Do parents of autistic children get disability SSI?

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cinlewis
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15 Dec 2012, 1:41 pm

OliveOilMom wrote:
I would seriously have a hard time resisting the urge to spit in your face and I am a calm, hard-to-provoke person. You clearly have no idea what it is like to care for someone on the spectrum, let alone what it is like to be someone on the spectrum.


Ok I will clarify: this single mom is my girlfriend that I have been living with for almost two years, and she is divorced from her daughter's father. This mom will not work, but lives off child support from the girls dad, the SSI for her daughter's autism, and I pay the entire rent on the house and all bills. She uses her child support/SSI on food, car payments, and credit card payments, and whatever needs her daughter requires when you take away the rent/electricity that I supply (yes there are therapy copays and such but not too expensive).

Your daughter may be a career wrecker as you say, but this girl is not. She is on the spectrum, and she does have meldowns with her mom, but never with me. I babysit this kid all the time when the mother is out and she is fine...not normal, as she is obviously on the spectrum...but she gives me little problem other than the fact that she has obsessions and does not gravitate towards activities that normal girls do, so I always have to keep an eye out for her to not get into trouble, whereas normal girls can be trusted much easier when they are playing with Barbies or video games. My secret is I made the house rules clear to her and I don't let her get away with anything and for some reason it works like a charm.

But as soon as the mom comes home, that kid starts giving her an immensely hard time, as the mom lets her get away with everything. I tell her mom I will stay and watch the child after school hours so that she can work, but for the past couple years she has the excuse that she can't find a job. The daughter's father is very active in her life and has her about 40% of the time, but does not get any of the SSI benefit since it was the mother who did all the work to get the daughter accepted for benefits...and the girl is fine with her dad...but not other members of his family "who let her get away with things" (to quote him)

I'm sorry if my post sounds judgemental to you but I'm simply telling exactly what I and several others have observed. The particular little girl is truly autistic so no fraud there, but I don't understand why she's no problem with strict people. Or maybe her dad and I just have a high tolerance and patience for her special needs and know to make her understand.



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15 Dec 2012, 2:52 pm

InThisTogether wrote:
OliveOilMom wrote:

BTW, what kind of a first post is this anyway? You're not likely to make many friends here with it.


You got that right.

My daughter is mildly affected and probably appears "normal enough" to most people. Heck, she doesn't even qualify for the "short" bus. But it is a career wrecker. When my daughter was younger, she had countless hours of therapy and someone had to take her there. I couldn't work full-time. Couple that with all of the extra school meetings that parents of kids on the spectrum invariably find themselves at, the fact that we need to be able to leave work at the drop of a hat if issues arise, the stress from caring for a child that can be unpredictable, the emotional drain you experience from watching your kid struggle, and it is easy to see how it is difficult to be taken seriously at work.

To be honest, you sound like an angry, bitter, judgmental person from your post. If you were standing in front of me and said that my daughter
Quote:
tends to throw a tantrum when she doesnt get her way, until you make her understand she isn't the only person in the world.
I would seriously have a hard time resisting the urge to spit in your face and I am a calm, hard-to-provoke person. You clearly have no idea what it is like to care for someone on the spectrum, let alone what it is like to be someone on the spectrum.

If you are not an angry, bitter, judgmental person, perhaps you ought to take some time to reflect on why you are so concerned about whether or not this family deserves assistance and why it makes any difference to you whatsoever. This little girl and her mother did not ask to have the difficulties they have to face. Ignorance from people like you is perhaps the biggest difficulty of all.


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15 Dec 2012, 3:06 pm

cinlewis wrote:
I'm sorry if my post sounds judgemental to you but I'm simply telling exactly what I and several others have observed. The particular little girl is truly autistic so no fraud there, but I don't understand why she's no problem with strict people. Or maybe her dad and I just have a high tolerance and patience for her special needs and know to make her understand.


