Lizard Queen
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Post by Lizard Queen on Mar 31, 2014 12:13:16 GMT -5
I has really afraid that my older son (4) was autistic when he was a baby. (Not so worried about it now.) There were all kinds of indicators: older parents, I took Welbutrin during part of the first trimester (there was a study that found a link-not sure on the status of that now), a bit of a traumatic birth (decreased oxygen levels/emergency C-section). At somewhere around 2 months, the baby books said he should love looking in your eyes. DS would avoid looking at me and stare at the ceiling fan over my shoulder...all the freakin' time. When you picked him up, instead of bending his legs like a typical baby he would straighten them out and looked like an astronaut. When he was a few months older, he was obsessed with spinning toys. When he started walking, he walked on his toes (still does this sometimes), and tended to flap his arms. He liked to line up his cars/toys in a straight line.
So yes, I was very worried. What I did, (which I will never have any proof that helped anything at all or that anything was really wrong), is I started to work intently on establishing eye contact and talking to him, from about 6 or 8 weeks until 11 weeks, when I went back to work. I had some progress, then went backwards until I stressed to my husband how worried I was. After DH quit playing with his phone when feeding DS, we had a breakthrough. I also shared my concerns with DS's first sitter and asked that she work on eye contact and talk to him. I grew progressively less worried as DS improved, though as he grew, he showed the other signs I previously mentioned. I continued to worry (though less so) until I finally saw DS pretend to talk on the phone. I felt that the pretend play was the final hurdle. DS has just turned 4, so hasn't gotten to school where they may spot more signs when he is asked to conform to more structured behaviors. Let's just say, I wouldn't be completely shocked if he were still found to be slightly on the spectrum. However, at this point, I do not believe that kind of label would be beneficial to him--more of a hindrance, perhaps.
So yes, this lay-person cares very much this subject.
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Miss Tequila
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Post by Miss Tequila on Mar 31, 2014 17:40:46 GMT -5
I've got too much happening here today, so this will be a bit of a "drive by" post. DS actually has the medical diagnosis of autism (where you get the evaluation through a psychiatrist's office). However, he also qualified through the "education" diagnosis, where you meet the criteria of your school district's evaluation.
There is a community about 30-40 miles from here that is wealthy, that has an "autism cluster" of kids coming up. That would be an interesting group to study. Not sure if the "nerd" factor is part of the deal, or, for example, wealthier communities tend to make greater use of lawn services (chemicals), or why that particular area is getting more than the average number of autistic kids being born there. Not to argue but our diagnosis also came through a psychologist, independent of the school district. I just used it to get preschool services.
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busymom
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Post by busymom on Mar 31, 2014 18:23:29 GMT -5
No worries! DS had stopped talking, so I contacted someone I knew at the local school district to get advice, since I knew they offered free speech lessons for kids who were delayed. The district tested him, & told me they thought he might have autism. So, because the insurance company would not pay for speech, OT, or PT without a "real" diagnosis, we went to a psychiatrist in our community. Not that getting the psychiatrist's diagnosis made getting coverage easy. If I had a dollar for every time I fought an insurance company to get at least some of DS's therapies covered, using the Phil script I could've retired by now.
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Miss Tequila
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Post by Miss Tequila on Mar 31, 2014 18:42:47 GMT -5
No worries! DS had stopped talking, so I contacted someone I knew at the local school district to get advice, since I knew they offered free speech lessons for kids who were delayed. The district tested him, & told me they thought he might have autism. So, because the insurance company would not pay for speech, OT, or PT without a "real" diagnosis, we went to a psychiatrist in our community. Not that getting the psychiatrist's diagnosis made getting coverage easy. If I had a dollar for every time I fought an insurance company to get at least some of DS's therapies covered, using the Phil script I could've retired by now. I agree. I remember having to have our ped write a script with a diagnosis of oral motor disorder (or something like that) for our insurance company to cover anything. The words "delayed" couldn't be used or it would be denied.
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Deleted
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Post by Deleted on Mar 31, 2014 21:13:40 GMT -5
I got a 35 on the test.
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Nazgul Girl
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Post by Nazgul Girl on Apr 1, 2014 20:12:31 GMT -5
Gin, you just put your finger on one of the many missing links. On the one hand there are people like Les who can't seem to be able to get the support she needs and on the other hand there are people like your friend who work themselves silly just to try and solve this horrible problem. Yet these two groups don't meet most of the time leaving one group feeling abandoned and the other unappreciated. Sad but valid from either POV. If I am not mistaken, Les has stated in print in the past that she does not believe in taking government money. If that is the case, she has not applied for SSI for her disabled son, and I don't think any SSA disability app. has been filed for her husband. Plus, as I have pointed out several times, their disabled son could receive child's benefits from the father's account if the father qualifies for SSA disability. Because the son was disabled before the age of 18, he could collect disabled child's benefits for the rest of his life. Please, don't mistake her anger and frustration with "not getting any support she needs." It's out there. She just doesn't believe in that type of support.
