S08.E31: On the Mend

[LBS]

I’ve been on vacation for with all my family in the North Woods, WI with limited WIFI and no TV.  I just watched the episode after reading all the posts on the 6 hr car ride home and more or less agree with everyone.  

Only thing that really stood out to me that wasn’t mentioned was Ali’s baby doll.  When she was playing and holding her baby as Dr.T and Leah were talking about her quality of life pretty much brought me to tears.  It was such a juxtaposition of the severity of her condition with how young she actually is.  She still plays with dolls but has to deal with adult hurts.  Ugh.  Some of my nieces/cousins are her age and being with them this week brought that home to me watching this episode.

[SnarkEnthusiast]

4 hours ago, Lm2162 said:

I don’t think it’s nitpicking to say that both parents should obey medical orders after seeing a specialist, get a properly accessible home, not act like using a wheelchair is a shameful sign of failure when it’s her primary means of future mobility and freedom from atrophy, and not push her to play sports regularly (this isn’t one trick or treating episode or a single birthday party- both Corey and Leah have acted like they can somehow “prove the doctors wrong” if they just push enough T-ball and cheerleading, when those are far from the only available fun after-school activities). I also just don’t understand seeing the specialist at all if they don’t plan on listening to him. It seems contradictory to spend all that time and money to visit him if they truly think that following his advice would make for a lower quality of life for Ali anyway and aren’t going to do what he says. Leah straight up lied to Dr. Tsao's face. That's really doing a disservice to her daughter.

Maybe it’s because disability is an everyday part of my life so I have a different perspective, but I’ll never think those things are ok or excusable. I do see what you’re saying, though- I don’t judge her for her addiction (I think that must be common in high stress scenarios like this) or them for their suffering, but I do judge them both for medical neglect. I feel for them deeply, but at the end of the day it can’t all be about their pain. Ali is the one who has the disorder, not them, and it has to be about her. 

Yes to all of this, but especially the bolded. Society tends to frame childhood disability in terms of the sacrifice and martyrdom of the parents and how the disabled child's condition is a big ol' wet blanket from letting able family members enjoy their lives or live out their original trajectory for their futures. As an adult, I still get "But don't you feel guilty? You need to give them a break and let them live their lives! What happens when they dieee?" because disability is just a huge fucking inconvenience that derails everyone's lives for decades. But Ali is 8. She depends on Leah to advocate for her, but all Leah can fixate on is desperately ignoring her inevitable demise, which is hugely damaging to both her day-to-day quality of life and overall lifespan. Leah needs to stop using Ali's MD for sympathy and wallowing in how the diagnosis is affecting her and start letting Ali live her life as happy and healthy as possible, and not by making the idealized memories she wants for herself via sports teams and disability-unfriendly vacations.

[ghoulina]

23 hours ago, hottesthw said:

Especially when it comes to things regarding a child that isn't theirs. She made baby with an asshole (I mean seriously, Adam hasn't changed a bit since she dated him, but back then he was perfect in her eyes *smh*), so she should be the one dealing with that situation, now that she is a grown woman with more kids. She has a great family to support her (as they should) but she crosses a line from support to dependency quite frequently.

And what really makes me smh is how when Adam's family supports him repeatedly (to his detriment sometimes), they are crucified . But Randy supporting his pregnant 16 year old  and now 20-something yr old kid with multiple kids, is revered. I mean they're  both parents of kids who screwed up (and still are), I can't imagine how it feels to be expected to turn your back on your kid, no matter how much they suck. Again, no excuses for Adam's bad behavior, but I find Cheslea far from the angel persona she puts out there.

Two things:

Adumb has changed a little bit since she dated him. More than a little bit. Back then he was a snotty, little punk who cheated on Chelsea and verbally abused her. He's now a full blown addict who has been physically abusive and has a lengthy arrest record. The main thing that's stayed the same is his inability and lack of desire to support his daughter.

Also, there is being there for your kid in tough situations and there's completely denying their situation. The fact that Adumb's mom insisted he didn't do drugs tells me all I need to know about them. 

[ReadMeLattice]

42 minutes ago, SnarkEnthusiast said:

Yes to all of this, but especially the bolded. Society tends to frame childhood disability in terms of the sacrifice and martyrdom of the parents and how the disabled child's condition is a big ol' wet blanket from letting able family members enjoy their lives or live out their original trajectory for their futures. As an adult, I still get "But don't you feel guilty? You need to give them a break and let them live their lives! What happens when they dieee?" because disability is just a huge fucking inconvenience that derails everyone's lives for decades. But Ali is 8. She depends on Leah to advocate for her, but all Leah can fixate on is desperately ignoring her inevitable demise, which is hugely damaging to both her day-to-day quality of life and overall lifespan. Leah needs to stop using Ali's MD for sympathy and wallowing in how the diagnosis is affecting her and start letting Ali live her life as happy and healthy as possible, and not by making the idealized memories she wants for herself via sports teams and disability-unfriendly vacations.

Yes, exactly. I think people can often relate to the nondisabled parents more than to the actual disabled person, but the person actually having to deal with this the most is Ali, not her parents. They are suffering, yes, but she’s the person who will actually have to navigate a life with MD, whether it’s short or long. They have to give her the tools to do that, not just focus on their own pain, however real it is. 

[WhosThatGirl]

As a disabled person, I can see both and relate to both. But mostly I do relate to Ali. And that’s the thing. I said it before, while Corey and Leah more than likely enforcing te wherlchair, I doubt Ali is asking or wanting to use it. And why? Because it makes her different. Hi. I’m an adult and I have to use a walker and as I’ve said.. I’m stubborn as hell and I hate it and it kills me.

Also.. I think about the fact that everyone else in my family is able bodied, my parents, my sister, my brother and that’s a struggle and annoyance and so painful. I can’t imagine what it’s like to be a twin and to see someone who is supposed to be like you be So different.

And my family has been pretty great with this, but still.. there’s a small part that my family can’t understand and that’s why I do break for Ali.

I also hurt for her parents because it’s heartvreaking to hear that there are things you might not be able to help for your child. 

[usernameG]

On 8/4/2018 at 11:56 AM, hottesthw said:

Especially when it comes to things regarding a child that isn't theirs. She made baby with an asshole (I mean seriously, Adam hasn't changed a bit since she dated him, but back then he was perfect in her eyes *smh*), so she should be the one dealing with that situation, now that she is a grown woman with more kids. She has a great family to support her (as they should) but she crosses a line from support to dependency quite frequently.

And what really makes me smh is how when Adam's family supports him repeatedly (to his detriment sometimes), they are crucified . But Randy supporting his pregnant 16 year old  and now 20-something yr old kid with multiple kids, is revered. I mean they're  both parents of kids who screwed up (and still are), I can't imagine how it feels to be expected to turn your back on your kid, no matter how much they suck. Again, no excuses for Adam's bad behavior, but I find Cheslea far from the angel persona she puts out there.

