mumloveseeyore
04-11-2007, 12:32 PM
just a quick:grouphug: there are always going to be ignorant uncaring people about, you are better than that. You never know that she may be feling overwhelmed too and just attacked the first available target, not that its justified. You know that you are doing a great job. Gill

karynnix
04-11-2007, 02:07 PM
The word "retarded" cuts me right through to my soul. I tense up everytime I hear that word and I make a point to let the person know that it is a horrible word.

My DS8 has Asperger's and he has been so strong in dealing with it. He doesn't understand a lot, but he is learning. He has days where his AS is more noticable than others, and those days are hard for me to deal with. I have to keep making myself look at the things that he CAN do and what makes him so special.

Tissa
04-11-2007, 02:24 PM
Some people don't realize that retarded is not the proper word to use anymore. Not to excuse how she used it or how she made you feel. I'm truly sorry for that. Both my sons are MR and I hate the use of that word too.
Every year at their ARD's I get to see the classification of Mentally Retarded and it still hurts.

Hang in there and don't let the clueless get you down.:wizard:

JESW
04-11-2007, 03:20 PM
I am so sorry that you had to go through that! I hope that you tell her how much she hurt you. I am another one who gets bothered by the word retarded - I cringe when people casually say it like - "that's so retarded!" I don't know if it's my age (I am in my 40's), but that word is on my list with the "N" word that really bothers me when I hear it.

I am the Mom of a ds12 with asperger's so I am also very sensitive to the labels people put on our kids.

Hope tomorrow is a better day for you!

Jill

KPeveler
04-11-2007, 03:26 PM
i have been known to "anonymously" report my boss when she used the term "that's so retarded" at work. i do not have children or sibling who have developmental problems, but my friend's husband is an adult Aspie living in the real world with marriage and now a newborn son. i know how hard things are for him, and it is awful when people liken something annoying to a life-long disability... also my baby cousin died from complcations of DS...

and to the OP, i know how hard it is, and a great big hug to you. people assume any disabiltiy is a mental/emotional/learning one and just dont understand. just content yourself with knowing you're smarter than them. and a better person too!

Goofyluver
04-11-2007, 03:30 PM
Thanks for all of your kind words. I'm not sure why I let things get to me! My DS has a neurologic abnormality (ACC)...and sorry, but I don't believe you can really get an IQ on these kiddos and label them as "MR" or whatever. That word...the "r" word...is horrible to me. Call me anything...but don't ever call my DS that. I also hate the word "normal". What the heck is normal???

People just don't watch what they say. And, I know that she didn't mean anything maliciously...but it still stung.

Forevryoung
04-11-2007, 03:56 PM
As I say "normal is ONLY a setting on your washing machine" ;)

:grouphug:

Goofyluver
04-11-2007, 07:07 PM
As I say "normal is ONLY a setting on your washing machine" ;)

:grouphug:

I'm totally using this one! :thumbsup2

I Love Pluto
04-11-2007, 07:28 PM
:grouphug:

Words can hurt a lot. Try not to let someone else's ignorance ruin your day.

Laren
04-11-2007, 08:16 PM
Just wanted to give you a hug and tell you how sorry I am for your co-workers careless and unkind remarks.

People who live with disabilities of any kind (myself included) have up days and down days. You sound like a kind and caring person. . .I hope you have more up ones than down ones.

The people who don't live with these kinds of troubles are really clueless how hard life can be from day to day. . .and they show their ignorance when they speak. I wish you a better, brighter day tomorrow. Words really can hurt, but please just try to at least consider the source! Someone who knows nothing about all the things you've survived. So they do hurt, but they have no meaning. I hope I'm putting this the way that I want to- struggling sometimes to get my meaning across is one of MY disabilities post-stroke!

big hugs!
Laren

OneLittleSpark
04-12-2007, 05:51 AM
Some people are just so wrapped up in their own little world that they don't realise how much they hurt people. It's cruel and unfair, but they really don't mean to cause such hurt and upset. Not trying to justify her actions, just trying to say that it's her problem, not yours. Keep your chin up and try to focus on the good things (I do understand how hard that can be sometimes) :hug:.

SandrainNC
04-12-2007, 11:23 AM
I'm so sorry!!!! I have said something to people at work for saying that word before. One was an attorney (I am a legal secretary) and I said something to her twice. She would get mad and I would hear her in her office. She doesn't sit near me anymore though. I just e-mailed HR and told them that it was offensive and yes I said something to her in case she told on me.