There could be many reasons why she acts ok with you and not with her mum. It's possible (I'm sure some parents will testify this too) that many act normal (ie, whilst at school) and when it gets too much and they can't act "normal" or "NT" any more, that's when they play up.

If the mum is with you, how is she a single parent? :?



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15 Dec 2012, 3:55 pm

cinlewis wrote:
OliveOilMom wrote:
I would seriously have a hard time resisting the urge to spit in your face and I am a calm, hard-to-provoke person. You clearly have no idea what it is like to care for someone on the spectrum, let alone what it is like to be someone on the spectrum.


Ok I will clarify: this single mom is my girlfriend that I have been living with for almost two years, and she is divorced from her daughter's father. This mom will not work, but lives off child support from the girls dad, the SSI for her daughter's autism, and I pay the entire rent on the house and all bills. She uses her child support/SSI on food, car payments, and credit card payments, and whatever needs her daughter requires when you take away the rent/electricity that I supply (yes there are therapy copays and such but not too expensive).

Your daughter may be a career wrecker as you say, but this girl is not. She is on the spectrum, and she does have meldowns with her mom, but never with me. I babysit this kid all the time when the mother is out and she is fine...not normal, as she is obviously on the spectrum...but she gives me little problem other than the fact that she has obsessions and does not gravitate towards activities that normal girls do, so I always have to keep an eye out for her to not get into trouble, whereas normal girls can be trusted much easier when they are playing with Barbies or video games. My secret is I made the house rules clear to her and I don't let her get away with anything and for some reason it works like a charm.

But as soon as the mom comes home, that kid starts giving her an immensely hard time, as the mom lets her get away with everything. I tell her mom I will stay and watch the child after school hours so that she can work, but for the past couple years she has the excuse that she can't find a job. The daughter's father is very active in her life and has her about 40% of the time, but does not get any of the SSI benefit since it was the mother who did all the work to get the daughter accepted for benefits...and the girl is fine with her dad...but not other members of his family "who let her get away with things" (to quote him)

I'm sorry if my post sounds judgemental to you but I'm simply telling exactly what I and several others have observed. The particular little girl is truly autistic so no fraud there, but I don't understand why she's no problem with strict people. Or maybe her dad and I just have a high tolerance and patience for her special needs and know to make her understand.


Guess what? We aren't here just to make you happy.

[Mod. edit: insults removed]


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15 Dec 2012, 4:38 pm

cinlewis wrote:
Ok I will clarify: this single mom is my girlfriend that I have been living with for almost two years, and she is divorced from her daughter's father. This mom will not work, but lives off child support from the girls dad, the SSI for her daughter's autism, and I pay the entire rent on the house and all bills. She uses her child support/SSI on food, car payments, and credit card payments, and whatever needs her daughter requires when you take away the rent/electricity that I supply (yes there are therapy copays and such but not too expensive).


So, I am still confused...you came on a public forum to bash your live-in partner? It sounds to me like you have issues managing your joint expenses. That hardly has anything to do with the girl's autism, or the fact that she gets SSI.

Plus, OliveOilMom did not say what you quoted her as saying, I did. Might just be difficulties with figuring out how to work the quotes, but I don't want my words attributed to someone else.

I'd also like to point out that the fact that the child acts differently around you than around her mother is not a valid reason to deny SSI if she is entitled to receive it. So I'm not really sure where that point of your argument is headed. That is usually the argument people make to try to demonstrate why a high functioning autistic child doesn't really have autism. If you are in agreement that she has autism, are you then trying to say that your girlfriend is a bad parent? And if your girlfriend is a bad parent, then how is that related to her daughter's SSI?

I am more confused after your clarification than I was before it.

FTR, I am not in favor of people bilking the system. Supports are put into place to help people who need help. But your way of communicating your "concerns" is very off-putting (at least to me). I am a single mother of two and I get by on my own, but that does not mean everyone can. That the child is cared for and has her needs met should be the most important part of the equation and I have not heard you say her needs are not being met.