 

Comparing Adam's parents to Chelsea's isn't really a fair comparison.  Adam is an addict who has been in and out of jail. The Linds seem to be blind to that and continue to enable him. I don't think anyone is asking them to turn their back on their kid but maybe start facing reality and stop enabling him. The Linds seem to be in denial their child has a problem and blatantly ignores the court order that was put in place to protect Aubree.  My brother is an addict and has had his own legal issues. As much as my parents loved my brother, their priority was to help make sure his kids were safe. I find it incredibly sad that they Linds don't have that concern for Aubree. 

Randy on the other hand supported and continues to support his child who isn't an addict and in/out of jail. Personally I think Chelsea is doing the best she can and she's come a long way. Of all the Teen Moms, she would not be the one I would label a screw up.

Edited August 5, 2018 by usernameG
Grammar

[SheTalksShit]

10 hours ago, Lm2162 said:

I certainly *knew,* I’m saying that scene made it more immediate and visceral. 

I don’t think it’s nitpicking to say that both parents should obey medical orders after seeing a specialist, get a properly accessible home, not act like using a wheelchair is a shameful sign of failure when it’s her primary means of future mobility and freedom from atrophy, and not push her to play sports regularly (this isn’t one trick or treating episode or a single birthday party- both Corey and Leah have acted like they can somehow “prove the doctors wrong” if they just push enough T-ball and cheerleading, when those are far from the only available fun after-school activities). I also just don’t understand seeing the specialist at all if they don’t plan on listening to him. It seems contradictory to spend all that time and money to visit him if they truly think that following his advice would make for a lower quality of life for Ali anyway and aren’t going to do what he says. Leah straight up lied to Dr. Tsao's face. That's really doing a disservice to her daughter.

Maybe it’s because disability is an everyday part of my life so I have a different perspective, but I’ll never think those things are ok or excusable. I do see what you’re saying, though- I don’t judge her for her addiction (I think that must be common in high stress scenarios like this) or them for their suffering, but I do judge them both for medical neglect. I feel for them deeply, but at the end of the day it can’t all be about their pain. Ali is the one who has the disorder, not them, and it has to be about her. 

 

I have literally never seen Leah show any signs of medical neglect or act as if Ali using the wheelchair is a sign of failure. Quite the contrary, what I see is her wanting Ali to use the wheelchair more, wanting Ali to be carried more, etc. but Ali protesting bc she wants more independence, wants to be normal, wants to walk. 

Do you not remember that it was Leah who pushed so hard for the wheelchair to get approved in the first place? 

Leah was quick to take her to the Dr. when she saw Ali was falling a lot. Leah is the one who pushed for Ali to get an aid. Leah is the one who took Ali to all these different specialists to find out what was wrong with Ali bc she saw that something was very wrong and wasn’t gonna stop until Ali received a diagnosis, despite Corey’s denial and insistence that Ali was perfectly fine. 

I think it’s Corey who needs to be a bit more on top of things, tho he and Miranda arent on the show much anymore so idk how they are now. I do get the impression he understands her condition and limitations much more so than he used to. 

But again, the issue right now is not her strength, (it has not rapidly deteriorated yet) it’s her LUNGS, which was previously unknown about. 

The dr. assessed her strength and when he realized it was good, he realized something else was the problem and that’s why he decided to do the test on her lungs. 

And IDK what your disability is, but is it anything like what Ali has? 

Edited August 5, 2018 by SheTalksShit

[lezlers]

21 hours ago, SnarkEnthusiast said:

While I agree that the diagnosis is devastating and stressful, I don't think people are faulting Leah for allowing Ali to enjoy special occasions. I think it's more convincing your child to not use her wheelchair, not requiring her to use her wheelchair 24/7 when walking actively accelerates her decline, and pushing her to participate in physically demanding sports that ABSOLUTELY speed her deterioration so she can be "like her (normal) sister" and so you can block out the fact that her disability exists. No matter how much they love Ali, and they do, Leah and Corey are always going to be ashamed of Ali's disability because I don't think they like the social embarrassment of having a "special" child that will inevitably be rejected by her peers, so they ignore Ali's diagnosis at the expense of her health. Also it's the parental guilt knee-jerk of "If I don't acknowledge it, it doesn't exist" extended to the dangerous logic of "the less time we spend reacting to it and letting it control her life, the healthier she'll be" which is fucking IDIOTIC and teetering on neglect given that her vital organs are already going downhill. 

And I know addiction is a disease, but driving while high with your kids in the car and forcing your young child to care for her disabled and toddler sisters while literally foraging for any food in the house is.....beyond shitty, so I'm not exactly overflowing with sympathy on that front, nor do I think Ali's diagnosis justifies Leah being in a hazy stupor and willfully endangering/neglecting all three kids, not to mention all the pressure on poor Gracie to keep the household afloat.

I'm not saying I had no problem with her addiction, I don't think anyone should be an addict!  I'm just saying I could see how it happened and I sympathize with her trying to escape.  She was a 16 year old girl who suddenly found herself with twins, one of which has a degenerative and fatal disease.  That's a lot to take on for a mature, well adjusted adult, much less someone who was still very much a child herself.   I just wish she'd admitted she had a problem and sought help sooner, before put her children's lives at jeopardy repeatedly.  

And I don't see them "pushing" her to not use her wheelchair and engage in sports.   I agree having her play softball is ludicrous.   I'm guessing it's more Ali crying and insisting on wanting to do those things and her and Corey not being strong enough (and in a fair bit of denial about her condition) to say no.   Should they say no?  Of course!  I'm just saying I can see why it's hard for them to do so and I can see why they slip up.   Sadly, when it comes to Ali it's more about quality of life than quantity, you know?   It's tragic.  

2 hours ago, SheTalksShit said:

I have literally never seen Leah show any signs of medical neglect or act as if Ali using the wheelchair is a sign of failure. Quite the contrary, what I see is her wanting Ali to use the wheelchair more, wanting Ali to be carried more, etc. but Ali protesting bc she wants more independence, wants to be normal, wants to walk. 

Do you not remember that it was Leah who pushed so hard for the wheelchair to get approved in the first place? 

Leah was quick to take her to the Dr. when she saw Ali was falling a lot. Leah is the one who pushed for Ali to get an aid. Leah is the one who took Ali to all these different specialists to find out what was wrong with Ali bc she saw that something was very wrong and wasn’t gonna stop until Ali received a diagnosis, despite Corey’s denial and insistence that Ali was perfectly fine. 

I think it’s Corey who needs to be a bit more on top of things, tho he and Miranda arent on the show much anymore so idk how they are now. I do get the impression he understands her condition and limitations much more so than he used to. 

But again, the issue right now is not her strength, (it has not rapidly deteriorated yet) it’s her LUNGS, which was previously unknown about. 

The dr. assessed her strength and when he realized it was good, he realized something else was the problem and that’s why he decided to do the test on her lungs. 

And IDK what your disability is, but is it anything like what Ali has? 

Yes, this!!   Thank you for articulating what I was trying to say in a much better way.  :) 

[TheRealT]

2 hours ago, SheTalksShit said:

I have literally never seen Leah show any signs of medical neglect or act as if Ali using the wheelchair is a sign of failure. Quite the contrary, what I see is her wanting Ali to use the wheelchair more, wanting Ali to be carried more, etc. but Ali protesting bc she wants more independence, wants to be normal, wants to walk. 

