More and More We're Saying

Discussion in 'The Watercooler' started by nvts, Feb 18, 2008.

  1. nvts

    nvts Active Member

    that we're down in the dumps because our difficult child's are not seen as disabled. I was thinking about the fact that our kids don't have obvious disabilities and we're being looked at as horrible parents who don't have a handle on our kids. (Granted I was thinking about it at 4:00 am after escorting difficult child 3 back to bed for the 3rd time!).

    I don't want to sound like a jerk, but our kids are sometimes in worse shape than someone with an obvious disability.

    The only way I could get my dad to recognize that my nephew (Aspie!) had a disability was when ye was yelling at him...AGAIN! And I said "if he was in a wheelchair, would you shove him out of the chair, hide the remote and tell hime to change the channel on the tv?". Dead stop, stare, stomp of him leaving the room, and a rude awakening.

    People with obious disabilities and are coping are given respect, admiration, love and compassion. They are looked upon as heros.

    Kids with behavioral, develpmental, conduct disorders, autism, mood disorders or mental illness are primarily lookd upon as strange, weirdos, dangerous or losers.

    When they are coping, they are greeted with "thank God he shut up!"

    While it's a double standard, it's not beyond understanding. Human nature is what it is. BUT: think of how hard it is on our kids to not be recognized for doing a great job as opposed to:

    1. Finally, he's acting normal
    2. Thank God he's settling down
    3. What do you think he's trying to get out of me
    4. Here's the calm before the storm
    5. He'll lose it here sooner or later!

    I could go on and on.

    I guess the simple truth is we have to love ourselves, love them, run away in our minds every once in a while and enjoy those occasional "breaks from reality" when he's actually:

    "Your hero in his mental wheelchair."

    Sorry for being philosophical...I think I just needed a dose of empathy for my difficult children!

  2. WhymeMom?

    WhymeMom? No real answers to life..

    Right there with ya!!!!!
  3. hearts and roses

    hearts and roses Mind Reader

    Beth, I totally know what you mean. The other day when difficult child HAD to go to her 3rd day of work completely a mess emotionally and I told her to "$uck it up", I was dying inside because I know how difficult it is for her to get it together - just because I said so or because if she doesn't she will lose this job too. Her emotional state, along with a slew of other difficult child symptoms are the reasons she can't seem to hold her jobs for very long.

    And then I feel guilty for telling her to "$uck it up" because, as you said, if she were in a wheelchair would I not help her in and out of the car? Would I not hold the door for her? Would I not help her shower if she needed me to? Those are just random examples - my difficult child doesn't need help to that extent - but you know what I mean.

    I also know that feeling of "the calm before the storm"...when difficult child seems to be 'level' and fine, simply reasonable. It's disarming for H and me when she's reasonable...we're not quite sure how to respond at times. More and more I am trying not to react before I have something to react to...but I see that H often jumps the gun by being terse with difficult child before she pulls anything - which only sets her off. Can't say I haven't done that myself.

    I recall feeling relaxed at times when she was obviously getting sick with a bad cold or flu or something because then I knew she'd be all mellow for a few days. Not anymore. Now when she's sick, she just keeps on going until she REALLY gets sick, so it's a new worry.

    I'm kind of rambling - I liked your philosophical post. Thanks for sharing your thoughts. I agree that our kids are often worse off and mistreated than would be a person with an obvious physical disability. I've always said that to the educators when I was advocating for difficult child at school. They always gave me the deer caught in the headlights look...duh.
  4. trinityroyal

    trinityroyal Well-Known Member

    Beth, I completely agree and you have put it so well.

    The other side of the coin for our difficult children, though, is that because they look normal people expect them to be normal. The world just won't be as forgiving of them or make accommodations for them the way they do for more visible disabilities.

    I know it's not right, but it is reality.

    I have spoken to difficult child at length about the fact that the world doesn't care whether or not he has a disability. They will be just as harsh with him as they would with anyone else. More so, because his behaviour is likely to be non-standard and therefore, threatening.

    With difficult child's ongoing legal troubles, and his court date looming, I am starting to see that kids with Autism Spectrum Disorders (ASD) and other disorders are so heavily over-represented in the justice system. It's very sad.

  5. Hound dog

    Hound dog Nana's are Beautiful

    Been living that for 21 yrs.

    Here's the ones that gall the heck outta me:

    But he doesn't look disabled.

    How can he read if he's blind? ( legallly blind is not the same as being blind, although almost)

    He's smart, he just needs to try harder.