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15 Dec 2012, 5:02 pm

cinlewis wrote:
Ok I will clarify: this single mom is my girlfriend that I have been living with for almost two years, and she is divorced from her daughter's father. This mom will not work, but lives off child support from the girls dad, the SSI for her daughter's autism, and I pay the entire rent on the house and all bills. She uses her child support/SSI on food, car payments, and credit card payments, and whatever needs her daughter requires when you take away the rent/electricity that I supply (yes there are therapy copays and such but not too expensive).


If you have such obvious disrespect for your girlfriend, why are you dating her?

cinlewis wrote:
My secret is I made the house rules clear to her and I don't let her get away with anything and for some reason it works like a charm.


Ok. so you are looking for validation of your parenting techniques, here? Why? Are you looking for something to print out and show her?

cinlewis wrote:
But as soon as the mom comes home, that kid starts giving her an immensely hard time, as the mom lets her get away with everything. I tell her mom I will stay and watch the child after school hours so that she can work, but for the past couple years she has the excuse that she can't find a job. The daughter's father is very active in her life and has her about 40% of the time, but does not get any of the SSI benefit since it was the mother who did all the work to get the daughter accepted for benefits...and the girl is fine with her dad...but not other members of his family "who let her get away with things" (to quote him)


1)The girl may trust her mom enough to meltdown in front of her and not you or her "strict dad." This is very common.
2)Your gf could be handling things poorly, or, not. There is no way to tell for sure as non observers on a forum.
3)It is weird that you are siding with your gf's ex and are so negative about your own gf.
4)Why are you resentful about your gf getting money from SSI and the girl's father? I would assume that means less money you have to shell out.
5)Are you are pissed/resentful about your girlfriend not working and you want her to put the girl in daycare? It really is not your decision to make other than complaining about her not paying half the household expenses. It may be because she does not trust untrained persons with her child; it may be because she is looking for an excuse not to work. Again, I have no way of knowing that. If you resent paying all the bills, then tell her that and deal with it from that perspective.
6) She probably gets the SSI because she is the custodial parent. Are you really upset that her ex is not getting a portion? Why would you care? This sounds like a complaint that a new wife or girlfriend of the ex would make, not her own boyfriend. It makes me skeptical.
7)It is also interesting that you know so much about what the ex's family members "let her get away with. I apologize if I am wrong, but my BS meter is going off like crazy. This really sounds like a stepmom or gf of the ex comment.

cinlewis wrote:
I'm sorry if my post sounds judgemental to you but I'm simply telling exactly what I and several others have observed. The particular little girl is truly autistic so no fraud there, but I don't understand why she's no problem with strict people. Or maybe her dad and I just have a high tolerance and patience for her special needs and know to make her understand.


It does sound judgmental. It sounds like you really don't respect your gf very much, and that is why it comes off so badly. It comes off as you thinking she is a mooch and a bad parent. Strictness is usually not they key so much as consistency but I doubt you will be very persuasive about anything (whether you have any valid points are not) if you come off this judgmental to her. Most people don't want to be criticized for their parenting, especially from people who swoop in, not really knowing all the back story, anyway.

Also why did you first start off by saying you "know someone" as opposed to saying it is your girlfriend and all that, in the beginning? I am really unclear as to your actual objective. I am suspicious about whether or not you are now being honest or not. These complaints really sound like complaints someone related to or dating the ex would make not complaints a live-in bf would make. The more I read what you wrote the more doubtful of your sincerity/truthfulness I get.



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15 Dec 2012, 6:07 pm

OK, so my radar does not go off often. This post was nagging at me in my brain and I decided to look up the OP's profile. Whether it will get changed later or not I do not know:

Viewing profile :: cinlewis
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Notice that the gender listed is female. I am doubling down on my guess that this a step mom of the little girl or gf of the ex. It could be a lesbian gf of the mom, I suppose, but based on all the positive info on bio dad, I doubt it.