Do you not remember that it was Leah who pushed so hard for the wheelchair to get approved in the first place? 

Leah was quick to take her to the Dr. when she saw Ali was falling a lot. Leah is the one who pushed for Ali to get an aid. Leah is the one who took Ali to all these different specialists to find out what was wrong with Ali bc she saw that something was very wrong and wasn’t gonna stop until Ali received a diagnosis, despite Corey’s denial and insistence that Ali was perfectly fine. 

I think it’s Corey who needs to be a bit more on top of things, tho he and Miranda arent on the show much anymore so idk how they are now. I do get the impression he understands her condition and limitations much more so than he used to. 

But again, the issue right now is not her strength, (it has not rapidly deteriorated yet) it’s her LUNGS, which was previously unknown about. 

The dr. assessed her strength and when he realized it was good, he realized something else was the problem and that’s why he decided to do the test on her lungs. 

And IDK what your disability is, but is it anything like what Ali has? 

Yeah, I feel like Leah gets judged very harshly. She found herself the parent of two young children, one with a significant disability, when she was just a teen. And not a super smart teen who would have been on her way to an elite college if she hadn't gotten pregnant, more like a teen who was on track to just barely graduate from high school and maybe enroll in beauty school or community college; more likely get a job at the mall.

I think Corey is a good guy and a good dad, but he was over 18 when he barebacked with under-18 Leah in the back of his truck on their first date. Not exactly exemplary behavior. After the twins were born, he stepped up to a large degree, but he was also less than ideally sensitive and responsive to his teenage bride's struggles. I get that he was dealing with his own stuff, including being a very young guy with some very heavy responsibilities, but still. I feel like Leah was somewhat vilified for being immature, needy, and desirous of attention, affection, and sex. She was wrong to cheat with Robby, but Corey was also wrong to minimize and ignore her needs (even if they were annoying and immature; he chose to impregnate and marry a teenager).

Leah has absolutely taken the lead on managing Ali's medical care, which is no small feat, even for much smarter, more educated, and more mature parents. I get that Corey has a full-time job, but I feel like he has really gotten a major pass on dealing with a lot of the difficulties of that task. He mostly misses appointments, relying on/requiring Leah to process and remember what's going on for both of them. By now, he should have at least realized that Leah is struggling with this and made more of an effort to go to the appointments or at least try to get his dad, Miranda, or whoever else to do so, for Ali's sake as well as Leah's. It seems that they all treat the appointments as Leah's responsibility and act like Corey is making a big effort to Skype in once in a while if it fits into his schedule.

[ReadMeLattice]

3 hours ago, SheTalksShit said:

I have literally never seen Leah show any signs of medical neglect or act as if Ali using the wheelchair is a sign of failure. Quite the contrary, what I see is her wanting Ali to use the wheelchair more, wanting Ali to be carried more, etc. but Ali protesting bc she wants more independence, wants to be normal, wants to walk. 

Do you not remember that it was Leah who pushed so hard for the wheelchair to get approved in the first place? 

Leah was quick to take her to the Dr. when she saw Ali was falling a lot. Leah is the one who pushed for Ali to get an aid. Leah is the one who took Ali to all these different specialists to find out what was wrong with Ali bc she saw that something was very wrong and wasn’t gonna stop until Ali received a diagnosis, despite Corey’s denial and insistence that Ali was perfectly fine. 

I think it’s Corey who needs to be a bit more on top of things, tho he and Miranda arent on the show much anymore so idk how they are now. I do get the impression he understands her condition and limitations much more so than he used to. 

But again, the issue right now is not her strength, (it has not rapidly deteriorated yet) it’s her LUNGS, which was previously unknown about. 

The dr. assessed her strength and when he realized it was good, he realized something else was the problem and that’s why he decided to do the test on her lungs. 

And IDK what your disability is, but is it anything like what Ali has? 

 

I do agree with you that Corey is worse with regard to the disability, actually. That used to not get a very good reaction around here, lol-it was basically taboo to say because Corey was very heavily beloved, perhaps because Leah was doing a bit of hot-mess dangerous driving and cheating at the time. I've never personally seen Ali protesting, but we are all free to have our own opinions.

As for the disabilities in my immediate family (husband, niece & brother), yes. They are similar. I'm not sure why that is specifically relevant and that frankly feels a little personal to me, so I will just say- yes. I have direct experience with this, though certainly not this exact type of MD.

I think the posts from Papa Joe that they were 'proving doctors wrong' with images of Ali playing sports were very clearly pushing the idea that they could somehow conquer the disorder through prayer alone, and pushing the sports on her. I do not agree that there is more of a quality of life to not using the wheelchair rather than using it, given what Dr. Tsao has said about the deterioration of her muscles and how it works (use it and lose it, essentially). On the contrary, I know many wheelchair using adults who were relieved when the adults in their lives finally let them use mobility aids without judgment. Without the wheelchair, she falls regularly; with it, she could have more freedom. I've seen in real time the long-term effects of Corey's 'she WILL walk down the aisle, I KNOW IT' attitude, and it's not pretty. It's understandable, but it hurts people.

Edited August 6, 2018 by Lm2162

[ReadMeLattice]

35 minutes ago, TheRealT said:

She was wrong to cheat with Robby, but Corey was also wrong to minimize and ignore her needs (even if they were annoying and immature; he chose to impregnate and marry a teenager).

 

Not to mention he cheated on Miranda himself.

[HeySandyStrange]

37 minutes ago, TheRealT said:

 

Leah has absolutely taken the lead on managing Ali's medical care, which is no small feat, even for much smarter, more educated, and more mature parents. I get that Corey has a full-time job, but I feel like he has really gotten a major pass on dealing with a lot of the difficulties of that task. He mostly misses appointments, relying on/requiring Leah to process and remember what's going on for both of them. By now, he should have at least realized that Leah is struggling with this and made more of an effort to go to the appointments or at least try to get his dad, Miranda, or whoever else to do so, for Ali's sake as well as Leah's. It seems that they all treat the appointments as Leah's responsibility and act like Corey is making a big effort to Skype in once in a while if it fits into his schedule.

Do we know that members of the Simms family never go to appointments, though? We just see the appointments that are filmed for the show, and I wouldn't be surprised if most of Corey's family would rather not be filmed, especially Miranda, considering how badly she was vilified by Leah and her fans just a few years ago. We don't know how much they do medically behind the scenes for Ali and just don't make a big deal about it. Or what they may offer to do that Leah rejects. Leah is better then she used to be, but she also has a bit of a martyr complex and still seems to like to present herself as this #doingitherself #singlesupermom. 

[mscav]

1 hour ago, HeySandyStrange said:

Do we know that members of the Simms family never go to appointments, though? We just see the appointments that are filmed for the show, and I wouldn't be surprised if most of Corey's family would rather not be filmed, especially Miranda, considering how badly she was vilified by Leah and her fans just a few years ago. We don't know how much they do medically behind the scenes for Ali and just don't make a big deal about it. Or what they may offer to do that Leah rejects. Leah is better then she used to be, but she also has a bit of a martyr complex and still seems to like to present herself as this #doingitherself #singlesupermom.

I think it's a safe bet to say they do not go.  Leah used to complain a lot about Corey not going to the doctors appointments and most reactions were she needed to grow up and get over it because he had to work.  I never agreed with that.  These appointments are scheduled very far in advance and are very important.  I'm sure Corey could schedule PTO to be there but he chooses not to. I know after he married Miranda he seemed to start going to the appointments more but I think that was because Leah was seriously abusing her pillses at that time.  Now that she's better I think everyone in their circle,  Leah included to a degree,  think this is mom's job and dad doesn't really need to be there. 

[starfire]

If he really wanted to, Corey could likely use  FMLA to get time off to go to Ali's specialist appointments.

[configdotsys]

15 hours ago, SheTalksShit said:

I have literally never seen Leah show any signs of medical neglect or act as if Ali using the wheelchair is a sign of failure. Quite the contrary, what I see is her wanting Ali to use the wheelchair more, wanting Ali to be carried more, etc. but Ali protesting bc she wants more independence, wants to be normal, wants to walk. 

My problem with Leah is that she gives in to Ali's wishes even if detrimental to her health. It was up to her to be the parent and put her foot down with regard to forbidding Ali from playing softball and running around. As soon as the doctor said Ali should be in her wheelchair nearly all the time, Leah should have incorporated the wheelchair into their daily lives with games and activities that she could participate in while in the chair. Then the chair would not a burden but just a part of the family's life. But she gave in because she felt bad and didn't want Ali to feel different. You can't do that when the child's health is at risk.

Corey's "ignore it and it will go away" and "I just feel like they're wrong, we'll pray" is of no use either. Ali is different. Every time Leah allowed Ali to bypass the wheelchair reinforced to Ali and everyone else that she doesn't really need it.  See? She can run! She can play softball! We were right! I really feel for Leah, but you just can't wish this kind of thing away. 

[lezlers]

On ‎8‎/‎2‎/‎2018 at 10:08 AM, StatisticalOutlier said:

Maybe based on what we've seen, but I'm not going to second-guess his approach based on the few snippets MTV chooses to edit together for us to see.  I don't think that's fair to him.

 

Can anybody clarify this for me?  I thought Cole called Donna from inside the house as she was standing at the front door, which I thought was beyond ridiculous.  Did he actually open the door and talk to her?  That would make me feel a lot better.

 

No court has ruled multiple times that Jenelle isn't sane enough to raise her son.  In fact, I don't think a court has ruled on the issue at all, period, never mind ruling on Jenelle's sanity.

 

Not in every way, including the one that made it possible for her to exist in the first place.

 

I don't know anything about family law, but I'm having trouble imagining what legal claim she would have for making them reimburse her. 

 

Conversely, I've been aghast in the past at how many lawyers these people have.  I'm well over twice their age and never in my life have the words, "I'm going to call my lawyer" come out of my mouth.  I'm sure it helps that I don't have a bunch of baby daddies and don't brush up against the criminal justice system with any regularity.  But still.

Chelsea said that by the time Cole got out of the bathroom, Donna had left.  They called her later.   

Also, it's routine for the losing party in a family law motion to be responsible for the other side's legal costs.  

[DNR]

Leah has a mini computer in her hand .... record the appointment with your phone and listen back later with family / support system. ( I don’t like to go to important doctor appointments alone either ! I feel like i walk out and it’s like i have amnesia ... can’t recall A THING  the doc said ?.  I have recorded appts so i understand fully what was said  )  i wish Leah & Corey would follow the specialists orders , they can’t wish away what’s happening to Ali.

[StatisticalOutlier]

14 hours ago, HeySandyStrange said:

Do we know that members of the Simms family never go to appointments, though? We just see the appointments that are filmed for the show, and I wouldn't be surprised if most of Corey's family would rather not be filmed, especially Miranda, considering how badly she was vilified by Leah and her fans just a few years ago. We don't know how much they do medically behind the scenes for Ali and just don't make a big deal about it. Or what they may offer to do that Leah rejects. Leah is better then she used to be, but she also has a bit of a martyr complex and still seems to like to present herself as this #doingitherself #singlesupermom. 

Well, somebody should have gone to this appointment with Leah, if it really was as presented by MTV, to address Ali's recent decline.  That's more than just a checkup.

 

On 8/2/2018 at 8:41 PM, LotusFlower said:

Well, we saw Dr. Tsao walk in, ask about wheelchair use, get his answer, and then move on to other questions and topics.  I very much doubt that he had another meeting with Leah and Ali and asked the same questions. 

It's possible that he didn't challenge her answer then, but circled around to it again later in that discussion or subsequent discussions (she was there for a couple of days). 

I know how reality shows edit conversations, so I never trust anything I see 100% unless there's something to verify the sequence and that nothing was left out.  (I love it when there are clocks in the background, or meals being eaten, or hairs that are temporarily wonky).  I just thought that second-guessing how an expert in MD asks about wheelchair use, based on edited snippets of a conversation, was a little much.

 

1 hour ago, lezlers said:

Also, it's routine for the losing party in a family law motion to be responsible for the other side's legal costs.  

But the statement I was responding to was this:  "The Linds should be thankful that Chelsea isn't taking them to court for the money she's forking out in legal fees because they cannot read a document, understand the words coming out of a judge's mouth or understand the legal ruling in whatever manner it is explained." 

I suppose Chelsea could file a motion in court alleging the Linds' violation of the order, and if she prevailed, maybe recover attorneys fees, but I can't think of a motion that would seek solely to recover legal costs, without any sort of finding of wrongdoing underlying it.

[heatherchandler]

On 8/4/2018 at 12:39 PM, Mkay said:

I just have to say that I love Anon Opinion's avatar picture!!  What was this from???

 

On 8/5/2018 at 8:09 AM, LBS said:

 

Only thing that really stood out to me that wasn’t mentioned was Ali’s baby doll.  When she was playing and holding her baby as Dr.T and Leah were talking about her quality of life pretty much brought me to tears.  It was such a juxtaposition of the severity of her condition with how young she actually is.  She still plays with dolls but has to deal with adult hurts.  Ugh.  Some of my nieces/cousins are her age and being with them this week brought that home to me watching this episode.

I was also tearing up from that scene, but it was more because I see her holding a baby doll and realize that she probably won't ever be able to have a baby.  

 

 

13 hours ago, mscav said:

I think it's a safe bet to say they do not go.  Leah used to complain a lot about Corey not going to the doctors appointments and most reactions were she needed to grow up and get over it because he had to work.  I never agreed with that.  These appointments are scheduled very far in advance and are very important.  I'm sure Corey could schedule PTO to be there but he chooses not to. I know after he married Miranda he seemed to start going to the appointments more but I think that was because Leah was seriously abusing her pillses at that time.  Now that she's better I think everyone in their circle,  Leah included to a degree,  think this is mom's job and dad doesn't really need to be there. 

We have seen Jeff, Corey's dad at some appointments.  