    I've come to realize that as long as a person doesn't have a physical disability than can be seen and easily understood, people generally don't get it, don't want to get it.

    Travis has CP, mild but he has it. You can see it in his gait if you know what you're looking for, you can see it in his lack of fine motor control. It affects his language processing skills, organization skills, ect. It's blantantly obvious to anyone with a trained eye who spends 15 mins with him. Yet people say to me....

    Are you sure he has CP? He's not walking funny or anything.....

    Travis has absense seizures, is on medications for it. And I still had trouble getting people to believe it. Uh, they don't give people those medications for the fun of it.

    This is gonna sound awful, but I've run into medical professionals with the same attitudes. Now that's when it really ticks me off. They should know better.

    The reason is because the general public is not educated in learning, developmental, and mental disorders. Lack of knowledge creates stereotypical thinking and stigmas.

    Yet, these days you see kids in wheelchairs ect in tv shows.

    I remember the series St. Elsewhere. One of the doctors on the show had an autistic son, severely autistic. This is gonna sound corny, but having that autistic child on the show educated me far beyond my nurses training on autism. And I KNOW that's why I picked up on Travis' behaviors from the start, years before the docs finally varified it.

    I enjoy reading Dean Kontz because he often includes characters with various disabilities in his stories, including downs syndrome, mental disorders, ect. He makes them real to the publice and gives you a glimpse into their lives.

    I'll climb down off my soapbox now. lol Cuz I could go on and on.

  6. dreamer

    dreamer New Member

    Oh drat! Fiddlesticks!
    I just typed a post in reply and UG! It blipped away, and is now gone forever.

    Daiseyover, your post could be MINE re my son! To the letter except my son is not blind nor legally was temporary post surgery for his eye injury. Altho he did lose all vision entirely, includeing light perception in his one eye. My sons CP sounds identical, his seizures sound the same or son has hetrotopia, the wrong brain matter in the wrong places, bilaterally.
    Yes we get the same comments......mostly from school.
    My dtr has severe panic attacks, fight or flight to the extreme......and how many people simply say well, tell her there is nothing to freak out over.
    My husband has Chronic Obstructive Pulmonary Disease (COPD), emphysema....along with a bunch of other health problems, and when he parks in handicapped parking, unless he has his walker or at least his cane, people throw him dirty looks. Worse, when I park in handicapped parking, becuz of my rheumatic illness and Lupus......whhoo boy, I do not get just dirty looks. unless I have my scooter.

    When Buffy was still in school, school would provide an accomodation, and then after 3-6 months would want to remove the accomodation. THey would say well, it has been in place so by now it should have worked and she should no longer need it. Huh? well, she should have learned by now how to do without the accomodation.

    I cannot tell you how many times over the years I have said the same things you said in this post
    nvts. Exactly the same things. Mostly to the school, sometimes to aquantainces, sadly, sometimes to doctors......
  7. Shari

    Shari IsItFridayYet?

    I think this is what I was trying to say in my most in general. Thanks for putting it in a way that makes sense. Sometimes I just think it would be almost easier if he had something physical wrong to go with the rest. At least I wouldn't be just a loser parent with only 3 friends...
    And I know that's not right, physical probably wouldn't be any easier, but you know the green grass and fence theory...
  8. dreamer

    dreamer New Member

    more semi realted observations

    when I use my scooter, people in public try to talk to my husband instead of me as in "ask your wife..." Um, hello, I am on a scooter becuz my legs do not work, my ears and mouth work fine.

    when my son was fresh post eye surgery and his eyes were covered- people would talk to him VERY LOUD. to which he replied, hey, my EARS work great but your screaming is rattling my poor eyes!

    when my rheumy took my history and I said I was bipolar, he said- you do not LOOK bipolar (hmm, what does bipolar LOOK like?) THen he went on to Rx a medication known to cause mania, and I said hmmmm.that makes me nervous, and he said well lets pretend you do not have bipolar. Uh yeah, OK, what a good idea.

    when we told ER dtr is bipolar, and has severe panic attacks, they said the same- she does not LOOK bipolar. Did you ever try to tell her to not freak out? Hmm, I guess that never occured to us?

    The Special Education person at our school often would tell us "there is a pill for that, ya know"? Yeesh.