I also have relatives (sister and her children) that think nothing of it and that I am just too sensitive and since they do not think of their nephew/cousin that way, then it is ok to say it. Since to them he is not MR. Whatever!

Anyway, I would have definitely said something to her about her choice of words, but that is just me. If I don't say something I feel like I am saying it is ok. And its not.

Sandra

missypie
04-12-2007, 02:58 PM
The "R" word used to be a correct term...better than Mongoloid or Cretin. There is still a Texas state agency called the Department of Mental Health and Mental Retardation (though most people just call it MHMR). The term has become hurtful due to its use as a slur. Try not to let it bother you if someone is using it without meaning it as a slur. I especially give people a "bye" if they are older. Just think of how the acceptable terminology for so many things has changed since they were kids.

Goofyluver
04-12-2007, 03:11 PM
Thanks again for everyone's kind words. The word...the "r" word...cuts me to the core. I hate it. It stings very harshly. But, it wasn't the word she used alone. It was what she said...

She told me that it was...these are her words..."Probably not my fault that my son was retarded." In fact, I should blame it on my ex...who was military. Because...now here it comes..."Many military members got the anthrax vaccine. After getting the vaccine, lots of babies were born retarded, without limbs, and abnormal. So, it's probably his fault that your son was born retarded." Yea...thanks for sayin' that. Made me feel all better inside.

diseyore
04-12-2007, 06:11 PM
I can relate, when someone says something degrading about our children it brings everything home again and the pain cut really deep. Easy to say consider the source, but that doesn't help, just know that there are people out here who care, and want everything that is blessed in your life for you.:grouphug:

Luv Bunnies
04-12-2007, 08:58 PM
I had kind of a similar situation last week. My 11 year old son has Asperger's. During my 8 year old's baseball games, he enjoys walking around the area where the fields are and pretending he's a train or making up little scenarios about race cars or whatever's on his mind. He sometimes sits with us and watches the game but that gets boring for him.

So, last week, a mom from the team approached me (she has 2 boys on the team). She wanted to know how to explain my son's condition to her sons. She said she told them that God makes everyone different, etc. but she didn't know if she should call it a learning disability or something else. I know her intention was really good and I always appreciate when people ask me directly about my son instead of assuming something or trying to figure it out on their own. I really don't mind talking about it and I think it helps the kids in the long run who are curious about him.

But, instead of just saying her boys were curious, she said, "My boys said they're really glad they don't have him as a brother and I wanted to explain what was wrong with him." I have no doubt her kids said that. In fact, I really don't fault them because they're kids! But did she have to say it to me? It was really hurtful. I tried to calmly explain that it's a developmental disability. How she could explain to her kids that his brain developed differently from others, etc. I told her I was glad she asked. But, I still felt kind of hurt. Not so much for me, but for my son who will have to deal with this stuff all of his life.

To the OP - I can really empathize with you! I guess we have to be strong and hang in there. We know how wonderful our kids are and we'll have to be strong for them!;)

OneLittleSpark
04-13-2007, 04:32 AM
Thanks again for everyone's kind words. The word...the "r" word...cuts me to the core. I hate it. It stings very harshly. But, it wasn't the word she used alone. It was what she said...

She told me that it was...these are her words..."Probably not my fault that my son was retarded." In fact, I should blame it on my ex...who was military. Because...now here it comes..."Many military members got the anthrax vaccine. After getting the vaccine, lots of babies were born retarded, without limbs, and abnormal. So, it's probably his fault that your son was born retarded." Yea...thanks for sayin' that. Made me feel all better inside.

:eek: I can't believe she actually said that! Some people just don't have a clue. I can't find any words to make it better, but I am sending along oodles of hugs :hug: and happy thoughts :goodvibes if that's any help.

LindsayDunn228
04-13-2007, 05:58 AM
Thanks again for everyone's kind words. The word...the "r" word...cuts me to the core. I hate it. It stings very harshly. But, it wasn't the word she used alone. It was what she said...

She told me that it was...these are her words..."Probably not my fault that my son was retarded." In fact, I should blame it on my ex...who was military. Because...now here it comes..."Many military members got the anthrax vaccine. After getting the vaccine, lots of babies were born retarded, without limbs, and abnormal. So, it's probably his fault that your son was born retarded." Yea...thanks for sayin' that. Made me feel all better inside.