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15 Dec 2012, 6:18 pm

I always check new people's bios and I saw she was a woman right away. Just assumed she was a really bad girlfriend. But you are right. It is probably more likely that she is the dad's new gf.

Sad.

Poor girl to have to have this level of drama and crap in her life. As if growing up autistic isn't hard enough.


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15 Dec 2012, 6:24 pm

cinlewis wrote:
Your daughter may be a career wrecker as you say, but this girl is not.


I also want to clarify that I have never said my daughter is a career wrecker. But the flexibility required to raise and parent her is not conducive to climbing the corporate ladder. It's more a matter of other people's perceptions of my needs as a parent that keep me where I am--I can't work 50-60 hour weeks--not my daughter's disability.

You clearly have no idea how much prejudice autistics and their parents face on a daily basis.


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15 Dec 2012, 8:47 pm

cinlewis wrote:
OliveOilMom wrote:
I would seriously have a hard time resisting the urge to spit in your face and I am a calm, hard-to-provoke person. You clearly have no idea what it is like to care for someone on the spectrum, let alone what it is like to be someone on the spectrum.


Ok I will clarify: this single mom is my girlfriend that I have been living with for almost two years, and she is divorced from her daughter's father. This mom will not work, but lives off child support from the girls dad, the SSI for her daughter's autism, and I pay the entire rent on the house and all bills. She uses her child support/SSI on food, car payments, and credit card payments, and whatever needs her daughter requires when you take away the rent/electricity that I supply (yes there are therapy copays and such but not too expensive).

Your daughter may be a career wrecker as you say, but this girl is not. She is on the spectrum, and she does have meldowns with her mom, but never with me. I babysit this kid all the time when the mother is out and she is fine...not normal, as she is obviously on the spectrum...but she gives me little problem other than the fact that she has obsessions and does not gravitate towards activities that normal girls do, so I always have to keep an eye out for her to not get into trouble, whereas normal girls can be trusted much easier when they are playing with Barbies or video games. My secret is I made the house rules clear to her and I don't let her get away with anything and for some reason it works like a charm.

But as soon as the mom comes home, that kid starts giving her an immensely hard time, as the mom lets her get away with everything. I tell her mom I will stay and watch the child after school hours so that she can work, but for the past couple years she has the excuse that she can't find a job. The daughter's father is very active in her life and has her about 40% of the time, but does not get any of the SSI benefit since it was the mother who did all the work to get the daughter accepted for benefits...and the girl is fine with her dad...but not other members of his family "who let her get away with things" (to quote him)

I'm sorry if my post sounds judgemental to you but I'm simply telling exactly what I and several others have observed. The particular little girl is truly autistic so no fraud there, but I don't understand why she's no problem with strict people. Or maybe her dad and I just have a high tolerance and patience for her special needs and know to make her understand.



Okay, just sounds like she is a clever girl. She sounds she is capable of understanding certain behaviors at certain places. She knows you don't let her get away with things so she listens and her mother does so she acts her old self again. I was the same way and still am and I knew an aspie who was too. But yet he couldn't figure out home behavior and school behavior but yet knew guest behavior and home behavior. :? He also had different behaviors with his dad and then his ODD behavior with his mother. His dad was more strict with him and more consistent and the mother wasn't so he was more violent and abusive when his dad be away and when he be home, he be good again and was less abusive. It was like he had split personalities, same as me. Of course everyone does because we all modify our behavior for certain situations or for certain people, especially at work and on forums due to the rules. Doesn't mean we are faking it or have split personalities for real. Then there are certain people we feel comfortable with, so we are ourselves more when we are with them.


Sorry folks, go ahead and get mad at me too. Looks like I finally agreed with the OP and the only one who does. :roll:


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Last edited by League_Girl on 15 Dec 2012, 9:13 pm, edited 1 time in total.

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15 Dec 2012, 8:53 pm

nevermind read more so what I said didn't really work, I'll have to get back to this later after I figure out a response that makes sense after reading the thread.