    The world is used to there being a pill for everything and a quick fix and cure. Instant results for things. Many people just cannot grasp the idea that maybe the pill for this did not work? Many people do not seem to understand there is not a pill for everything.

    when people hear Buffy is bipolar, they begin to look at her strange, as if they expect her to sponateously combust or something. Few people hang around to find out who SHE is, aside from bipolar. It is like they never stop to think she is a human being first, who happens to HAVE bipolar. To them, I guess she is not human, but only A Bipolar or something? And rather than bother to try to learn what it means, they simply leave a wide berth.
  9. trinityroyal

    trinityroyal Well-Known Member

    Lisa, Dreamer, you could have been describing my difficult child as well.
    He doesn't have blindness, but difficult child has suffered from this as well, especially at school. In fact, one of the worst offenders was his 1:1 Educational Aide!!! in Gr. 11.

    Shari, green-grass-and-fence theory aside, I do agree that people believe in what they can see and understand. So, if your child is in a wheelchair, or has leg braces, or Down Syndrome, or something else that's obvious to them, then they understand it.
    It's those situations that look like something they understand (bratty out-of-control kid having a tantrum), but are actually something else (rage triggered by food reaction and sensory integration disorder and whatever else) that lead to so much trouble.

    I agree that everyone dealing with a disabled child has a tough row to hoe. However, those of us who have children with invisible disabilities also have society looking down their noses at us and our children because they assume the cause of the bad behaviour is will rather than disability.

    One of the programs offered at my difficult child's Residential Treatment Center (RTC) is how to behave "normally" in public. It's part of the life skills training, and the program teaches what to do, what to say, how to behave, and what not to do in specific everyday situations. For example, specific instructions about what to do and say if the police stop you, how to ask for help in a store, the library, etc.

    It's funny. So many of the things I love best about difficult child stem from his quirky view of the world. I wish that people would get past their quest for "normal" and see what a great kid my kid can be.

  10. trinityroyal

    trinityroyal Well-Known Member

    Dreamer, I think most people get their ideas about what Bi-Polar looks like from movies like The Snake Pit.

    They expect someone with Bipolar to have Einstein-hair and a bit of drool at the corners of the mouth. I don't really know, but it almost seems as though people feel cheated and resentful that it doesn't "show" somehow.

    People's reactions are bizarre. When I had foot surgery a while ago and switched from crutches to a cane as I got more mobile, I noticed an immediate difference in how people treated me. Overnight, I became invisible, people spoke to me loudly and slowly, store clerks would overlook me in line, and then be very surprised when I spoke up (and did so clearly).

    I think in people's heads certain things just "go" together (like pork chops and applesauce), so when your things don't "go" (e.g. BiPolar diagnosis, with normal appearance), they are disconcerted.
  11. dreamer

    dreamer New Member

    more- semi related kind of-----

    when Buffy was grade 8, she broke her arm in such a way she had a cast from above elbow down covering her hand.....her right side, - she is right handed.
    For spelling they had to write each spelling word so many times. - each week. (I forget how many spelling words, 20 comes to mind, and I forget how many times but 5 comes to mind, plus she was about a month behind) In order to graduate grade 8, she had to catch up her work.
    OK but, gosh, how is she gonna write all this with her left hand, she is not left handed. I came up with this idea she could verablly say the words, spell them, and that should still meet the ultimate goal, of learning the words? Nope, school wanted it in writing. (plus she had other work to do, as well, of course)
    SO they were gonna punish her. Hmm, punishment is gonna do a better job teaching her the spelling words than an alternate way of learning them? Interesting. I even offered to aduiotape her orally saying and spelling the words. Nope, not good enough.

    while my sons eyes were out of use- school refused to permit "books on tape" they also refused to permit him to do work orally. even if it was taped. (grade 5 and 6) They got this brilliant idea to give him detention if he did not read his work- becuz you see, ALL the kids HAVE to do their reading, must be able to read etc.....and reading gets better the more you do (I do agree with that) . Again, quite interesting to me, they were gonna punish the blindness away? What a great idea! (not)
    I did ask them if he were in a wheelchair and had NO legs at all, would they require him to do the required one mile run? Would they fail him for not doing it? Would they dump him out ofhis wheelchair and make him do it on stumps or prosthetics? If he did not do it fast enough would they give a failing grade?
    Sad to say, that is about how school handled Buffys mental illnesses.
  12. slsh

    slsh member since 1999

    "People with obious disabilities and are coping are given respect, admiration, love and compassion. They are looked upon as heros."

    Sorry, LOL. I just couldn't let this go. I couldn't possibly disagree with this statement any more. ;) Boo is yelled at (apparently a wheelchair means he has a hearing impairment?), stared at, excluded, pitied, prayed over (by total strangers), and most often just plain ignored. It literally started the day he got his wheelchair and it ticked me off so much, I bought him a sweatshirt that said, in big red letters, "Aren't my new wheels great?!?".