Oh dear lord. I would have cocked my head to one side, mouth open, and said, "Do you honestly hear the words you are saying to me?? You may need to get your brain filter checked out," or something.

marybrat
04-13-2007, 10:04 AM
To the OP-- I can relate to the ignnorant comment you received. My own mother actually stated that she's afaid I caused my children's Tourette Syndrome by shaking them too hard. Just for the record, I have not shaken either of my children. In addition, I myself have Tourette Syndrome (but didn't know it until my DD was diagnosed). So, if my mother's theory holds true... hmmm... how did I develop it??

Anyway, her comments really bothered me for a long time. It's been about 2 years since her comment, so I'm ok with it now. She never apologized for it though... that's the part that I will probably never get past.

mommyandmore
04-13-2007, 09:46 PM
Earlier this week something similiar happened to me and I still can't get over it. I was dropping my son (who has CP and other delays- very obvious) off at preschool and another mother was there dropping her daughter off. The daughter was crying because her mother had not packed her favorite water bottle. The mother was obviously annoyed and rushed so she says to the girl in this loud voice "stop crying about it. You know that water bottle was retarded. Just completely useless and retarded. We don't keep retarded things around, we throw them away." I was looking at the teacher at this point with my mouth wide open- she stepped in and steered the little girl away and the mom left but I ended up crying in my car for so long. I know hat she wasn't really talking about my son and his disabilities but for her to say something like that and around her little daughter- it just really brought home to me how some people still think and how powerful certain words are.

Val
04-14-2007, 10:50 AM
I am currently refusing to attend our parish church, and we are pulling our youngest 2 kids out of the parochial school. First, they refuse to deal with bullying, and second, they don't want our youngest DD to wear her hearing aids. The pastor told me (as we were standing on the wheelchair access ramp!) that he doesn't want DD9 to wear her hearing aids in school because it makes the school look "too special-educationy" and the parochial school just isn't "that kind of school"....

....I called him a bad word in public (in front of several other parents), reminded him of the Federal Disabilities Act, and then gave him a Guide to Disabilities Ettiquette book for Christmas. He has never apologized- just said he did't mean to upset me since I obviously was having grave difficulties dealing with my handicapped child. Do much for tolerance!!!!!!

OneLittleSpark
04-14-2007, 11:48 AM
I am currently refusing to attend our parish church, and we are pulling our youngest 2 kids out of the parochial school. First, they refuse to deal with bullying, and second, they don't want our youngest DD to wear her hearing aids. The pastor told me (as we were standing on the wheelchair access ramp!) that he doesn't want DD9 to wear her hearing aids in school because it makes the school look "too special-educationy" and the parochial school just isn't "that kind of school"....

....I called him a bad word in public (in front of several other parents), reminded him of the Federal Disabilities Act, and then gave him a Guide to Disabilities Ettiquette book for Christmas. He has never apologized- just said he did't mean to upset me since I obviously was having grave difficulties dealing with my handicapped child. Do much for tolerance!!!!!!


:eek: And that from a pastor too?! Does he stop kids from wearing their glasses to school as well? Because it's exactly the same issue, just a different disability. Have you considered reporting him for this, to avoid other people having to go through what you did? I can completely understand your decision to move school and church, I hope you find somewhere a little more understanding :hug:.

Val
04-14-2007, 03:50 PM
Oh, don't worry! I have quite a letter prepared for the Bishop- along with a report that some psych consultants did about the systemic bullying problem (that was never sent to parents, but I called the university to get it). My DS has been bullied to the point that we have him seeing a counselor- night mares, school refusal, etc. One child in his class was expelled after the kid had it with the bullying and attacked another child ("unfortunately" not the bully) with scissors- resulting in stitches to the neck. Only about 2/3 of the kids in DS's class are returning next year.

