Dillards 36: Seating for Family of Four Now

[Hashtag Blessed]

@VelociRapture and @allthegoodnamesrgone, you two are obviously the data outliers in my super scientific study of the human female. The lucky exceptions that prove the rule! 

But you know, you're only really righteously in love if your fathers hand picked your husbands with a 50 page questionnaire. 

[BlackberryGirl]

When I was 15 I was sent to a summer camp for kids with disabilities run by the Rotary Club. My disabilities, asthma, hearing loss, mild CP, were not as visible as some of the kids. 

The next to the last night we had a special dinner and members of Rotary were there. We had to kind of walk a gauntlet of cooing  middle aged women, thanking them for the crappy camp. One woman was actually ASKING kids "and what's wrong with you, dearie?"

My answer?  "tertiary syphillis." That shut her up fast.

 

years ago Ann Landers had a great answer for people who asked horrible none of yer business questions.  "If you'll forgive me for not answering that, I'll forgive you for asking."

[MadeItOut]

6 hours ago, BlessaYourHeart said:

...Anyway, the condition causes awful headaches, worse than any migraine I've ever had; lapses in vision and a sudden feeling of being 'spaced out' at times. It's scary when all the symptoms come together. Painkillers don't help the headaches at all so I end up spending days in bed unable to do much. 

A few of my mums friends and family members have made comments saying that I'm lazy and should be out working on the summer break from uni. When she tells them I have bad headaches they say take painkillers and I'm just being a lazy wimp looking for excuses. It hurts because I'd love to be out working but it just isn't possible at the minute; I'd rather do anything than be bed bound unable to even read because my heads that bad...

That sucks - big time! 

When I was first diagnosed with my ABI (when it was first becoming prevalent that is), as odd as it sounds, the only thing that helped in any way at all was either to go to bed, or occasionally, I had a friend who was an acupuncturist and she would do acupressure on my feet would you believe and that did just take enough edge off the pain to make it slightly more bearable.

Hope you find a good pain management strategy in time for next semester.

[Nikedagain?]

12 hours ago, InTheNameofRufus said:

I understand completely, @Beermeet! My son was born with Muscular Dystrophy, but was not specificaly diagnosed until age 10. (Local doctors called it a mitochondrial disorder and would not diagnose further) He walked with an abnormal gait for most of his childhood, and never really ran. In public places, he would be either ignored, given looks of pity, or in some cases, get rude comments from ignorant people. Now, at age 14, he has found his voice and a really wicked sense of humor.

He's now one of my heroes! I get a lot of "But she LOOKS so NORMAL!"  Idiots.

So I decided to passively-aggressively do a preemptive strike.

I got her a bunch of shirts in this vein: 

 

 

[MadeItOut]

3 hours ago, Kak said:

I think I get the general point of your post, but I don't understand the sentence above. Can you put it more simply? Thank you.

I'm so sorry. Communication can be rough on difficult brain days. Let me try to do it better.

Person A is otherwise able, Person B is conventionally able. 

Social model = Cool. Do we need to adapt anything for anyone? Yes - let's do it / No - perfect, so to the matter in hand

Medical model = Person A is a lesser person, except you can't say that now because of the PC people and lawsuits, so let's find a way to make it clear without getting sued: "Ah bless" / "You're so brave" / "I don't know how you manage" / "Do they take sugar?" etc etc

Most of the world (at least legally) is now set firmly in the social model - every individual is equally meritous and has an obligation as a part of society to contribute in whatever way his/her personal capacity allows. 

Where the worry came in was, with all of us very concerned for Jill and her baby, supposing one or both has an altered capacity now, it would've been so easy for the discussion to slip into a place of, 'oh that's dreadful' (which is likely the way the tabloids would go in such a situation), which would've been a shame for us all if we'd landed up there.

- I'll give you a recent for example of media attitude around such things to show where the worry comes from (apart from the stories all round up-thread): The road safety people here ran a big campaign against drink driving around Xmas last year. Not a problem in and of itself, until you know what the ads entailed. There were benches being put into shopping centres painted with the 'this is for disabled' symbol with boards next to them saying "Better dead than disabled", and poster, radio and TV ads showing pictures of TV-ready beautiful people who've been in accidents, with them in a split screen sobbing and explaining how they'd rather have died and all with this same strapline of "Better dead than disabled". 

This campaign received nearly 25,000 complaints. No complaints were upheld because they couldn't find anything factually wrong given that it was the belief of the people appearing. ...and I should point out, where ads are typically staffed by actors, there was no casting brief for this one. Folks were surveyed and asked to appear or not based on 'recent' accidents (sadly we were never given any scale on 'recent').

 

In our context, the more time is passing, the less likely it is that the Dillards will reveal any otherwise able status - at least by now, we'd hope whoever handles their press releases isn't going to be stupid enough to try to sensationalise it. At the same time though, look who we're dealing with...

42 minutes ago, BlackberryGirl said:

...One woman was actually ASKING kids "and what's wrong with you, dearie?"

My answer?  "tertiary syphillis." That shut her up fast.

 

years ago Ann Landers had a great answer for people who asked horrible none of yer business questions.  "If you'll forgive me for not answering that, I'll forgive you for asking."

Class! ...on both fronts!

7 minutes ago, Nikedagain? said:

He's now one of my heroes! I get a lot of "But she LOOKS so NORMAL!"  Idiots.

So I decided to passively-aggressively do a preemptive strike.

I got her a bunch of shirts in this vein: 

 

 

That's so cool!

[JoyJoy]

We finally got to meet Sam, he's a cutie.

I think the Dillards are in hiding because of their stupidity. They don't know how to spin it. None of the articles I've seen about the new season mentions Sam's birth. I don't think Jill had a hysterectomy. They will have more kids, just not 20.

[Kak]

2 hours ago, JillyO said:

https://en.wikipedia.org/wiki/Social_model_of_disability

https://en.wikipedia.org/wiki/Medical_model_of_disability

Basically, the medical model of disability assumes that something is wrong with a disabled body, and seeks to correct this perceived wrongness. The social model, on the other hand, seeks to empower people with disabilities, rather than to "cure" them.

Thank you @JillyO, very interesting and thought provoking. So important.

My experience of disability is of a close relative with a profound and life limiting disability; the family are just taking each day at a time at the minute TBH. Her situation is at the extreme, and I hope people understand when I say we would love her to be 'fixed'.

Just saw your answer too @MadeItOut, thank you.

[JillyO]

1 hour ago, MadeItOut said:

I'll give you a recent for example of media attitude around such things to show where the worry comes from (apart from the stories all round up-thread): The road safety people here ran a big campaign against drink driving around Xmas last year. Not a problem in and of itself, until you know what the ads entailed. There were benches being put into shopping centres painted with the 'this is for disabled' symbol with boards next to them saying "Better dead than disabled"

What the FUCK?! Where was this, if you don't mind my asking?

[Nikedagain?]

WHERE WAS THIS??

Last year, my daughter's self contained class had a long term substitute who was simply awful. She treated the kids like they were literally lumps of clay. She talked about them in such a demeaning way. So I got this shirt. (Then I made sure they got rid of her.)  

 I have NO PATIENCE for people who treat the disabled like they are less than human. 

[Queen]

7 hours ago, BlessaYourHeart said:

 

If people can't physically see that there's something wrong with you it's awful because they just assume it's nothing. 

Amen to that! You (or I, at least) have to constantly remind people of why I can't do a certain thing, or why I need help.

The upside of having invisible disabilities is that people often treat me as a normal human being, and I can often decide when/if I tell people about my condition. On the other hand, people tend to forget I'm I'll, not understand my sickness (mental illness is still scary to some), and give other people with physical illnesses or disabilities a pass, i.e. every shitty thing they do is automatically excused. Last fall I was close to psychosis and really afraid I would take my own life, but all I got from some people was "don't be so dramatic". I also had no right to be sad, because I had been acting stupidly so no mercy on me, and even though that's true everything still hurt. Thankfully I have a great therapist and a lot of support from my gf and my family. 

[Stormy]

My dad has amyotrophic lateral schlerosis (ALS, aka Lou Gehrig's disease), which is a late-onset, degenerative disease causes muscle atrophy and gradual paralysis of the entire body. Because the respiratory system is affected by the paralysis, ALS is terminal. The average life expectancy from point of diagnosis is 2-5 years. My dad is already a year in, and so far is in a power chair, has lost his ability to walk, drive, and use his fine motor skills, and we're seeing evidence of his vocal chords becoming weaker.

I'd give anything for him to just be disabled, not dying. When he was exhibiting the first symptoms and the phrase "ALS" first entered our radar, we were literally praying for him to have something like muscular dystrophy, or an illness with an actual survival rate like cancer or a stroke. I feel this weird dissonance whenever I see non-terminal disabled people kicking ass; I just wish that could be my dad. I feel so envious towards all these people I used to see zooming around in power chairs around my college campus since they're able to carry on with their lives. People who say they'd rather be dead than disabled don't know what the fuck they're talking about.