    And nothing gets me more riled than when I read one of those "inspirational" stories about someone who is "suffering from" whatever physical disability and yet have gone on to blah blah blah yada yada yada. They're not doing anything differently than the rest of us. I'm pretty sure Boo has never ever "suffered from CP". Know what I mean? It's patronizing in my humble opinion.

    Don't get me wrong, I totally understand what you're saying. The stares and snide remarks when you are in public with a difficult child who's acting like a difficult child. been there done that so much, I don't even notice it anymore. But it really wouldn't help in the slightest if they had a big "BiPolar (BP)" tatooed on their foreheads, or if all folks with mental illness had a third arm or some other obvious sign. It would simply open the door to a new and equally frustrating exposure to how those with visible disabilites are treated. It would not provoke understanding or empathy or tolerance. In my very biased subjective opinion.

    Climbing down now... :soapbox: ;)
  13. dreamer

    dreamer New Member

    trinityroyal-you reminded me of something intersting that happened.

    In theory when there is a person in a wheelchair etc around, people will be extra courteous, hold open doors etc? Oh my, I found out that is NOT always the case! Now from talking with others who use wheelchairs etc, many dislike the extra "niceness" and find it humiliating, but, hey I was new to scooter use and could use a hand sometimes.
    Well, ooooh boy, were my eyes opened.
    In my own town here, (which I later found out has been dubbed "Rudestock" by people from all over the world, when they post about my town online) It is VERY rare for ANYONE to hold a door for someone on crutches, or in a wheelchair or on a scooter. In fact, I find MORE people seem to cut me off, (or I watch them cut others off in wheelchairs etc) permitting dorrs to slam in my face. UG! I went to an outdoor country music concert once, my husband was in a scooter, and YIKES later at nite, a young couple, drunk, leaned against him and um....engaged in um......some horizontal danceing? Leaning on my scooterbound husband! Yeesh. AT various parades and fireworks displays when I was in my scooter, I also had strange experiences. Often small children would come along and plop themself ON my scooter. (as if it were a public seat)

    when I go to our courthouse at security checkpoint, they tell me get up, we have to scan your scooter seprately. Hm, well if I COULD get up THAT easily, why would I be on my scooter? (my husband has found same to be tru if he goes with his walker)

    when I was at U of I chicago, another man in a scooter intentionally crashed into me in as to cut in line ahead of me. When I was trying to get the elevator, I would hit the up button, but before I could get my scooter thru the people to get ON the elevator, the doors would close again. This happened 7-8 times before I was finally able to get thru the other people and board an elevator. They must have found it amuseing?

    when I had my son at pre surg for his eye, when it first happened- I was on my scooter and going back to room, a doctor said to me, hey lady you cannot take your child back to prep room with you I was like uh, HE is the patient, I am his mom. I guess they simply assumed the person on a scooter would be the patient?

    When my dtr was haveing IEP meetings in middle school, her school was 2 stories, so it did not have an elevator. They held her IEP meetings on 2nd floor. I FINALLY got them to understand it was illegal for them to have them in a place I could not access..but then, when they moved them to first floor? They held them in a room that was so small, my scooter could not get INTO the room......yeesh.

    Last week when I was in court for my mothers estate probate, another lady was in court in a wheelchair. She was sitting in the aisle, becuz there was no room for her wc to go further. the judge called her case and ACK! across the entire crowded courtroom, he yellled across to her and she had to yell back aross to the judge. YEESH!

    So, even with non hidden disabilities there is a good amount of weirdness to life. and people can still be quite non understanding and rude. I guess then it does make sense that those with hidden disabilities or brain disorders can be treated so badly.

    With the sensationalism of crimes like the NIU shooting etc, I am afraid people might become more less than nice to our mentally diagnosis'ed kids. :-( It is very sad. Life is hard enough for our kids and for us. I fear it may get harder. I am very afraid people are going to become more afraid and more judgemental.
  14. dreamer

    dreamer New Member

    intersting observation-
    tried to get a hotel room, asked for a handicapped accesible one.......for me, husband and 1 child? Um, nope, none of that hotels had handicapped accessible with 2 beds. I guess handicapped people won't have either a parent with or a spouse with or a child with or an assistant or something? I dunno.