We also can't get any IEP compliance- DD is on an IEP through the public school, with the parochial school agreeing to follow it. Simply things like preferential seating and using the FM system, e.g., sit DD in front, facing the board. Would be great, but the teacher teaches from the back of the room, so she is talking BEHIND DDs head, which means DD can't lip read. I can't get them to understand WHY this might be a problem. Only the primary classroom teacher will use the FM system- not the art, music, social studies, computer or Spanish teachers. They failed her in Spanish the first semester because she wasn't able to repeat back answers in Spanish when the Spanish teacher asked her a question in Spanish.....Gee, this is a kid who can't hear English well enough to get dictation, and they think she should hear another language? Had to remind them that in her IEP it required Spanish be a pass/fail grade! It just goes on and on.....talking to the principal or priests does no good.... when I follow up they just shrug their shoulders and suggest we "pray on it". It just seems that there is no "coping a clue" about what hearing loss means. She's not deaf, just HOH, and they just don't get it!

Too bad, it was a good school-my oldest 2 DDs (now in HS and college) went through this school and we have many, many years in the parish. Overall school enrollment is down significantly, too, with many long term families leaving. I usually average around 200 hours of volunteer service each year, so I have been an active and involved parent......but, I should finish the tile table for the auction tomorrow- and I am finished for ever! Breaks my heart to leave, but enough is enough.

patsal
04-14-2007, 04:32 PM
Oh, don't worry! I have quite a letter prepared for the Bishop- along with a report that some psych consultants did about the systemic bullying problem (that was never sent to parents, but I called the university to get it). My DS has been bullied to the point that we have him seeing a counselor- night mares, school refusal, etc. One child in his class was expelled after the kid had it with the bullying and attacked another child ("unfortunately" not the bully) with scissors- resulting in stitches to the neck. Only about 2/3 of the kids in DS's class are returning next year.

We also can't get any IEP compliance- DD is on an IEP through the public school, with the parochial school agreeing to follow it. Simply things like preferential seating and using the FM system, e.g., sit DD in front, facing the board. Would be great, but the teacher teaches from the back of the room, so she is talking BEHIND DDs head, which means DD can't lip read. I can't get them to understand WHY this might be a problem. Only the primary classroom teacher will use the FM system- not the art, music, social studies, computer or Spanish teachers. They failed her in Spanish the first semester because she wasn't able to repeat back answers in Spanish when the Spanish teacher asked her a question in Spanish.....Gee, this is a kid who can't hear English well enough to get dictation, and they think she should hear another language? Had to remind them that in her IEP it required Spanish be a pass/fail grade! It just goes on and on.....talking to the principal or priests does no good.... when I follow up they just shrug their shoulders and suggest we "pray on it". It just seems that there is no "coping a clue" about what hearing loss means. She's not deaf, just HOH, and they just don't get it!

Too bad, it was a good school-my oldest 2 DDs (now in HS and college) went through this school and we have many, many years in the parish. Overall school enrollment is down significantly, too, with many long term families leaving. I usually average around 200 hours of volunteer service each year, so I have been an active and involved parent......but, I should finish the tile table for the auction tomorrow- and I am finished for ever! Breaks my heart to leave, but enough is enough.

And they wonder why so many parochial schools are closing due to poor enrollment...while I know they do not have to comply since they are "private" and you agree to give up the IEP/504 accomadations when you choose to enroll--that is how our parish school here words it, it is a shame. Of course with what they pay and with the number of uncertified teachers (at least where we are) compliance would mean actually having to learn something so that they can accomadate. Off my soapbox--btw they need to get a clue preferential seating isn't being seated in the front, it is being seated where the learning is coming from.

Goofyluver
04-14-2007, 10:31 PM
Val...I'm sorry for your difficulties. I have enough difficulty getting the public schools to abide by my DSs IEP. I can't imagine how difficult the situation you are in must be. Unfortunately, it takes parents like you, who stand up and are advocates for their children, to get things changed after way too long waits. I hope that you find a program that will be honored to care for your daughter through her educational career.

LauraAnn630
04-15-2007, 10:56 AM
I can only imagine how much that hurt you. Because it made my heart hurt!

I was so surprised how ignorant people are when we took my niece this last Christmas to Epcot.

People were staring like crazy. My sister was running around explaining autism to everyone.

I said, "You dont have to explain to these people!"

She said, "If I dont they wont stop staring."

Give me her name Ill kick her @%* for ya! LOL (Jk of course)

Goofyluver
04-15-2007, 03:57 PM
I can only imagine how much that hurt you. Because it made my heart hurt!

I was so surprised how ignorant people are when we took my niece this last Christmas to Epcot.

People were staring like crazy. My sister was running around explaining autism to everyone.

I said, "You dont have to explain to these people!"