[Mkay]

23 minutes ago, heatherchandler said:

I just have to say that I love Anon Opinion's avatar picture!!  What was this from???

 

 

When Jenelle claimed she was getting jaw alignment a few months ago. She posted a pic on Snapchat or somewhere like that. 

Edited August 6, 2018 by Mkay

[heatherchandler]

11 minutes ago, Mkay said:

When Jenelle claimed she was getting jaw alignment a few months ago. She posted a pic on Snapchat or somewhere like that. 

Ha!  Thanks Mkay!

[SheTalksShit]

8 hours ago, configdotsys said:

My problem with Leah is that she gives in to Ali's wishes even if detrimental to her health. It was up to her to be the parent and put her foot down with regard to forbidding Ali from playing softball and running around. As soon as the doctor said Ali should be in her wheelchair nearly all the time, Leah should have incorporated the wheelchair into their daily lives with games and activities that she could participate in while in the chair. Then the chair would not a burden but just a part of the family's life. But she gave in because she felt bad and didn't want Ali to feel different. You can't do that when the child's health is at risk.

Corey's "ignore it and it will go away" and "I just feel like they're wrong, we'll pray" is of no use either. Ali is different. Every time Leah allowed Ali to bypass the wheelchair reinforced to Ali and everyone else that she doesn't really need it.  See? She can run! She can play softball! We were right! I really feel for Leah, but you just can't wish this kind of thing away. 

The Dr. is talking strictly from a medical perspective, whereas Leah, as a mother, has to think about both the medical perspective and the quality of life perspective. Ali's health will be in decline no matter what. Her time on this earth is far more limited compared to other kids her age, so it is even more important that she enjoy herself at least some of the time. So unless you're ok with confining Ali to a wheelchair and having her be completely miserable all of the time, you have to take both into account and let her do some of the things she wants to do. 

Also, the issue is not her strength right now, not yet, anyway, (so clearly, whatever Leah's doing is not causing any strength issues yet), it's her lungs, which was previously not known about. 

[SheTalksShit]

22 hours ago, Lm2162 said:

I do agree with you that Corey is worse with regard to the disability, actually. That used to not get a very good reaction around here, lol-it was basically taboo to say because Corey was very heavily beloved, perhaps because Leah was doing a bit of hot-mess dangerous driving and cheating at the time. I've never personally seen Ali protesting, but we are all free to have our own opinions.

As for the disabilities in my immediate family (husband, niece & brother), yes. They are similar. I'm not sure why that is specifically relevant and that frankly feels a little personal to me, so I will just say- yes. I have direct experience with this, though certainly not this exact type of MD.

I think the posts from Papa Joe that they were 'proving doctors wrong' with images of Ali playing sports were very clearly pushing the idea that they could somehow conquer the disorder through prayer alone, and pushing the sports on her. I do not agree that there is more of a quality of life to not using the wheelchair rather than using it, given what Dr. Tsao has said about the deterioration of her muscles and how it works (use it and lose it, essentially). On the contrary, I know many wheelchair using adults who were relieved when the adults in their lives finally let them use mobility aids without judgment. Without the wheelchair, she falls regularly; with it, she could have more freedom. I've seen in real time the long-term effects of Corey's 'she WILL walk down the aisle, I KNOW IT' attitude, and it's not pretty. It's understandable, but it hurts people.

 

yeah I know it's not popular around here but it's blatantly true, I'm not one to be scared of speaking my mind just bc I know other ppl won't agree. 

I've seen Ali protest several times - the time at the pool sticks out to me, especially, when Ali protested that she wanted to swim and complained that Gracie and her younger sister were allowed to go into the pool, but she wasn't. She threw quite the tantrum, actually. And one time, on their way to the Dr's, Leah asked Ali if she could carry her and Ali said no, she wanted to walk. 

I've seen Ali refuse the helmet. 

And Leah constantly mentions Ali's desire to do things that she can't do. 

As for what the disability is, that's fine, I don't need to know, you mentioned it and I inquired as to whether it was anything like Ali's bc I was wondering if whatever disability you may have would require the type of compromise in quality of daily life that such restrictions you think ought to be imposed on Ali 24/7 would entail. You made the comparison of your disability to Ali's and so that's why I asked. 

Some kids may be relieved about adults "letting" them use a wheelchair, but Ali does not appear to be one of them, she clearly does not like it. 

And yes, Corey and his family have that typical working-class redneck "mind over matter, you can do anything you set your mind to!" attitude and so long as you grow up without a disability and everyone close to you is able-bodied, as well, it's very easy to think that way bc he sees things from his own able-bodied, healthy perspective of challenges he may have personally conquered in his life. he has never had to overcome any challenge in his life while being afflicted with the very real limitations that these disabilities impose on people, so it was hard for him to comprehend. I also think he comes from a culture that's distrustful of what they don't understand (the medical field being one of them). i really hate to say this, but there seems to be a real culture of ignorance in the appalachia area, a culture that ignores science and the opinions of experts in exchange for their own over-simplified opinions and ideas of how things are. i think having Ali kinda challenged that worldview of his, big-time. I do think he has a better understanding of her condition now, tho. Like he didn't protest when Leah said she was gonna get Ali an aid. 

Edited August 6, 2018 by SheTalksShit

[SheTalksShit]

On 8/5/2018 at 9:31 PM, HeySandyStrange said:

Do we know that members of the Simms family never go to appointments, though? We just see the appointments that are filmed for the show, and I wouldn't be surprised if most of Corey's family would rather not be filmed, especially Miranda, considering how badly she was vilified by Leah and her fans just a few years ago. We don't know how much they do medically behind the scenes for Ali and just don't make a big deal about it. Or what they may offer to do that Leah rejects. Leah is better then she used to be, but she also has a bit of a martyr complex and still seems to like to present herself as this #doingitherself #singlesupermom. 

I think, honestly, that it's mostly Leah who goes to the appointments because she has a better understanding of the medical field and Ali's condition. I think all of this stuff confuses Corey a bit. Leah's mom was a nurse and Leah also wanted to be a nurse, at one point, so Leah is better at this, anyway. I saw her correct Corey when he suggested some possibility and Leah told him no, that's not it, a blood test ruled that out. Corey is not good with the specifics and details of the condition, he prefers Leah handle that and just delegate to him on the practical stuff, like Ali is getting an aid, Ali is getting a wheelchair, etc. So long as it works for them, honestly, I don't see the problem. I don't think he disagrees with her approach anymore, I think he's come to grudgingly accept that Ali's disability and limitations are a reality that you can't just hope or will away. 

[Mkay]

3 minutes ago, SheTalksShit said:

I think, honestly, that it's mostly Leah who goes to the appointments because she has a better understanding of the medical field and Ali's condition. I think all of this stuff confuses Corey a bit. Leah's mom was a nurse and Leah also wanted to be a nurse, at one point, so Leah is better at this, anyway. I saw her correct Corey when he suggested some possibility and Leah told him no, that's not it, a blood test ruled that out. Corey is not good with the specifics and details of the condition, he prefers Leah handle that and just delegate to him on the practical stuff, like Ali is getting an aid, Ali is getting a wheelchair, etc. So long as it works for them, honestly, I don't see the problem. I don't think he disagrees with her approach anymore, I think he's come to grudgingly accept that Ali's disability and limitations are a reality that you can't just hope or will away. 

Leah’s mom isn’t/wasn’t a nurse.  I do remember at one time Cory listened in on the Dr visits by phone when he couldn’t go. That stopped a long time ago I guess. 

[SheTalksShit]

3 minutes ago, Mkay said:

Leah’s mom isn’t/wasn’t a nurse.  I do remember at one time Cory listened in on the Dr visits by phone when he couldn’t go. That stopped a long time ago I guess. 

she's not? well she works in the medical field somehow, i think. i remember that from leah's original 16&Pregnant episode

[zenme]

15 minutes ago, SheTalksShit said:

I think, honestly, that it's mostly Leah who goes to the appointments because she has a better understanding of the medical field and Ali's condition. I think all of this stuff confuses Corey a bit. Leah's mom was a nurse and Leah also wanted to be a nurse, at one point, so Leah is better at this, anyway. I saw her correct Corey when he suggested some possibility and Leah told him no, that's not it, a blood test ruled that out. Corey is not good with the specifics and details of the condition, he prefers Leah handle that and just delegate to him on the practical stuff, like Ali is getting an aid, Ali is getting a wheelchair, etc. So long as it works for them, honestly, I don't see the problem. I don't think he disagrees with her approach anymore, I think he's come to grudgingly accept that Ali's disability and limitations are a reality that you can't just hope or will away. 

Just because Leah took non-prescribed medications doesn't mean she was in the medical field.

[SheTalksShit]

6 minutes ago, zenme said:

Just because Leah took non-prescribed medications doesn't mean she was in the medical field.

i never said she was. i said she understands it better and wanted to work in that field before she got this TM2 gig. 

[Mkay]

1 hour ago, SheTalksShit said:

she's not? well she works in the medical field somehow, i think. i remember that from leah's original 16&Pregnant episode

Some of us checked all the nursing license sites and she is not listed.  She did wear scrubs but she worked in a dental office.  To be fair I’ve been a receptionist at an eye doctor and had to wear scrubs. Same at a pharmacy. I started out as a clerk (who wore scrubs) and eventually worked up to pharmacy tech, still in scrubs.  Delta Dawn Spears wasn’t shown as any type of licensed nurse. (We checked other last names, too)

[SheTalksShit]

36 minutes ago, Mkay said:

Some of us checked all the nursing license sites and she is not listed.  She did wear scrubs but she worked in a dental office.  To be fair I’ve been a receptionist at an eye doctor and had to wear scrubs. Same at a pharmacy. I started out as a clerk (who wore scrubs) and eventually worked up to pharmacy tech, still in scrubs.  Delta Dawn Spears wasn’t shown as any type of licensed nurse. (We checked other last names, too)

oh ok, well i never really cared enough to take it that far lol. i'm honestly not as invested in this show as some of you are, i just see it as entertainment.  i believe you, tho, so i guess i stand corrected lol. thanks for the info/gossip. 

Edited August 7, 2018 by SheTalksShit

[lezlers]

On ‎8‎/‎2‎/‎2018 at 11:31 AM, StatisticalOutlier said:

So that is what happened?  Wow.  Why didn't they just not answer the door? 

Calling someone who's three feet away from you knocking on your door instead of opening the door and speaking to them in person is such an immature, chickenshit move.  If you don't want to talk to them, don't.  But don't hide behind your damn cell phone.

I don't know if this has been answered but no, that's not at all what happened.  By the time Cole came out of the bathroom Donna was gone.  That's when they called.

[Court]

I understand why Chelsea did what she did. Being involved in tense drop offs is incredibly difficult. There was a period where I would have a panic attack before or after every single exchange. The child exchanges give me strange anxiety every time. So I did bring my boyfriend along for some or just sent the kids out without exiting the house.

If my ex in laws showed up after some of the things they said and did to me, I wouldn't answer either.

[Eater of Worlds]

On 7/31/2018 at 12:58 PM, IgnoranceisBLISS said:

 

On 7/31/2018 at 1:35 AM, LotusFlower said:

Yes!

I quoted the wrong thing but this was Briana saying bombarge.  Did she mean bombard?

 

On 7/31/2018 at 12:58 PM, IgnoranceisBLISS said:

I agree to the rest of your post but that is the same place that they always stay when the go to see Dr. Tsao. I think it is a Ronald Mcdonald house or an equivalent to that. 

 Nationwide Children's Hospital is a big kids' hospital.  This is their Ronald McDonald house : https://www.nationwidechildrens.org/your-visit/overnight-and-extended-stays/before-you-arrive/temporary-housing-and-accommodations/ronald-mcdonald-house  You can take a virtual tour.  It looks like a lot of fun for kids and there are hotel type rooms.  I wonder if they don't stay there because of filming reasons. They'd have to get permission from everyone who is there, it would be disruptive to have filming, they'd have to do a lot of work to hide (can't remember the term) the people who don't want to be on TV, and again I think it would be really disruptive to all the sick kids there as well as worried families.  I don't know that they'd get permission to do that because it's where kids and family go to relax.  On the other hand, it could be that Leah hasn't been able to get a room at the house because she hasn't had enough lead time.  When they first started going, did they stay at this same place when they could carry the baby easily?  It might just seem familiar now and Leah doesn't think much further than that and might not even be aware of what the McDonald house has to offer.

 

On 7/31/2018 at 6:15 PM, Scarlett45 said:

A. Fucking. Men. 

I know I’m bias here because not telling your disabled child “no”, when said no is in the best interest of their safety and security is the bane of my Sib existence. She’s not doing Ali any favors. Right now it’s more about HER feelings regarding Ali’s illness than Ali. There’s nothing in this world as strong as a mother’s guilt but NO. Just no. 

This is something so many parents (mothers more so than fathers because they take on most of the care) start to do when they have a disabled kid.  They try to make life easier for their kids because they are disabled, or make life better by allowing them things, when it really doesn't do that.  They also make their entire identity around being the mother of a disabled kid. "You're such an awesome mother for having to raise such a child." "Wow, your child is disabled but you create such a good life for her."   When the child dies or grows up they have no idea who they are.  If you took Ali out of the equation, who is Leah?  I don't think anyone knows including herself. There's Leah, mother of a disabled kid.  Not there's Leah, a woman who does this and this who has three children she raises.

On 8/1/2018 at 9:55 AM, Mothra said:

 

The school, otoh, ought to be able to accommodate her chair everywhere.  The ADA requires that public buildings be accessible, and the IDEA makes sure that includes schools.  This is another reason I think it would be foolish for Ali to be home-schooled, btw.

 

You'd think that a school would be fully accessible, but there's a big difference between ADA compliance and full  true accessibility.  Stuff like the TP holder in the toilet stall being a couple inches out of the standards means it can be reached.  Or if it's put above the grab bar instead of below it.  This is what a toilet that is truly accessible to people in wheelchairs looks like http://www.changing-places.org/   It has a hoist so people like Ali (when she gets older, heavier and weaker) can get themselves onto a toilet.  Many women who are 100% continent end up getting a suprapubic catheter simply because they can't physically get themselves to the toilet (the guys are lucky in this way).  She's probably going to have to fight hard to get the school to put in a hoist in a bathroom for her and schedule her classes close enough to the bathroom.  If she ends up having to use a diaper, this bathroom means she won't have to change it on the floor. If her mom wanted to make her bathroom truly accessible she would start making a wet room that Ali can wheel into, no doors or curtains but a bench where she can sit and bathe.

On 8/2/2018 at 6:40 PM, WhosThatGirl said:

Yeah. I mean Donna is probably not a real scary threat, like I don’t think she would have hurt Chelsea but just randomly showing up after she obviously got the letter Chelsea sent, who knows what Chelsea would have been opening her door to. I wouldn’t want to do it alone either. It’s obvious the Linds weren’t following the rules and Adam taking pictures and posting them all over social media just proves how stupid he is. If one of Chelsea’s friends hadn’t sent it to her, a media source would have picked it up more than likely.

 

Also.. I hate that Ali doesn’t use her wheelchair and while I think Leah and Corey don’t do so much to encourage it, a part of me wonders if Ali herself is being stubborn about it. She wants to be like all the other kids, she wants to be like her sister. And yeah like I said I’m sure Leah and Corey don’t help encourage it and she needs to use it! But I have to say something, I’m stubborn. As an adult. I have a walker and I hate using it! I hate it. And I know I walk better with it but.. I still hate it and I’m not a fan of it. And I’m an adult. And I use it because I’m an adult and I know better but it’s hard to make a child see that end result.

I have known people whose mothers and MILs became unhinged when their access to their grandkids was limited, even if the limits occurred because the women did something that endangered their grandkids (physically or emotionally).  I would not have trusted Donna to have a calm conversation upon opening up that door.

Ali may be kind of brainwashed to think like that, however.  Remember when she first got the chair she was excited about it?  But her parents kept talking about how they want her to walk as long as she can because of no good reason.  They put a value on her walking when one shouldn't have been placed on that.  So she could be saying that she doesn't want to use her chair, that she wants to do this physical thing, etc because she's been conditioned to think that is what anyone should want in her situation.  Her parents very obviously value her walking over her using a chair and she's subsumed that as part of her own desires.  This happens to a ton of disabled kids, myself included.  I went through a frustrating and difficult childhood trying to meet the physical expectations that my mother had for me.  My being utterly exhausted and frustrated wasn't important.  It was more important to do what I could to have a typical abled life and my mother would say a normal life.  It didn't matter that doing what I needed physically and emotionally would mean I was a happier person, I could not give in to my disability.  It's a challenge I have to stand up to and conquer.  These are all common misconceptions of what disability is and I can't help but think that Ali feels she has to do all that and push herself because of her parent's attitude towards disability.  I don't ever see Ali being encouraged to do her non physical things that interest her and explore how to be happy with it.  I just see her being forced to give up a birthday that she can fully participate in for one that is physical because that's what Gracie wants.  No one even thought about having two birthday parties,  one that was full of Ali activities and was for her and one that was for Gracie.  Who cares if they have to invite the same people a second time?  It's more important that Ali embrace being able bodied for as long as she can, even though she's never been that way.

On 8/5/2018 at 1:19 AM, SheTalksShit said:

I don't believe for one second that Adam's parents misunderstood the court order. The whole reason they even went BACK to court is because Chelsea no longer felt comfortable with Adam being around Aubrey outside of the visitation center. Even now, I think they will continue to let Adam see her when they are with her and simply tell Adam not to post any pictures of Aubrey on IG when they give him time w/her, but then again, if Adam can't post himself w/her on IG, he probably won't bother to come around when she's there, period, so I guess it works out either way. 

 

Aubree is old enough to tell her mother that Adam still sees her and I don't think that she's going to be able to be intimidated into hiding that from her mother.  She's a little old for that to work.  I don't think they will threaten her with crap like "we'll hurt your mom if you tell her about this visit."  If they do say anything like that I think that she trusts her mom and Cole enough to say something despite whatever her grandmother might say or do.                    

On 8/5/2018 at 1:30 AM, SheTalksShit said:

ditto with all you said. that's why i keep saying it's about ali's quality of life, too. she doesn't have nearly as much time as most of us, so it's important she gets to enjoy at least some of the time she's got. 

i heard it was her 30's, but with the way things are going w/her lungs, i don't know. her lung capacity wasn't just a few points below normal, it was WAYYY belong normal. and people keep nit-picking at leah with the wheelchair, but the Dr. himself said Ali's strength is still pretty good, so it's not her muscles that are rapidly deteriorating yet, the issue now is her LUNGS, which wasn't known about previously. 

If Ali's decline in muscle strength happens slowly not severely Ali can live a normal life span.  If she has severe and swift muscle weakness and wasting she could pass when she's a teenager or in her early 20s.

 

On 8/6/2018 at 7:03 PM, SheTalksShit said:

Also, the issue is not her strength right now, not yet, anyway, (so clearly, whatever Leah's doing is not causing any strength issues yet), it's her lungs, which was previously not known about. 

The issue is indeed her strength and not her lungs.  Lungs themselves don't have muscle tissue.  Muscular dystrophy is a disease that causes weakenss and loss of muscle mass.  Her Titin gene mutation means that the muscle problems are also caused by a change in the titin gene.  That gene makes titin protein.  Titin protein deals with elasticity, it is responsible for making muscles able to stretch and bend. Mutations in TTN gene (titin gene) are known to cause a lot of cases of cardiomyopathy, where the heart becomes enlarged, rigid, weak and it can have muscle replaced with fibrous tissue (scar tissue).  So she has limb girdle muscular dystrophy with a titin mutation.  I'm not sure if the mutation caused the MD or if she has the MD and the mutation as two separate conditions and both happen to affect muscles.  Anyway, lungs have connective tissue, not muscle tissue.  So the MD and the titin mutation don't do anything to the lungs directly.  However, breathing is controlled by muscles.  So when the muscle strength in her arms and legs has weakened, you can assume the muscles controlling her breathing have weakened too.   Ideally Ali would be taught breathing exercises so she can retain the ability to cough for as long as possible.  Coughing means she can clear her airways and it will help ward of respiratory failure.  This is taken from a guide for another type of MD but the exercises are used for a lot of different causes of muscle weakness  http://www.muscle.ca/take-a-deep-breath-but-dont-take-it-for-granted-breathing-and-duchenne-muscular-dystrophy/  They've even found that yoga breathing exercises help increase pulmonary function in people with Duchenne's.   https://www.ncbi.nlm.nih.gov/pubmed/24831396

[Mothra]

3 hours ago, Eater of Worlds said:

You'd think that a school would be fully accessible, but there's a big difference between ADA compliance and full  true accessibility.  Stuff like the TP holder in the toilet stall being a couple inches out of the standards means it can be reached.  Or if it's put above the grab bar instead of below it.  This is what a toilet that is truly accessible to people in wheelchairs looks like http://www.changing-places.org/   It has a hoist so people like Ali (when she gets older, heavier and weaker) can get themselves onto a toilet.  Many women who are 100% continent end up getting a suprapubic catheter simply because they can't physically get themselves to the toilet (the guys are lucky in this way).  She's probably going to have to fight hard to get the school to put in a hoist in a bathroom for her and schedule her classes close enough to the bathroom.  If she ends up having to use a diaper, this bathroom means she won't have to change it on the floor. If her mom wanted to make her bathroom truly accessible she would start making a wet room that Ali can wheel into, no doors or curtains but a bench where she can sit and bathe.