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15 Dec 2012, 9:04 pm

League_Girl wrote:
Sorry folks, go ahead and get mad at me too. Looks like I finally agreed with the OP and the only one who does. :roll:


I don't see how agreeing that the girl can act differently around different people would be any reason for anyone to get mad at you. The OP's real beef is with the fact that the girl gets SSI and that her mom doesn't work. I don't see you saying that you agree that this is any of her concern.


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15 Dec 2012, 9:15 pm

InThisTogether wrote:
League_Girl wrote:
Sorry folks, go ahead and get mad at me too. Looks like I finally agreed with the OP and the only one who does. :roll:


I don't see how agreeing that the girl can act differently around different people would be any reason for anyone to get mad at you. The OP's real beef is with the fact that the girl gets SSI and that her mom doesn't work. I don't see you saying that you agree that this is any of her concern.


Because the OP is judging the girl too and it's making people angry here so I agreed with her about the child based on what she had written about her. That's what I thought when I read the responses to her reply. Not because they are still angry with her about her having a beef about the mother being on SSI and not working.


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15 Dec 2012, 9:28 pm

League_Girl,

There is no reason to be mad at you. I don't have any idea whether the girl's mom is a good parent or not. I just do not see the OP as a reliable narrator. I think she has her own agenda, and I do not trust what she says.

1) She has too much of an interest in how much money the mom gets from various sources and whether the mom works and has childcare. She also has too much interest in various other things for who she claims to be.
2) She has been disingenuous about her relationship to the girl and her mom. First claiming to merely know them and then saying the mom is her girlfriend, while talking like a step mom, with step mom priorities. There is nothing wrong with being a step mom (or a gf to the bio dad) but if that is the case she should own it. It just sounds to me like she dislikes the bio mom and is looking for things to criticize.

It is hard to take her at face value on anything else she says about the girl's upbringing for those reasons, at least for me.

No reason to be mad at you. I am not even angry at her. I just think she is not who she claims to be and has her own motives.



Last edited by ASDMommyASDKid on 16 Dec 2012, 7:33 am, edited 1 time in total.

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16 Dec 2012, 2:11 am

Just a reminder:

Girlfriend can simply mean a friend that is female.

To the OP, since you seem to be trying to satisfy your curiosity:

Once thing to remember is that how an AS child functions changes over time, but qualifying for something like SSI is relatively static. If a parent applies when the child is, say, non-verbal, and then the child advances and starts to talk, the qualification does not instantly disappear.

I don't like to assume negatives about people. I prefer to assume that I could be missing something, that there is something I don't know, which would make it all make sense to me - except of course that missing piece is probably none of my business, so I leave it all be.

As others have pointed out, it is very common for AS kids to act their best with people that aren't their main caregivers, while saving up their stress and needs to let loose for the one person they know loves them unconditionally. They can only hold the act for so long. Were you to care for the child exclusively for weeks instead of hours, you would see different behavior. At some point she'd break, unable to hold it together for you anymore. It's great that you have clear rules and the child follows them, it is solid practice for her, but it doesn't say anything about the mom. What she can do 24/7 and what she can do for a limited number of hours are not the same thing.


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16 Dec 2012, 11:37 am

I'm sorry if I've appeared judgemental. I realize this is a sensitive topic and this is my first attempt to get answers on the net. I didn't mean to ruffle any feathers but when I originally posted the question, everybody assumed I didn't spend enough time with the child to understand how her true behavior...but I know I have spent considerable time as a second parent to have a valid observation. Really didn't mean to sound like I'm bashing my gf or the SS system, but just to enquire if autistic parents typically collect SS disability for their child, THAT'S ALL. Then I felt I had to defend myself by clarifying which looked like I'm bashing my girlfriend...truth is I'm glad she's getting SS because it helps me indirectly as I keep a roof over our heads, regardless of what te money is spent on.