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Deleted
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Post by Deleted on Apr 1, 2014 20:15:51 GMT -5
Then what does she want? I'm confused...
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Nazgul Girl
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Post by Nazgul Girl on Apr 1, 2014 20:20:30 GMT -5
This is an interesting article that I found about MIT graduates ( who are called " assortive thinkers " ) having a higher-than-average incidence of children with autism. There seems to be some kind of genetic link. I remembered this because there was a story on the national evening news about MIT grads "seeming" to have a higher percentage of children with autism, but that that community was highly angered by the supposition. It looks like the supposition was correct.
www.wilsonquarterly.com/in-essence/decoding-autism
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Miss Tequila
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Post by Miss Tequila on Apr 1, 2014 20:20:48 GMT -5
Gin, you just put your finger on one of the many missing links. On the one hand there are people like Les who can't seem to be able to get the support she needs and on the other hand there are people like your friend who work themselves silly just to try and solve this horrible problem. Yet these two groups don't meet most of the time leaving one group feeling abandoned and the other unappreciated. Sad but valid from either POV. If I am not mistaken, Les has stated in print in the past that she does not believe in taking government money. If that is the case, she has not applied for SSI for her disabled son, and I don't think any SSA disability app. has been filed for her husband. Plus, as I have pointed out several times, their disabled son could receive child's benefits from the father's account if the father qualifies for SSA disability. Because the son was disabled before the age of 18, he could collect disabled child's benefits for the rest of his life. Please, don't mistake her anger and frustration with "not getting any support she needs." It's out there. She just doesn't believe in that type of support.
Then I am so confused.
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Deleted
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Post by Deleted on Apr 1, 2014 20:33:59 GMT -5
If I am not mistaken, Les has stated in print in the past that she does not believe in taking government money. If that is the case, she has not applied for SSI for her disabled son, and I don't think any SSA disability app. has been filed for her husband. Plus, as I have pointed out several times, their disabled son could receive child's benefits from the father's account if the father qualifies for SSA disability. Because the son was disabled before the age of 18, he could collect disabled child's benefits for the rest of his life. Please, don't mistake her anger and frustration with "not getting any support she needs." It's out there. She just doesn't believe in that type of support.
Then I am so confused. I think she would like us researchers to snap our fingers and figure out what causes NOW, please and thank you, done. Cause really that is how science and research works.
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Nazgul Girl
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Post by Nazgul Girl on Apr 1, 2014 20:41:28 GMT -5
I think she has nowhere to turn, and has a very difficult life. But, if she would file three applications, one for her husband for SSA disability, one for her son for SSA disabled child's benefits, and one for SSI disabled child's benefits ( they used to get 2/3 of the amount of the regular SSI check because they were living at home, but the parents didn't have to meet SSI income guidelines, only the child ), she could have an easier time of it financially. I have done my best to help her and I hope she takes advantage of it.
I do think that she has a difficult life and is a very good mother. I totally praise her for that.
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whoisjohngalt
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Post by whoisjohngalt on Apr 1, 2014 21:19:17 GMT -5
I think she has nowhere to turn, and has a very difficult life. But, if she would file three applications, one for her husband for SSA disability, one for her son for SSA disabled child's benefits, and one for SSI disabled child's benefits ( they used to get 2/3 of the amount of the regular SSI check because they were living at home, but the parents didn't have to meet SSI income guidelines, only the child ), she could have an easier time of it financially. I have done my best to help her and I hope she takes advantage of it.
I do think that she has a difficult life and is a very good mother. I totally praise her for that. Oh lord, I know better than to post this, but here goes.... If anyone reads any of my posts, my feelings on govt help are well known. That being said, if she is not filing for disability due to some pride, she is not being a good mother in a sense that she is making life more difficult for herself, which clearly makes her very angry, which can not possibly be good for anyone, including her son.
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Nazgul Girl
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Post by Nazgul Girl on Apr 1, 2014 21:26:32 GMT -5
I think she has nowhere to turn, and has a very difficult life. But, if she would file three applications, one for her husband for SSA disability, one for her son for SSA disabled child's benefits, and one for SSI disabled child's benefits ( they used to get 2/3 of the amount of the regular SSI check because they were living at home, but the parents didn't have to meet SSI income guidelines, only the child ), she could have an easier time of it financially. I have done my best to help her and I hope she takes advantage of it.