When I questioned the accessibility of Leah's house, I did not mean I thought Leah should remodel (although that would be ideal--and valuable not just for Ali but for everyone watching this show).  I was pointing out that the desire to keep Ali in her wheelchair all the time was unrealistic, especially at home.  You are correct, of course, about true accessibility, but my concerns are more with the very basic steps that should be taken to assure that all children can use the school.  My assumptions about accessibility at Ali's school may be overly optimistic; I am sure they do not meet the absolute standards of ADA--as they should, of course.

I think there is a valuable study waiting to be undertaken about accessibility in schools where there is not much money, like WV.  If Leah were a more activist-type mother, she and Ali have an unmatchable platform to agitate for federal funding to help poor schools comply with ADA.  Leah is, as I keep saying, very young and very stupid.  I wish some more experienced advocate for people with disabilities--and there are some in Charleston--would take Leah in hand and show her how to use her power that she was so vocal about standing in not so long ago.  Girl doesn't know what power she really has.

ETA:  Upon (very brief) reflection, it would be simple to add a self-contained bed and bath, with full accessibility, for Ali, even if the rest of the house remained problematic, and I don't know why someone hasn't talked to Leah about doing this.  I have not been overly enthusiastic about the value of a parental support group, but I do believe strongly that Leah needs contact with parents who know how to get things done for their kids.  People like that belong to support groups, too, but my worry would be that Leah would revel in the "I know just how you feel" stuff--which can be valuable--and not want to be a trouble-maker, which is what activist parents would encourage her to do.

Edited August 11, 2018 by Mothra

[LotusFlower]

7 hours ago, Eater of Worlds said:

I quoted the wrong thing but this was Briana saying bombarge.  Did she mean bombard?

I guess she combined “bombard” with “barge in” and got bombarge! 

[ReadMeLattice]

On 8/6/2018 at 7:14 PM, SheTalksShit said:

yeah I know it's not popular around here but it's blatantly true, I'm not one to be scared of speaking my mind just bc I know other ppl won't agree. 

I've seen Ali protest several times - the time at the pool sticks out to me, especially, when Ali protested that she wanted to swim and complained that Gracie and her younger sister were allowed to go into the pool, but she wasn't. She threw quite the tantrum, actually. And one time, on their way to the Dr's, Leah asked Ali if she could carry her and Ali said no, she wanted to walk. 

I've seen Ali refuse the helmet. 

And Leah constantly mentions Ali's desire to do things that she can't do. 

As for what the disability is, that's fine, I don't need to know, you mentioned it and I inquired as to whether it was anything like Ali's bc I was wondering if whatever disability you may have would require the type of compromise in quality of daily life that such restrictions you think ought to be imposed on Ali 24/7 would entail. You made the comparison of your disability to Ali's and so that's why I asked. 

Some kids may be relieved about adults "letting" them use a wheelchair, but Ali does not appear to be one of them, she clearly does not like it. 

And yes, Corey and his family have that typical working-class redneck "mind over matter, you can do anything you set your mind to!" attitude and so long as you grow up without a disability and everyone close to you is able-bodied, as well, it's very easy to think that way bc he sees things from his own able-bodied, healthy perspective of challenges he may have personally conquered in his life. he has never had to overcome any challenge in his life while being afflicted with the very real limitations that these disabilities impose on people, so it was hard for him to comprehend. I also think he comes from a culture that's distrustful of what they don't understand (the medical field being one of them). i really hate to say this, but there seems to be a real culture of ignorance in the appalachia area, a culture that ignores science and the opinions of experts in exchange for their own over-simplified opinions and ideas of how things are. i think having Ali kinda challenged that worldview of his, big-time. I do think he has a better understanding of her condition now, tho. Like he didn't protest when Leah said she was gonna get Ali an aid. 

 

I personally believe that Ali’s protests are related to her family’s attitude. Where did she learn them from? We get most of our attitudes from our families. Unconsciously or consciously, she picks up their beliefs. We learn how to think about virtually everything from our parents. 

and yes, i know why you asked and these are conversations I have a lot because that “compromise of daily life” is an everyday reality for my family- quite frankly I just thought your tone was a bit unnecessarily aggressive for an online conversation about people we don’t know and didn’t appreciate it so didn’t feel like answering. 

I don’t “think restrictions should be placed on her 24/7,” I think her family should listen to the specialists they’ve hired if they continue to see them, and I know what the “she’ll walk no matter what” attitude does to folks. It’s not good, ever, except maybe for the family’s morale, but not for the disabled person themselves. I agree that the attitude is common and pervasive. That’s why it’s so harmful. 

Edited August 17, 2018 by Lm2162

[Eater of Worlds]

13 hours ago, Lm2162 said:

I personally believe that Ali’s protests are related to her family’s attitude. Where did she learn them from? We get most of our attitudes from our families. Unconsciously or consciously, she picks up their beliefs. We learn how to think about virtually everything from our parents. 

and yes, i know why you asked and these are conversations I have a lot because that “compromise of daily life” is an everyday reality for my family- quite frankly I just thought your tone was a bit unnecessarily aggressive for an online conversation about people we don’t know and didn’t appreciate it so didn’t feel like answering. 

I don’t “think restrictions should be placed on her 24/7,” I think her family should listen to the specialists they’ve hired if they continue to see them, and I know what the “she’ll walk no matter what” attitude does to folks. It’s not good, ever, except maybe for the family’s morale, but not for the disabled person themselves. I agree that the attitude is common and pervasive. That’s why it’s so harmful. 

I completely agree with you.  At that age most kids follow their parents' guidance on things like that.  I was a victim of it as were many of my disabled friends.  It made things so much worse for me, and even now my mother refuses to accept I can't do the things I could when I was younger. She refuses to accept how much physical and emotional stress was put on me because she was trying to get me to be as "normal" as possible.  What Ali's family hasn't accepted is that there is nothing wrong with being disabled.  We don't spend our days thinking about things we can't do and how much being disabled sucks or any of those things that the abled assume we think.  They need to learn to take joy in Ali as she is and do the best for her, not for the Ali they think they are losing (and I mean losing walking Ali to non walking Ali, not losing her life).

[FozzyBear]

On 7/31/2018 at 8:36 AM, teapot said:

maybe they're just regular job offers, like customer service

you are now online with Jenelle.  how can I help you?

CUSTOMER:  I seem to have gotten locked out of my account

JENELLE:  DUDE, LEAVE ME ALONE!!!!

I was thinking they might just be subscription offers. Like sign up for 6 months get the 1st month free.