    Asked for a handicapped room with smoking permitted? Nope, handicapped rooms were all "non smoking" They sounded appalled that handicapped person might smoke, or be with someone who smokes? Also struck me odd, handicapped room was on SECOND floor? Oh yay. what if elec goes out and elevator does not work, or elevator malfunctions?

    Another time got a handicapped room, with handicapped bathroom, BUT the room was so small by the bed, the with-c would not fit!

    I was going somewhere once, gonna use my scooter, inquired about accesibility and the other person found out I was coming ALONE and freaked. Gosh, wasn't someone anyonne coming with me?

    Newsflash, even people in wheelchairs might smoke, might drink alcohol, might have s-e-x lives, heck might even do illegal drugs, and might even engage in other criminal behavior.

    Another newsflash.....
    when people hear Buffy is bipolar they want to know how many times she has been arrested.
    Um---not ALL bipolars are violent, they are not all criminals, they are not all drinkers and druggies. They have not all been arrested and not all have criminal records.
  15. Star*

    Star* call 911

    seen on a car parked in a handicapped spot - by a man who seemingly was very healthy - and I laughed....outloud too.

    I'm glad my disability is more invisible than your stupidity.

    Gotta love that. :tongue:
  16. dreamer

    dreamer New Member

    star, LOL.I was pouring a cuppa hmj and mumbling about this thread and husband came upon me and said dear.....
    at least our disabilities are not some peoples. I said and what do you mean? he said well, stupid can be more disableing than lotsa other disabilities. LOL. Then I came back here and read your post. LOL.

    Hmmm, I wonder if there is a pill for that?
  17. susiestar

    susiestar Roll With It

    Nope. NO pill for stupidity or ignorance.

    My mom used to tell me all the time that at least I wasn't stupid or even ignorant like the people giving me a rough time because the fibro and arthritis.

    I was just allowed to drive this last week, and husband parked in the handicapped spot for me. I was having a hard time and needed him to drive.

    Once we were in the store a lady came up to me and tried to chew me out for using the handicapped spot and sticker. I told her she was being ignorant, there are LOTS of us with diseases that do not show. And I walked away, leaning heavily on the cart.

    I hate the idiocy of many people when it comes to invisible illnesses.

  18. nvts

    nvts Active Member

    Uh-oh! I didn't mean to start getting people's knickers in a twist!!!

    Slsh - trust me, I know how people talk down to people in wheelchairs! That's why when our kids were old enough to walk around in stores (rather than ride in carts) we made sure that they looked at other people as exactly that: other people. Not white, black, handicapped, loud, obnoxious, etc.

    Now that DID raise a problem though. Since my kids all go to schools with behavioral problems (that's our only alternative where we are right now!), they're in very integrated schools. Kids from ALL walks of life, with many, many diagnosis's, disabilities, etc.

    They're all pretty bad with names. So whenever there was a problem with them and another student, they'd always describe him/her as "the kid in the blue/yellow/striped/orange shirt". Trying to discuss this with the teachers was always difficult, but they understood our outlook!

    My point was that people are ignorant, judgemental and cruel, but ordinarily they have the good taste to try and PRETEND that they care about people with special needs that are visible.

    Wait 'til I fill you guys in on my plans with my sister for April Fools Day! You'll either love me or hate me, but I think you'll all have a really good laugh!!
  19. Hound dog

    Hound dog Nana's are Beautiful

    Nah, don't worry about it nvts. Posts like this just let us vent our frustrations.

    Just thought of another one, this one related to physical disability.

    Travis was walking to the library using his white cane. Someone nearly hit him as he was crossing the street with the Walk sign, then had the gall to stop and yell at him.

    Travis asked if they were too stupid to know what the white cane meant?

    They yelled back, "If you're blind, why are you walking?"

    So Travis yells right back, " Would you rather I drive to the Library??"


    So, yeah. It can be just as bad with a physical disability.

    Oh, and someone want to explain to Krogers that you shouldn't hire a legally blind person to mop and wax your floors and then complain when there are spots that are missed. Lordy. DUH *snort*

    I could come up with these all day. lmao
  20. slsh

    slsh member since 1999

    OMG, Lisa - just snorting here. Bless Travis' heart!!! He is a quick witted soul! Love it!

    nvts - no bunched up knickers here, at all!! It's just been our experience that ignorance from people in public situations crosses all disability lines - visible or not. I've gotten pretty intolerant of it.

    Saw a T-shirt that I really wished I had bought for Boo 2 summers ago: "Keep staring, maybe I'll do a trick" :rofl: