Dillards 36: Seating for Family of Four Now

[frugalitymom]

Something looks different about Jill in a good way.  It might be the natural look or the fact she might be happy to be out even if it's eating pizza in the car.

[HarryPotterFan]

Isn't Gothard anti-pork? I vaguely remember JB claiming they don't eat pork once. I see Jillymuffin is enjoying some pepperoni pizza. 

[Beermeet]

4 minutes ago, HarryPotterFan said:

Isn't Gothard anti-pork? I vaguely remember JB claiming they don't eat pork once. I see Jillymuffin is enjoying some pepperoni pizza. 

It her rebellion.  Like Jingers's pants.

 

[Stormy]

1 hour ago, Beermeet said:

I just wanted to say I understand.  I understand your feelings.  I'm so sorry you and your family have to deal with ALS.  That is what Stephen Hawking has right?  What are they doing for him, he's 70 now.  Apparently that ice bucket challenge funded some great research and if I remember correctly,  a drug to help?  If you haven't already, search out support groups for ALS.  Not the venting kind but info sharing kind.   I belong to one for parents of FA'ers.  It's actually both but the info part is invaluable.   If it would help, I could ask my group if they know of one.  

Much love from me to you!

 

1 hour ago, Ali said:

Steven Hawking is an outlier for the disease. Most don't make it past five years. A.L.S. is a horrible disease. I am not up to date on all the treatments. A quick search showed me that the only treatment other than palliative slows the disease in some individuals.

I had a family member die from this disease. You have my sympathies @Stormy. P.M. me if you want.

First and foremost, I want to say thank you both for your sympathies. It's nice to talk with people who have an idea of what it's like; most of the people we've confided in have been great, but it feels like they don't ever want to talk about their own problems with us afterwards. I hate that; ALS has pretty much taken over our lives for the past year, and we don't want all other aspects of our lives to stop.

@Beermeet, I'm so sorry and I can't imagine having a child go through that. My dad at least got 50 years of being healthy. I actually had no idea what FA was until today, but I can assure you now that it'll be on my radar. Much love from me to you, too!

Regarding Stephen Hawking, I know that the reason he's considered an outlier is how he's managed to live so long (he's actually 75!). He was diagnosed in his 20's and given two years to live, then progressed at a normal rate throughout the 1970's (needing a wheelchair, losing all speech, etc.) and...here we are. Most ALS patients die from respiratory failure, and I don't know if he's had problems with that at all or not. I know he's concerned about losing the sole function he has in his cheek muscle that he uses to operate his speech device and that he can't really control his wheelchair like he used to. My dad thinks that you can "keep anyone alive" with enough money (meaning ventilator and breathing devices) and that's why he's alive, while my mom is starting to doubt Stephen Hawking even has ALS.

At first the only drug even remotely effective at treating ALS was Riluzole -- which adds a whopping two to three months to an ALS patient's lifespan -- but now the FDA has approved a drug called Edaravone that has seen some success in Japan. The problem is that no one will have access to it until the end of next month, which is enough time for my dad to progress to the next stage of getting worse. Granted it's a drug intended to *slow* the progression of the disease, not reverse it, so we need it yesterday. It's pretty frustrating, and I may just take you up on the P.M. offer sometime, @Ali. (Thank you for that; also, I'm so sorry for your loss.)

[Eternalbluepearl]

Of course Jill and Derick's pizza was free.

[Baaaaaabe]

Does anyone else feel defrauded by Dwreck's shirt? 

[Stormy]

In Jill news: why didn't they go inside and eat? Do you think maybe they want to avoid people coming up and asking them for details? I doubt they're truly that famous, but it's a thought.

Otherwise, I'm fairly pleased to see that Jill at least got out and about. She's also looking pretty good, too, so here's hoping she made a full recovery!

[SapphireSlytherin]

28 minutes ago, Stormy said:

why didn't they go inside and eat?

I've never seen a Dominos with inside seating. AFAIK, it's carryout/delivery only.

[trisprefect]

@Stormy I'm so sorry to hear about your father. My fiance works for the ALS Therapy Development Institute in Boston (they're the ones who did the ice bucket challenge) and we've interacted with a lot of the patients who work with the organization. There's a lot of really solid clinical research being done there -- fiance is a neuroscientist who works on gene therapies with stem cells. Anyway I don't know how familiar you are with the organization but they have a lot of fundraisers (5Ks, bike treks, etc) to promote research, but they also end up being a great opportunity for patients and families to get together with other people who understand what they're going through. Just wanted to share if it's at all helpful!

[Quiver Full of Kittens]

13 minutes ago, SapphireSlytherin said:

I've never seen a Dominos with inside seating. AFAIK, it's carryout/delivery only.

The one by where I just moved has a seating area with ten to fifteen tables. First one I've ever seen like that. 

[sassyNoz47]

14 hours ago, nastyhobbitses said:

Even then, a lot of non-verbal people can still understand you and interact, but just have to get their point across a bit differently. A family friend has a severely autistic son who is non-verbal, and while my conversations with him were pretty...one-sided, he could still respond and interact, just in his own way.

Disabled people are people. They should be treated as such.

Thank you for this! My daughter is non verbal was verbal and typical until age 3. Regressed into autism very quickly . Lost all skills and all language. It's been a long road but with age she's Become so much easier. Still non verbal but she communicates. The child understands everything said I mean everything. We've discovered she's actually quite a nosey little thing which is so very typical of her age lol. 

When she got older stopped having any meltdowns , behaviors etc. she's never "stimed" people don't realize she's autistic. Sorry to those you don't like the word but it's just a condition she has it's not who she is. Anyway she's usually talked to and interacted with like every other typical person out there. My kiddo has great eye contact and is able to express so much of what she's thinking /feeling just with her eyes. When people talk to HER and not to be about HER with her right there it makes her entire face light up. I started seeing a huge change in her when I noticed one day we were at a lab. They called her name for blood work. She stood up and the guy told her to go with him. I got up to tell her but she was already following him. He told her they were drawing blood to put her arm a certain way etc. always in the past I had to hold her down for this type of thing. 

I felt so guilty when I saw my little girl do exactly everything he said with out me saying anything. She was beaming and I was like -- how stupid of my as her mother to turn to her always and repeat what someone just said. It sounds the same from me as from others. How degrading I saw it was for her when people would tell me this and this about her with her right there. This lab guy had zero idea she was different abled. 

It's sad it took that moment for it to even click for me. Now I get irritated when say a nurse tells me " will she get on the scale" I always redirect them with " she's right here , she's not deaf ask her " and she alwAys complies. All the years of holding her down for blood work , dental work etc. totally ended once everyone just communticated with her directly. She obviously didn't like not being given the dignity of people speaking directly TO her. What a differance something so simple made to my child's life. We also have to always remind adults, teachers etc. To watch what they say around her. Because she was listening to less then nice teachers in the past and understanding things they were saying and it greatly negatively effected her education for a couple years. 

[PennySycamore]

@Stormy and @Beermeet,    (All other FJites who are struggling, as well.)

I have one grandchild who is probably on the spectrum, one grandchild who is Deaf, and one grandchild who has albinism.  The grandchild with albinism does have a disability that is a apparent, but the true scope of her disability is not apparent.  Albinism is more than just needing to use sunscreen all over any exposed skin every day of your life; it also affects her vision.  She requires special accommodation and equipment in school.  My grandson on the autism spectrum is verbal, but screams when he can't find his words.  When he was here a few weeks ago, we had one day when he was biting his sisters on the arm.  His mom had forgotten his biting thingy at home.  My granddaughter who is Deaf, does have cochlear implants, but as her dad says, she will always be deaf. The implants don't make her not deaf. The explanation of the difference between the social and medical models of disability is very helpful in knowing how to help these children.

That reminds me:  I need to go register for the ASL class at Spartanburg Tech next week.

 

[Beermeet]

@PennySycamore. TY and love to you and your sweet grandbabies.  Life is something else huh?

I want to learn ASL.  Actually,  I feel strongly about it being taught globally.  I'm not sure why there isn't just one SL. I don't know enough about it.   We could all communicate in person or video that way!  No matter where one is at.  Sometimes,  I get a tad conspiratorial about it. 

[fluffernutter]

3 hours ago, VelociRapture said:

The term "date night" doesn't necessarily mean they didn't have Samuel with them. If they ate in the car then there's a chance that one or both boys were in their car seats, possibly asleep since the car is a pretty great nap spot for a lot of kids. The term "date" could just mean that it's the first time they've gone out for food since Samuel was born. I've used it like that a few times since welcoming Velocibaby - including tonight when we went to dinner with her at an actual restaurant for the first time (she was a total rockstar. She smiled really big for the servers and kept tracking plates of food moving around the room.)

 

I left the house at three weeks for the first time to go get an ice cream cone with my husband with baby asleep in the backseat when my oldest was born in 1994. I felt so weird and foreign and out of place. Getting back to real-life was hard. And that was an uncomplicated birth. I'm just glad to see her out and about!

[BlackberryGirl]

ALS  sucks. it just fucking sucks. I had  an aunt die from it about 25 years ago and now I have a nephew who has had it for about 5 years.  he is a strong, smart, funny  guy who taught for years, then became a school guidance counselor.. he has lost his mobility, his speech, he's been on a ventilator for about 3 years. I HATE this...

 

[RosyDaisy]

Let's not forget the really special hateful people who believe a disability deserve it because of some kind of moral failing. Many aren't afraid to say so publicly and in the presence of people with disabilities. But when these evil people suddenly find themselves disabled, it's not seen that way at all. [emoji48]

[Voluminous Skirts]

Assuming the picture is recent, I'm very glad to see Jill is well enough to get out of bed, whether she's still at the hospital or at home now. We didn't have evidence of that until now! So that rules out some scary possibilities.

Still, it doesn't mean she's recovering easily. Their earlier uncharacteristic silence still makes me think malpractice lawsuit, or at the very least, PPD.

[LovelyLuna]

I have an invisible illness and mental health disabilities.  “you don’t look disabled/ you look normal” is the bane of my existence.  My therapist has me responding ‘its complicated’.  I’m still struggling with oversharing but I’m getting better.  I’m on a list for a service dog, I know the comments will get worse or change, but at least I’ll have the dog.  People make me so angry and then I can’t even deal with them properly.  It can be a cruel world.  Giant hugs (if you accept them) too all my fellow sufferers.  

I can’t fault them for the in the car Pizza date.  They might of had the kids in the back seat and they have 2 under 3.  I wouldn’t be posting it on social media though if I were them.  

[Shadoewolf]

Youngest Wolfie is on the very high functioning end of the spectrum and sensory processing. Oldest Wolfie has always been closest to him besides me and has found great ways to avoid meltdowns. There's a program at her high school that pairs mainstream students as helpers with self-contained rooms (some are ASD, some have CP, etc) and she volunteered during her study hall all last year, helping teach the kids cooking and life skills. She didn't even think twice when one of the kids attacked her after she changed her hair color, she kept with it. She became such an integral part of the class that she'll have an independent study for dual enrollment credit in there this year as a senior. She has this way of understanding the kids, of reaching beyond the barriers and they connect with her. She cried when they gave her a present at the end of last year, a picture frame with all their names signed. 

I tell you guys this so you know there are caring, kind, people out there who see beyond the disability to the heart and soul beneath.  And I hope everyone can find that kind of person.

[Chickenbutt]

Forgive my ignorance. What is "stimed"?

[Grimalkin]

      My sister has Down syndrome. She has a rare form and is in the severe and profound range, non verbal, mental age of about a year. She can walk, feed herself, though doesn't cut her food well,  toilet herself, and shower with some supervision. I really think most people mean well and many just never had the opportunity to really interact with people like her. I have often explained to hospital staff that she responds better when you speak to her and explain things. I don't know how much she understands but she likes being talked to. They have always been receptive to my suggestions. Most people want to help but just don't know how. It doesn't come naturally to everyone. I guess I am trying to say I Prefer to give people the benifit of a doubt, and kindly, yet directly explain the situation. It pretty much has been received well, sometimes people get embarrassed and I reassure them. 

               I once had an older lady tell me about a distant cousin who was a 'mongoloid' who died young from heart complications but she talked about her cousin with such kindness and sincerity and seems to of really cared about him, I couldn't get a word in to explain that it's not a nice word, and at the end decided not to. When I was a kid retarded was the accepted word and not always used in  derogatory sense.

      Anyway, hugs to all you caretakers out there. It's hard work. There are assholes out there but I think more good people than not. Let the assholes be assholes for they embarrass themselves. Thier words reflect on them and not on you. The best response is to smirk and shrug your shoulders.

[livinginthelight]

36 minutes ago, Chickenbutt said:

Forgive my ignorance. What is "stimed"?

Short for self-stimulation - also called "stimming" in the present tense. People on the spectrum often use these behaviors to soothe themselves. Common examples would be rocking and hand-flapping, but the behaviors can vary widely.

ETA: this might be a great place to put in a plug for a very interesting and enlightening book on autism from an insider's perspective: Carly's  Voice. Carly is a nonverbal young woman with autism whose world opened up when she learned to type her thoughts. I highly recommend this book. http://carlysvoice.com/home/aboutcarly/

Another great book is Thinking in Pictures by Temple Grandin. Temple Grandin has a PhD in animal husbandry and has revolutionized the cow slaughtering industry by being able to think like a cow and make slaughterhouses more humane. She is able to put words to her world in this book.

 

[Chickenbutt]

Thank you. Learned a new word today.

[bella8050]

7 hours ago, backyard sylph said:

Well. I just read through all your stories, and now I hate people. Kind of.

I want to think that these stupid awful people are just the ones that stick out, and everyone else is sensible and kind. But I suppose it's much more complex than that.

I like to think so also, unfortunately for myself at least, it is the asshole encounters that tend to stick to memory. However just reading this a positive memory came to mind. One time I fell stepping off of a sidewalk and my knees were completely locked up and I couldn't move. I started yelling at the car in front of me not to hit me, they were stopped at a red light but about to turn green. A group of guys heard me and came running over. One stood in front of me to block/direct traffic , and the other two picked me up and carried me till they could find a decent place for me to sit. They also offered to call an ambulance or for someone to come pick me up. 

[JillyO]

4 hours ago, HarryPotterFan said:

Isn't Gothard anti-pork? I vaguely remember JB claiming they don't eat pork once. I see Jillymuffin is enjoying some pepperoni pizza. 

The Duggars definitely claimed not to eat pork because Leviticus. They made a big deal out of buying turkey bacon.

Of course we have also seen them eat peperoni pizza about five gazillion times on the show. Either they are dumb as fuck and don't realize (conventional) peperoni is pork, or they're huge-ass hypocrites. Oh, wait.