[PainfullyAware]

7 hours ago, BlessaYourHeart said:

If people can't physically see that there's something wrong with you it's awful because they just assume it's nothing. 

Having an invisible illness or disability absolutely presents its own challenges. The main one being invalidation by non-disabled people who usually associate a disability with something they can see; usually a cane or wheelchair. It's awful not to be believed and I'm really sorry to hear you've experienced that! I've found online support groups helpful to have that understanding and validation. Sharing my diagnosis was so hard in the beginning (fibromyalgia) but over time I've started advocating more for myself and education my family and friends. Some have been amazing and others I've just let go of because I don't need that negativity!

I just wanted to add a little bit about the social model of disability versus the medical model. The social model says the problem resides in the structure of society and not the body of the person with the disability. A simplistic example would be that if someone in a wheelchair cannot work in an office because they don't have wheelchair ramps, the problem isn't that the person is using wheelchair but that the office building isn't accessible. So the idea is that just because people may have different abilities it doesn't mean they have a "problem" but that society needs to adapt.

[Fun Undies]

2 hours ago, BlackberryGirl said:

-snip- One woman was actually ASKING kids "and what's wrong with you, dearie?"

My answer?  "tertiary syphillis." That shut her up fast.

years ago Ann Landers had a great answer for people who asked horrible none of yer business questions.  "If you'll forgive me for not answering that, I'll forgive you for asking."

I have alpha one antitrypsin deficiency and asthma.  Because of my "rare" comorbodity, I like to raise awareness and have an Instagram about chronic illness.  I rarely mind when people ask, but it also all depends on the intent.  I do strongly believe though, that if you ask someone a personal question  (including medical), be prepared for a personal answer  (which can, but is not limited to "fuck off").

That lady at the camp was out of line though . . .

14 hours ago, RosyDaisy said:

I have Meniere's Disease. One day I was at a store shopping and had a bad vertigo attack. The manager told me "get your wasted ass out of the store before I call the law".-snip-

I had an asthma attack earlier this morning (no one told me they had used polyurethane to "buff" my hardwood floors for the house renos - I've been staying at my mom's for the last week, came up to sign papers with the realtor).  I left my inhaler behind!  So I go to cvs, and they hurridely refill my ventolin.  The guy asks me something, and by now im slurring my words.  I mumble, "I'm not drunk, I swear - my asthma - "  and he kindly replies, "I didn't think you were, I know."  Then walks me through the transaction so I can take my puffs.  I'm always scared people will think I'm drunk, or high and not help me if I'm suffering in public.  So you literally just described my worst fear!  I'm sorry that happened to you :/

On 7/28/2017 at 0:14 PM, Hashtag Blessed said:

-snip-

I feel like people need better education on service dogs, too. I was at a major theme park not too long ago, and there was a man with a service dog sitting near us on some benches. Strangers came up to him to ask what the dog was there for, which took me aback cause that's a personal question I would never dream of asking a stranger! Then the dog started howling because one of these rude people was carrying an ice cream cone, and wouldn't ya know it, her job was to alert at the scent of dairy. At least her howl startled them away. I mean, I get it dogs are cute, but that whole thing made me so uncomfortable and I was just a bystander. I can't imagine fending off that sort of thing all the time. 

I didn't know much about service dogs, except not too touch them.  But years ago, a blinds classmate at my college was walking beside me, and when we stopped at a light, he started licking my hand.  Since he initated, I rubbed his snout and head and complimented how sweet he was.  And the girl was kind, but said he's still training and shouldn't be doing that :p. So yeah, leave the service dogs alone please - they might be training still!

[Stormy]

10 minutes ago, Fun Undies said:

I didn't know much about service dogs, except not too touch them.  But years ago, a blinds classmate at my college was walking beside me, and when we stopped at a light, he started licking my hand.  Since he initated, I rubbed his snout and head and complimented how sweet he was.  And the girl was kind, but said he's still training and shouldn't be doing that :p. So yeah, leave the service dogs alone please - they might be training still!

It had always been drilled into me to ask before petting someone's dog (to prevent bites, mostly), so I actually learned about not touching service dogs after I asked a blind guy if I could pet his. He told me not to, but thanked me for asking because apparently no one else ever did. (Your case makes sense, though, since the dog initiated; I guess he really was still in training if he did that.)