She said, "If I dont they wont stop staring."

Give me her name Ill kick her @%* for ya! LOL (Jk of course)

;) Thanks hon!!! :laughing:

And, as for people staring...eeeeesh! People don't realize how blessed they are to have children with no special needs. Judge away people! But, if it were them, would they want people staring? :sad2:

Disneyracingfan
04-15-2007, 06:55 PM
I share your pain in dealing with ignorant people.... Chins up, heads held high.:grouphug: My DS has a little known chromosome disorder that causes across the board delays. I hate the looks and the coments, my problem is I have a big mouth and a vocabulary that could make a trucker blush. Be it for my family or for a stranger, I usually let loose and then go back to whatever I was doing.

Val
04-15-2007, 07:39 PM
I find places like the DISabilities board, and parents of HOH boards really, really help. Where else can I post that the dog ate DD9's hearing aid, and instead of getting bad parent looks, I get commiserating and affirmation of my bad day!

The internet is a God-send, in so many ways. In spite of insensitive people at church, in the schools, or at WDW, we can find people who know what we as parents, or individuals with different abilities are going through- we offer one another support, suggestions, information and we can laugh and cry together!

Remember the story about "going to Holland" when you meant to go to Italy (I think it was Italy). I am finding that I really like Holland, and maybe the journey 'ain't so bad.....I would NEVER want to choose my DD to have anything that slows her down or sets her up for a harder path though life- but maybe we are okay, after all. It ain't Italy, but Holland has the most beautiful flowers- and some pretty darn good artists of their own.

My only wish is that my parish, and perhaps other churches, would recognize how many parents and members are dealing with issues- and provide a support group for all of us! There are support groups for those who are single, divorces, etc., but I rarely see any for individuals or parents of individuals with disabilities. It's too bad that we have to rely on long distance support when our faith caregivers could offer it right in our own backyard!

Thank you all, and God Bless you for listening and caring and responding! Perhaps, in a silly way, this is what Walt wanted to create after all- a world where people could interact, learn from, and support one another. In a way, maybe the internet, and the DIS are an expression of his vision of Epcot!

WildGrits
04-16-2007, 02:02 AM
Val your not the only one.

I put my girls in a parochial school in hopes it would be as strict as the southern school they where use to. They where unbelievable. They even went as far as to refund half a year tution to me just to get rid of us. My DD with high functioning Autism only has two needs on her IEP. Sensory Diet--which I came to school daily to do with her and to be tested in a room alone so not to be distracted. They couldn't comply with that. During one of my many meetings with Sister Principle she told me that I should get my DD medicated and if I did that she would thank me herself. I asked her what was this miracle pill for Autism. Needless to say that year was 10 months of pulling my hair out.

WildGrits
04-16-2007, 02:07 AM
She told me that it was...these are her words..."Probably not my fault that my son was retarded." In fact, I should blame it on my ex...who was military. Because...now here it comes..."Many military members got the anthrax vaccine. After getting the vaccine, lots of babies were born retarded, without limbs, and abnormal. So, it's probably his fault that your son was born retarded." Yea...thanks for sayin' that. Made me feel all better inside.

I'm sorry this fools comments hurt you. And sadly it sounds like she was trying to be kind in her own way.

I know my fellow GRITS (Girls Raised in the South) will agree with me. The perfect reply to comments like this is, "Well bless your heart".;)

dclfun
04-16-2007, 06:35 AM
With the recent incident over the Rutgers basketball team and the firing of Don Imus there seems to be so much media attention over hurtful racial slurs, etc. To me, the word "retarded" is just as offensive and hopefully people will get to talking about how to be kinder to each other. It's not just being politically correct-it's about valuing each other and our differences and not doing anything that would knowingly hurt another person. ---Kathy

wvdislover
04-16-2007, 07:09 PM
Goofyluver: I'm so sorry your co-worker made such a rude comment! Sending lots of hugs your way :grouphug: People can be so hurtful without realizing what they're doing (ok, so maybe they sometimes DO realize what they're doing). Know that you always have friends to turn to :goodvibes

Val: I hate to hear about your difficulties with your parochial school. We would love to be able to send our daughter to a good Christian school, but unfortunately, the one closest to our house doesn't even accept special needs kids, b/c they don't have the resources to help them. You'd think a Christian school would be more than willing to do anything to help someone. Hope things go well for you in public school! :)