I do think that she has a difficult life and is a very good mother. I totally praise her for that. Oh lord, I know better than to post this, but here goes.... If anyone reads any of my posts, my feelings on govt help are well known. That being said, if she is not filing for disability due to some pride, she is not being a good mother in a sense that she is making life more difficult for herself, which clearly makes her very angry, which can not possibly be good for anyone, including her son. I agree with what you state, W.I.J.G. I wish she would just file the apps. because I think the quality of life for their family would improve. I think in her case the situations with both her husband and younger son warrant govt. help. I wonder about the dichotomy of her thinking vs. posts on the govt. not doing enough, but I can't resolve it.
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whoisjohngalt
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Post by whoisjohngalt on Apr 1, 2014 22:37:11 GMT -5
I have less than zero knowledge on how that works, I was just trusting Nazgul's post that Les would be eligible if she applied.
I do know that my FIL had to work in Walmart for a bit to get all this 40 qtrs, but he needed that for Social Security, not disability
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whoisjohngalt
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Post by whoisjohngalt on Apr 1, 2014 22:55:53 GMT -5
I have less than zero knowledge on how that works, I was just trusting Nazgul's post that Les would be eligible if she applied. I do know that my FIL had to work in Walmart for a bit to get all this 40 qtrs, but he needed that for Social Security, not disability when I got my letter - it was - you have now earned enough credits, here are the benefits.... disability of $x if you are totally disabled payment to kids if you die $x/month til they are 18 payment to spouse if you die retirement if you earn the same as last year and retire at a, b, or c age, benefits is $R, $S, $T per month huh, I just learned something new - thanks.
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resolution
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Post by resolution on Apr 1, 2014 23:57:11 GMT -5
If a disabled person has enough wage history, they can receive Social Security Disability (SSA). If they are disabled and haven't earned enough to qualify with SSA, then they can get Supplemental Security Income (SSI).
I am not sure of the rules for children drawing off of their parents. Sounds like Nazgul's plan would be the way to go to ensure they get everything they may qualify to receive.
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Deleted
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Post by Deleted on Apr 2, 2014 2:28:07 GMT -5
SSI - Payments to poor disabled folks. Income based for families.
SSDI - Payments for disability for workers with at least 40 quarters of work. If you are disabled your child can collect a percentage of your payment. If the payment is $2500 and you have two kids, then they pay each of you 1/3rd of the payment.
When kids turn 18 or graduate high school the payments stop unless the child is disabled then they can go on forever.
When a parent dies, the SSDI converts to Survivor's Benefits that all children are able to collect if their parents have died before they turn 18.
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Real world example. DH got about $3K per month SSDI. He got 1K and each child got 1K. When he died, the 1K for him was gone immediately and the kids moved to Survivor benefits of about 1K each. As they turned 18 the benefits stopped. For us, this was within 4 months for one child, so I lost 2K in income over that time.
Since my husband died I can claim on his record if I become disabled at 50 or later. Or, I can claim on my record which is likely higher because I was higher paid than DH.
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973beachbum
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Post by 973beachbum on Apr 3, 2014 6:41:09 GMT -5
I am pretty sure that if they qualify for SSI they are also automatically for medicaid. It can even be in addition to other insurance, not like the CHiP laws that require the child to not have had any other health insurance in so many months. If the husband or child get's SSDI they qualify for medicare.
That can be a huge help to a family dealing with medical issues.
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swamp
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Post by swamp on Apr 3, 2014 8:43:17 GMT -5
Interesting, I've seen on FB, multiple times, that it's Autism Awareness week. Even from people who don't have autistic children.
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Post by The Walk of the Penguin Mich on Apr 3, 2014 9:26:52 GMT -5
SSI is also means tested, you cannot have more than a certain amount in assets. SSDI is not, and you need to have worked 40 quarters to receive it.
You collect Medicare after being on SSDI for 2 years.
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whoisjohngalt
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Post by whoisjohngalt on Apr 3, 2014 9:35:05 GMT -5
Interesting, I've seen on FB, multiple times, that it's Autism Awareness week. Even from people who don't have autistic children.
You can't trust anything you read on FB
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Phoenix84
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Post by Phoenix84 on Apr 3, 2014 11:18:24 GMT -5
Vaccines in themselves might not be the cause. But there are too many families that have regressive autism. Not enough studies in my opinion. Listen to the families first, please. WE are on the front lines, so to speak. We know our children better than anyone. And do you know the cause any better than anyone? None of us do. I have Asperger's, which is considered high functioning autism, so I'm on the "front lines" just as much, or even more than you, and I don't even konw what the cause is. Like it or not, at this point any guesses and speculation on the cause is just that, speculation. I think at least in my case, it's largely genetic. I know my dad has some issues, and one of my cousins and one of my uncles had mental retardation, so I believe genetics played a factor. The fact that it afflicts boys more than girls would also indicate there is a genetic aspect. If it were just chemicals or vaccines than it would likely affect genders equally. I think diagnosis is a major factor. In the "good old days" it still existed, kids and adults were just labled as "slow," or "weird," or "stupid." The vaccine thing is just a myth that won't die.
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