[Beermeet]

14 hours ago, InTheNameofRufus said:

I understand completely, @Beermeet! My son was born with Muscular Dystrophy, but was not specificaly diagnosed until age 10. (Local doctors called it a mitochondrial disorder and would not diagnose further) He walked with an abnormal gait for most of his childhood, and never really ran. In public places, he would be either ignored, given looks of pity, or in some cases, get rude comments from ignorant people. Now, at age 14, he has found his voice and a really wicked sense of humor. He is in a wheelchair for most of the day, as his body is growing faster than his muscles. The reactions he gets from other people vary greatly. There are a lot of understanding people out there who will go out of their way to hold doors open, smile, or talk to him.  Some rude people will ask "What do you need a chair for? You look fine." Those people usually get a smart ass response, as I have told him he will not be punished for snark to obnoxious questions. I usually have to hold back a laugh when I see some of the reactions he gets to that. 

Stay strong, have faith (whatever gives you happiness) that your child will continue to be a happy, smart, confident boy who has the love of his family. As my son says "Screw what everyone else thinks. I'm doing my best and if it's not good enough for them, they're idiots" 

Oh wow!  Hi, nice to "meet" you.  My son is 14 and has Friedrich's ataxia  ( a mitochondrial disorder).  FA just teamed up with MD to join forces in a cure.  We found out 2 years ago.  It's been very rough on me.  My son is doing well though.  Hard to tell at 14.  He has a good attitude but I do pick up on sadness.  

We're in the same boat.  I wish you and your son all the best and hopefully we can find a cure or something to slow progression soon!  Thank you so much for reaching out and sharing.  I can feel so isolated.

And, thank you, everybody on here who shares whatever difficulties you have had or overcome or are going through.  You are all giving me strength!  I appreciate your honesty so much.  

[Rachel333]

@MadeItOut Do you have a link to that campaign you mentioned? I've been googling and haven't found anything.

[ItsMeY'all]

I have several health problems some of which are "invisible" and too many stories    as well! There are of course the stories about me having a bad day and needing to sit on a tram/bus and getting criticized, dirty looks for using handicapped spaces, and hate for using the handicapped services at places like Disney! And of course the drunk and drugged comments. I ended up in the er with a virus on New Years Day this year and had a horrible time convincing the staff I can't drink because of health issues and was seriously just sick, not hungover. 

The one that happens the most often to me is the one that has always bugged me the most. While I take medication that greatly aids in maintaining a proper sodium potassium balance, sometimes things still get off and I need more sodium. I'm supposed to add more salt to my food if it sounds good (and take more medication as the salt is only a short term partial fix). I have had at least 100 people criticize me while out eating when they observe me salting something. I'm talking older adults telling me if they had someone correct this behavior when they were younger they wouldn't have needed heart surgery at 70 so they are actually doing me a favor and not being rude. When there isn't a salt shaker on a table I've had wait staff tell me it is because salt is bad for health and lecture me that no one needs additional salt. Mothers have informed me they don't want their kids to see me salting my food because they are trying to prevent their kids from  from developing this bad habit. When I tell people I have a condition where I don't retain sodium and this is literally medically necessary and prescribed  I've had people tell me I should get new doctors ecause clearly my current ones are idiots. Apparently the rules of chemistry within the human body have changed since I was in school according to all of these geniuses. 

[InTheNameofRufus]

38 minutes ago, Beermeet said:

 

We're in the same boat.  I wish you and your son all the best and hopefully we can find a cure or something to slow progression soon!  Thank you so much for reaching out and sharing.  I can feel so isolated.

Nice to "meet" you too, @Beermeet!

Thanks for sharing about your son! So glad he's doing well! I was not aware that MDA had teamed up with FA to find cures, that's amazing. My son's condition will stabilize, then decline, then improve. It's been very hard on my husband, as he  thinks he doesn't have a son who can play sports or run around with. (I think he overcompensates with my younger son) My 14 yr old is great about telling and showing his dad what he is capable of, and joins right in with whatever his brother does, in his own unique way.

I understand the feeling isolated,too. This community has really been a great place to share, and even though I joined recently it has been very welcoming. If you ever need someone to "talk" to, feel free to DM me. (I will figure out how it works on here!!)

Thanks to all for your kind words and support! (I love thread drift!!) 

[MadeItOut]

2 hours ago, JillyO said:

What the FUCK?! Where was this, if you don't mind my asking?

ROI. Made me sick every time I saw it. At least it was only a short campaign.

27 minutes ago, Rachel333 said:

@MadeItOut Do you have a link to that campaign you mentioned? I've been googling and haven't found anything.

Ooo interesting. I can't find anything now. They appear to have removed it from their site too. The Google for it links to pro disabled articles of all kinds. Wonder if someone had a quiet word with them after all?

[shiverful]

My aunt have a five year old son with severe autism. He struggles with language and can often throw tantrums when he's not understood or not understanding. He also have a need to control things e.g push the button when in an elevator or walking slower or faster than normal when he is out. 

They are getting help and he has made a lot of progress in some areas, but still he behaves very differently than you would expect from a "normal" five year old although he looks completely normal. The most important thing is that adults behave as calm as possible when he's having a hard time. 

Unfortunately people can be very rude towards my aunt and uncle when they are out in public, often situations have ended in people yelling at my aunt and uncle (for not disciplining their child) or at their son (for not behaving). I understand that it can be annoying to be around him, but he is not hurting himself or others and people shouldn't presume without asking. 

[Rachel333]

27 minutes ago, MadeItOut said:

ROI. Made me sick every time I saw it. At least it was only a short campaign.

Ooo interesting. I can't find anything now. They appear to have removed it from their site too. The Google for it links to pro disabled articles of all kinds. Wonder if someone had a quiet word with them after all?

Interesting, I wonder what happened there. Seems odd that I can't even find any blog posts talking about it!

[VelociRapture]

4 hours ago, Hashtag Blessed said:

@VelociRapture and @allthegoodnamesrgone, you two are obviously the data outliers in my super scientific study of the human female. The lucky exceptions that prove the rule! 

But you know, you're only really righteously in love if your fathers hand picked your husbands with a 50 page questionnaire. 

Well... shit... I guess we're well and truly fucked then. 

@shiverfulMy MIL's cousin has a teenage son who is non-verbal and lives with Autism. I only met him a few times, but it always made me a bit sad. He's clearly a smart young man who just has a lot of trouble communicating and socializing with others. That has to be ridiculously frustrating for him at times. 

That's part of why I try not to judge parents whose kids act up in public. You don't know just by looking at the child whether they've been diagnosed with something like autism or they live with a disability or if they're really just being a bit of a brat. I'd rather just smile encouragingly or, if the moment seems right, do something to try and make the kid laugh. 

[bella8050]

I had active rheumatoid arthritis until I was 14, and still have effects from the joint damage now that are getting worse. Went through a whole range of reactions from kids in school - a group of friends that disowned me because they thought they might catch it from me. Second grade teacher who called my mom crying on night after I had a really bad day at school and had a meltdown, she was super sweet and comforting but her reaction later made me uncomfortable. I know she meant well, as did my family when they would say how sorry they were for me but it made me feel like crap. In turn I did the best I could to hide being in pain because I just wanted to be treated normally and not get pity stares or platitudes. When I moved out of state the RA had become inactive, besides some range of motion issues I could blend in as "normal" and decided not to tell any of my new friends about my condition because I was so over talking and dealing with it.  Broke my ankle shortly after moving and couldn't use crutches so had to use wheelchair to get around school. New friends thought it was weird, then would fight over who got to leave class early with me. One of the few times I was on my own group of girls laughed as I rolled by and one said "I saw her wheel herself into the lockers yesterday haha". Took everything in me not to go back and run over her feet. Another time someone was overly sweet and then overheard her friend asking if she knew me, girl said "no, but she's in a wheelchair." All so bizarre because I just wanted to say I'm still "me" whether or not I needed help walking.

I'm back to not being able to hide my problems anymore, joint damage has gotten too bad and getting a double knee replacement in the fall. Had to clue in friends with what's going on and I hate it. I know they mean well but it's like as soon as people find out you have an illness it becomes the main topic of conversation. Same with family members. Had a birthday earlier this month and I was dreading it because it meant phone calls with the same questions over and over - still can't walk/work? what do you do all day? etc. I'm still working on how to politely say I really don't want to discuss it. I am very grateful for two of my two cousins who never bring it up, they're going through their own shit right now and understand just wanting to have normal conversations about tv, books, etc. They are my relief right now.

[Imagine20]

@Beermeet I grew up with a girl who had FA. I hope they can find a cure soon. 

[livinginthelight]

1 hour ago, shiverful said:

Unfortunately people can be very rude towards my aunt and uncle when they are out in public, often situations have ended in people yelling at my aunt and uncle (for not disciplining their child) or at their son (for not behaving). I understand that it can be annoying to be around him, but he is not hurting himself or others and people shouldn't presume without asking. 

Truth.

My youngest is on the spectrum, my oldest has a mood disorder. Both have sensory integration issues and were triggered by noises. Both look normal. I would be a wealthy woman if I had a dollar for every time someone condescendingly said to me, "In MY home that type of behavior would never be allowed!"  My blood still boils thinking about it, twenty years later.